Nothing else has worked??? Cyclosporine A has changed my life

[IcyAngel23]

Ok well I had another thread with my progress but I wanted to start another one because I'm so happy. I've been on it for 10 days now. I was pratically homebound for over a year and I've done things I haven't been able to do in awhile. I drove a waverunner in choppy waters without my bladder freaking out. Walking used to make my bladder go all crazy so a waverunner was totally not possible before CyA. So my stomach gets a bit icky and at night I have a bit of pain but nothing like before. I can stay out and enjoy life. I spent the weekend at the beach. The other perk which I love is the fact that I'm not hungry because it makes my stomach icky. I've lost almost 7 pounds since I started on this. Before I was diagnosed with IC I was a cute pixie with boobs and had a curvy shape. Since my IC I've gain about 55 pounds in like 3+ years and I'm looking forward to losing it all and getting back to my hotness. I'm just so happy and I want to spread the word. I've tried everything and nothing helped at all. So for those of you who aren't getting relief and feel hopeless this may help you. It's only for extreme cases and has some side effects but it is soooo worth it. My boyfriend of 6 yrs broke up with me 4 monhs ago cause he couldn't deal with my disease. So I'm ready to take the time to rest and enjoy life again. Ther are I think three of us on this board who are taking it now and I hope they will have results like me. I'm still in the early stages and it might stop working but for now I'm excited I fought for this drug.

[ICLori]

Good for you, Icy! :) I think CyA is a very good treatment for those who have not found relief with the conventional medicines. I think it's absolutely worth trying!

I'm so glad you are feeling so much better! That's wonderful news!

Blessings,
Lori

[IcyAngel23]

So Things are going very well. I'm finally off of most of the opther pills I was taking and I must have been overmedicated. I was a walking zombie the last year comapred to now. Had a bit of pain tonight but not too bad.

[ICLori]

Hi, Icy, I am having an irritable bladder day again, but nothing too bad. I guess it's still going to be awhile before this fully kicks in for me. I might be one of the ones who takes 6 months to respond, versus 1 month. I've only been on it 3 1/2 weeks so far, so I might have a ways to go before I feel fully better.

Still struggling with some nausea and tiredness. Mostly just nausea, though.

Hope you feel better today,
Blessings,
Lori

[IcyAngel23]

I still have bladder pain and nausea but only for a few hours or so. I'm not 100% better yet but I would say about 50-60% better. Mostly I can molve around without fear of bladder pain or spasms. I just got a reply from Jill and she added CyA to the experimental theard section. So we got our own topic thread. Yeah!! So hopefully we can move all the other stuff there.Take care
Lori-
I'm struggling with tiredness too but it's weird cause I have more energy than before. I'm sleeping more but I noticed I need more sleep these days. So I just sleep until I'm ready to get up. I'm just so happy to see any improvemet. I'm hoping that this continues to get better. It's not overwhelming like it was before CyA but still I have rough days here and there. My air is broke again. I just got it fixed yesterday and now it stopped working. So I notice rthat I feel so much better when I'm in the air cond. I think the heat and humidity is what is giving me the up and down. The heat just isn't good for me right now. So that's another thing I discovered. So if you can stay in the air if you have it or keep as cool as you can.
Hope you feel better tomorrow. I know you're still having trouble but have you noticed a change even if it's small? That's what we need to look for. The small things add up. Take care

[louise]

Hi,

For Those Of You Presently Taking The Cya, Do You Mind Giving Me Some Information On The Doses You Started On, Time Frame And How You Progressed To What You Are Now Taking. I Have Known Kristin For A Long Time (off Web Site) And She Has Been A Real Support And Friend To Me, Even Sending Me Beautiful Internet Greeting Cards On Special Occasions Which I Appreciated And Needed Very Much. She Is A Wonderful Caring Person And Since I Know How Badly She Has Suffered Both Emotionally And Physically Over The Past Few Years, I Am Now Just So Happy For You, Kristin (i Shouldn't Speak In The Third Person!!) That You Have Found A Drug That Is Giving You Such Spectacular Relief From The Severe Pain You Were Enduring Along With The Other Miserable Symptoms Ic Gives You.

