Another flare (post earlier is gone due to server problems)

[ICLori]

I'm still flaring. Been flaring about 24 hours now. Every time this happens, I think - the Cyclosporine-A is NEVER going to work for me.

How long exactly does it take to go into remission on this? I hate that I don't know. That there is no one I can talk to, who has been taking this for IC for years.

There are the studies, but...they were kind of small, don't know if I can trust them...I just want my IC to go away...

I'm really tired today, too, wanted to sleep literally all day long...don't know why...just not a good day.

Blessings,
Lori

[Janie Miranda]

:grouphug: :grouphug: :grouphug: :grouphug:

[ICLori]

Thank you so much, Janie. I am sooooo depressed. I just want to curl up into a ball and pull the covers over my head. I've been struggling with this disease for over five years now, and I'm just getting so tired of it. I wonder if I will ever be better?

Laurie, if you are out there....how are you doing? I sure hope this is starting to work for you....I'm starting to lose hope again...I wish I had someone to talk to, who has been on CyA for awhile, to see if there is still actually hope that this might work for me...

Blessings,
Lori

[vm]

Lori - Have you had better stretches of good time on this med than in the past? I ask b/c I'm not sure, but was thinking you really have. Maybe try to focus a whole bunch on those good times and how you have had more of them while on this medication.

I just know when I started Elmiron I would feel good and then would flare and would start to lose all hope again. I was sure that the current flare was the one signalling the end of my relief. But, the flares got less and less and further and further apart. I wonder if that is how this med will help you. I REALLY hope so. :kissing:

[ICLori]

Hi, Kim, you know, I think maybe that I did have more good days. I had a stretch of about a week to a week and a half that was pretty good. I really need to buy a notebook and try keeping track of all of this. Maybe this is just a flareup, like what you went through, and I'm actually slowly getting better.

I am hoping so. Otherwise, I think it's about time for bladder removal, really. I guess I could try rescue instills, but that's about the last thing I haven't tried yet. Or maybe my doc would test me for Xolair and see if my IGE is messed up or see if I have Lyme.

Blessings,
Lori

[Janie Miranda]

I hate it that you are having such a horrible time of this Lori. There just has got to be something that will work for you. You will be in my thoughts and prayers that you'll find your relief soon. Maybe it will just take a bit longer on this drug.

[Trishann]

Hey Lori, I do the same thing. Wondering if it is time to have mine bladder remove. My doctor said nothing will work, the bladder is gone and when I'm ready, the doctor will remove the bladder and do a reconstruction one. My doctor also said there will be a time where my bladder will not hold and it will just run out.

The thing is, I still have good days, well I call them good days. I don't know why I keep holding on to this damage bladder, maybe hoping against hope or maybe I'm not. I guess I am hoping new knowledge and cures will happen. So maybe that is why I keep on and on.

I know bladder surgery is a hard decision to make and on bad days it sounds better and better. But to make that decision is tough.

I do hope you start feeling better and the flare won't stay. My heart does go out to you.

Hugs, Trishann

[ICLori]

Thank you both so much. It's just so hard to know what the best course is, isn't it? Especially when it comes to surgeries, there are so many risks, and then there is the thought, what if they come up with a new drug soon that will work great?

I feel I should give this med another few months, maybe even talk to the doc about increasing the dose, I don't know. Beyond that, I would like to be tested for Lyme, see if rescue instills would help me...and that's kind of it, the end of the road, I really think.

Blessings, and thank you all so much. I hope that a cure is going to come soon for all of us.

Lori

[George]

Hi Lori,

Please, please keep your spirits up. I know you are having a bad day and I really wish I could help. I really believe you should keep trying this medication for a bit longer. And as you say maybe increasing the dose may help. You are such a pioneer with these new treatments that I just have a feeling this will work for you. I'm not sure what else to say, but I just really want to lend my support to you during this flare.

