what is this treatment about?

[dminton]

Can anyone explain what this treatment is and how it works? What sort of doctor does one have to see to try it? There is certainly no one in my area who uses it, so do you have to go to a teaching hospital or something? Any information would be appreciated!

Diana.

[ICLori]

Hi, Diana!

Cyclosporine-A is an immunosuppressant drug that is sometimes used in cases of severe autoimmune disease that has not responded to other medications, and is used in cases of organ transplant to keep the body from rejecting the new organ.

It's not a drug to be taken lightly, at all. In fact I had to go to five different doctors before I could even find one who had the courage to let me try this. He saw that I was suffering terribly, and had been for years, with pain every single day, and he saw that I had tried every single conventional treatment for IC out there as well as experimental ones such as the Bion neurostimulation device. He saw that at that time my bladder capacity was 450cc under anesthesia, and that I was on my way to needing bladder removal.

Because of all of these factors, he reluctantly agreed to let me try CyA. He started me out on the lowest dose, which didn't work. It took two raisings of the dose (to close to the max safe dose) before it started working for me. I do believe that I am in remission because of the CyA. I'm not taking anything else for my IC, so the remission is either due to CyA or due to just some natural remission.

To find out more about how effective this medicine is for IC, please read the following link that gives studies regarding this med and IC (which you can take to your doctor if you like.):

http://www.ic-network.com/forum/showthread.php?t=29693

BTW, you do not have to go to a teaching hospital to find a doctor to prescribe this, but it may be very hard in general to find a doc willing to prescribe this since it is a very risky drug (increases the risk of fatal infections, increases risk of cancer both when you take it and even for the rest of your life, and the side effects can be awful, including possible kidney failure and high blood pressure.) If I were a doctor, I would NEVER prescribe this to an IC patient unless that patient had tried every other single med out there for IC, including medicines for pain management, and failed all the treatments.

Here is a list of some of the side effects you might experience with this drug:

http://www.ic-network.com/forum/showthread.php?t=29694

Best of luck to you if you and your doctor do decide to pursue this treatment. I hope that you will get the remission that I have.

Blessings,
Lori

P.S. Since they don't know what causes IC, they also don't know exactly how this medicine works to give some IC patients remission. The theory is that it stops some autoimmune reaction and that's what gives the remission (makes sense to me, since this is a drug used for severe autoimmune diseases) but an alternate theory is that it simply stops the inflammatory cascade of chemicals in your bladder (I don't know how, didn't take nearly enough science/pre-med courses in school, LOL!)

[dminton]

Dear Lori,

Thank you very much for your thoughtful, thorough response! I'm SO glad that the risk you have taken is not in vain and that you are getting relief. It does sound like a "serious" med not to be taken lightly. Sometimes we have to do things that are scary and they turn out okay! Sounds as if your case is one of these. I wish you the best.

I know there are things I haven't tried yet, including TENS and Cytotec, but as for all the conventional things, I've done them all. I used to have remissions when I was younger, but have not in about 8 years now.

Diana.

[ICLori]

I'm sorry that your IC (like mine) got worse and worse over time....I know you must be very tired of the pain and other symptoms.

There are some people who have gotten quite a bit of relief from TENS and also from Cytotec (although it doesn't seem to work for the majority of people, unfortunately) and I wish you the best of luck in whatever remedy you choose to try next. (Wouldn't it be nice if we could just take some aspirin or something and it would go away forever?)

Blessings,
Lori

[IcyAngel23]

Lori-

Hey I know its been a long time since I was on. I've been off of CYA for about 45 days and my IC is just getting worse. Now I can really tell how much CYA helped me. I kept getting seizures and migraine so I can't go back on it. If I could I'd keep taking it. So being off of it really made me aware of how much it made my IC better. Hope all is well with you. Take care

[ICLori]

Hi, Kristen, I'm so sorry the CyA didn't work out for you. :( I feel so badly for you. I wonder, did the migraines and seizures happen because of the toxic blood levels of the CyA, or were they also happening even when your blood levels were normal? Just idle curiousity. This is a very, very odd drug, as far as side effects go - oh I'm getting the "cyclo-fur" stuff now - a very white fine downy hair mustache (can't see it but I feel it, so shave I must, LOL) and every single hair on my body is growing all the time, there is never any resting phase for the hair. My hairdresser told me that he can't believe how thick my hair is (it's baby-fine, so each strand is small, but there are an incredible number of strands crowding my head...)