So Now That You Are Doing So Well, Kristin, It Is Great For Me To Follow Your Progress And Enjoy The New Life You Have Been Given By Cya. I Just Hope That I Will Be Able To Join "the Cya Club" Sometime In August When My Uro Comes Back From Holiday. He Wants To Work With A Rheumatologist Regarding This Drug Because Like You I Am My Uro's Worst Ic Patient So The Two Doctors
Plan To Do A Trial On Me First. I Am So Excited About It And Wish I Didn't Have To Wait Almost Another Month; But I Guess When You Have Lived With And Suffered With This Excruciating, Debilitating Pain Over The Past Thirty Years, What Is Another 30 Days??!!

I Want To Thank The Other Two Icers That Are Also Fortunate And Deserving Of To Be On The Cya For Posting Their Daily Effects Both Good And Bad From Being On The Drug. For Someone Who Is Hoping To Be On It Herself Very Soon, It Is So Beneficial To Be Able To Digest This Information Ahead Of Meeting These Two Specialists.

Good Luck To The Three Of You And I Sincerely Hope The Progress Continues And Cya Turns Out To Be The "miracle Drug" For Many More Of Us Who Are Desperately In Need Of Help!!!

Sincere Thanks,

Louise

[ICLori]

Hi, Louise, I hope that your doctor will allow you to try CyA, because I think it has a reasonable hope of putting you into remission.

My doc started me out on 1.5 mg/kg of body weight per day, divided into two doses, because he misread the study I brought him. When I brought him in the full study and he could see that it was supposed to be 3.0mg/kg per day divided into two doses, he corrected the mistake and put me on the full dose.

So I am taking 3.0 mg/kg per day, divided into two doses, and will remain on that until I am in full remission. Then I will think about ramping down to a lower dose.

Best of luck to you!

Blessings,
Lori

[IcyAngel23]

I'm so irritable abd mean lately. So i'm laying low. I guess it's the heat and I got mouth sores again late night. So needless to say I'm just crabby. Anyone else crabby? Maybe it's just me.

Kristin

[ICLori]

I'm sorry, Kristin. Wish I could lift your spirits somehow. I know those mouth sores hurt. My husband swears that Listerine gargles make it go away faster. Maybe gargling with salt water would be soothing? I hope they go away soon and don't come back again.

I'm trying to think of what causes mouth sores - are they from bacteria, where the body doesn't fight well against the bacteria? If so, perhaps gargling/swishing (for at least a full minute, best if you can stand it two minutes) with Listerine twice or three times a day should prevent them....give it a try and let me know, I really do think it might work at preventing those icky things.

It's okay to be irritable. I get irritable aLOT, especially when I'm tired, depressed, not feeling well.

You are hot ,not feeling well from the side effects - of course you are irritable, who wouldn't be?

Everything will get better, just hang in there some more. I know that's not worth much, you must be tired of hearing that by now...

blessings,
Lori

[IcyAngel23]

Thanks Lori. I've been using a dental mouthwash everday to prevent them. This time they are very small and aren't really bothersome. The roof od my mouth is tender and has a few little bumps. Nothing like it was last time.
Yeah I guess I do have a reason to be crabby. I would have to say I'm very hard to live with right now. My poor mom she just annoys me to no end and I want be nicer but it just doesn't happen all the time. She is constantly around me and not giving me time to myself.Everything is getting better and I'm so blessed for that. Hope everything with you is going well. Thanks for boosting my spirits. So can we get an update on you? Let me know how you're doing. By the way what dose are you at now?
Take care
Kristin

[ICLori]

I've been doing well, but I have to keep taking the Minocycline in addition to the Cya right now or I flare. :( Have no idea why.

