immunosuppresant

[stacym]

HI Anyone! I have had IC for almost 2 years now but have other symptoms, joint pain, fatigue and terrible neuropathy (I am 31). I tested positive for the ANA test and they will do more tests to make sure I don't also have Lupus or another autoimmune disease. For some time now they have been talking about putting me on immunosuppresants. I think with the new studies out maybe they will try Cellcept. Does it seem odd that only a few people on this board have tried immunosuppresants? Is it because most people with IC just have IC while mine is kind of a whole body thing? Do you think most people's IC isn't autoimmune? I am struggling to find out where I fit in.

Thanks for your thoughts! Stacy

[jen74]

I also have a positive ANA in a nucleolar pattern, elevated sed rate, C reactive protein.
They have no clue what I have, but the rheumy says I definitely have something autoimmune going on as well. They have not offered any immunosuppressants, though one rheumy I saw wanted me to take plaquenil which is a very mild immunosupressant, but I did not feel comfortable taking it as it raises your risk of getting sick and getting infections and such.
I think they reserve the immunosupressants for people that have severe lupus, or scleroderma, or other serious connective tissue diseases as well as for transplant patients. Immunosupressants have very severe side effects and are only usually given out to people who are really sick and need them. Most doctors will not prescribe these to people for IC treatment. There is a study going on using the drug cellcept for IC, but it is still in a trial study.
Jen

[catlover2]

CellCept is in stage 3 clinical trials. CellCept and CyA are usually reserved for people with refractory IC. Most docs will not prescribe CellCept or CyA until you have tried all other treatments. CyA and CellCept have serious side effects such as kidney and/or liver failure and an increased risk of getting infections. I am trying to find a doc who will prescribe CellCept. I have tried everything including Botox-A injections.

[stacym]

My doctors are a little bit different and I guess my situation is different. They are concerned that my neuropathy has gotten so bad. I am losing the feeling in my hands, feet and face. It is my neurologist that suggested immunosuppresants. Then I started doing research and if they are going to go down this path then I might a well try to take something that will help my IC too. I wish there was more research and I knew more people (well actually one person would be nice) that has tried Cellcept. I know the side effects are bad but whatever I have is progressing and although my bladder isn't terrible (although it feels terrible) I guess my nervous system is.

[MarthaF]

Another treatment

Catlover,

You said you have tried other treatments but have you tried a true antibiotic treatment based on a broth culture? This kind of culturing can find bacteria when the traditional lab test does not. One lab in the country, United Medical Lab in McLean, VA, will do a broth culture. It is more extensive and allows the culture to grow for several days since some species do not grow out in 24 or 48 hours. If bacteria are found they do a sensitivity test to find which antibiotics are the best and will report all of this.

Even if you have had a short course of antibiotics over the years you may not have had the right one or taken it long enough. Bacteria can invade the bladder wall and it takes time to eradicate them completely, but if you are at the end of your rope you might consider trying this.

Martha

[catlover2]

I have recurrent UTI's, Yeast Infections, and Bacterial Vaginosis. I have taken antibiotics in the past for months at a time. Now my lab results are coming back so abnormal I'm not supposed to take any antibiotics unless I am at risk for sepsis. I have many other medical problems besides IC but my docs haven't been able to diagnose all of them. I'm now undergoing genetics testing because I'm apparently not human. Docs at Emory have never seen anything like me before and I'm not sure that's a good thing.

[IcyAngel23]

As someone who has taken CyA I would tell you that if you are having alot of infections there isn't a dr out there that will prescribe CyA or CellCept. The reason being is that is suppresses your immune system. The only reason my dr gave it to me is that I've only had one UTI in my life. CyA is a very powerful drug and it makes you feel alot worse than IC does. I'd still be on it because it did help my IC but my kidneys didn't like it. I'm looking intio taking CellCept but I'm not looking forward to taking another immunusupressant again. It gave me seizures,headaches,toxic blood levels,mouth sores,vomitting,nausea,dizzy spells,and made me feel like I was dying. My bladder never felt better at that time. I started it in the summer of 06 and ended in the fall. Now my bladder is getting worse again but I think it was fairly ok because of the CYA. It must have done something. Good luck to all of you