Cyclosporine [Modified]

[Matthar]

Hello everyone,
I am a 23 y/o male with IC. I have been on several treatments/meds and have found no relief. I have what seems to be a promissing candidate. I have been being seen @ Walter Reed Army Medical Center and from what I understand they have treated five IC patients with Cyclosporine [Modified] and 4 out of the five patients have reported there symptoms to have improved dramaticly. For those that are not familiar with Cyclosporine, it is a drug primarily used for organ transplant patients so that there body doesnt reject the new transplanted organ.
My question here is, has anyone here heard of, used or know anyone who has used Cyclosporine for the treatment of IC? I would love to hear everyones thoughts on this issue.
Thanks and my best wishes for everyone,
--Matthew

[vm]

it is a drug primarily used for organ transplant patients so that there body doesnt reject the new transplanted organ

That's really interesting. Does that mean they are using it thinking IC is an autoimmune type disorder?

[darlene]

I take imuran for my Crohn's disease. It is also an immune suppresant. It doesn't help my IC.

[Dixiefireball]

I'm sorry i don't have any answer for you but would like to welcome you to the ICN and if you have the time please look over www.ic-network.com/handbook.
many icers has relief from the IC diet this could help you also its also in the handbook.
the elimron drug has helped Many icer's
Please let us know how your doing we are glad to have you with us
sending you hugs and prayers
Rhonda

[ICLori]

Hi, Matthew, I am being seen at Walter Reed for IC right now but they haven't mentioned cyclosporin to me at all! I would be willing to try anything! Who are your doctors? I am seeing the urogyns -

I want to talk to your doc because I'd love to try cyclosporin!

Welcome to the boards!

Blessings, Lori

[ICNDonna]

That's very interesting. I'll be waiting to hear how you do.

Warm healing thoughts,
Donna

[Katrina]

I will love to find out how you do....espcially since I suspect immunospressive medicine may be in my future if I live long enough....Like Darlene I have an Inflammed Bowl that at this time is successfully being treated with antibioitis and other meds....but I have been told that my future may hold immunospressive meds. I hope they do well for you.

Curious to know how else they affect you as well.

Good Luck
:kiss: :kiss:

[Matthar]

vm,
From how it was explained to me, they do not know why it has worked out so well for some patients with IC but they are leaning towards the fact that they think the pain and freq are due to the body's immune system reacting to whatever causes IC. They explained a couple of other reasons that it might have worked and I can go into more detail after I speak with my doctor again. (I just want to make sure that I am accurate with the information.) WRAMC is known for experimental procedures and meds. There were a couple other experimental treatments that they ran by me and would be more than happy to shar them if anyone is interested. :)

ICLori,
I am also being seen at the Urology Clinic on the 4th floor of WRAMC. My Urologist is Dr. Sturbis but the Doctor doing these tests is, I believe
Dr. Spearman. If you have anymore questions or if you want me to set you up with him to see if this treatment is right for you, pm me. I would be more than happy to help. :)

Katrina,
Some of the affects of this particular type of med (Cyclosporine [M]) has alot of side affects. Ofcourse, it is an immunosuppresive so it lowers your immune system causing you to be more in danger of getting cancer and other types of sickness. I personnaly have lost a little bit of hearing in my left ear (although very rare) after taking a somewhat high dose (200mg 2x a day) though, seemed to gain it back after cutting the doseage in half (100mg 2x a day). If you want I can e-mail you all the specifics on the drug including clinical trial information. :)

DixieFireball, ICNDonna, and Katrina,
I seem to be doing real good after 9 days of 200mg 2x a day and the cutting down to 100mg 2x a day for 4 days (as of this post). Although the Doctor informed me that it would take atleast 21 days to work, I have noticed some improvments most noticeably being pain and freq. I am really optomistic with this approach to IC and am looking forward to alleviate (sp?) my symptoms even more after another week or so. Please pm me for farther details. :)

vm, darlene, Dixiefireball, ICLori, ICNDonna and Katrina,
Thanks for you're replies and please feel free to e-mail or pm me.

