help please :-(

So I am beyong confused, frustrated and now just depressed...I have been being treated for my ulcerative colitis for 7+ months. Over the summer i started developing really extreme fatigue and the most painful symmetrical joint pain I have ever experienced. I finally got my doctors to believe me that I thout it may be the remicade..they did an ANA test it came back positive. Then i got sent to a Rheumatologist. He did more tests and I came back with a positive ds-dna test. he told me the only way to know for sure would be to come off teh remicade for 3-6 months and see if the symtoms disappeared. Today, two days later, my Gastro calls me and said i shoudl stay on the remicade and that the Rheum. sent him a letter saying he did not think my clinical symtoms were due to remicade or significant. excuse me but what the is wrong with these people?!?!?!? I feel absolutley crazy and they keep contradicting myself. I really dont know what to do.

Hi Kristyn, I am sorry you are going thru all this, it is so frustrating when we are in dx limbo. I agree with Razzle about getting a second opinion and even a third and fourth until you get answers you are comfortable with. Before I was dx with gluten sensitivity I saw MANY GI's and had MANY MANY procedures and tests done. I also saw 3 rheumy's before I found one that would look beyond my outward appearance and REALLY listen to me and my symptoms.

Don't give up, hang in there!

Kristyn - I developed a positive anti-dsDNA titer at the 7 month mark in my Remicade treatment also. I felt like I had the worse case of flu in my life - joint pain everywhere and the extreme fatigue you describe. The good news is that it went away. Both my GI and rheumy felt that it was safe for me to continue on Remicade because the symptoms had begun to subside. I remained on Remicade for another 2.5 years. During that time my rheumy followed me closely to make sure I was not developing any organ involvement associated with lupus.

I have blood work drawn every four weeks and a U/A. I continued to have a positive anti-dsDNA titer but had no other symptoms. Approximately 56% of people getting Remicade develop this antibody from Remicade. Very few people ever develop lupus.

That said, you must decide the course you want to follow using the information provided by your doctors. My GI and rheumy are tops in their fields and I really trust them. I did do extensive research on the subject and felt from the research that they were acting in my best interest. I have to be on a biologic because of my joint disease. However, your situation and symptoms could be very different than mine. If you are not confident in what your doctors are telling you, by all means get a second opinion.

Also, should you want more info about this anti-dsDNA situation with Remicade, I have lots of articles I could link for you if you like. I'm getting ready to go on vacation mid-week but will check this weekend and see if you have other questions.
Ides

In no particular order:

Chart comparing SLE and DIL

DIL following infliximab

DIL case report

A must read: Incomplete Lupus

One of the more important reports on the subject: Infliximab treatment does not induce organ-specific or nonorgan-specific autoantibodies other than antinuclear and anti-double-stranded DNA autoantibodies in Crohn's disease.

In conjunction with above report which seems to be the basis for most giving ok to continue Remicade: The effect of TNFalpha blockade on the antinuclear antibody profile in patients with chronic arthritis: biological and clinical implications.

 2 cases of patients with mixed connective tissue disease (MCTD) with prominent polyarthritis who developed clinical features consistent with a lupus-like syndrome and positive serological markers of lupus after treatment with a TNF-a antagonist.