I just started Cyclosporine [Archive] - ICN Support Forum - Interstitial Cystitis, Overactive Bladder, Pelvic Floor Dysfunction

IcyAngel23

07-08-2006, 05:24 PM

My dr was surprised by how quickly the sores and side effects appeared.
Well I did have a rough day today. I've been throwing up all day and can't keep anything down. I thought I was doing ok so I went to the Chicago White Sox game but I kept getting sick and dizzy. I lasted throught the game but now I'm paying for it. We got there at 11:30 and left at 4:45. Only thre bathroom trips and two were to throw-up so only one void in that amount of time. So my bladder pain isn't present right now but every once in awhile throught the day I get a bit of pain. I got the mouth sores the nest morning after taking the first dose. I used Scope and that Chlorseptic spray. So i"m very happy with the bathroom trips decreasing. I'm still not sleeping well but I think it is just the meds not the voids. So for now I"m happy to say it is helping but I don't want to get ahead of myself either. So for now I'm ok.
I've only been on it since Thursday night so I'm only taken four doses.
I must say today is the worst with throwing up, dizzy and hot flashes. Nothing bad enough that I'd stop it. For the mouth sores I've discovered Cold Stone Creamery Watermelon Sorbet and bubble gum. I like gummy bears in there and for only $1.50 for a kid's size. The regular size it too big. So I get two kids one for now and other for later. They really soothe the roof of my mouth.
I'll post more as it comes up.

ICLori

07-09-2006, 04:33 AM

Hi, Icy, thanks for letting us know how you are, I'm really worried for you. Maybe it's for the best that you started out on the low dose. I just read a post of yours awhile back that said your uro wasn't starting you out on a low dose, that you were going to be doing 2.5 to 3 per day because that's what the studies showed - guess he changed his mind - it's probably good that he did because you are getting such horrific side effects so early on. This really is unusual to have side effects so early, you poor thing.

I'm so sorry you are sick to your stomach, I went through that too. Ask your doctor to prescribe Phenergan for that - it works like magic. It makes you sleepy though. Anyway, that will fix you right up, no problems. And the side effects will hopefully dissipate with time.

I hope the mouth sores go away with time, too...the ice cream sounds like a good remedy for stopping the pain! :)

I'm glad you are still getting some benefit from it (that's amazing it's working so quickly on you!) even though the pain is still not completely gone 100% of the tme.

I'm glad you aren't having to void very often at all, either! I'm amazed, I've never heard of it working so quickly for anyone before, that's incredible!

Blessings,
Lori

IcyAngel23

07-09-2006, 09:05 AM

I just looked at my prescription box on it says Cy Modified. Not A I'm wondering if they are the same. I just got my period today which is normally a horrible few days. Today I'm really tired and very dehydrated. I've taken to Gatorade. My dr isn't on call so other drs in his pratice are. They have no idea what my uro is doing. They thought I was making my treatment up. I thought they were going to call him and say *** are you doing. The throwing-up isn't that bad. When I take meds for nausea it just makes my stomach hurt but this way I throw-up and I feel better. I'm holding down sorbet,jello and ice cream. I can't do much or get out of bed without getting dizzy after awhile.
The new things that are bothersome is like a charlie horse in my jaw,arm and legs. They last only a few mins. but feel like a huge knot. No bladder pain and slept thru the night. I had a hard time due to my stomach but no my bladder. I only had one trip to the bathroom during the night. They only thing that really bothers me is the acne. Not too bad but I'm really use to clear skin. It brought me back to high school.
So I'm one who really puts all my side effects down. I've lived with so much pain and lose of sleep due to freq/urg. None of this is bad but just either uncomfortable or bothersome. It's been a long time since I wanted my mommy but it made me feel better having her take care of me. Mom's are the best.I'm 24 if I didn't put that out there.
Let me tell you I'm the one patient that seems to get weird side effects or I fall into the small percent that get the side effects. I'm just use to it. More than likely other won't have these problems. I'm just an inigma. So feel free to ask me anything about this drug or IC. I'm always happy to help. My life is an open book. Well I'll update later if there is anything new.

ICLori

07-09-2006, 09:15 AM

Hi, Icy, cyclosporine modified is actually Neoral. What they did is they put special oils in with it to help absorption. Before, with the old, unmodified cyclosporine-A, they were having problems with people not getting enough of the medicine into their systems. So they added these oils to help the body digest and process the Cyclosporine, and called it modified (Neoral is the brand name.) But it's the same stuff. I'm taking Neoral too.

I'm so worried about you - especially with the dehydration, that can be so dangerous. And if you continue throwing up, it could lead to an electrolyte imbalance (low potassium, etc.) which could lead to a heart attack and death. Please, please, I'm begging you, on Monday if this is still going on (the throwing up) please call your doctor and tell him what is going on. I know you are drinking Gatorade, which may help, (if you can keep it down)...but I'm still worried. How many times per day on average are you vomiting? Even if you drink gatorade, you still might be in danger...best to call your doctor. Really, throwing up is much more dangerous than you think, especially if it goes on longer than just a day or two. Are you having diarrhea, also? That can be dangerous too, especially in combo with the vomiting.

Just wondering, when did the acne show up? You are getting so many side effects, it's awful. But I guess it's good that you are getting some relief from the bladder pain already. That's almost a miracle, I've never heard of it helping someone so quickly! I also have never heard of side effecs striking so quickly, either, but your body just seems to be reacting really strongly to this.

Well, I hope you feel better side-effects wise soon.

Blessings,
Lori

IcyAngel23

07-09-2006, 03:23 PM

The ance started a day or two ago but I didn't really notice. Today I only vomitted twice and I'm keeping little bits of food down. My mouths sores are what is really keeping me from eating. It burns when I eat or drink. I've had a a bit of bladder pain tonight and it hurts. Could be my period and bladdar all together. So I'm still hopeful that this is going to keep working and getting better. Thanks for your support. How are you feeling these days? Take care. Hope this works for you too.

ICLori

07-10-2006, 03:32 AM

Hi, Icy, I'm sorry you are going through all of this. Please call your doctor if it continues! The worst of the side effects should be over within a couple of weeks. Are you taking the CyA with a full meal (taken AFTER you eat the meal, not before)? I find that really helped me with the nausea.

I'm actually feeling better these days...no bladder pain in the mornings, etc. I'm almost starting to think that maybe it's starting to work a little bit. I still have a bit of bladder pain at night, but not bad. I'm getting there, I think. Maybe in another few weeks, I will know for certain if it's helping me or not.

Blessings,
Lori

Bozema

07-10-2006, 08:00 AM

Angel-

As I posted on the other board, I hope the side effects subside for you soon. I too had an upset stomach when I started on cyclosporine and I also had a few bouts with the leg cramps. Most of these side effects are supposed to be temporary and hopefully they will subside for you soon.

Lori I believe answered correctly about cyclosporine modified. My package says the same thing as yours and I researched it and came to the same conclusion that she sent to you in the previous post.

Anyway, just letting you know that I'm rooting for you and hope you feel better soon.

-Laurie

IcyAngel23

07-10-2006, 10:06 AM

So far today I'm doing well. My stomach gets a bit quesy now about an hour after I take the meds. If I lay down and take a nap I don't get sick. I'm just really tired and weak. It is so hot and with me getting hot flashes it is driving me nuts. My air is broke and I'm hoping to get it fixed soon.
Thanks Lori and Laurie for your support.

Bozema

07-10-2006, 10:25 AM

Blech, Icy - I hope you air gets fixed soon. The cyclo also gives me hot flashes in my hands and feet - which has been yucky with the hot weather we're having and I'm sure combined with regular hot flashes would be just awful. The hot hands and feet did subside for me the last time I tried this drug after about 4-6 weeks. It is not as bad now as it was a couple weeks ago for me.

Lori's suggestion about taking it with food helped me too. I stocked up on soda crackers and ginger ale and it did help me get through that first queasy week or so.

Hang in there!!!

-Laurie

ICLori

07-10-2006, 10:37 AM

Hi, Icy, I'm so glad you are at least a bit better (keeping food down now). I'm very glad that your Mom is there to kind of keep an eye out for you, I know she'll help take care of you. (Some days I still wish I had a Mom, LOL, is that bad? Some days I wish I had someone to hug me and tell me everything was going to be okay.)

I haven't had the hot flashes (yet.) Isn't it weird how we are so individual with the side effects? My skin was super oily for a bit, but then it settled back down again. It was really grossing me out for awhile, though. I mean, it's no big deal, but my makeup was sliding off my face after a couple of hours and I kept having to wash my face all the time. Five minutes after I'd wash my face would be one huge oil slick. Now it's back to where it takes about 4 hours for my face to become an oil slick. Anyway, that list of side effects is incredibly long - almost anything can happen on this drug it seems like.

It's good that you are resting some, I think your body will adjust better to the CyA if you have lots of rest and don't overdo it or anything.

I'm sorry you are so hot and uncomfortable and still queasy and all. I know it's no fun. It says something about how miserable the IC pain was, that you can endure all of this!

I hope so much that it will get better soon. I truly believe it will. I'll bet you that by the end of two weeks, you will be feeling like your old self again! Except for that the bladder pain will be gone or much much less at least.