Anyway, it's a strange drug. I'm glad it's working for me so far, though. Kind of scary to be the only one on it here, now, though!

I hope so much that there will be something that will come along soon that will make it so you don't have to go through that big operation. I mean, people have gotten through it and have a good life on the other side, and don't regret the operation, but it's still a pretty big procedure and I wish you didn't have to go through it. But....anything would be better than the bladder pain you are living with right now, I know.

Wishing you the best of luck, and thank you for keeping in touch, I was wondering how you were doing...

Blessings,
Lori

[IcyAngel23]

Lori
Once I had toxic blood levels they couldn't get it to a normal level even on a smaller dose. So I had to stop. I really miss it though. My hair grew 6 inches while I was one it. I had my hair highlighted and it normally last 6-9 months but my hair grew out so quickly. So in three months it grew out so much. My hair was growing wild too. Glad to hear you're doing well.

[Bozema]

Hi Lori and Kirsten-

It's good to hear from both of you again. Lori- I'm glad to hear things continue to go well with you on cyclosporine. It is a strange drug.

Kirsten - I'm sooo sorry to hear your symptoms are returning and you are continuing to struggle. Have you given any thought to what your next steps will be?

As for me, I doing pretty well - like Kirsten, I've been off cyclopsorine now for about 6 weeks. However, I'm feeling better, not worse. I still can't work more than a couple days a week in the office. I did three busy days last week and I was worn out and a little flarey afterward. But I am working out and doing more activities than before and my flares are much more under control. I am only taking baclofen and occasional klonopin when I flare, continuing to support the theory that my problem is PFD, not IC. The vaginal valium suppositories work for me by the way, in certain situations, especially combined with heat. I've also stopped taking vesicare and don't feel I need it. I'm working on the details to get physical therapy started again. I think it will be soon. My goal is to use PT to gradually wean me off the drugs. I really do feel I'm on the right track with my daignosis and treatment program now.

My blood pressure is back to normal now. However, I've been struggling with fever blisters and bronchitis since I went off cyclosporine and its clear my immune system has not quite recovered from it yet.

Anyway, I thought I'd stop and say hello and let you know that my cyclosporine buddies are still in my thoughts.

-Laurie

[Bozema]

Lori-

The cyclofur is odd, isn't it? Not so bad since its fine and nearly invisible, but yes, you do grow more hair than you ever realized. My hairdresser said the exact same thing to me - my hair is also fine and it was thicker than ever - not the greatest when your hair is very curly like mine. My facial and arm fur has subsided now after 6 weeks off and I get my hair cut Friday, so we'll see what she says about it now.

As for the mustache, I had the hairdresser wax that off along with the hair on my chin and cheeks and I had her do my eyebrows too for good measure. My eyebrow hair also started growing in curly - that has subsided too. The waxing was much better than shaving - no stubble - and I didn't have to deal with it between haircuts. And it didn't cost much and stung for only moment. I doubt that anyone else besides me (and the hairdresser) ever noticed the change since the hair was so very blonde and fine, but the waxing made me feel better and basically made cyclofur a non-issue.

-Laurie

[ICLori]

Hi, Laurie! I hope so much that your physical therapist will be able to put you into complete remission - I am very hopeful that you'll go into remission, because you did before! It might just take awhile is all, for the physical therapy to really work.

Yeah, that cyclofur is really something, LOL. I don't mind it so much since it's basically invisible...but I do shave it over my lip because it doesn't feel right to have a mustache there.....

Thank you for checking in...it feels so weird to be the only one now on Cyclosporine-A, and the only one that it worked for, without terrible side effects.