Thanks and best wishes,
--Matthew

[ICLori]

Hi, Matthew, thank you so much for your reply and all the help! Oh I am so excited about this therapy now! I am going to ask my uro at Dewitt for a referral to these doctors, and I am sure he will do that for me because he already referred me to the urogyns to see about Interstim/bladder removal. I would like to try Cyclosporin or any other experimental treatments before doing Interstim or anything else to be honest.

Thank you so much, hopefully soon I will be joining you on writing about cyclosporin!

I hope it continues to work for you and takes the IC away.

Do you know, do you have to take it the rest of your life if it works? Or does it "reset" your immune system maybe?

Blessings, Lori

[Matthar]

ICLori,
You have to take it for the rest of your life (if it works). I would atleast try and see if it works before you get an interstim.
For the first time in 2 years I woke up this morning with out any pain, something that Narcotics couldnt even do. I am so excited that this is working and I hope they help you as well.
Thanks and best wishes for everyone,
--Matthew

[holles]

my gynecologist called and left me a message today about a new treatment for IC. something to do with the bladder missing some molecule or chemical or whatnot. i don't really know. he didn't mention the name, but i'm wondering if this is the same thing. i'm supposed to call him back tomorrow, so it will be cool if he's talking about this.

i'm all for something that will keep me from having to take meds the rest of my life. i'm sick and tired of being sick and tired.

keep us updated. thanks for this note.

[ICLori]

Hi, Matthew, I go to my uro tomorrow to ask for a referal to Dr. Spearman, wish me luck, LOL!

How are you doing on the therapy? Still good, I hope?

Blessings, Lori

[IcyAngel23]

I'm going to start taking CyA soon as well. My dr has never used it before so what dose do you take? Pm me with the doseage.

Thanks

[armslee]

I am interested in dosages as well. Following the thread I read yesterday on Cyclosporine A, I did a web search and found 3 studies on this drug ranging from 1998 to 2005. The results were very favorable for us IC'ers fighting pain.

[ICLori]

I haven't actually picked up the medicine yet - will go in a couple of weeks to an appointment to get the CyA - but since this doc has never prescribed it before, I assume he is using one of the doseages mentioned in the study. It goes by body weight, by the way.

The doseage in the latest study I saw was: 1.5 mg/kg CyA twice daily

So, you figure out how many kiligrams you weigh. Let's say you weigh 100 kg. That would mean your doseage of the CyA would be 150 mg twice per day.

If you weighed 200 kg, your doseage would then be 300 mg twice per day.

So, the dose is really going to be very dependent on weight. And, there is an older study where they used a higher doseage than that, I can't remember now, so there is some variance in what doseage the doctor can use.

When we are all starting on the CyA, perhaps we can list our doseage along with our weight so that we can figure out if we are all on the same dose or not.

Blessings, and I sure hope this CyA works for all of us - I am so excited to see more patients going down this path, I think CyA is the most promising drug for IC that I've seen so far...

Lori

[ICLori]

P.S. IcyAngel, I remember the last post you made about Cyclosporine-A was warning us all not to take it because you believe it to be very dangerous and it caused infertility etc. and your doctor told you he wouldn't prescribe it.

I'm curious, did your doctor change his mind or did you go to a new doctor for this prescription? Also, did you change your mind about how dangerous it is?

I was just wondering because your last post, you were so dead-set against CyA and now you are going to be taking it...just wondered where the change happened...

Blessings,
Lori

[armslee]

Lori-
I just looked up the drug on WebMD to see what side effects that it had. Whoa!
You should check it out. I am a bit leary now myself. I don't think I want to take anything that bad.
Wendi

[ICLori]

I already looked - and those side effects are what MIGHT happen at the HIGHEST doses (much, much higher than what we will be taking.)

In fact I am already taking Cyclosporine-A - in the form of eye drops. It's worked great for the inflammation in my eyes. No side effects whatsoever.

I go by what the studies have said. Two people in one of the studies developed mild hypertension which resolved when the dose was lowered. The benefit to their bladders remained on the lower dose.