Blessings,

Lori

IcyAngel23

07-10-2006, 06:37 PM

Well this afternoon was a bit rough with nausea but it is gone. I actually ate more than ice cream tonight. Even the ice cream hurt my roof of my mouth. So seems like things are getting better. I'm lucky to have my mom to take care of me. No matter how old you get you will always want your mom to take care of you. So Lori I understand why you want your mom too. From the way I see I'm getting off easy with these side effects compared to IC. The pain always seems to come at night time. Not to bad at all. So Yeah me. I'm happy with the results. I'm just scared about getting sick. I'm like a germ magnet. As long as my cyclosporine levels, kidney and liver function check out I'll be very happy. That's what I'm nervous about.So how this drug seems to good to be true but when it comes to treatments I've had alot of let downs.I'm in good spirits and I hope this lasts. Thanks for your reply Lori. O hope you find relief too. I'm not a typical patient and somehow I reacted very quickly to it. This happens to me alot. My body reacts quickly but becomes immune to it very quickly. For some rason my body finds a way around the meds. My interstim worked so well that after a week my impalnt had to be adjusted because my body was finding a way around the impluses. MY dr looked at me like OMG that has never happend. After a few months I went thru almost all the adjustments and having to go in weekly to have to changed. So I'm use to quick results and quick let downs. So stay positive and focus on what you will be able to do without the pain. That's what gets me thru tough days.

ICLori

07-11-2006, 04:10 AM

I'm glad you can eat again, I was so worried for you! But I wish the mouth sores would go away soon! My husband swears by Listerine when he gets those. He says it hurts but it goes away alot faster.

I'm glad you only have pain at night, that's not so bad - it sounds like it's working a little bit at least, that's good!

I hope that your body won't find a way around this. I haven't heard of any cases of it stopping working on people, once it works, it always works, so keep your fingers crossed, and everything will be okay!

I'm like you, I've had a lot of disappointments and I hope and pray so much we don't get disappointed with this.

We'll get through this together, all of us!

Blessings,
Lori

IcyAngel23

07-11-2006, 12:42 PM

Thanks for the support Lori. The mouth sores are almost gone. Just a bit tender on the roof of my mouth. So it is healing well. My pain is really bothering me right now. A few hours ago I was fine. I've been up and around making dinner for my mom. So I"m sure that's why. My dad went to get the rest of my CyA cause the pharmacy only had 30 pills when I got them last week. He lives about 30mins away and his Walgreens was the only one with it so I had to get the rest there too. So he went out of his was today and dropped it all off. My comes in boxes of 30 does yours? So I got through 6 boxes a month. Well I'm hoping I'm not the exception to these trials as I am with every other treatment. Today is more pain and the voiding seems to be ok,still heres hoping. My body is just all over the place today. I'm doing well then Im' not and so forth. So I can say it is a bit better than before this drug so still happy with that. Starting looking for small changes. I notice nightime trips are less. I keep a voidng diary so I can keep a close eye on my progress. Hope your bladder is behaving today. I say mine is an uncontrolable child that nenver listens. My attempt at a but of humor. Take care

ICLori

07-11-2006, 12:53 PM

Hi, Icy, I think my count might be different because I am now taking the 100mg capsules instead of the 25mg capsules. I'm taking 100mg twice per day for a total of 200mg per day.

I'm glad your side effects are easing up, but I'm sorry your bladder pain is coming and going. It probably will take some time before it goes away completely. Hopefully with each day it will get better.

Blessings,
Lori

Bozema

07-11-2006, 02:21 PM

Icy-

You raise a good point for all of us taking this medication. Pharmacies rarely stock cyclosporine regularly, probably because of its short shelf life and storage requirements combined with the limited population that uses it. So if you are taking it, order your refills early, well before you run out. My pharmacist has to order it every time. It usually only takes a day or so, so I just plan on it.

I've been flaring this afternoon, but I've had a bit of the runs because I've been eating waaaaay too much summer fruit - it has been so good (thank goodness IC diet does not make much difference for me - except in this limited instance). But the combo of intestinal distress and IC flares do seem to go together for me, so I guess I'd better lay off the peaches, nectarines and cherries for awhile and let things settle down a bit. At least I know what I did to cause THIS particular flare. Fortunately, once my system settles down, so does the flare in these instances.

Have a good evening everybody-

-Laurie

ICLori

07-11-2006, 02:35 PM

Hope you feel better soon, Laurie.

I've been lucky with the military pharmacy thus far - they've had it in stock both times I've gone requesting it. I will see what happens in the future. I always refill a week early though in case they have to order it...

Blessings,
Lori

IcyAngel23

07-12-2006, 12:23 PM

Well today just sucks. I feel like crap and I'm just miserable. This heat is really getting to me. Early this morning I was vomitting and I was so dehydrated I was choking while I was vomitting. Plus my chest hurt like I had pins and needles in my chest afterwards. My allergies are all over the place. My face is all puffy and swollen. Well here is to another day!

Bozema

07-12-2006, 12:26 PM

Icy-

So sorry for another yuck day. As I wrote to Lori, it must be in the air. I'm having a fairly rotten day myself.

I hope tomorrow is much better for all of us!!!

-Laurie

ICLori

07-12-2006, 12:43 PM

I'm sorry everyone is having a lousy day. I hope things get better soon for all of us....

Blessings,
Lori

IcyAngel23

07-12-2006, 03:04 PM

That's weird that we are all feeling icky today.
Hope both of you feel better tomorrow.
I feel like I'm dying. The past two days I've been feeling worse. I guess I just have to wait for my body to get use to it. Today was day 6.
This is really kicking my butt and I'm not one to complain about pain or discomfort. I'm just so run down and I can't shake it. So tonight was worse than my bladder pain. Mostly because I hurt everwhere.
I looked at myself in the mirror today and I look like crap. I look like a cancer patient does on chemo. I have hair in fact this can make your hair grow faster. I know this is just one really bad day and I'm just venting. You ever get whiny and crabby? That would be me right now. I'll go in on Monday for my blood work so hopefully this is only temporary. I don't regret taking this at all!! I'm strong and determined to get better but this is sooooo not for the average ICer. This is for the end of the line ICers. Nothing serious but I'm jusat very uncomfortable. This is just different and I'm not sure what will come next from day to day. Bladder pain is predictable in terms of you know what to expect. This I'm jut fying blind. Hopefully I'll feel better tomorrow. I'm on no pain meds or anything like that .I'm taking flomax,atarax,celexa and wellbutrin xl. I've been strong for three years with very little if any pain meds. I know I must sound all whiny and confusing. I guess that's what this journal is for. To show the good with the bad. Today is just the bad.I'm sending out hugs to Lori and Laurie my buddies on CyA with me. Feel better.

Bozema

07-13-2006, 07:22 AM

((((Hugs)))) back to you Icy!

The first time I took this drug I had several days like the one you are describing. I felt rotten and looked in the mirror and said geez - I look and feel like an old hag!!!! I too wondered if I was destroying my internal organs, and yet when I did my follow-up blood work, everything was perfectly normal. I want to assure you that this phase does pass, and just because you feel bad, it doesn't mean your blood work will be off. It is an adjustment and it does make you tired and sick for a period of time but hopefully you will adjust soon.

It is weird we are all flaring at the same time. I have a lot of pain today but my attitude is better and I slept better last night so I am hoping the bladder cools off soon too.

I hope for your sake that you feel much better soon.

-Laurie

IcyAngel23

07-13-2006, 01:49 PM

Laurie-
Thanks for the pep talk. I knew there were going to be days like that and I'm committed to staying on CyA. I still can't believe I'm taking this drug. It took so long for my uro to give it to me because he wanted to be informed. We are all strong women who are determined to kick our bladders into shape.

My family and friends tell me when they have bad days they think of how brave and positive I am. Not because I suffer from Ic but the fact that I'm not willing to give into this disease. I'm only 24 and one of my friends was asked who influenced her the most, she chose me. That threw me for a loop. I asked he why me. She told me that no matter how many obstacles blocked my path I stayed the course. So to my friend Annie who gave me the best comliment a person can give you.
Well today I'm flaring. I'm veen eating crackers and 7up because my stomach is always icky. It used to be only around the time I took my meds but it seems to extend from dose to dose. Hope all of the CyAer's are having a better day than me. I'm sending hugs your way.

ICLori

07-14-2006, 02:13 AM

We are brave for trying this! :) Icy, I sure hope you and Laurie both feel much better today. I think your side effects are almost through - just a few more days maybe - I think by two weeks my side effects were finished, and that's what another person said happened to them, too, on the transplant boards. They say the first two weeks are the roughest, but after that it's better. So just hang in there a few more days, you are almost there!

You are a very strong person, and you will get through this! :)

Blessings,
Lori
P.S. My bladder is still being the same....hopefully we will all get better soon.

