I have diagnosed IC along with many of the other symptoms of an undiagnosed general masto disorder.  I noticed on an IC board that some drs. were having success with Cyclosporine A.  I also did some reading that it can have some serious side effects.  I was wondering if anyone has used it for MCAD, masto, or IC?  The results in IC appear pretty promising, but kind of a scary med...Would be curious to see if anyone has had good results.

Thanks... I had heard of using it in the eyes. The response rate in refractory IC cases (which means they haven't responded to other treatments and could be headed toward bladder removal) is about 70% which can be compared with Elmiron (maybe about 30% response-I of course was in the 70% and it aggravatged my GI tract).  I am one of those people who feels waaaay better when on prednisone but of course can't stay on it, and was just wondering about the cyclosporine, but it has been linked to some pretty severe kidney problems when take orally....urrggg, it always seems when you add one med is causes some other problem!).  Right now I am on 2 zyrtec a day, bladder meds,lyrica, prilosec, ultram, etc.  I guess I am looking for that one wonder med that might really work in a huge way for all the symptoms....I think its called fairydust!

Ramona:

Thanks.  I have been on hydroxizine 75 mg per day, on Singulair,  on Zantac, inhalers, predinisone, benedryl, elavil, seems like just about every antihist treatment out there.  Right now what seems to be controlling my symptons (neurological, flushing, gi, bladder, muscle and bone pain, twitching, rashes, pigments spots, blah, blah...) is 2 zyrtec a day, lyrica, prilosec, sanctura, flomax, and continuous low low dose bcp, occasional inhaler.  I do sometimes need ultram and lortab to control the pain, but staying on the zyrtec was what my immunlogist recommended...not sure but it seems to help me with less side effects than hydroxizine.  Claritin gives me heart palpitations and Allegra makes my GERD go crazy...as did Elmiron.  I would say the med combo I am on how is pretty effective, but there are days I would love fairy dust or one pill that would work instead of the bagful I take every day.  When I said how bad I feel about taking some many meds every day, my immunologist said but think about how bad you would feel without them!  So true...I tried to go cold turkey a couple of years ago because I felt better...had a total relapse/flare, felt like I was going to pass out...went back to my urologist who just said my name and shook his head...bad idea, what were you thinking of.  Luckily I am not a shocker...more of leaker, so I just felt really, really horrible it took almost a year to recover to my normal "weird" level.  So, lesson learned.  I am possibly willing to try singulair again, but it bothered my GI tract urrrg!  Looking for new options, but seem to be running out of them.  God bless you all for your help and being able to explore new ideas....I have had this for over 10 years!

Yes, maam!  But please keep looking for that fairy dust for me!

I have not tried that but it has definitely been on my list.  I asked my immunologist about it and he balked because of the cost (of course, has he priced Lyrica lately??).  I think also because I do not shock, he is hestitant.  I have heard that it really helps with the bone/muscle pain and that is what I still do not really have great control of.  Some days IC gets weird, some days asthma, some days GI, but all in all, the overall body pain is what still seems to be the perverbial monkey on my back daily.  May press him again next time I am there...doesn't hurt to ask.  I think some have had it help IC too, so .....oh, one other one the immunologist mentioned was Doxepin, which I think is in the same family as Elavil (old antidep that are strong H1 antihist).  Might give that a try sometime too.