Sincerely,

George

[Bozema]

Hi Lori,

I'm sorry you've been having a tough time too. I'm about in the same place you are - still flaring. I had some things come up at work and ended up working a lot of overtime for a few weeks, which was very hard on me. Thankfully, the crisis has subsided (or at least my role in it) and I've decided to go back to working at home 3 days a week and only going into the office two days. I'm not happy about it, but I think it's necessary. I'm also going to go back to physical therapy. Basically, I'm recreating the conditions that gave me a good month back in April and I'm hoping the cyclo will kick in with more rest and less running around. I feel if I can break the pain cycle and maintain it for awhile maybe I can start getting better again.

The good news is I had another blood test and everything was normal, so the cyclo is not putting undue strain on my liver and kidneys. As you know, that's always a concern, but I seem to be tolerating it well, save for a few fuzzies and the occasional hot feet. I saw my doctor and he supported my effort to slow down for now and he prescribed more pain meds so we can try and break the pain cycle. He also suggested I take large doses of ibuprofen (despite the package warnings not to take it with cyclo without consulting your physician - and mine thinks it's ok). So I'm doing that during the day and using pain medication at night. It's been a few days and I've had no ill effects but no huge benefit either. But as you well know, all things take time.

I see him again Oct. 2. If none of this works by then, we are going to try neurontin to get a handle on the pain, do a CAT scan and he is going to send me to a specialist at Stanford. So, we'll see.

With my work schedule, I haven't posted much and today I was thinking I needed to give an update - I'm sorry I've been so absent.

So I'm discouraged too but I haven't given up yet either. Not the best news I'm afraid, but I still think I have a chance to pull it together but I need to focus hard on getting better for awhile. I'm wishing and hoping the same for you.

-Laurie

[ICLori]

Thank you, George, I really appreciate the support and encouragement! I was feeling kind of down today. I guess I don't like flares much, LOL!

Laurie, I'm so sorry you are still flaring - that's awful. :( I hope that you get better soon. I just don't know why it's not kicking in for you yet!

I hope that you get better soon...I hope I do, too, LOL :)

Blessings,
Lori

[ICLori]

Okay, today I woke up and that "someone stuck a pencil in my urethra and left it there" feeling is gone, along with the other bladder discomfort. I have NOOOO idea why it went away overnight. No idea at all. And no idea when it will come back.

I am grateful for this break in the pain (and also I feel much more energetic, I was so tired when I was flaring) but I sure wish I understood a little more why I get flares and why the pain goes away when it does. And I wish I knew more about, will the flares ever just go away?

I truly don't understand what is going on with my body. I'm not eating or drinking anything that is causing flares, or causing them to go away. I just don't understand.

Color me puzzled today. When the pain goes away and I have a good day or a good week, I am tempted to say, it's the CyA, but I don't know that for certain, since IC is so unpredictable anyway.

Well, I'll just say, I guess I'm glad I'm out of pain for awhile. But the thing is - I know it will come back.

Pain, pain, go away, and DON'T come back another day...

Wishing painfree days for all...

Blessings,
Lori

[Trishann]

Lori, whatever made this happen, I am happy for you too. It's such a relief to have comfort and without pain. Hope you continue to feel good.

Hugs, Trishann

[Bozema]

Dear Lori-

I'm so glad you're feeling better today. Now could you call the guy who took out your pencil and have him come over and take out mine?

I hope you get out and enjoy your pain free day - and that you get many more.

-Laurie

[ICLori]

Thank you so much, you guys.

Laurie, I hope that some painfree days come your way soon. I know it's probably too early for us to hope for every day to be painfree, but you've been flaring now for awhile and you deserve a break! Maybe in three more months we'll both look back on this and say, "I thought it would never happen but one day I was just better...."