IcyAngel23

07-14-2006, 09:24 AM

Well today is day 9. I'm getting use to the side effects but my bladder stll huts too. My stomach is really all that is bothering me right now and the fact that I'm so tired. My allergies are all out of wack too. My eyes and face were all swollen when I woke up. I'll just have to up my atarax.The one downside with this drug is that you can't take asprin,ib prof and aleve. Tylenol is ok but doesn't work as well for me as the others do.
So hopefully we will all be feeling well soon. I rented Failure to Launch with Matthem McC. and Sarah Jessica Parker. This is the perfect light comedy for a friday night.It made me laugh so hard and laughter is the best medicine.

Bozema

07-14-2006, 09:41 AM

Hi Icy-

Yeah that's what we need, a movie that makes us laugh so hard it makes us pee, LOL.

I hope you have a good weekend and the side effects settle down soon.

-Laurie

ICLori

07-14-2006, 09:51 AM

Hi, Icy, you are almost home now, just maybe a few more days of the side effects and then you will be much better! Your bladder will probably be feeling better after your cycle, too.

You know, I'm really tired on this med too. I had an initial burst of energy when I first started it, which made me think it was really working to take away the autoimmune fatigue that I felt came with this disease, but that wore off and now I have worse fatigue than ever. I mean, I literally have spent almost all of this day in bed so far. Because it feels like a huge effort to even sit up. So I am lying down most of the time lately. I sure hope this level of lethargy doesn't continue. It's listed as one of the more common side effects - lethargy.

Yeah, we all need a good movie. I'm thinking of going to the new Pirates of the Caribbean flick this evening. Don't know if it's any good, but I enjoyed the first one.

I hope we all feel well soon. Although it looks like, realistically, this drug can take anywhere from 1-6 months to work (maybe even longer?) depending on the person.

Blessings,
Lori

IcyAngel23

07-16-2006, 08:28 PM

ICLori

07-16-2006, 09:00 PM

Wow, Icy, that's awesome! I'm so glad you are feeling better, both side effects wise and also bladder wise. Sounds like the side effects were worth it, even though I know you were really suffering there for awhile. I'm so glad that you got a really good day like this! But don't be scared or anything if you still have a bad day here or there, Laurie said that she had ups and downs for several months before she really felt all the way better.

That would be great if you became a uro and specialized in IC - we sure do need some advocates out there who understand what we are going through!

Like you, I think CyA is a really promising treatment for IC, but I know it's not a cure. You know why I know that? Because IC is presently incurable. There are only treatments that make it better - no cures. What that means is, you will never be able to go off CyA (you may be able to lower the dose substantially, however) without the symptoms returning. Remember how Laurie went off the CyA, and within 2 weeks she had a full-blown flare again? That's because CyA isn't a cure - it's only a treatment. If it were a cure, you'd be able to take it once and never have to take it again, and then the symptoms would never come back. But that's not how it is - you have to stay on this drug if you want the symptoms to stay away. That being said, it sounds like a very good treatment for your IC, and I hope that everyone of us who tries this, gets similar results!

My bladder has been better than usual the last couple of days, and the side effects have also lessened for me (today I felt human, and not horribly tired, for once) and I am starting to feel hopeful again that maybe this will work for me.

Blessings,
Lori

IcyAngel23

07-16-2006, 10:30 PM

Lori
Well my dr has talked to others who after two years on CyA and get off of it are still symptom free. You need to be on it for awhile. The theory is that the drug stops your body from attacking the good cells as well as the bad. I have a postive ANA so I do have an auto-immune disorder. I have that anti-body in my system. Not everyone with IC has that anti-body. That's one of the reasons my dr caved in and prescribed it. I'm not going to be on CyA forever in fact somewhere around 1-2 years. You take CyA at a stable dose for a year then slowly work it out of you body over the next year or so. This theory is still very new but there have been patients that is has worked on. CyA is new to the IC community so a few patients that have seen results like that doesn't all of a sudden become fact nut that's why I said it might be a cure for me.
I do expect good and bad days and this weekend has given me the push into really believing this could be the one.
Thanks for the reply. Hope you start getting results like me.

ICLori

07-17-2006, 04:26 AM

Wow, really? That's great! I hope you will be one of the ones whose IC stays away after treatment with this. Like you, I also have a positive ANA (not lupus, not RA, they didn't know what it was) and I too think my IC is autoimmune.

I'm still getting a little bladder irritation at night, but my bladder has been better than usual the last few days, for which I'm grateful. I'm hoping that maybe in another month or two, I won't have any bladder irritation at all. Keeping my fingers crossed!

Yeah, I wish we knew more about CyA on IC. I feel like all we have is each other to compare results with, there really aren't that many studies out there. So your doctor has worked with other IC patients with CyA? I thought you were one of his first patients on it?

Well, just be open to the possibility that it might come back. According to this study, most people who discontinue CyA, have their IC come back. That's why I plan to just stay on it for life (unless a better remedy comes around.)

Here's the quote from the study:

Of 23 total patients 20 reported no bladder pain on cyclosporine A treatment and 11 patients stopped treatment due to a good clinical effect. In 9 patients symptoms recurred within months but disappeared again after cyclosporine A treatment was restarted.

Cessation of medication led to recurrence of symptoms in most cases.

Here's the entire study:

Long-term outcome of patients with interstitial cystitis treated with low dose cyclosporine A.

Sairanen J, Forsell T, Ruutu M.

Department of Urology, Helsinki University Hospital, Helsinki, Finland.

PURPOSE: We evaluated patients with interstitial cystitis who had been on cyclosporine A treatment for at least a year. Symptom improvement on micturition charts and subjective expression of bladder pain were recorded. Side effects and safety of medication were evaluated. MATERIALS AND METHODS: A total of 23 patients (20 females and 3 males) fulfilling National Institute for Diabetes and Digestive and Kidney Diseases criteria of interstitial cystitis were included in this study. Age of patients at followup was 65.7 +/- 7.6 years (mean +/- SD). Mean followup was 60.8 +/- 35.7 months. Before starting cyclosporine A treatment multiple first line therapies had been tried without clinical help. RESULTS: The number of voidings in 24 hours was 20.8 +/- 6.3 before treatment. After a year of cyclosporine A treatment it was decreased to 10.2 +/- 3.8 (p < 0.001). Maximal bladder capacity increased from 161.8 +/- 74.6 to 360.7 +/- 99.3 ml in a year (p < 0.001). Mean voided volume increased from 101.4 +/- 42.7 to 246.4 +/- 97.9 ml (p < 0.001). The effect was maintained throughout followup. Of 23 total patients 20 reported no bladder pain on cyclosporine A treatment and 11 patients stopped treatment due to a good clinical effect. In 9 patients symptoms recurred within months but disappeared again after cyclosporine A treatment was restarted. Side effects of medication were infrequent. CONCLUSIONS: Cyclosporine A treatment was safe and effective in treating interstitial cystitis. The achieved therapeutic effect was maintained in the long term. Cessation of medication led to recurrence of symptoms in most cases.

Anyway, it's important to me to quote this study because I don't want anyone getting the idea that everyone can just take CyA for a year or two and they are cured for life - these patients took CyA for at least one year (some of them had been on it longer) and 9 out of the 11 who stopped, had a recurrence of their symptoms within months. I just don't want to set anyone up for a disappointment.

I surely do hope that you will be one of the lucky ones who can discontinue CyA with no recurrence, but I don't think that everyone will be so lucky and I want to make sure that anyone who chooses to take this medication, has the benefit of reading the studies that have come out regarding this.

Blessings,
Lori

Bozema

07-17-2006, 09:08 AM

Icy-

So glad to hear you had a wonderful weekend. Goodness knows, you earned it.

Lori pretty much said everything I would say. Don't be discouraged if you get a few setbacks along the way - I have had good days and bad until things finally settled down for good (and then I had to go and quit - duh!!).

I think my long-term plan is to stick with the Cyclo, lower the dose when I finally get my symptoms back under control and then play it by ear as far as long-term use. As this drug gets more and more use in the U.S., I suspect there will be more and more data about its best usage in terms of dosage, length of treatment, likelihood of remaining in remission if you go off it and so on. At some point, somebody is going to figure out WHY drug this drug works on IC (and it will likely be an auto-immune connection) and that in turn may point to other treatments that might even be better. Cyclo's effectiveness with IC may be the key that unlocks a lot of doors in understanding this disease. With such understanding will come more respect for IC patients from the medical community, since it will be a disease with a cause that can be understood and perhaps measured. Doctors like things that can be seen, understood, and quantified and then treated. Disorders and diseases that are based on patient symptoms that cannot be measured, seen or analyzed are treated with suspicion and that's where the "it's all in her head" mentality comes from.

In the meantime, I'll hang in there and hope my flares settle down soon.

It would be a miracle to have a uro out there in the world who has IC and can understand its effects on patients. You go girl!!!

As for me, a little flared this morning (see the other thread) but things so far are better than last week.

Have a good week everybody-

-Laurie

IcyAngel23

07-18-2006, 06:51 PM

Today is day 12 and I'm doing great. I had a bit of pain tonight but other than that I feel great. I finally got off almost all of my other pills and I must have been overmedicated because I was a zombie. Now I feel alive and I
m looking forward to each day. I still have a bad days but compared to waht my bad days were before CyA it's nothing. So I've been so busy I totally forgot to get my first blood test done on Monday. So that's what I'll have to do tomorrow. It's so hard to remember because I have to and get the tests done one hour before my next dose. So by the time I remember it's ready for the next dose. Well I'm setting my alarm for it tomorrow so I'll remember.Hope everyone is having a good bladder week.