I think that it will leave your system completely pretty soon and that your immune system will rebound. It's funny, but I don't seem to have a lot of signs of being immunocompromised...no cold sores, no other problems, no colds, etc....it's just strange how this drug works differently on so many of us.

I'm hoping that after your PT, you'll be able to write that you are in remission and back to living life the way you'd like to!

Blessings,
Lori

[Jean12]

Once again there is a leader among us and once again it is Lori (or should I say still?). It has been through your personal courage and experience we all have benefitted. Starting the ICN, researching and passing on your knowledge, trying treatments yourself and letting us know how they work for you. By passing on ecouraging words, wisdom and knowledge for all treatment regimes, and reminding all that though we share the same illness, our experiences are unique and to try each and every treatment out there that feels right for us regardless of another's experience is an invaluable gift. Once again you are on the forefront. The cyclosporin is indeed a powerful drug and your courage to not only try it for yourself, but to pass on to us what have put learned through a lot of research and personal experience is appreciated by us all. I know that all of us on the board have benefitted from your initiative and I for one want to thank you for taking the time and effort to educate us all.

Bless you for what you have done for us all and as always, my prayers and thoughts are with you and each of us as we navigate through this jungle. And yes, I/we know Lori you have a lot of help and it is because of that help that the network runs smoothly (at least from this viewpoint), but I'd like you to take a pat on the back with pride for what YOU have done as well as you wonderful team.

Jean

[ICLori]

Eek - Jean - Jill Osborne founded the ICN and runs it, I didn't have/don't have anything to do with it! I'm not even part of the staff or anything!

Blessings,
Lori

[Jean12]

My appologies Jill - no excuse here except stupidity. I've been on this board long enough to know better. And kudos do go to you and your staff for your efforts, sorry I gave credit to the wrong person. You and your team deserve a pat on the back for sure.

However, with that said, I still think Lori deserves one also. You have been a pioneer here on the board and have been quick to pass on your experiences and have been supportive and encouraging to all.

This has been one of the more humbling faux paus in my life. Sorry for giving the wrong credit to the wrong people, but not sorry for giving credit to those of you who deserve.

Once again please accept my appologies, no harm intended, only praises and prayers for all.

Jean

[icnmgrjill]

LOL! As I said to Jean privately, no apologies necessary. I've done the same thing myself many times, especially now that I have menopause brain! LOL!
Thanks for the kind words too!!

PS.. When you do things like this, you can always go back and edit your post to make corrections!

Jill

[ICLori]

Thank you so much for your kind words, Jean! I make mistakes like that all the time, too. I mean, look at my user name - it was only months (or a year or so) after I picked my user name, that it occured to me "hey, there's not much difference between ICN and IC in my user name, that might confuse people" and by then, I didn't want to lose the posts I'd already made, so I just stayed "me" but I have been kicking myself ever since for not having made a better user name. I wish I could edit my user name somehow and have that edited user name go to all the posts I've made. Something like "LoriWithIC" maybe. You know, back when I was in pain, especially, I just couldn't think straight at all. Pain makes it harder to do anything!

I see so many people here on the boards passing on their experiences, and I know you will, too, as you go through the treatment process...I know that when someone comes here in the future, wanting to know what the Bion is about, you will answer their questions patiently, because I've already seen you do it! :)

I think we do that because we realize we are a sisterhood/brotherhood, all of us with this terrible disease, and we have to help each other because our doctors don't always have all the answers that we wish they had, and even if they did, sometimes we have questions at two in the morning and our doctors usually don't like getting calls at two in the morning, LOL! But there is always this board, thanks to all of Jill's hard work and her vision for helping others with IC.

I look forward to the day when we all jump for joy on these boards because a cure has been found for IC...or a wonderful remedy with close to a 100% remission rate, with few or no side effects....I hope it won't be too long from now.

Blessings, and thank you again for your kind words, and thanks to Jill for these boards and also for being so understanding,
Lori
P.S. I'm hoping that you will take a moment to edit the previous post, because I'm worried that a newbie might come on the boards and get confused, LOL! :) I edit my posts all the time...typos, stuff I say wrong, you name it...99.9% of my posts, I have to edit.... :)