Share Facebook
Crohn's Disease Forum » General IBD Discussion » Lupus or Drug Induced Lupus?


10-14-2012, 05:36 AM   #1
NancyHany
 
NancyHany's Avatar
 
Join Date: Apr 2012
Location: Alexandria, Egypt
Lupus or Drug Induced Lupus?

Hello all,

Quick brief, I have Crohn's in the terminal ileum and UC in the left descending colon, they co-exist in my colon cause my colon formed a big bow tie knot in between of them. I'm currently only on Remicade, I stopped Pentasa cause it was doing nothing but making my hair fall faster. Remicade made the symptoms less but it didn't induce remission yet.

I was diagnosed long before Remicade with arthritis due to an effusion in my right knee, and I was also diagnosed with chronic precardial wall thickening "pericarditis".

I've done countless blood tests through the years and every 6 month or so I get tested for ANA , since I do have lupus in the family. It always came back negative. Recently my skin condition is getting out of hand and my joints ache constantly so I kinda went around my doctor and I written myself in for an ANA test among my blood work.

It came back "Positive" and quite frankly I don't know what to think. I had Lupus symptoms before I was ever on Remicade and since I used to test negative for ANA doctors blamed my joints pain and my skin problems over Crohn's which make sense as well.

In the same time Remicade though it made me have less bowel movements through the day but it didn't clear my skin neither my joints pain. I'm afraid also that my GI rules it as Drug Induced Lupus and it isn't and I just go back to full fledged Crohn's suffering I was in.

Sorry that was a bit long, I do have an appointment with my GI in few hours but I know he will treat me like a crazy lady and its all in my head.
10-14-2012, 07:57 AM   #2
Avw
Senior Member
 
Avw's Avatar
 
Join Date: Jun 2012
Location: Lafayette, Louisiana

My Support Groups:
Sorry, I really have no advice to offer. Your thread caught my attention because I've always been curious about drugs inducing other autoimmune problems. Let us know what your doc says and know that we are here for you.

A xx
__________________
Diagnosed with CD in 2004 at age 18.

Previous Medications:
Every oral medication,
Remicade,
Humira,
Cimzia, etc..

Currently Taking:
LDN 3 mg
VSL #3
Prednisone 10 mg
Flagyl 1000 mg
Entocort
Protonix
Xanax as needed

Insurance still rejecting appeals for Stem Cell Transplant. Tested positive for JCV Antibody so Tysabri is not an option. Searching for matches in Cord Blood Registry and working with an attorney to fight insurance company. Fingers and toes crossed!
10-14-2012, 04:24 PM   #3
NancyHany
 
NancyHany's Avatar
 
Join Date: Apr 2012
Location: Alexandria, Egypt
Thank you Avw, I guess it's a common concern as I noticed autoimmune diseases rarely come alone and to make things worse the biologic drugs though at parts sometimes they are God sent but they cause complications.
10-14-2012, 04:33 PM   #4
NancyHany
 
NancyHany's Avatar
 
Join Date: Apr 2012
Location: Alexandria, Egypt
I just came back from my GI appointment and he himself he doesn't know, he said to quote "Lupus is a very complicated disease to diagnose based over you matching some of the criteria, I don't know yet." He ordered more lab tests to check for genetic issues and he referred me to a dermatologist to check over my skin issues and hair loss.

He also said that I have subcentimeter lymph nodes at my terminal ileum which though might be malignant they are too small to worry till he performs the colonoscopy I'm scheduled for next month. My stomach as well is badly ulcerated

The only good news that I've got out of this appointment that the Crohn's affected areas in my colon look much better, so I guess its not so bad, my next Remicade infusion is scheduled for next Thursday. '

I don't know if I should search for a second opinion or not, but I want a more specialized doctor in Lupus to look over my file but my GI will be hell mad if he found out. I don't know what to do any longer.
10-14-2012, 07:15 PM   #5
Ihurt
Senior Member
 
Join Date: Mar 2012
Location: United States

My Support Groups:
I would make an appt. with a rheumatologist. They are the experts in autoimmune diseases like lupus. They usually do a blood panel for lupus. I think I remember my rheumy doc telling me you have to have a positive in so many of the markers in order to be dx with lupus. I have had a positive ANA off and on for the last 8 years. It comes and goes. I do not have enough markers to be dx with lupus or any of the other autoimmune diseases though. The rheumy dx me with having an undifferenciated connective tissue disease. I know that some drugs can cause drug induced lupus. My good friend got it from taking a drug ( IVG shots). But hers went away after about 4 months. A lot of times drug induced lupus will go away after the drug is stopped, but occasionally it does not go away. I would see a rheumy about it. Hope you feel better soon...
10-15-2012, 06:43 AM   #6
NancyHany
 
NancyHany's Avatar
 
Join Date: Apr 2012
Location: Alexandria, Egypt
Thank you ihurt, Lupus is very tricky to diagnose or determine if you have it. I wish I can take the risk of stopping Remicade but currently I can't, I can't imagine going back to spending complete days and night in the bathroom. I recently went down from 15 BM a day to 6 BM a day and its been a while since the cramps got so horrible that I needed morphine, I can't also afford Humira currently.

You are right I should get an appointment with rheumatologist, I recently heard about one in my area and she treat most of Lupus cases in my city, bit hard to score an appointment but I'll try my best its worth it.
10-15-2012, 07:54 AM   #7
Ihurt
Senior Member
 
Join Date: Mar 2012
Location: United States

My Support Groups:
Hey Nancyhany,

Yeah, I hear ya there. I would NOT stop the remicade either if it is working. If it is making you feel better, then I would stay with it as long as the side effects are bearable.

I think the rheumy doc would be your best bet in terms of being the most knowledgable when it comes to lupus. It does suck though, there usually is a wait when it comes to getting an appt. with those guys

Try not and worry to much about the lupus thing( I know it is easier said than done, believe me, I am a big one to talk, I am the queen worrier! ). You may just be having some side effects from the remicade, but it does not mean it is lupus. For instnace, I had to be on a drug a few years back for my upper intestinal issues. It was called domperidone. I started getting joint pain, pain in all my muscles and just fatigue that was bad. My ANA was raised in a nucleolar pattern which made the one rheumy think I had scleroderma ( which I do not have). In the end they did all these special blood panels and they could not dx me with lupus or sclero. The rheumy finally said it was an undifferenciated connective tissue disease. But I think that drug is what caused all the reactions. So you could be just getting some of the same symptoms that lupus can cause, but it may be just symptoms, not actual lupus. Hang in there, and I hope you can get an appt sometime soon with the rheumy.......
Reply

Crohn's Disease Forum » General IBD Discussion » Lupus or Drug Induced Lupus?
Thread Tools


All times are GMT -5. The time now is 06:30 PM.
Copyright 2006-2017 Crohnsforum.com