Humira being tested for IC???

[jvr]

Hi,

I didn't know where to post this, but I was looking at clinicaltrials.gov today to see what current trials for IC were going on. I noticed that Abbott is starting a clinical trial next month for Humira to see if it is an effective treatment for IC. This is the same drug used sometimes for RA and Crohns. Anyone else heard anything about this? I'm encouraged to see more and more pharmaceutical companies taking part in research:-)

Jill

[Linda May]

I wish they can just find a cure.

[shortstuff]

I don't know about Humira but ichelp.org had a blurb in the past few weeks about Cyclosporine successfully treating an IC patient with Sjogren's Syndrome (which I also have) in Turkey. I thought that was encouraging!

[cmclien]

I don't want to be the downer here because I am encouraged to see interest BUT and a very big but to me is the risks of these types of drugs. Cyclosporin is an immunosupressant drug given to organ transplant patients. It increases the risk of lymphoma and dials your immunity way back making you at risk for many other infectious illnesses. It makes sense when you have received an organ from a donor but for IC????...................
Humira reduces your white blood cell count and again increases your risk of lymphoma and other lupus like diseases. Its only recommended for crohns when other treatments have failed. Would hate to have IC cured only to trade it for SLE.

Again, I want to see successful new drugs come out but these are pretty radical and not to be taken lightly. I kinda feel like they're just throwing these drugs at IC without knowing the cause.

[shortstuff]

I am with you on that. I would have to be in much worse shape physically to try any of this class of medications.....from my understanding certain categories (Cellcept is included) have fatal brain infections listed as a side effect. Have you read about Sjogren's? Symptoms can range from mild dryness of eyes and mouth to debilitating joint and organ problems. So when I said it was encouraging that cyclosporine worked for someone I am assuming she was pretty bad off. I consider myself lucky not to be in that situation now/yet......You are so right to mention we must carefully weigh the risks inherent in taking these drugs as part of a treatment plan. Many regards!

[cmclien]

Shortstuff My rheumatologist has diagnosed me with sjogrens tho I am not fully buying it. I have the chronic dry eyes that started about 7 years ago which I take restasis for and I have developed bursitis in my hips but my blood was negative except for some protein factor that was high which he said was indicative of a connective tissue disease, so he is mostly going on symptoms alone. I'm glad he is liberal and will treat me but I hate being thrown into a category so easily. I also have TMJ, IBS, hashimoto's, IC which all go hand in hand with sjogrens but alot of these conditions seem to group together. He says not too many of his patients with sjogrens have IC but I have read in the literature they often go hand in hand. If it was ever proven autoimmune (IC) then I might agree. I was put on plaquenil which is not a immunosuppresant but a disease modifying drug. It slows the progression of the disease and I have to say my IC totally went away for the 3 weeks I was on it (until I developed an allergic reaction to the drug). Maybe it just got rid of any mild inflammation I had, I don't know. Or maybe it stopped the autoimmune attack (if there is one). Are you on plaquenil and has it helped your IC?

I Just wish they could find the cause and then maybe some of these medicines in severe cases would outweigh the associated risks. Thanks for posting.

[jvr]

Hi,

Yes, I agree too. It wouldn't be my first choice drug for sure, but for refractory patients with IC...well it could be a great thing in my opinion. It just made me happy to see another drug company getting involved with IC. I'm very glad that the RAND IC study was done, because I truly hope we'll see more and more pharmaceutical companies taking interest with the incidence of IC higher than once thought....

Jill

[Nonna]

good side of such drugs

People lose sight of all of the people whose lives have become normal because of these "TNF-blockers" as Humira, Enbrel and such are called. The issue is whether IC is an auto-immune disease because if so, these drugs might be a wonderful addition to the arsenal. Although I would never down play the possible dangerous side effect of these powerful drugs, it's important to see it in perspective and to weigh the benefits and costs. My son has Ankylosing Spondylitis which is a type of inflammatory arthritis like RA and akin to Crohn's and his life is totally normal now that he's been on Enbrel for the past 4 years. And he hasn't had any more trouble with colds or sickness than anyone else. I see it as a wonder drug. The top rheumatologist we consulted about taking it said that he'd be crazy not to do it because of the permanent damage that could be caused by years of progressive joint disease. I think the issue is more whether o r not it's an appropriate drug for IC, and then, one has to weigh the pros and cons, always aware that you should never take any drug lightly, but quality of life is often taken into consideration. Nancy

[helennewcastle]

Re: Humira being tested for IC???

Hi I have Rheumatoid arthritis and IC and my dr wants to put me in enbrel or humira . So scared it flares my Ic up . I have not found anyone with both as yet . I really need to find someone who can give me advice . Or share my concerns . [email protected]