What is CyA suppose to do?

[IcyAngel23]

Ok so I found this blurb about CyA. I know it's alot of medical garble but you can get the jist of it. I always wanted to know what it was suppose to do to help me. I tried to get the medical def for the big words but no luck. So I hope this helps you to understand what CyA is suppose to do.
Cyclosporine is well known immunosuppressive agent used in organ transplantation. Cya inhibits the calcium-dependant phoshatase calcineurin,which dephoshorylates a transcription factor required for IL-2 activation of T cells. Cya inhibits allergic conditions, including mast cell activation. In one open label study of 11 patients with intractable (Difficult to alleviate, remedy, or cure)IC that had lasted for up to 6 months, CyA(initial dose 2.5-5.0 mg/kg orally,followed by a daily maintenance does of 1.5-3.o mg/kg orally) reduced micturition, freq and bladder pain significantly in most patients.

[ICNDonna]

It's a medication that helps suppress the body's immune system so a transplanted organ won't be rejected as a foreign body.

It's currently being tried on a few IC patients with some success.

It's not usually given to women of child-bearing age.

Donna

[ICLori]

Thanks, Icy and ICNDonna, this is great for helping people understand what CyA does!

CyA is in that category (my doc told me) of, "we don't know if it causes birth defects or not...it's unknown...." so that's the reason for the caution with women of child-bearing age.

However, Kristen and I are both in the category of child-bearing age (me just barely, turning 45 next week) and we were given CyA, so if you really want to try it, don't let that discourage you from asking....

Blessings,
Lori

[IcyAngel23]

Lori is right. I'm 24 and I'm taking CyA. My uro doesn't want me to get preganat but if I do I can get off of it.
Thanks ICNDonna for the info. I posted this so we could educate others as to how it works for ICers. Even though it's a drug used for transplants it has many off label uses. IC being on of them. Don't let your age discourage you because it is used on people of all ages. In fact I totally believe being younger is a plus when taking this drug.
Don't let a little thing like age get in your way.

Kristin

[mela414]

Thanks for that info! I think I mght talk to my uro or even my allergist about it. I seem to be having a lot of problems with mast cell degradation and am getting a lot of allergic reactions to new foods and medications. Maybe it is somehow all related.
Please pass along anymore info that you have while I search and find info I will post it as well.
thanks,

[ICLori]

Mel, there are threads (and a category) specifically addressing Cyclosporine-A where you can learn more. Keep in mind that you should not ask for (and your doctor will most likely not prescribe) this medicine (it has significant risks) until you have tried and failed every other standard IC med out there.

Blessings,
Lori

[IcyAngel23]

Yes!! Lori is right and everyone should remember this is the last resort. Most drs won't touch it with a ten foot pole. My dr probably wouldn't give it to anyone else either. This is a great option if you're in the small percent that has severe and uncontrolable IC. Maybe some day it will be the standard of treatment but for now it's just very hard to get it prescribed.

[jayess]

If this is so effective, why wait until everything else fails? Reminder again, I'm suffering from EC, and still having a hard time finding anything that will help. I've found a new uro and will see him (I'm a male) for the second time in October. I've done so much reading on the IC board and I haven't a clue as to where to start with meds. Do narcotic meds stop frequency along with mimimizing pain? I know they can constipate. I read many posts the other day about drinking water. With me, it increases frequency, which I definitely don't need. Any suggestions?

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Immunosuppression medications have many side effects. The lists go on and on, but if nothing else works for IC/pelvic pain or one has to keep a transplant from rejecting which is saving their life then the benefits obviously out weigh the side effect. You could do a search on the Internet for "immunosuppression" and "transplants" to learn more. The little I know about immunosuppression from considering a pancreas transplant alone for treatment of diabetes is scary, and it has taken me years to decide to proceed with listing for the transplant. Some of the side effects are increased lipids, blood pressure, risk for penumonia leading to death, and many types of cancers. Yet for some of us once the risk versus benefit analysis is completed with a great deal of thought it is worth taking immunosuppression for the treatment of our diseases. I think it is a very personal choice. I am very excited to see this being discussed on the ICN board. Thank you to all those who are so brave in trying this treatment and sharing it with us.