That doesn't sound too risky to me....and I'm willing to take a chance in order to get my health back.

Every drug or surgery has a long long list of risky side effects that sound awful.

For instance, when I got my Bion in, they told me it could cause permanent nerve damage leading to incontinence that couldn't be fixed, even fecal incontinence. Did I balk? Nope. I went ahead with the surgery anyways, knowing that the chance of those things happening was extremely low.

When I was put under IV sedation, I had to sign a form that said I could die from it - allergic reaction, etc. Did I get afraid? Nope, because I knew that the chance of those things happening was extremely low.

Same thing with CyA. The chances of those bad things happening are extremely, extremely, infinitesmally low. And never happened during all the studies they've done with IC, and all the patients they've treated with this drug who had Crohn's and got better with low doses of CyA.

Although it's a new drug to treat IC, it's been used for other autoimmune diseases with good effect and very few side effects.

The studies and the data acquired from Crohn's patients say the drug is safe and effective when used in low doses for autoimmune diseases. When it's used for organ transplant...then, at the much much much higher doses, that's where it becomes a bit scarier. But then in that situation, your life is at stake, so you take the chances.

When you read a list of potential side effects, you need to also consider, what is the likelihood of this happening to me?

I would urge anyone to talk with their doctor about this before dismissing the idea of CyA completely, as CyA is shaping up to be the most effective medicine to date for IC, and it would be a shame to turn your back on such an effective medicine. Of course, it's your choice, and I wish you well whichever way you choose.

Anyway, I will be starting CyA (with nary a worry in the world about side effects) and will let you all know how I am doing as it goes along.

Blessings,
Lori

[ICNDonna]

For me it would have to be a last resort, primarily because of the possibility of developing tumors and/or cancer. My father and brother both had cancer and most of my father's siblings also died with cancer (my Dad had a fatal heart attack, but also had a terminal cancer that would have taken him within months). I'm considered at a higher risk of developing cancer because it is so common in relatives.

Donna

[ICLori]

I absolutely agree that this should be a last resort - even though the chances of these things happening at such a low dose are very small, the possibility is still there. Just like with surgery - your chances of dying on the table are very low in most operations, but the chance is always still there - so surgery should always be a last resort, too.

In my case, nothing else has worked, I'm on my way to bladder removal, so taking CyA makes sense for me. Anyway, I'm happy to be the guinea pig for the ICN. But don't anyone try to talk me out of taking this...it won't work.

Blessings,
Lori

[ICLori]

P.S. The two biggest risks, I am told by my doctor, with this dose of Cyclosporine-A are developing high blood pressure and acute (temporary) kidney failure. As soon as you stop taking the Cyclosporine-A, the kidneys right themselves again and everything is fine. But that acute kidney failure is a big thing...of course it hasn't happened to any patients in the trials, but it COULD potentially happen. So I am aware of it. And that is why I will be going in every week to have my blood levels of creatinine monitored and my blood pressure checked, so that we can catch any developing problems and stop them in time.

Anyway, those are the two biggest risks, in case anyone wanted to know.

[massagedoula]

And also if I am correct, ICLori has tried pretty much every drug and therapy out there for IC except CYa. So this isn't a first resort, like if you just got diagnosed with IC, you shouldn't run out and start taking CYa. Many people do well on more "commonly" prescribed meds with a less severe side effect profile. However, for some people like Lori, nothing seems to work (for long periods of time, that is) so she is (I am guessing) trying every med she can before deciding to get bladder removal surgery. So I think this is her last med on her list to try....I hope it works!!!!

[ICLori]

Yup, that's true! But more and more urologists are urging their patients to try CyA because the studies are pointing more and more to it being really quite effective for IC. We are seeing more people come to these boards saying their uro is recommending CyA, and I predict those numbers will continue to increase over time as word spreads among urologists about its effectiveness.