I was thinking more about how your doctor is having you try anti-inflammatories in conjunction with the CyA. I'm kind of assuming that's why he's saying to take the ibuprofen around the clock, because it's a really good antiinflammatory. Interesting thing about that, a doctor told me once the longer you take ibuprofen, the better it works. I mean, up to a point. Or, more specifically, if you take it for a couple of weeks, the antiinflammatory properties kick in at that point, and not just the pain-relieving ones. So it starts working much better for arthritis, for example, after the two-week mark.

Anyway, thinking about antiinflammatories...I mentioned to my doctor that I often took fish oil capsules (usually just one a day) as they seem to help a bit with depression (not enough, though, I still get down) and with arthritis. I haven't noticed if they help with my bladder or not. Anyway, the doc was fine with me taking that along with the CyA. No interactions as far as he knew. I wonder if it would be worth asking your doctor about that? Because it would contribute another antiinflammatory to the mix. Another one to consider, that doesn't seem to be a no-no with CyA, is Singulair. Other than that, I can't think of any other possibly safe antiinflammatories to add to the mix.

Blessings, hope you will be better very soon,
Lori
P.S. I told the guy to come remove the pencil from you, too, but he's too busy sticking pencils in other poor unsuspecting victims (since IC is such a pandemic these days, I figure there's a new victim every second or something horrid like that)....maybe tomorrow...? I hope he swings by tomorrow...

[Bozema]

Hi Lori-

Actually my doctor did suggest fish oil some time ago and I had been taking it, though I've been spotty with it lately. So I'll put it back in the mix. I'll try anything at this point. I'm very discouraged today.

Thanks for the good wishes and I'll try and get my chin up and keep on plugging along. Hope your good day continues on from here on out.

-Laurie

[ICLori]

Yup, we just have to keep trying....and hope that eventually this will work for us. We need to give it at least a good six months.

Blessings,
Lori

[ICLori]

Well had a good enough night last night that I didn't need any Ultram, and today is good so far, too (knock on wood.) I have no idea why my IC symptoms are being so incredibly unpredictable at this point - maybe that's just how the CyA works. Maybe in time the flares will get further and further apart and shorter...and maybe go away altogether eventually.

Blessings,
Lori

[Bozema]

Hi Lori and everyone,

Just posting to say I'm alive and hanging in there. My pain is slightly better - a little more controlled though I am still taking an awful lot of meds. I've reduced my work schedule to where I'm working at home 3 days and going into the office 2 days. I'm also going back into physical therapy. Basically, I'm trying to recreate the point back last April when I was in remission for 1 month (and then foolishly stopped cyclosporine).

Work sort of exploded last month when an endangered species was found on a construction site at the airport where I work and I put in a lot of overtime. That has settled down a little bit and it allowed me to settle down my work schedule too. Thank goodness I have an understanding boss.

I am so grateful for a doctor that is taking time and working with me (he spent an hour talking to me at my appointment last week!!!). I'm also relieved that my blood work last week showed that my liver and kidneys are managing cyclosporine just fine.

Anyway, I'm hopeful my pain will gradually dissipate and the extra rest I'm getting will help things settle down soon.

-Laurie

[ICLori]

Hi, Laurie, I"m glad you are at least a little bit better, that's encouraging! Hopefully you will continue to get better and better now.

It makes me wonder, if physical therapy was what helped you, more than CyA....I just don't know....

I'm sorry you went through such a frantic month at work, you must have been frazzled and exhausted...hopefully now things will be calmer.

I'm glad your doctor is working with you...sounds like a good doctor....

Hopefully you will be on your way now to remission! Keeping my fingers crossed for all of us. I'm in a flare today :( So I'm down.

Still wondering if this stuff will work for me or not...

Blessings,
Lori

[Bozema]

Hi Lori-

Thanks for the encouraging words. I'm sorry to hear you're in flare. I guess patience is the key for both of us right now.

I won't be able to restart PT until next week, so that's not it. Slower pace and more control with pain meds - definitely.

Hang in there and keep your chin up. I'll try and do the same.

-Laurie