New Forum

[icnmgrjill]

Cyclosporine is a new, experimental therapy used by some IC patients. We'd like to hear your experience with this medication. Share your story here!

In my haste to open this forum at the end of a very long day, I didn't explain cysclosporine clearly as a "steroid alcohol" rather than as a traditional "steroid." One of our users, Laurie, has appropriately taken me to task. So, I'll post her clarification here!

"Cyclosporine isn't a steroid in the sense that it is not an anabolic or androgenic steroid nor is it corticosteroid and it has a very different function than those drugs. Instead, it is an immunosuppressant drug derived from fungii that was originally used in transplant patients and now is regularly used in the treatment of rheumatoid arthitis.

Because of its chemical structure, it is classified as a steroid alcohol, just as cholesterol is considered a steroid alcohol. Yet cholesterol is not considered a steroid in the common use of the word, and neither should cyclosporine."

Jill

[ICLori]

Hi, Jill, thank you so much for this forum! I think there is some interest in CyA and several of us are currently on it. I don't know how it will pan out - I don't know if it will be as effective "in real life" as it has been in the studies, but I hope it might.

Is Cyclosporine-A a steroid? I know it is often used in conjunction with steroids for transplant patients, but I thought it wasn't actually a steroid...?

I found this about its mode of action:

Mechanism of action
via Calcineurin
Normally activated by stimulation of T-cell receptor-associated CD3 complex
Inhibited by Cyclosporine and Tacrolimus
Final pathway: Reduced synthesis of NFAT & IL-2

I don't know if that helps or not...

Anyway, I'm pleased as punch there is a forum for CyA now. I will go post the abstracts of the studies that we know about for CyA so people can see them.

Blessings,
Lori

[Betsie]

Wow,

Happy for you Lori, as well as the others who are currently on this Tx. I know you have worked so hard to not only find your answers, but to help others with this tx option as well.

I am glad to see you now have a recognized forum where you can all easily share info and progress!

Thanks Jill for staying tuned to the needs of so many here. :)

[ICLori]

Hi, Betsie, thank you. Actually I'm not doing so great right now - have nausea and a lot of tiredness, and an elevated heartrate at present - I hope the side effects will go away soon.

I'm doing better (slightly) with my bladder - I mean I have had some better days lately - not really soon enough to tell if it's helping a great deal or not.

In one study, there was one percentage of people who got better at the one-month mark (I think it was only about 1/4?) and then at the 3-month mark (a little over half) and at the six-month mark (75%). So I think this will take a few months for me to really figure out if I'm benefiting or not. It's kind of like Elmiron, I guess, one of those drugs that you have to give 6 months to, before deciding if it works or not for you.

I wish good luck for anyone who is trying CyA or will try it in the future.

Blessings,
Lori

[IcyAngel23]

Betsie-

I've been on CyA for 12 days and I've seen a big change in my body as well as my bladder. I'm 24 and I was homebound and bed-ridden for over a year. I had pratically given up on finding a treatment to help. I've seen Dr. Parsons(who I didn't like),Dr. Brubaker (best urogyn in chicago),Mayo clinic uro team and a few others. I was told there was nothing more they could do for me. I was heart broken and crushed. I had fought so hard for three years and there wasn't an end in sight. So I decided to go out and take a proactive approach to my care. I found CyA and was leary at first but in my eyes I didn't have anything else to lose.
I had mouth sores(on the roof of my mouth),nausea,fatigue,muscle cramps,hot flashes and just all over ickyness. Those lastsed about 7-9 days. I still have a bit of nauseas but only about an hour after a dose. If i take a 7up and crackers I'm fine soon after. I still throw-up every so often but it dosn't bother me at all. My bladder pain has decresed dramatically since I started it. Now I still have bladder pain but it only lasts a few hours if that. I was constantly in pain with no relief before CyA and I'm so happy to have gotten part of me back.
I went jet-skiing over the weekend and didn't have to worry about my bladdder hurting or when I had to find a bathroom. I was voiding about 75x a day and now I'm down to 25 or so. I'm also the one who always seems to get all of the side effects and even some not listed on my pills. This time I did happen to have more side effects (well from what I heard from Lori&Laurie) but they didn't last long or have any risky ones either. I also had a weak immune system before IC so I'm still healthy. In fact I haven't felt this healthy in years. Don't get me wrong I still have pain here and there and I'm not 100% better. I have seen big changes in a small amount of time but that doesn't mean everyone will react the same way. I think it is one of those drugs like Lori said that you need to give it time to work. I seem to be the odd ball in that aspect. I fought my drs and my parents tooth and nail to take this drug. I researched it like crazy and I wanted to try it. I wanted to be able to tell myself that I did everything in ym power to get better. The risks were overwhelming but I started to look up other drugs I've taken and all of them had the chance of serious side effects. I knew that if I had kidney or liver problems I could get off of it quickly without perm. damage. My dr monitors me very closely so if anything comes up it can be taken care of right away. So the fact that I was monitored and going to be tested every week or so eased my mind. I was very worried about getting sick die to the lessened immune system because I seem to get sik at the drop of a hat. Even with the flu shot I would get it 6-7 times. Walking in the rain use to get me really sick but I've just been really careful lately. My new best friend has become that Purell hand gel. It keep germs at bay and give me piece of mind.
If you're suffering like I was think if you're better off without it. Can you afford to pass up a possible treatment? I know how scary it can be and I just don't want others to let fear drive them away from this drug. All I can say is that so far it has helped me like nothing else has. I was told that I had the worst bladder that Dr. Parsons has seen. I had a cysto done in his office and he had collegues and staff packed into the small exam room to observe my bladder. I was a visual aid not a person. I had three things going against me. Small bladder,detriration of the bladder muscle and IC. So I gave up until I started looking on my own for help, outside of what my drs advised. They told me all they could do was make me comfortable. At that moment I felt like I was being sent home to die.
Today I'm happy and full of hope. I just want to help others and spread the word on this drug. It isn't the normal treatment but I was never normal to begin with.
Good luck to anyone who is thinking of trying it or is currently on this drug.