ICLori

07-19-2006, 04:58 AM

Hi, Icy, I'm glad you are doing okay, it must be hard to remember exactly when to time the test and everything. :(

I'm sorry you are having some bladder irritation today. I keep telling myself, it takes 6 months (or maybe even longer) to really get the full effect, so...we both still have a ways to go. It will get better. You might still get some bladder irritation days like this here and there on the way, but I'll bet six months from now, you won't have any more bladder pain at all!

Blessings, hope you feel better soon,
Lori
P.S. I'm still battling nausea for some reason. Don't know why the nausea is so persistent this time around with the raised dose...maybe my tummy just doesn't like CyA...?

Bozema

07-19-2006, 10:42 AM

Hi everyone-

Icy - glad you are doing so very well. I can tell by the tone of your posts that things are going well for you. I hope it continues.

I am grouchy today. We are having one of those crisis weeks at work that every time you turn around there is another massive problem to deal with. It's hot and humid (very unusual for where I live) and the building I work in is the former officer's quarters of a former Marine base and was built in 1942 and has no air conditioning - very unpleasant. At home, the fence war rages on and DH are grouchy at the other people involved and even with each other. I am also fighting with my insurance company - a long story I definitely won't bore you with. I am wondering if anyone out there can be polite, decent and reasonable anymore. Basically, it's just a bad week.

Not surprisingly, I am a little flared today. Glad it's not a monster - at least not yet - prolly the cyclo is starting to kick in - given my stress level, this flare should be off the charts by now. I used my physical therapy session to work off some of my latent hostility to the world this morning, which I'm sure was a good thing but might have kicked up my flare a little.

I just realized this moment that tomorrow is my mother-in-law's birthday and I've done nothing for it. Better get on that right away, she is a sweetheart and always remembers mine. DH has a meeting tonight so he can't do anything. Yikes.

Gonna go home tonight and have a glass of wine. If nothing else, I'll sleep tonight, and hopefully tomorrow will be a better day.

I hope everybody else is having a much better week than mine.

-Laurie

ICLori

07-19-2006, 01:10 PM

I'm so sorry you are having a bad week (((HUGS))) I hope things get better soon.

My nausea is out of control :( But hopefully I'll be better eventually.

Blessings,
Lori

IcyAngel23

07-19-2006, 01:32 PM

Yeah everyone. I just got a replyto my Pm to Jill. She has given us a thread in the experimental treatments section. So we are that much closer to srpeading the word.

Bozema

07-19-2006, 01:45 PM

Awwwwww - Lori - I'm so sorry. I hope whatever has got ahold of you passes quickly. I think it's a good bet it's not the cyclosporine but rather a bug or something you ate, especially since the previous nausea you had wasn't that bad and it ended some time ago. Anyway, sending healing thoughts and hope you feel better soon.

Hooray on the new thread!! I'll go look for it. We're still experimental, but maybe we'll get noticed a little more and now we have a permanent home.

-Laurie

IcyAngel23

07-19-2006, 08:07 PM

Hugs all around!!!!! I never heard back from ICDonna about the forum so I PMed Jill last night and here we are today with it's own topic thread. Sorry to hear you're not feeling well Lori. Stay positive and think good thoughts. I know that's easier said than done. I'm just curious if the reason I'm getting results so quickly is that I'm 24. I know the younger you are the more resilant your body can be. That's the only thing I can think of that it's helping me right away. My age was a selling point for my uro so I'm wondering if that does really matter? Just a thought. For a long time I didn't feel 24 infact I felt like an elderly women.
Well I think I'm so much better when I don't eat. It always seems like after I eat anything I get all nauseous and pukey. My eating habbits have drastically changed too. I eat maybe one meal a day and a snack or two. I'm just not hungry and it makes me feel sick afterwards. I know that isn't the healthiest way but I'm still in the transition stage on this drug.
So I set my alarm and I'm going to force myself to go get my kidney&liver tests done. I'm so absent minded lately. It coukld be the fact that I feel drunk all the time on this drug. I feel giddy and flighty. I did have to stop driving a few days into it but now I'm good to go.
So I feel like I have a new lease on life. I plan of having tons of fun. I was so depressed the past four months. My boyfriend of six years broke up woth me,I lost a baby and I was told there was nothing else they could do for me. I believe there words were they could only make me comfortable. Wow I felt like I was being sent home to die.
I'm so sorry it's not working as well for others as it is for me. I'm banking on it will just take time for the drug to kick in. I had really thought about suicide and why was I doomed to live a life of pain. So I just kept going and prayed. I was at the end of my rope with no hope in sight.
For those of you who are going thru the same thing I was, hang on. I know it may seem hopeless but if CyA isn't for you then something else will come along. You just have to make it happen. You can't expect it to fall into your lap. Take that frustration and anger and focus it on finding new treatments.
I'm sure some of you are probably sick of my peepy positiveness but I just can't help scream this from the rooftops. I almost gave up and accepted my life. It doesn't have to be a life sentence as long as you never give up.
I was the good girl type who followed all the rule and had everything planned out. Well my plan crashed an burned. I spent my whole life wanting to be a lawyer and was so close to graduating with three degrees. I went to college and got sick halfway thru sophomore year but still kept plugging away. 27 credits shy of graduating my body just couldn't handle it anymore so I had to come home. I always had the thought in my mind that I'd love to be a dr but I hated dead bodies and disecting them. So I just pushed that aside for what I thought was my life long dream of being a lawyer. It's weird I just started to accept that I should be a dr and become a uro who specializes in IC and here I am literally weeks later getting better. So I guess this happend for a reason and maybe I'll be happier as a dr. I know the dark cloud that was hovering over me is now gone. I feel so free and I'm not afriad of going to med school.If I can survive IC then med school should be much easier. We as ICers are the strongest people I know.I don't know how I survived this but I haven't met an ICer who was weak.
So if anyone has any questions I'll be happy to answer them or just listen. If I don't know I'll find out or ask the other two who are on it too.
If I could I'd wear a t-shirt dispalying CyA but I think it's a bit much. I'm just so happy and I don't want others to suffer like I did. Life is hard witohut IC but adding that can be back breaking. Stay strong and love yourself.
I celebrate the small improvements because they are so important to me and you should too. Lots of small improvement lead to big improvements.

Bozema

07-20-2006, 04:07 AM

Icy-

You go girl!!!!!! Wow, you sound a lot like me -me 24 and me again at 43. I suffered from good girl syndrome my whole life and tough girl syndrome too, taking on everything and expecting I could handle it and succeed. I had my first professional setback about 5 years ago, and in typical fashion, I used my frustration to go after my Masters degree which I finished a couple years ago. Then last year I suffered not one but three major personal setbacks in a year. I needed an ablation and tubal ligation to stop horrible 3-week long periods I was having - not such a big deal on its own - but in retrospect it probably played a big role in what was to come. Then at the same time, we discovered that our house had substantial water damage to its foundation to the point that it was structually unsound, It was due to builder error but given the amount of time that had past, it was basically on our own dime (insurance does not pay for things like that). We had to move out to repair it and the whole thing was very traumatic - imagine watching as workers take a sledgehammer to your home and tear it apart bit by bit. Then, just as we got past demolition and we were underway with the reconstruction, my dad was diagnosed with lung cancer. All this and I was in charge of a major project at work with a tough timeline. To cope, I was getting up and going to the gym each day and working out like an animal, going to work and killing myself on the project (and frequently forgetting to drink anything all day), going home to the house each night to feed the cat who still lived there, check progress and confer with the contractor and then home to the rental where my DH and I would drink wine with our landlord-friends until it was time to go to bed. Each weekend, we would work on the house. Basically I trashed myself and my bladder and by September I was sick, really sick. I dragged myself to fly up and be with my dad as he had surgery (he has since had chemo and they believe they got all the cancer -time will tell - he's another survivor against the odds at age 82). Strangely my symptoms abated while I was with him and my mom, but they returned as soon as I got home.

By December I was a mess of agony and had to take leave from work. We didn't move home until New Year's weekend. It was about that time I found my current doctor. I wasn't getting the care I needed and I knew it, so I gathered my courage and called a cousin of mine that I really don't know who happens to be a urologist. He didn't know much about IC but he had a former partner who lives in my general area who did and he sent me to him. The rest is history.

My attitude is the same as yours Angel. Never, ever give up. Life is precious and its worth fighting for every single day. Life for me is still far from perfect and like you, I have had low moments and times of suicidal thoughts. Like you, my ability to concentrate and focus is poor at the moment. I've been back at work since April and the concentration issue is affecting me at work, but my boss has been patient and luckily things have slowed down a little, so for now I'm coping. I'm awfully tired and wish I could drop out for 6 months, but it's not really an option. My hope is that my health will gradually improve and with it, my stamina. I try not to do overdo, but sometimes I still do. But I want my life back and I am determined to keep fighting to the end. And I think I will succeed. And I think you will too Angel.