Norcotics or should we say opiods can reduce pain if you find one that works for you, and in my experience they have also reduced urgency. They deaden feeling in the body and go thru the centeral nervous system, so even when you cut yourself or run into something it isn't as painful. (Ugh my poor body knows! LOL!) Many times other medications besides opiod are used such as muscle relaxers, anti-depressants and other meds to make a soup, so a patient can take less and they work together as a group. That is one of the newer thoughts in pain management. There are many great books on pain management out there. If you are interested in reading, please feel free to private e-mail me.

If you do try opiods the constipation must be kept under good control because of the IC and PFD being flared by it. Many doctors use stool softners and some use Senekot-S. There are solutions for treating the side effects.

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If this is so effective, why wait until everything else fails? ... Do narcotic meds stop frequency along with mimimizing pain? I know they can constipate...

[ICLori]

Thank you for this excellent answer, ads! Another one to add to the list is posssible kidney failure on this drug. I have to be monitored frequently for both blood pressure and kidney function while on this drug. And, as you said, who knows what cancer I may end up with as a result of taking this? I also have to make sure to get my flu shot every year because I am considered in a high risk group now.

Plus, CyA is effective in the research studies....and the studies have been very small so far, involving, say, 20 patients or so. We don't know how this is going to pan out in real life. Sometimes one small study will show a drug to be effective for IC, but then another study or real life will show that it's not nearly as effective as they thought. This is still very experimental. I put that part about researchers in my signature mostly because I had some people telling me I was nuts to try CyA and that it wasn't safe, etc. I was countering with, "I'm NOT nuts, CyA is shown to be both effective and reasonably safe." Actually "safe" and "effective" were the two words used by one researcher in summing up CyA treatment for IC. Those words give me a lot of hope as I'm trying this experiment upon myself, and I reflect on those words almost every day in fact. Lately I've been doing well on CyA and I'm thinking, "Maybe this will work" but I know I'm not in remission just yet...I hope I will get there someday.

Anyway, hold on - try all the other meds for IC and EC first - including opioids - they carry less risk than this drug. If nothing else works and you are still having awful symptoms, and the choice is either bladder removal or CyA, then maybe you and your doctor can weigh the relative benefits and risks of bladder removal surgery versus CyA. I honestly do not know which choice is least risky, or most effective. You should never consider using CyA, until you are at the point where it is your last choice along with bladder removal.

Blessings,
Lori

[Bozema]

Hi everyone-

I'm the third person taking cyclosporine and I'm also of childbearing age, so I don't think that's a major consideration. It probably could be an issue if you are thinking of getting pregnant and definitely it should be discussed with your doctor. But that's the case with lots of medications.

While there are side effects and risks from cyclosporine treatment that should not be ignored, it's important to not overblow these risks. The drug has been safely used by the vast majority of users, whether for transplants, IC or rhuematoid arthritis for many years. Risks such as kidney and liver impairment can be avoided by regular blood tests to monitor organ function and my doctor assures me that any elevation of electrolytes which are indicative of stress on these organs can be reversed by either reducing dose or stopping the drug. Similarly, regular monitoring of blood pressure (important for everyone) can detect any drug-related hypertension, which can also be eliminated by reducing dose. So the risk of organ failure or hypertensive related disease is extremely low with proper monitoring. The risk of cancer is also extremely low - less than a 2% increase in risk.

You need to treat contagious illnesses (such as the flu) or infections seriously if they arise and seek medical care because your immune system is somewhat compromised. Bottom line- if you get sick, don't put off going to the doctor and dealing with it.

But this drug shows a lot of promise for IC and I think it's important to put the risks in context with the severity of your IC symptoms, your ability to achieve control with other medications and your overall health. I think it's potentially a lot less risky than some other treatments out there, particularly surgical ones.

Just my two cents.

-Laurie

[ICLori]

Hi, Laurie, thanks for your posts - you make some good points - I really do think with careful monitoring this is fairly safe to take...I still think I would recommend it as a later resort rather than a first resort though...

I've been flaring again for a couple of days, darn it. And back to wondering if this will work or not for me...

I'm having such a hard time trying to figure out how to respond to people who want to try CyA. I worry about being too enthusiastic because I worry, what if they try it and have bad side effects like kidney problems or something? Then I worry about being too negative about CyA, too, because I think, what if they choose another treatment and don't do well on it, all because I was too negative towards CyA?

Right now I'm thinking...researchers say it's safe and effective for IC...but approach with caution....

Blessings,
Lori

[IcyAngel23]

Well I guess all three of us re in child bearing years. So other people looking to take CyA can point that out to their dr.