Kristin

[Bozema]

Cyclosporine isn't a steroid in the sense that it is not an anabolic or androgenic steroid nor is it corticosteroid and it has a very different function than those drugs. Instead, it is an immunosuppressant drug derived from fungii that was originally used in transplant patients and now is regularly used in the treatment of rheumatoid arthitis.

Because of its chemical structure, it is classified as a steroid alcohol, just as cholesterol is considered a steroid alcohol. Yet cholesterol is not considered a steroid in the common use of the word, and neither should cyclosporine.

-Laurie

[IcyAngel23]

Thanks Laurie I didn't know all that about CyA. Good to know

[ICLori]

Thank you so much, Laurie, and thank you too, Jill, for helping me through my confusion. I have to admit I don't know anything about chemistry or anything, so when I saw the word "steroid" the only thing I knew was prednisone or something like that (I didn't know cholesterol was a steroid, too, I'm telling you, it's so embarrassing all the things I don't know about math and science :( )

Anyway I was kind of freaking out because all I know about steroids (the ones I was thinking of, I mean) is that they can wreak terrible havoc on the body (I guess I'm more afraid of steroids than I am of CyA, which maybe is completely nonsensical, given that CyA is pretty scary in and of itself....)

Hmmm..fungi....that doesn't sound so bad....aren't there other drugs made with fungi? Like penicillin? Or was that a mold? I don't remember now. There are some hallucinogens that are fungi, right? Maybe that's why we felt so giddy the first few days on CyA, LOL. Just kidding.

This is kind of interesting...I just told people I was taking an immunosuppressant - didn't really know any of the details.

Thanks for this new forum, and thanks for helping me (and maybe there are other people like me who didn't know what CyA was) understand the chemical nature of CyA.

Blessings,
Lori
P.S. Wanted to give an update, for the past several days, I have had almost no bladder pain at all, I'm much better bladderwise, and just today I finallly stopped having diarrhea and nausea so I'm feeling better that way, too. Still a bit more tired than usual, though, which hopefully will stop in time.

[ICLori]

P.S. Jill, would you like any of us or all of us to write about our experiences with CyA at some point? Laurie and Icy are both better writers than I am so I'd nominate them (if they'd be willing to share their wisdom on CyA.)

Blessings,
Lori

[ICLori]

Just found out what a steroid alcohol is...LOL...gosh I learned something new today!

I found this definition:

steroid alcohol - any of a group of natural steroid alcohols derived from plants or animals; they are waxy insoluble substances

There's even a T-shirt for sale that has the definition of steroid alcohol on it, LOL. I'll probably pass on the T-shirt, though, tee hee.

Hey, let's hear it for waxy insoluble substances! Hmmmm...sounds like what the pores on my nose excrete....sigh.

[IcyAngel23]

Lori-
Thanks for posting the def. I was going to look it up myself when I thought of it.
I try not to think what's in those pills. The smell and taste of them is really getting to me. I keep telling myself ..."it tastes like burnt coffee"
Lori I'm sure you know what I'm talking about.
I'll pass on the t-shirt but I'd love one that has a clever saying about CyA. I'm not in the creative mood right now so I don't know what it would say.