My original physical therapist who was trained to work with IC patients told me I needed to put tough girl away for awhile and go soft and rest my body. In one sense she was right. In order to heal, I had to go soft and give myself a break - not easy for me to do. But in another sense tough girl is the one who is saving my life - because she is the one that is determined to never give up and not take no for an answer.

I also know despite it all, I'm one of the lucky ones in so many ways. We have friends who were wonderful to us and rented to us cheaply when our house fell apart and let us bring our two big dogs whom I love like mad. We were financially ina position to make major repairs to an unliveable house without being destroyed. We aren't where we were a year ago, but we are OK and our house is beautiful and better than it ever was. My dad, who had one of the most deadly cancers (15% survival rate in the first year) is still here and may be cancer-free. My DH and I are still together despite all the hard things in the last year - though at times it hasn't been easy. My employer has been understanding and grateful that I simply didn't give up and go on disability but rather worked with me on working from home and finding ways to get my job done so I didn't have to quit and risk losing my insurance. I found the right doctor within months, not years and he is 45 minutes away. I found a PT extensively trained in pelvic floor and IC basically in my own backyard. And I am getting to try this drug that shows so much promise and appears to work for me.

Last night I noticed that I'm getting a little cyclofur, but I remind myself it is temporary amd will go away when my dose is lowered. No one else will notice it since it is very pale and fine. Yuck - but its small in the big picture.

Well time to get on with another day - today I'm a little less cranky than yesterday and I don't have as much on my calendar.

Wishing a healthy pain-free day for both of you-

-Laurie

IcyAngel23

07-20-2006, 12:33 PM

Wow Laurie-
We are alike in more way than one. When things get harder I tend to take more and more on to make up for the time off. I'm glad you have a wonderful husband who has stuck by you and a great bunch of friends. I think that my friends and family are the ones who really got me thru the pasy six months. I was the one who never asked or need help. I just did it all on my own and when I couldn't do that anymore I was surprised by my family/friends. They pretty much took care of me when I was just so broken inside. So in that aspect I'm so lucky. I feel sorry for those who are going thru this without a solid support system.
Today I've been feeling like crap. I can't seem to get ride of the nausea or stomach aches. So today has been very icky and I'm so tired. I'm not eating cause everytime I eat my stomach problems get worse. I stayed in bed today mostly due to my stomach and fatigue. I'm a little well alot cranky today. I was just having a string of good days that when I hit a bad one I don't know how i got thru everyday like that.
Sending hugs and prayers your way. We may be down but we aren't out.
Kristin

Bozema

07-20-2006, 01:38 PM

Dear Kristin-

Sending along lots of hugs and hoping tomorrow is a better day. Hopefully your insides settle down quickly. By the way, I've come to suspect that for me, rich or fatty foods tend to set off the belly aches most frequently. And, like you, I find that I tend to eat less while I'm taking this drug, or else I pay for it. In my case, probably not a bad thing. In any case, I haven't had any more upset stomachs for several weeks now, so hopefully you'll be past it soon.

I'm with you, thank goodness for friends and family - I couldn't have made it without them. My family is pretty far away and dad was sick too, so there was not much they could do to help me during my worst time - though my mom did help me purchase a laptop so I could work from home more easily - no small thing. My DH's family has been wonderful. Our friends have been amazing and I really have to hand it to my boss - she was great too.

Today is a little bit better day for me today, though still a slight flare going on, but not too bad.

Hang in there - better days are surely ahead.

-Laurie

ICLori

07-21-2006, 04:44 AM

You both are inspirations to me! I really admire both of you for being strong, intelligent, courageous women who won't let anything stop them from achieving your goals in life!

Kristen, what a beautiful, uplifting message! Thank you for encouraging everyone to not give up, to keep fighting against this awful, life-destroying disease. We don't have to lose the battle, not as long as we are willing to do whatever it takes to get better!

I am not quite as sick as I was (the nausea and diarrhea are finally gone, thank goodness) and I'm still a bit more tired than usual, but not too bad. Anyway, I seem to have turned the corner as far as side effects go, and what is even better news, is that for the past several (5-6 days) I haven't had hardly any bladder pain at all - only at night - and then only slightly. I only needed 1/2 of an Ultram last night. I would say my IC is at least moderately better at this point, and I'm a couple days shy of 4 weeks now on the right dose. So I am guessing that at 3-4 months, I might even be in full remission! That would be wonderful.

Anyway, I hope you both continue getting better and better - I am positive both of you will, absolutely - and that the side effects become less and less with each day.

I just feel like dancing and cheering now, because I am at the moment free of bladder pain entirely, and almost all the way free of side effects now, too!

This med isn't so easy to take at first - the first two weeks to a month or so are rough - but once you get past the side effects, and once you start getting better, it seems worth it...

Blessings,
and thank you both again for everything, I really appreciate you both so much,
Lori

P.S. Kristen, you are going to be an awesome uro, if you decide to pursue that path! There must be a psychological trick to working with cadavers - if other people do it, you can do it, too!

P.P.S. I had about two days of that giddiness too when I first started, it was the first couple of days - I remember that now - it was weird - I thought maybe I was just extra happy because I was happy to be on the med finally - but maybe not - anyway I had one moment where I went to the grocery store, got my purchase all bagged, and I was thinking, I should put my basket away, and I started to walk away and the clerk said "but you have to pay for the groceries!" I was sooooo embarrassed, I could have died, I mean I'd never steal anything in my life ever, I'd starve to death first, but I was just having this horribly absent-minded moment (it was weeks before I went back to that store, I was so embarrassed, but it's the closest store so eventually I did go back) Anyway the clerk just laughed at me, so I guess it wasn't such a big deal but talk about feeling like the dumbest person on the whole planet...sheesh...just absent-minded and feeling weird is all it was...

IcyAngel23

07-21-2006, 02:41 PM

Lori-
Thanks for saying my post was uplifting. I'm just fighting this like the rest of you. I find courage and support thru all of you. I'm glad there are a few of us doing this together.
I'm so happy to hear you're doing much better these days. I have been really tired the past two days. I've never been this tired before in my whole life. I figure my body is still adjusting and I must really need to sleep if I'm falling asleep at the dinner table.
The grocery store story really put a smile on my face, I the reason for that is I totally know what you're talking about. I'm glad I wasn't alone in that.
I want to thank Lori& Laurie for there positive words and support thru this and I hope other who try this can experience the love in this group.
Here is to a wonder and painfree weekend.....!!!!!
Take care. I want to hear about how the weekend went so try to have as much fun as you can.
Kristin

IcyAngel23

07-23-2006, 11:03 AM

Well I have to say the last day or so I've been feeling kind of crappy. Really tired and nauseated. I'm just resting and I'm somewhere like day 16 so I'm still in the thick of it all. From what I hear from Lori and Laurie is that it takes about a month or so to get leveled off with the side effects.
I was really depressed last night so I decided to go back on my anti-depressants. I was feeling better so I got off of them but I didn't take into account that I didn't deal with some of the emotionl things that came up the past few months. I just let them become backround in my mind and as soon as I started feeling better I thought I was home free. For those of you who don't know me and what has happend (I know we all have our own story and no one's is worse or more important that the others) my boyfriends (of 6yrs) broje up with me and I later found out I was pregnant. To make a long story short he got mad I didn't tell him right away but I was scared. So before I could tell him I had a miscarriage and he has reamed me about it ever since. I have horrible nightmares about him and I thought they were all in the past. Well I guess I didn't deal with it as I should've and off the meds it came flooding back. I'm putting this out there because IC isn't our only obstalce to over come. I've been on auto pliot for about a year and when you isolate yourself it takes time and hard work to jump back in. I jumped too quickly and thought as soon as I started feeling better my life would magically be like it was before. You have to work and realize that this disease effects not only your body but your mind as well. I've been heavily medicated (I was taking three anti-depressants) since the whole hoopla and I tired to pretend that my IC didn't damage other parts of my body.
For those of you who are suffering and wanting relief, I hope you find it. I thought my path to get be back on track was alot shorter than it really was. So remember that when you start to feel better that, you will have a long rod ahead of you. The bladder is just one component in your recovery. We all know that your mental state isa big part of IC but I just wasn't ready for the flood gates to open up. I've been numb for the past year and I know it was my way of protecting me. If I wasn't numb for all the traumatic things that happend I might not be here today sharing this with you. Our bodies are very smart and know what we can handle and what we can't. My body was just putting those issues on ice until I could.
So keep that in mind.
I just want to tell others what to expect and that you're not alone in all of this. This community had brought ICers from all around the world together in one spot to not only educate but to support each other in our time of need.
So I thoguht my journey to normality was going to be a swift one but with my luck I can never do things the easy way. Here's to all ICers who are struggling!! Hugs and prayers are coming your way. Love all of you and consider you some of my closest friends. I can talk to you and you understand. Some of my friends I've had for over ten yrs want to help and understand but it's impossible. So thanks for being there for me and everyone else who needs a boost from time to time.
Take care.
Kristin

Bozema

07-23-2006, 11:07 AM

Thanks also Lori for your kind words. Having the two of you to go through this with has helped me so much and kept me grounded during all the ups and downs of this treatment. So the feeling is very mutual.