Blessings,
Lori

[IcyAngel23]

ICLori-

I did see another dr. In fact I see Dr. Parsons and he has run out of ideas to treat me so this is the last resort before bladder removal. I'm 24 and I want to keep my bladder for as long as I can. In the past two minths I've lost almost all ablity to void on my own and the pain rarely lets me out of bed. So as a last resort I'm going to take it. I know the risks are slim and a rare but I seem to be in that small percent everytime. I'm always the one who ends up with crazy side effects. I'm praying that this will work.
What dose is everyone taking. I saw 1.5mg/kg but I hear there are different doses from each dr. Thanks

[ICLori]

Hi, Icy, I think you are making the right decision to try everything possible before removing your bladder. I don't blame you, also, for not wanting to spend the rest of your life in pain and miserable. That's how I feel too - I'd rather try something even if it's risky, if it has a good chance of putting me into remission!

I'm going to think positive on this and believe that you and I will get remission without any bad side effects. Wouldn't that be wonderful if it could happen? The studies look really good, don't they? Plus that one doctor I know back at WRAMC is using cyclosporine-A on his patients, and he's having the same success rate as in the studies...that gives me hope that the studies are accurate.

I'm not really sure what dose I'll end up on - I will let you know when I pick up the prescription. It will be interesting to see what doses are prescribed to people, as more and more IC'ers are prescribed Cyclosporine-A.

Blessings and keeping my fingers crossed,
Lori

[ICLori]

Just read an article about how the CDC has urged doctors to consider all of us of childbearing age, whether or not we plan on having children, as "pre-pregnant." That means none of us are supposed to ever smoke, drink, handle cat litterboxes, and we all have to take folic acid, just so we can make sure we are pure vessels for the fetus in case one shows up.

The CDC also basically urges doctors not to prescribe any medicines to women of childbearing age that might have a negative impact on a potential fetus, even if the woman is adamant that she does not want children. That could possibly mean that birth control pills could be banned, it could become illegal for all women of child-bearing age to take any OTC medications, since those are also verboten during pregnancy, and a woman between the ages of 11-55 is supposed to be considered pregnant at all times, whether she is or not, just to make sure any potential fetuses are kept safe.

I'm actually really worried that I'm going to walk into my doctor's office in two weeks and hear, "I can't prescribe Cyclosporine-A to you, I have to consider you as pre-pregnant according to the CDC report. Your health is not nearly as important as the health of a potential fetus."

Every day I read something in the news and I think, "it just can't get any worse than this." Then the next day I read something else, and I think...oh, it just has.

It's been so long since I've read "The Handmaid's Tale." I haven't read it since the mid 1980's. I will have to go out and buy another copy so that I can see what will be happening next.

Blessings,
Lori

[IcyAngel23]

The crap the CDC will publish amazes me. We are suffering and just trying to get by on the day to day. I want kids but I can't even think about that until I'm better.
That Lori for the support. Hope that Cyc A works well for you.

[Vicki]

Lori- I too have tried every med under the sun, as well as, instills and an interstim trial. I go to the doctor next week and I am asking for either cya or chlorpactin instills. Otherwise, I want my bladder gone. It is awful to live life drugged up on amytriptiline. I am always tired and can't be there for my kids. Blessings and Hope, Vicki

[ICLori]

Thank you both so much. I know it's scary to be trying this drug, but I hope and pray that we will get remission without anything bad happening.

I looked up chlorpactin instills and I saw a couple of stories about people who went into remission after a series of the instills, so I am going to keep that one in mind to try, and I do think it might be worth trying! I just hope it won't be painful or anything for you if you try it. I don't know if that is one of those instills that hurts or not.

Well, I keep telling myself, this is going to work for all of us, it just has to! I promise starting from the first day I take the CyA, I will report any symptoms here, whether or not my bladder gets better, everything I can think of that someone might be curious about or that might help people learn more.

Maybe I'm overreacting about the CDC thing. It's just that I've been denied medicines I wanted before, because of being of child-bearing age (didn't matter that I was on the pill) and I wondered how much worse it's going to get now that they came out with this.

Blessings,
Lori

[Vicki]

Matthew- I am curious to know if you are taking any other meds with the CyA? My dream is to get off of amytriptiline! It makes me so groggy, crabby and hungry. -Vicki