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Posted 5/2/2022 9:43 PM (GMT 0)
Just when I thought things couldn't get more complicated for me. Back in February I missed my remicade infusion. Soon afterwards I was in so much pain I literally could not move without crying. In 2 weeks I was in er for pain control. So I saw a rheumatologist who did a lot of bloodwork. Turns out that not only do I have crohns disease I also have lupus. And it's not drug induced lupus . The remicade is actually helping both diseases. I'm doing better now as long as I don't over do things.
Posted 5/2/2022 10:13 PM (GMT 0)
Bucko,

I'm very sorry to hear of this. Not long ago, I was extremely worried that my Daughter was also in this predicament with having Crohn's and being diagnosed with Lupus. Also actual Lupus, and not the drug induced.

I would highly recommend a second opinion on this. While it is possible, the likelihood of having both Crohn's and Lupus is extremely rare. I believe that there might be only 2 know cases. As I'm sure you know, there's no definitive test for Lupus. It will start with a positive ANA. This doesn't indicate anything really. A rheumatologist will rely on a 10 point checklist for symptoms in diagnosing.

I'm posting a link from the Lupus forum, from a thread that I started. It has some good info. @beave responded on that thread and was knowledgeable and very helpful. Hopefully she sees your post and chimes in.

https://www.healingwell.com/community/default.aspx?f=29&m=4280162
Posted 5/6/2022 2:40 PM (GMT 0)
Hi Bucko, I too urge you to get a 2nd opinion with another rheumatologist. It is common for people with IBD's to have a positive ANA, however, that does not mean a person has Lupus or an additional AI disease. We are predisposed of getting another AI, but the odds are very low. It never hurts to get a 2nd pair of eyes to review your lab work & get another opinion. I am not saying your rheummie is not a good dr either.

I had drug induced Lupus from Remicade. However, my internist thought I may have had MCTD & she referred me to an awesome rheummie. I had all sorts of testing including xrays, come to find out it was not MCTD. I was so upset because Remicade worked so well for my crohns & I didn't want to switch to something else. The rheummie & GI talked & I went on Plaquenil to treat it. After nearly a year I started to have side effects, ended up being put on Humira.

Good luck.
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