I'm at 3.0 mg/kg per day, divided into two doses, I've been on that dose 5 weeks now, don't anticipate changing the dose anytime soon...are you still at 1..5 mg/kg? Seems to be working for you...

Blessings,
Lori

[Bozema]

Hi Kristen-

I'm sorry to hear the mouth sores are back. That would make me crabby too.

Good that you are using a mouthwash. Our dentist suggested Colgate Peroxyl as one to use for early stage gum disease (an issue for my DH) and I use it for canker sores. It is antispetic and it also speeds healing of all sorts of mouth irritations - its also very soothing and does not burn.

You might want to check with your primary care doctor - you might have some type of low grade infection that keeps flaring up because of the effects of the cyclo on your immune system. Maybe you need something to clear it up.

I am hot and sticky today too and rather sick of it also. I keep getting the hot flashes in my hands and feet from the cyclo and it is annoying in this hot weather. I stood in a bathtub full of cool water the other night before bed because I couldn't stand having hot feet for one more minute.

At the moment, you have every right to be crabby. Go ahead and relish it.

-Laurie

[IcyAngel23]

Well crabby was just to tip of the iceberg. Today is really the first time I had bladder pain like before CYa. I be getting sick. I can always tell cause my bladder feels it like two days before the rest of the body does. So I'm hoping it's a flare and not an infection. My AC is finally fixed. We had to get a new central air unit. I'm finally comfortable in the heat. Lauire I feel your pain about the heat. For the hot feet I would put ice cold water in a spritz bottle and spray the feet and put a fan on them. So refreshing. Well keep cool.
Kristin

[ICLori]

My chillows just arrived today (Google, you will find lots of them sold lots of places on-line.) I love them! I filled them up with water and squished the air out of them per directions, and they are so nice and cool! I highly recommend these for anyone suffering from the heat - lets you be WAY cooler. And the cooling effect lasts several hours. When one side gets warm, turn it over and use the other side. You can lie on one, then use the other on your pillow, or in your pillow, and be totally cool and comfortable.

I'm so happy because this actually does work as advertised, so I didn't waste my money.

Blessings,
Lori
P.S. I'm sorry you are flaring, Kristin, hope you feel better soon.

[IcyAngel23]

Well the good new is that I'm not flaring. The bad news is that I have a fever and bodt aches. I have a call into my dr but I don't think he will say anthing other than watch to see If I get worse and lots of rest. I new something was wrong today when I had horrible bladder pain. I hope I get better soon too. Thanks Lori. I"ll check out the chillows.
Kristin

[ICLori]

Oh, I'm sorry you are feeling so awful. I'll bet that's why you were feeling irritable - your body was coming down with something, and it made you grumpy! That's happened to me before, too.

I sure hope you feel better soon.

Huge summer thunderstorm going on around here - I kind of like it - cooling things down a bit I think.

Blessings,
Lori

[IcyAngel23]

Thanks Lori. hope you're doing well too. I love thunderstoms and how rains sounds on the roof. It's very relaxing. I hope it rains here in Chicago too.

Kristin

[louise]