I am busy having fun this weekend - we have had dinner wirth friends every night since Thursday and again tonight and tomorrow. I also went on a bike ride this morning, which made me very happy.

That said, I'm pooped out too. Having too much fun but also the heat is tiring. After my bike ride and shower, I was wiped out by 10 am. and ended up taking a 1-hour nap.

Bikie that I am, I've also been getting up early to watch the Tour de France and Floyd Landis' performance over the last few days is totally inspring. The moral of the story that I take away (especially since he has grinding hideous pain in his hip) is never, ever give up. A good lesson that we are all living right now.

Hope the weekend is going well.

-Laurie

Bozema

07-23-2006, 11:21 AM

Kirsten-

I just read your post which came just moments before I posted my last one. It sounds like the last year was a dreadful one for you too. You are right that it takes time for your mind and body to heal from the traumatic things that have happened. You need to be kind to yourself and take that time to let your mind and body heal. You will get there, but for now, be patient and kind to yourself.

I am so sorry about your boyfriend and the miscarriage. That is a lot to deal with in a pretty short amount of time. I do believe that things happen for a reason, even if we can't understand it at the time it happens. And it seems that now your life is slowly finding its direction again and taking care of yourself and loving yourself needs should be your first priority right now. You have talked about going to med school and moving on with your life and perhaps the bad things that have happened have opened up new opportunities for you that you would have never considered before. Funny how life works that way.

Take care of yourself and hang in there. I do believe good things are ahead for you.

-Laurie

ICLori

07-23-2006, 11:53 AM

(((HUGS))) Kristen. I agree with Bozema, that's an awful lot to go through in a short amount of time, and with IC on top of it. You are right, your body was keeping you numb until you were well enough to be able to deal with the substantial trauma that you've suffered.

You are a very smart young lady for going back on the antidepressants - that will help smooth out the rough edges as you deal with all of this - I was wondering, do you have anyone you could talk to, like a counselor? You deserve to have the very best care, including care of your heart - your heart has taken a real beating and you deserve to have someone who can help you heal.

I know that in time, life will bring you another, better partner - one who will support you and not leave you when you need him most - and hopefully if you wish it, life will also bring you healthy babies. I know that doesn't make the loss any less severe, but I hope for good things in the future for you, and feel confident that they will be forthcoming.

I'm sorry, too, that you are having a flare-up again - like you wrote, it's to be expected this early on in treatment, unfortunately - but hopefully the flare will be short-lived and you will be back to feeling much better soon. And I'm sorry the side effects are getting you down, too - they really do suck. Blech! Nothing worse than nausea. I hope that goes away soon too. I'll bet it will.

(((HUGS))) Hang in there, sweetie, everything will turn out okay.

Blessings,
Lori

ICLori

07-23-2006, 11:55 AM

Hey, Laurie, sounds like you are doing great! (Except for the fence thing etc., which must be aggravating as all get out.) Biking! Wow, that's terrific! I'm going to start going to the gym after my in-laws visit (they are coming on Friday and staying through Tuesday, and I'm already nervous about the visit, LOL.)

It might be the heat tiring you out, or it could be the side effects from the CyA - I have felt more tired than normal the last few weeks on CyA.

Hope you continue getting better and better each day!

Blessings,
Lori

IcyAngel23

07-23-2006, 06:39 PM

Lori& Laurie

Thanks for your kind words and support.I do have a psychologists and psychiatraist (ok well spelling was never my fortay). I'm getting best treatment money can buy. My parents hav really made sure that my health came first and with my dad's insurance being SO GOOd it's didn't leave my parents broke. The only person I know with a better insurance is my brother(and you too Lori) but it's because he is a Marine. So my insurance is up in Novemeber but hopefully if I can be considered a disabled dependant and stay on longer.
I have a few saying I like to say to keep myself in good spirits.
"Take me as I am"
"Maybe this year with be better than the last" (from one of my fav songs by Counting Crows) So my dad knowing that I've had a crappy year went out and bought me primo tickets for my fav bands Goo Goo Dolls and Counting Crows. I have 22nd row in the middle so I'm so excited. It's Aug 18th so it's not too far away. He spent like $300 on two tickets.He was never really around for me growing up and seeing how sick I had gotten he decided to be the dad he wasn't before. My parents hav been divorced since I was 5 so I've always been very independant. I was always afriad the love of my life was going to leave me like my dad did when I was younger. I guess I need to focus on the fact that he did leave but he came back. I had abandoment issues but my dad really stepped up when I really needed him. My mo of course deserves a metal or something for the scarfices she endured to make my life better. So I have two wonderful parents and I really feel for those who don't have their parents to comfort and take care of them. I'll never be too old for the comfort of my mommy. I may be 24 but I'm just a scared little kid at heart that wants her mom to make it all better.
It's hard to think that two weeks after my 25th birthday in Nov I would've been a mom. It's just something I've been thinking about. I'm out and about more and I see pregnant women or mom with their kids.
When the time is right I'll have more children and I'll be in better healthwise to take better care of them. So yes i do believe that hings happen for a reason. I have a tendancy to project my life on these boards. I'm so grateful that i have such wonderful women to keep me in good spirits. Plus writing about it is so much easier and is very good for my soul. So sorry to bore you. I'm sure you have your own stories and I'm here if you need an ear to bend. Take care. Thanks again Lori& Laurie.
Kristin

blondie45

07-24-2006, 01:39 AM

Hang in there the best you can and remember things just have to get better eventually!!!!!:angel: :hi: :bunny:

IcyAngel23

07-24-2006, 03:15 AM

Thanks Blondie

IcyAngel23

07-29-2006, 07:38 PM

Well I make this short cause I feel like crap. I do have a bit of a bug. Nto sure what it is but my fever is down so that's good. All of my syptoms have come back but I"m sure that has to deal with me being sick. So hopefully in the next few days I'll feel better. i just wanted to post to let you know I"m surviving and I'm not goingto let this little case of sickness get my down. Take care all of you.

Bozema

08-01-2006, 03:48 AM

Hi Everyone-

Just checking in to see how everybody is doing.....Icy - how are you feeling?

As for me, I'll keep a long story short. One of our doggies got sick over the weekend, necessitating a 45 minute drive at 3 am Sunday to the nearest emergency vet clinic. She's OK now - she had severe gastritis, probably from eating something really bad - possibly part of a dead bird because she brought us a crow's foot (not the kind on your face either!) the night before. I drove down again and picked her up the next evening. But the exhaustion, stress, sitting on a not-so-comfortable seat for over an hour at the clinic and the driving really flared me up. Better today so far.

I'm thinking about taking next week off from work and getting a nice long rest. Next week will be 8 weeks on cyclo. I'm really tired and I think working hard is impeding my progress.

The heat wave finally broke and that is a plus for everyone's well-being. I like hot summer weather and all that, but this was crazy - 111 degrees with high humidity is way too hot even for me. We are in the 80's now with cool foggy mornings. It could be a few degrees warmer, but then I guess I'm never happy.

Also, I graduated from PT yesterday. I was thinking the time had come and the PT said he'd reviewed my case this weekend and we both came to the same conclusions independently. I joined the gym associated with the clinic so I can continue to use the specialized equipment on my own (I know my routine just fine and don't need to be supervised anymore) and it will cost a lot less, even without insurance reimbursement. The PT said to check in with him every couple weeks and he'll monitor my progress and change up my routine to keep it interesting and keep me progressing. We'll also save the remaining visits I have left on my insurance plan in case I need to go in for pain relief from time to time. I feel good about reaching this milestone.

Anyway, hoping everybody is hanging in there OK.-

-Laurie

ICLori

08-01-2006, 08:52 AM

Hi, Icy, sorry to hear you aren't feeling well, I hope you are better now or will feel better very soon.

Laurie, I'm sorry about your dog being sick, but glad that it wasn't something really serious or anything. I'm sorry that you are flaring, too. But you are almost there - another month and I'll bet you will be just about flare-proof!

I got into a flareup (minor, not really too bad) for several days too, probably a combination of stress and it being right before my period when my IC was always at its worst.

I'm better now...just kind of tired though after my in-laws visit, taking it easy.

Hopefully we will all be feeling much better soon.

Blessings,
Lori

IcyAngel23

08-01-2006, 07:33 PM

I'm alive. Yeah I'm finally feeling a bit better. I was having to cath myself for three days but now I can void. So it's just taking me longer to get better.
Lori- Sorry to hear you're in a flare too.
Laurie- Sorry about your dog glad to hear it's not too bad. Sorry for your flare too.
Well how is everyone doing today. Having any trouble or getting sick?

ICLori

08-02-2006, 02:51 AM

Hi, Icy, I'm sorry you are flaring. :( I guess it's to be expected, this med can take a long time to really work. That was no fun having to self-cath, I'll bet. :( I hope you get better soon.