Lori-
Thanks for the compliment about me being a good person to write about my experience. I just try to write what I would want answered if I was on the other side of this. I'd be happy to share my wisdom about CyA with anyone who will listen. I feel like a spokes person for it anyway. Of my own doing of course. I'm not one to keep quiet about a drug that helps.
Glad to hear you had a good day and hopefully there are more to come.
My update would have to be.....I'm so exhauted. I've never been this tired in my life. No bladder pain or anything like that.

Kristin

[Bozema]

Lori & Kirsten-

Yes, I saw that def too. It makes it clear that a steroid and a steroid alcohol are really not the same thing at all. Like a lot of things, they are part of a broad category of chemicals, of which only a few are known by the common name. That said, I'm not the best chemist in the world. I took organic chemistry in college but pretty much stunk at it. In fact I think it was my worst subject.

I pulled out the package insert that came with my prescription and read it again and nowhere it does it mention the word "steroid." Instead, it talks a lot about the drug's immunosuppressant properties, which we all know about.

I'm with you that the medication has a nasty smell. I can't describe it but it sure stinks. I was reading about the liquid emulsion version they used to use and I can't imagine how anybody could get thay nasty stuff down with out gagging. At least with the pill, I can gulp it and wash down with lots of water.

Feeling pretty good today and rode my bike this morning before it got too hot. My stomach has been a little upset, but part of that is that my lifestyle has not been conducive to healthy living. We have spent the last 3 nights out at friends' houses and are going out again tonight. And we have friends coming for dinner tomorrow after work. A little nuts. It also doen't help that it's scorching hot and humid (unusal for our part of the world).at least the friends tonight have a pool.

Hope you are all having a nice weekend-

-Laurie

[IcyAngel23]

Laurie-
That makes me feel so happy that you're able to be out and about. I've been having nausea too alot. I think it's the heat. When it's a bit cooler I'm fine but when it gets humid my body just doesn't like it. So stay cool and sounds like you're having an awesome weekend. Take care
Kristin

[ICLori]

Hopefully the nausea will go away for both of you as quickly as it did for me - I had a bout of nausea when I first started CyA, for about a week or week and a half I think, then I had another bout recently that only lasted about a week or so too. So maybe that's just how this goes, we get side effects now and then. Or maybe it's just in the beginning, I don't know. Hopefully it will go away and stay away, LOL!

Crackers and ginger ale until then...

Blessings,
Lori

[IcyAngel23]

Yeah 7up are my new best friends. I was so sick of saltines that I got Ritz top'em crackers. Just a bit buttery and crispy not like the regular ritz. It has a good taste without being hard on the stomach. I think I"m going to breakdown and ask for some pills for this nausea. I've been feeling really rundown so I'm hoping it's just the heat and meds together and not a bug. NO bladder pain in over a week so I'm very happy. Once theses side effects go away I'll be a happy person. Thanks Lori for the suggestion. I'll have to try ginger ale too.
Take care
Kristin

[saptree]

This is all very interesting. A few years back I was working with an immunosupressant drug that my company makes- doing lab tests and such, and my IC was was behaving very well. It had crossed my mind to consider immunosupressant thearapy for IC and suggesting it to the research people. The other interesting thing is that whenever I have a cold, my IC is not a problem- can almost eat anything. Now I'm in the research dept (I'm a pharmaceutical analytical chemist) and indirectly involved with a new drug in clinical trials for IC. I'm very excited about having two more potential options as my bladder is killing me right now. Is it the heat or what?
Sherry

[IcyAngel23]

That sounds awesome that you involved with a new IC drug. CyAis the last resort so try other forms of treatment first. I'm feeling worse wth the heat but I think it might have to do with CyA.
Kristin

[Bozema]

Sherry-

It's interesting to hear your experiences with immunosuppressant therapies. One of the other threads in this section contains the research studies on cyclosporine that you can download and review with your doctor.

I am not so much in the same mindset that cyclosporine is a last-ditch treatment. No doubt about it, it is a serious drug and there are other more conventional treatments that perhaps should be tried first. But if you have had IC for awhile and tried the "typical" treatments and not responded well, I think it is well worth discussing with your doctor. A lot of doctors are showing some hesitancy given the newness of this treatment and lack of experience with the drug. But that said, if patients continue to respond as they did in Finnish studies, I would not be surprised to see cyclosporine become the first-line drug of choice for IC in a few years, especially since cyclosporine showed substantially more efficacy than elmiron in a side-by-side comparison.

Anyway, time will tell. Good luck.

-Laurie