Hi Kristin & Others,

We Are Just Finally Decreasing Our Temp. Here In Edmonton, Alberta, Canada. It Was Up To 34 Degrees C Which I Believe Is Somewhere Around 90-95 In Your Language. We Don't Get It Hot Like That Very Often, Thank Heaven. But, As You Said, Kristin, It Is Also Making Me Feel Very Irritable, Cranky And Generally Out Of Sorts. Plus The Pain Went Off The Chart And Has Been To The Point Of Being Unbearable. I Save The B & O Suppositories For What I Call My "emergency" Pain And They Aren't Touching The Pain So I Am Really Miserable. I Don't Feel Like Eating - The Only Thing I Want Is Ice Cream And Some Cantaloupe Taken With Prelief. I Have A Call Into My Gp To See If He Can Suggest Anything For This Short-term Exacerbation Of My Pain. I Am Always In Constant Severe Bladder And Pelvic Pain, But The Pain With This Heat Is Just Too Much To Cope With And I Am Climbing The Walls. I Sit In A Cool Tub 2 To 3 Times A Day To Try And Get A Little Relief. If Anyone Has Any Other Suggestions, Please Let Me Know. The End Of August (when I Hope To Start The Cya) Seems Like A Long Time Away Right Now.
As My Uro Said To Me Last Time I Spoke To Him, "hang On"!! I Feel Like I Am Hanging On By My Fingertips And I Have My Grand-daughter's First Birthday Party This Saturday And My Daughter Is Having 30 People. I Told Her I Would Not Be Able To Stay The Whole Time - I Mainly Want To Be There When Abby Opens The Gifts And Then I Will Head Home To A Tub And To Put My Feet Up As We Are All Going Out For Dinner That Night. The Way I Feel Right Now I Don't Think I Will Be Able To Deal With All Of That. It Is A 90 Minute Round Trip Drive To My Daughter's Home To Begin With.

Take Care And I Hope Everyone Feels Better Soon .

Louise

[IcyAngel23]

Louise-

Sorry to hear you're paying for the weekend. At least you got to be there for her first birthday. I know what you mean when you say you've been hanging on by a thread. It seems so close but you just can't get there.When are you going to see your dr next? Hopefully you'll get it soon. Well take care and sorry I haven't been so good at e-mailing. I'm just so wiped out these days. I sleep alot and when I'm awake I'm crabby. Not as much since our AC was fixed. You always send me adorable picture of your grandchildren so if you have a pic of the birthday please send it to me. She is so adorable and beautiful.Take care.
Kristin

[ICLori]

Hi, Louise, please hang in there a little longer, you get to try Cycylosporine-A and hopefully it will work for you, in August...not too much longer now...another few months and hopefully you will be feeling much better!

Blessings,
Lori

[LyseMagness]

I am trying out an interstim temporary phase this week and tryiing to decide if I want to have the permanent one implanted. I am sort of at the end of my rope taking so many narcotic pain pills for my I.C. I hoped this would help. It seems to lessen the pain somewhat but I still have it, and after reading about all the horrible complications some patients have had with it I am hesitant to have it permanently implanted. Then I saw this thread about Cyclosporine A and wondered if it might help me. What is the profile of a good candidate for using CyA? I am 66, have extreme I.C. bladder pain, but not urgency or frequency particularly. I have had DMSO, Elmiron, hydrodistention and none worked for me.

Thank you,

Lyse Magness, Memphis, TN

[ICLori]

Lyse, I don't blame you for being interested in Cyclosporine-A. Although it has substantial side effects for many, especially at first, it is judged to be safe and effective for IC, by researchers.

Although some doctors who are not familiar with this drug (it's used primarily by transplant doctors and rheumatologists) poo-poo this drug, it's been shown by studies to be not only SAFE, but the single most effective treatment to date for IC.

I am not aware of a profile per se for people taking Cyclosporine-A - basically, if you have been diagnosed with IC, you have about a 75% (or slightly higher, depending on which study you read) of getting better, including a good percentage of those who end up with no bladder pain whatsoever. If you do some more reading on this message board, you will soon find the study abstracts, which you can take to your doctor and show him so that perhaps he will consider prescribing this to you, if you are in good enough physical shape to try it (you can't have unhealthy kidneys or liver and take this medicine.)

The only way I ever got my doctor to prescribe this, was because I brought in the study abstracts. In fact Jason posted the PDF files and the complete studies for two of the studies. Print those out, if you would like, to discuss with your doctor and family.

Good luck with this, and let us know if you decide to try it, or if your doctor decides to let you try it. (Many of us have had to go to more than one doctor to try this - some doctors are afraid of this medicine, since they do not normally prescribe it, and since it does carry some risks.)