I'm doing really well, over my flare. So far so good. But it's really the Minocycline I think more than the CyA keeping me flare-free, because each time I stop or drop the Minocycline dose I flare. :(

Hope everyone is feeling better today,

Blessings,
Lori

Bozema

08-02-2006, 04:06 AM

Hi Everyone-

Icy - glad to hear you are alive and doing better. Sounds like you've had a rough go during the last week. No fun. Keep hanging in there.

Lori - What is minocycline?

As for me, still slightly flared - but not horrible. I'm coping. I tend to get worse at the end of the work day no doubt from the sitting and the driving. It intensifies as the week goes on and I grow more tired. The weekend is my recovery time. It's a weekly endurance race. Right now most of my energy is going toward getting through the work week. I'm too tired to take on much else.

Bayley (the dog) is feeling much better.

I went to the gym for the first time this morning at 5:30 a.m. and did my routine. Time to get back into getting up early and gettin' it done. It felt good today and a little like normal life.

Next week is week 8 on cyclo for me and I'm going take off from work and let my body have a break from the work/flare cycle and get some rest. I think if I do that, the cyclo will have a chance to work and maybe I can break this cycle. Work gets very busy for me at the end of August, so I'm thinking I'll take the break while I can. I'm planning on reading a couple summer novels, sleeping in, going to the gym when I please, walking my dogs and going out to lunch with my DH a couple times.

We are planning a real vacation in September and hoping I'll be in full remission by then.

Well, that's it from here-

Sending you both "feel good" vibes for today-

-Laurie

IcyAngel23

08-02-2006, 06:17 PM

Laurie-Thanks for those good vibes. Your in great need for a rest period. I was home and no working when I started it and I wouldn't have made it without all that rest. You should feel much better after the break from work.
Lori- glad your pretty much flare free for now.
Take care both of you.
Kristin

IcyAngel23

08-18-2006, 07:26 AM

Well I've been really bad with posting cause I'm feeling better. I did have a week of problems but it was the dr and pharamcy's mistake that left me without CyA for about a week. I'm doing well. Is there anyone else other than Lori/Laurie/Me(Kristin) who is taking it now? Don't be afraid to ask questions not matter how personal they may be. Well I'm here if you have anyother questions. Today I'm going to my first big concert since my IC so this will be the test tonight. Take care

Kristin

ICLori

08-18-2006, 07:38 AM

I hope you have a great time at the concert, lots of fun, and I hope your bladder keeps getting better and better! I also hope that our experiences will be helpful to anyone else wondering about CyA or who has decided to even try it.

Blessings,
Lori

Bozema

08-19-2006, 03:58 AM

Hi Kristen-

I'm glad to hear you're doing so well. I hope you enjoy the concert. It is so sweet when you get a little bit of your life back. Check in every once in awhile and let us know how you are doing - good or bad. Either way, people here will want to know.

-Laurie

IcyAngel23

08-19-2006, 01:22 PM

Well it passed my test test last night. I only used the bathroom twice in 3.5 hours which for me is really good. So I was happy with that. I like to celebrate small steps like that. Hope all is well with you guys

Bozema

08-19-2006, 02:55 PM

Congrats Kristen!!! Glad you had a good night last night. Goodness knows, you deserve it!!!

-Laurie

ICLori

08-19-2006, 04:46 PM

I'm so glad you are doing so great and had a fun time, Kristin! Here's to lots of wonderful days ahead for you!

Blessings,
Lori

IcyAngel23

08-22-2006, 10:54 AM

Thanks both of you for the congrats. I'm not as tired as I use to be. I'm woried about the 4.5 hours plane ride to San Diego on Saturday.
Today I have a sinus infection so I'm having horrible headaches and my freq is up. I'm still hoping this is going to be it. So here's to tomorrow and better days to come. Hugs.......Hugs. Take care

Kristin

ICLori

08-23-2006, 06:08 AM

Hi, everyone. I'm still having some bladder irritation at night, and when I first wake up in the morning, which irks me to no end. I want to be in remission NOW, LOL! Anyway, I decided to try taking the dose on an empty stomach rather than a full stomach because I had the feeling maybe I wasn't getting the full dose. BIG difference - I'm having side effects again (tiredness, etc.) and obviously I am getting much more medicine into my system this way. So anyway, I am hoping that by getting more medicine into my system, I will soon be in remission (keeping my fingers crossed.)

Hope all of you are doing well,

Blessings,
Lori

IcyAngel23

08-24-2006, 10:18 AM

I never really thought about how it could be different without food. I take it without all the time and sometimes with food. I'm very antsy about being in remission now too. I'm getting there slowly. I just look it as my IC has been ruining my life for three years, that it's going to take alot of time to get me back to normal. I'm doing well. I went shopping,exercising, and made dinner.Big improvement there. I couldnt do that all in one day since my IC.
Lori- Stay focused and positive. Hugs.....

Bozema

08-25-2006, 06:00 AM

Hi everyone-

I haven't been around much this week due to a crisis at work that had me working overtime. My body paid the price for it and I've been having flares off and on all week. The crisis has passed and I've talked to my boss and gone back to working 3 days a week at home and two in the office. I think maybe if I slow my pace a bit maybe I can get myself feeling better. The good news (sort of) is that it seems as though I can get the flares to settle down much more quickly but the bad news is that when I do flare, it's been very very severe. Overall, I feel I've been going backwards and that is not good at all. So I'll give this schedule a try and see where it leads me.

Icy - good luck with you flight to San Diego. Hopefully it go fine. Lori - I've taken the cyclo both with and without food - I'm not sure it makes much difference. I wouldn't suffer for no reason - feeling sick just means it irritated your stomach lining - not that it's helping your IC. Just my opinion on the matter. I think it just takes time for this drug to work. Hang in there girlfriend.

-Laurie

ICLori

08-25-2006, 08:04 AM

Sigh...I guess none of us are in complete remission yet. Laurie, I'm sorry you have had severe flares. I hope it stops soon.

In the back of my mind - I know you guys must struggle with this too - I wonder, will I ever be in complete remission, or will I always have some symptoms?

I do feel I am better than I was, but...for instance, I didn't take pain meds last night. I didn't have any pain really, but I had frequency - waking up every hour or so to pee. :( That wasn't good. So I am hoping that maybe I will get better than this, because I'm still too dependent on the Ultram, and want so much to get to the point where I don't need that.

I hope that all of us reach remission, and I hope it happens soon for us.

Blessings,
Lori

ICLori

08-25-2006, 01:41 PM

Question for you guys - I had read that the maximum benefit of CyA occured at roughly 3-4 months of use - in other words, however good you are at the 3-4 month mark, that's as good as it gets - is that what you guys have heard, too?

Although that doesn't quite jibe with the other study, showing some people got improvement all the way up to the six month mark...

Just wishing I could go into full remission here - this "better but not all the way better and still need Ultram at night" isn't good enough...

Blessings,
Lori

IcyAngel23

08-25-2006, 04:09 PM

Lori-

I don't know if that's as good as it gets but I hope it gets better for you.

I'll be gone for a week leaving in 6 hours. My first plane ride since CyA. So I'll see if it makes my flight better. San Diego ......here I come.

Bozema

08-25-2006, 05:54 PM

Lori-

Where did you read it? I felt at week 15 I was continuing to improve, but that was still within the 4 month time frame, so hard to know. In any case, neither of us are there yet.

-Laurie

SRP7555

08-26-2006, 12:55 AM

Hi,
I'm 24 in the military and married with 4 children. I keep searching for the medicine that will relieve my bladder pain and make me seem somewhat normal again. This last year and a half has been real rough on me because IC really took a toll on my marriage and my life. Currently I'm on Elavil which helps with most of my symptoms but it makes me burn more. I think I'm either getting used to the Percocets or that it's not enough for the pain. I'm really intrigued on this medication Cyclosporine. I have read some of the threads and it seems like a lot of side effects but if it helps with the pain I'm willing to give this a shot. If anyone has any info on Cyclosporine or there personal experiences it would be greatly appreciated.
Thanks
Suzanna

ICLori

08-26-2006, 02:14 AM

Hi, Suzanna, former soldier here, welcome. We've all talked about our experiences (on a daily basis, most of us) so far and pretty much all we have to share is already on these threads - if you do a search for Cyclosporine on the boards (use the search bar at the top of the message board) you will see the studies and the older threads, etc. Once you've read all those, if you have any questions, I'm sure we'll do our best to answer them...

Cyclosporine-A seems to have a pretty high effectiveness rate in studies (75% or higher) but I'm starting to get kind of disillusioned because none of the three of us taking it are in full remission yet...some days I'm not even sure if I'm better or not. I don't really know. And I've been taking it a good 9 or 10 weeks now - I feel I should be better by now.

Anyway, best of luck to you if you do decide to try this...I hope it works for you....are you anywhere near Walter Reed AMC? If so, there is a doctor up there who is using Cyclosporine-A on his patients and he says he's been havin good results with it, he said at the time I talked with him that about 4 out of 5 of his patients were doing very well on it.

Laurie, I'm about where you were at one point last time...wondering if this is EVER going to work for me or not....wondering if I will ever not need the Ultram or not....getting discouraged. I guess you are probably getting a bit tired of waiting for this to kick in, too. I guess there's nothing we can do but sit and wait, and hope that maybe in a few more weeks, it will start to kick in for us.

