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Ulcerative Colitis
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Posted 11/19/2011 2:25 AM (GMT 0)
I'm sure most of you (if any of you!) probably won't remember me as I haven't posted here since 2009... I can't believe it's been that long!! Life just flew by, and my work blocked HealingWell which is where I got online most of the time. But, I recognize a lot of familiar names here still and I wanted to stop in and say hi :)

My UC has been doing great, I'm on Remicade still and according to a colonoscopy in August, it is keeping me in remission. Plus, I had a healthy, beautiful baby girl on December 9th 2010 without a single UC flare, so it doesn't get much better than that! Her name is Leila :)

VIEW IMAGE

However, I came back to HealingWell to check out the Lupus forums because... Well, I think the Remicade may have given me lupus. Or at least activated the lupus that was already there. I don't know. Actually, my last post here was about some severe joint pain and other odd symptoms I was having which ultimately went undiagnosed, but this week I finally received the proper testing and got a positive ANA and positive dsDNA antibody test, along with many lupus symptoms so... Just waiting on an official diagnosis from the rheumatologist on December 6th and then I guess we'll go from there. Just one thing after another, right?

Oh well. I hope you all are doing great and getting ready to enjoy some turkey next week. I'll try to come on more often, I miss having a group that I can talk to about (literally) anything :)
Posted 11/19/2011 2:30 AM (GMT 0)
I am new but agree. It's nice to have support group. Congrats on the baby.
Posted 11/19/2011 2:38 AM (GMT 0)
Hi edie, I remember you! (I was ComedyDork back in the day)

Most of the time Remicade-induced lupus goes away if you stop Remicade. I have a positive ANA and dsDNA as well, but no lupus symptoms, so doctors aren't worried.

Your daughter is so cute!
Posted 11/19/2011 2:52 AM (GMT 0)
Hey! I remember you as well! :) How have you been doing otherwise??
I am anxious to get back to the rheumatologist or GI to see what they say about my results... I just hate the idea of stopping Remicade, because it was the only thing that ever helped my UC :( And I can't decide which is worse- full flare of UC, or occasional flare of lupus symptoms..


allswell- glad you found this place and are enjoying it! It has really helped me, at many times in my life.
Posted 11/19/2011 2:59 AM (GMT 0)
I remember you! congrats on your beautiful baby. I hope you find out that it's not lupus.
Posted 11/19/2011 2:37 PM (GMT 0)
My UC has been doing well (remission for over 2.5 years), but I'm having a whole host of other issues--chronic fatigue, IBS, worsening allergies, migraines, possible endometriosis, possible adrenal insufficiency, etc. (I'm sure I'm forgetting other things). Like you said, just one thing after the other.

You might want to check out the Crohn's forum--I remember seeing a few posts about Remicade-induced lupus.
Posted 11/19/2011 11:32 PM (GMT 0)
Hi..welcome back to HW...it's unfortunate you're having other issues. Hope more blood testing can confirm things for you.

Leila is a cutie-pie! Love her smile.

Make sure you do tons of research and find out what other possibilities can mimic results of lupus. Sjogrens might be one?
Could being on Remi cause false positives? I think if you don't have to be on the Remi and find other alternatives (is 5ASA an option for you..oral/rectal?), then get off it.

I know some on here have had MS symptoms, brain lesions, etc from being on Remi. No go for them anymore...better than pushing it.

I'd rather lose my colon than have symptoms generated by Remi. (subjective opinion truthfully spoken)

Hope it gets worked out for you...be ready for your appt with the rheumie so that you can get to the bottom of it.

Keep us posted as to what's happening.
q
Posted 11/20/2011 1:59 PM (GMT 0)
I remember you too- congrats on a beautiful baby! And being in remission!!! Good luck with the lupus issues- I sincerely hope it's not due to the Remicade. Nice to hear from you- take care!
Posted 11/23/2011 9:23 AM (GMT 0)
Just had to say- WHAT a beautiful baby girl!!! So happy for you. My husband and I have a son and 5 daughters, but our oldest "baby girl"is 30, and our youngest is almost 17. I remember the days when I had little ones and was healthy. It was the most fun I've ever had. And, of course, it goes by in a blink.

Congrats on the remission, and especially the precious gift! Hope the Lupus isn't real, I really do. :)
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