The best information is obtained from the studies - I think they will answer many of your questions you might have!

Blessings,
Lori

[Bozema]

Hi Everyone-

Today is NOT a good day. I had a bad flare yesterday that turned to a massive flare last night - the worst I've had since last December. I'd almost forgotten how bad a BAD flare can be. I am suspicious of a UTI as a cause - trying to get through to my doctor. Since I haven't been called back, I took a urine sample in one of the sterile containers I have on hand and then started Cipro, which I also have on hand, and lo and behold, things have settled down. So I'm suspicious. Hope I hear from the doc today.

Will keep you posted. So much for fun on my days off....

-Laurie

[ICLori]

Hi, Laurie, ((HUGS)) I'm so sorry you are having a terrible flare. That's awful. I hope that it's just an infection and that the antibiotics will knock it out overnight so you'll be feeling great by the morning.

You're almost there - you're almost at that point now where you'll be flare-proof so to speak...should be getting better and better each day, I hope...

Keeping my fingers crossed for you...hopefully you will be better soon,
Blessings,
Lori

[IcyAngel23]

Well it's been almost a week off the CyA due to my drs office taking a week to refill plus the pharmacy had to order it too. So I start again tomorrow. This week has been hell. I totally forgot what a bad day was really like. I've had to run water or cath myself. My body just can't take this on and off CyA. So needless to say I've been absent this week due to the crippling pain and lack of sleep.
Laurie- Hugs from me to you. Get better soon.
Lori- You gave excellent info the Lyse. Awesome job. Hope you're doing well today and stay that way. So I just have to start over this week. i'm sure I'll get all the side effects again like last time. Well Take care and I"m sending prayers both your ways.

Kristin

[ICLori]

Hi, Kristin, I'm so sorry you went through that. I wonder, if you were to talk face-to-face with the head pharmacist there at your pharmacy...you could tell him how important it is to you to have CyA on hand when you need it...since the pharmacist would know he or she wouldn't lose money by stocking CyA for you, since you will absolutely come buy it regularly, maybe he or she would be willing to always keep some in stock, you know? I think that maybe you could resolve this by talking to the head pharmacist, honestly. Otherwise, they just use these computer-generated guesses at what to stock, based on years past. If, in years past, no one used CyA, then they won't really stock it. But if you go talk to them and say, "I'm going to be using this much every single month from now on" they might always keep at least that much on stock, you know?

And your doctor - wow, I don't know what to do for that - I guess I'm just hoping your doctor won't mess up the refills any more or anything. That's awful. :( I've been really lucky so far (knock on wood) about being able to get my CyA. My doc actually gave me a 2 week's supply at first, with 11 refills so that's six months before I have to go see him again, pretty cool. Maybe your doc could write it up that way, too...so that you automatically get the refills without the doc having to call them in.

I sure hope you and Laurie will be feeling better soon. I feel guilty for feeling well, when you guys are suffering. :( Hopefully both of you will be feeling much better very very soon.

Blessings,
Lori

[louise]

Hi Lori, Just Wanted To Say I Am So Pleased To Hear You Are Finally Getting Some Pain Relief From The Cya. My Uro Is Back From Holidays Today So I Am Hoping To Start The Drug Myself In The Next Few Weeks. Tomorrow I Have To Go To The Hospital For A Pamidromate Infusion For My Osteoporosis Which Started At A Young Age Due To My Family History And Early Menopause. It Is Administered Via Iv And Takes More Than Four Hours So I Am Not Looking Forward To It, But At The Same Time I Am Hoping It Will Help With The Bone Pain And Increase My Bone Density.

Good Continuing Luck With The Cya!!!

Louise

[ICLori]

That's great news about your Uro - hopefully the CyA will help you, with minimal or no side effects.

I'm sorry to hear about the IV med - that doesn't sound like fun - I hope it works, though.

Blessings,
Lori