Blessings,
Lori

IcyAngel23

09-01-2006, 06:31 AM

Lori- Awesome advice. We have put up so much info between the three of us.
Laurie- Hang in there.
Suzanna-(Lori and Laurie too)
I'm finally back from vacation but I'm going on another one tonight. So CyA has really be a lifesaver lately. I was able to go to Sea World and other fun stuff like that with no problem. My freq is still high but lower than before. I have no urgency which is so awesome. I flew on a four hour plane ride with no trouble at all. I was in the bathroom more than I would've like but no pain. Now my IC is just a pain instead of causing pain. So no remission but I'm able to get on with my life so far. I hope this keeps up for all of us. The first month was hell but smooth sailing after that for me. For anyone out there dealing ith what we are try CyA. Push to take it and don't give up. I have IC and I'll always have IC so there will be days when I feel it more than others. Now it isn't my life. I have a life outside my IC. So don't give up or let dr say being 24 they won't put you on it. I'm 24 and I think my age is a benefit to the fast results. I started out at a 5% better with other treatments and now I'm at a 60% better with CYA. I'm hoping that it will get better but this has been the only treatment to help in any way.I'm on 2 months right now with a week break in between due to drs office and pharmacy. So ask your dr about it and print out the research up on the boards. Take care

Kris

dianna_rose

03-15-2007, 12:06 AM

Dear Lori, Laurie and Kris,
I am sitting here in the wee (pun intended!:) ) hours of the morning doing my usual staring at the TV and I've just finished reading all 6 pages (is that the right term?) of your thread, first of all intrigued and then feeling like I'm such a wimp and you guys are my heroes. My 51 year old body feels like 95, I've had IC forever, I don't have family and friends for support--only here I feel safe. and I have gotten scared to try anything new, after trying so many other things for this and so many side effects. I have two good doctors, but I have to make an appt. it seems six months ahead (it seems) to get in to see them. At least they know each other and know about me. But lately I have been feeling like giving up completely. I am weeping loudly and feel so lost. It's funny to read about gaining weight with IC, I've lost close to 70 lbs in the past 3 years. I believe the reason I have all the diseases I have is because I am a survivor of abortion, and my immune system seems to have been weak all my life. I am afraid to try something that affects the immune system the way Cyclosporine does. I have a friend in end-stage liver failure who hasbeen on it and I have watched him suffer. Any suggestions for a lonely stranger?
Blessings,
Dianna

Bozema

03-15-2007, 09:39 AM

Hi Dianna-

It's been a long time since I've posted to this thread, so I can't speak to how Lori and Kristen have been doing. As for myself, I've been off cyclosporine since October since my doctors and I concluded that IC is not my problem and really my issue is pelvic floor dysfunction alone, without IC. That is why I believe that cyclosporine in the end was not effective for me. I am continuing on with physical therapy and use of muscle relaxant drugs and this path is working for me and I am slowly reclaiming my life. I am riding my bike, which is something that makes me happy and a year ago would have been impossible. That said, I still have some bad days and I have a way to go yet. But I feel the trend is in the right direction and I have control of my life and the flares.

I understand what you are saying about feeling 95 years old. I felt like that many times too. The only encouragement I can give you is to decide to fight to take back your life. It takes a lot of energy that you might not feel that you have, but you do have to summon the part inside of you that wants to survive and focus everything you have on that. Make the appointment with the doctor. Even if it is months out, at least you have something on the books, and its more than you had yesterday. If necessary, find another doctor. Cyclosporine is a serious drug with side effects but I was willing to try it because it offered hope of really getting better when none of the standard treatments worked for me. I knew I couldn't continue the way I was, so I was willing to risk a serious drug if it meant any chance of getting my life back. I don't think all that much bravery was involved - the status quo was unbearable so with that situation, I felt all the options were open.

My turning point came when I decided to make an appointment Dr. Jerome Weiss in San Francisco who is one of the leading experts for pelvic pain, inlcuding IC. I had to buy a plane ticket, book a hotel room and pay for the visit out of pocket (I am still fussing with the insurance company to get the partial reimbursement I am due). I had an appointment within a month to see him - there was no long wait. It cost probably $1,500 to do this, but I decided my life was worth every penny. He is now working with my regular urologist and my physical therapist to guide my treatment and I am getting better. Money is an issue for nearly everyone I realize and not everyone has the means to do this. It was a lot of money for me, but I found a way because my life is more important than anything else. So my advice is to do whatever it takes and don't let anything (fear, money, doctors, family members, other people, whatever) stand in your way of getting what you need.

Part of it has to be about learning to love yourself and being willing to put your past aside and move on. You have to decide you are worth fighting for. Everyone has bad things and baggage they have to bear and it seems a lot of IC patients have big burdens that they carry. One woman I know developed IC while trying to work full time and care for a seriously disabled child. My illness (which turned out not be IC) developed during a very trying time in my life. So the best advice I can give you is to love yourself enough to fight for yourself. No doctor can do this for you - only can let this happen. If you believe in God, remember he does forgive us. We only need to learn to forgive ourselves and love ourselves.

So good luck and don't be afraid to take whatever steps you need to be a whole person again. You are worth fighting for.

IcyAngel23

03-15-2007, 11:21 PM

Dianna-

Sorry to hear your going through a tough time. I'm off of CYA. I tried it and if my parents didn't insist on me stopping it I would still be on it. I had alot of side effects but to me they were worth it. Right now I'm waiting on the Neo-bladder surgery to be offered to me. In addtion to my IC,IBS, PFD and PBS my bladder is slowing dying so a new bladder is really my only option. Make sure if you have a dr who will monitor you very closely if you decide to take CYA. I know how hard making medical choices can be. My advice to you is not to be afraid to try new things. My pain went away but I had to deal with other side-effects. As you read most of us had different side-effects and you might only have mild ones. I'm allergic to Elmiron so this drug being more powerful I wasn't surprised I had problems tolerating it. My quality of life isn't the best but I know that one day I'll get my life back but I have to be willing to try everything. Hang in there. If you need to talk to someone while you're going through it I'm always here. You can PM me for my e-mail if your intersted. I wish you all the luck if you decide CYA is right for you. I hope it's the answer you've been looking for.

Kris

marsi4

04-10-2007, 08:01 PM

Hi Dianna,

It breaks my heart to know how much you are suffering. I too, have had this awful disease fo a very long time and can completely understand and feel your pain and despair. I know how this condition can affect and transform your entire life and how lonely and isolated it can make you feel. Please do not give up. If none of the standard treatments have helped you can consider surgery as a last resort. You still have that option to consider. It may turn your life around and improve your quality of life. I too, am considering it and feel it is necessary , since nothing seems to help due to the fact that I've had ic for 35 years and only started treatment after 32 years. That's how long it took for a diagnosis. I would like to help any way I can. Please pm me whenever you want. I am there for you.

Marsi4

hottytoddy93

05-31-2009, 01:19 PM

YEAH !!!!!!!! I'm feeling like the old me again. I went to the beach this weekend and drove waverunners with no bladder problems. I was even able to stay down at the beach for hours without having to go the bathroom. I"m not saying I still don't have a long way to go with this drug but this is the first time in three years that I've been this happy with my life. I'm so happy I fought to take this drug. I didn't let the side effects scare me or intimidate me. I've also lost 7 pounds in the ten days I"ve been on this too. I had the cutest shape before I gained all the weight due to IC and I'm working my way back to that. I know I have months ahead of me and it may be rough but if this weekend is any indication as to how I'll feel when it takes full effect than I can see this actually being a cure for IC. Not a treatment but a cure. My boyfriend of 6 yrs broke up with me 4 months ago cause he couldn't handle my IC. I'm a stronger person because of that and my IC has made me see he wasn't the right one for me. We were going to get married and the whle shabang. I've also decided I'm going to med school to become an IC uro. So I guess everything does happen for a reason.

I have both ulcerative colitis and IC, definitely related, and I am convinced of autoimmunity. I would love to find out more about immunosuppressants like Cyclosporin A. The findings seem incredible on the trials comparing Elmiron and Cyclosporin-13% remission for Elmiron and 59% for Cyclosporin? Is this right? Is anyone taking this med and where is it being administered? I have much more research to do, but I really want to talk to patients (not drs) about side effects and whether it works for them. I am not happy with the procedures, instillations, and meds I have tried with little or no success.

My body is shutting down. I have lost a ton of hair (barely covering scalp in back). My last two fingers & toes tingle and the sides of my hands and feet are numb- circulation issues. I am cold all the time. I am nauseous and have 99 fever many days but somehow manage to feel cold in my limbs while hot in abdomen and chest. Multiple migraines. I am fatigued, have mini-blackouts, and get winded doing the smallest task. I feel malnourished. And worst of all, my brain is working slower and I can't remember things I usually am very on top of.

I need something that works. My diet is the perfect combo for IC and UC, very researched and crafted. I drink nothing but water. Diet is not doing it for me. My acupuncture greatly helps the emotional part and sleep, but the diseases are still going strong and stiil in pain. Please let me now where to go get this treatment. It's my last option. I weigh 91 lbs now and need help.