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Anyone with Lupus and UC?

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Posted 3/8/2016 1:18 PM (GMT 0)
Does anybody have lupus along with UC? If so, I am interested in what type of treatment you are on. My GI recommended Imuran and Remicade but my Rheumy prefers to try Imuran without a TNF inhibitor first. If that doesn't work then he recommends Humira because he feels it would have less autoimmune problems. I posted on the UC forum but didn't get any responses, just looking for some feedback as I feel like I am in the minority with these 2 diseases.
Posted 3/8/2016 6:22 PM (GMT 0)
I have left sided uc which is in remission. I actually have not been to my GI in quite some time. I do take Lialda for it. My rheumy did not say I have lupus but did not say I don't. He put me on plaquanel. While the pain is less I still struggle with daily pain but my uc has been unchanged. Hope that helps.
Posted 3/8/2016 7:09 PM (GMT 0)
Glad to hear your UC is in remission. Looks like we are opposite! My lupus is "quiet" since I started the plaquenil, however, my UC went from mild to severe. I can't take any of the 5 ASAs as the lupus symptoms started within 2 months of taking it and my rheumy suspects that it triggered or caused the lupus. My lupus symptoms were much worse when taking the Lialda.
Posted 3/8/2016 11:48 PM (GMT 0)
Sorry you are going through this. Wish I had more advice. I am so new to all this. This forum is an excellent source of information and support.
Posted 3/9/2016 2:18 AM (GMT 0)
I don't have UC but I do have Crohns. When I was on Remicade I also was on MTX 25 mg/week. This worked well for a couple of years until I discontinued the MTX. It was then that the flood gates opened and I developed Remicade induced Lupus. The treatment for that was 25 mg prednisone/day and MTX again. It took one year for me not to have a positive ANA, and at that time I started Humira. That was around 8 years ago and I'm still taking it. The difference is Humira is made with human protein and Remicade is mouse protein. about 20 years ago I tried Imuran for 3 days. Each day approx 8 hours after taking the pills, I developed a fever of 103 and 104. My legs wouldn't hold me. My GI took me off it immediately. Both meds aren't without their side effects. I think I would go for the Humira.


All the best,
Julia
Posted 3/9/2016 1:17 PM (GMT 0)
Thanks Julia, glad to hear the Humira worked for you. My GI thinks Remicade is the "gold" standard but I have read so many accounts of people developing drug induced lupus that I don't want to take it and my Rheumy confirmed that it's not a good option for me. I was hoping to find someone that took Humira that had a positive result, this gives me hope!! I have been on the Imuran for 2 day, so far so good. Maybe it will do the trick to get me into remission but if not at least I have the Humira in my back pocket. Thanks again for responding, I really appreciate it!
Posted 3/9/2016 4:56 PM (GMT 0)
Your GI is right about Remicade being the best. It healed crohns ulcers I had for years that nothing else would touch. I was fine on it until they discontinued the MTX. I had also heard about a new drug out the specifically for UC. I can't remember the name of it but I will ask my GI on Monday and let you know for future reference.

I hope you are in remission with the Imuran.

All the best,
Julia
Posted 3/9/2016 8:07 PM (GMT 0)
Thanks, if you could let me know the med that would be great. Not in remission yet, I was doing cortenemas which helped but the inflammation is up in the transverse colon and is severe and the med isn't reaching that portion. I think it's going to take several months to get into remission, but I am hopeful that the Imuran will do the trick...hope, hope and pray!!
Posted 3/9/2016 8:11 PM (GMT 0)
Mrs Brady, I was on Remicade for 3 1/2 yrs & developed antibodies to it. I ended up with medication induced Lupus as a result of Remicade. The Remicade did heal the fistulas I was dealing with. I was then put on Humira & the Lupus stayed. My gi & rheummy were in agreement the bios were the culprit so I stopped Humira. Humira made my psoriasis just blossom. My feet would get so bad that I would end up with cellulitis on my legs & be put in the hospital. I have crohns & then in 2005, was also dx'd with UC. Both of these meds kept my symptoms under control but caused me other bad issues.

Take care.
Posted 3/10/2016 1:08 PM (GMT 0)
Susie, I'm curious, how is your crohn's/colitis now? What type of treatment are you on? Hope you have found some relief, these diseases really stink! That is my biggest fear about the meds is the lupus. For me, when I had my first bad UC flare I was going 20+ times per day, however, I would take that over the lupus pains. I just fear going back to the spot where I could barely walk, open doors, get dressed by myself, etc. you get it....the joint pains were debilitating. Going to the bathroom every hour on the hour was horrible but at least I could function for the 45 minutes between trips, with the lupus I was absolutely miserable. I feel like a medical oddity with these two conditions, my GI has 5000 patients and not one has lupus. It's so frustrating to know what the right course of action should be. Thanks everyone for your input, I really appreciate it!
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