Drug induced lupus and remicade

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New Member

Date Joined Feb 2018
Total Posts : 5
   Posted 3/12/2018 12:03 PM (GMT -6)   
Just curious if anyone can explain the symptoms they had with drug induced lupus and remicade. I appear to have symptoms but my blood tests come back 'negative' for antibodies, etc. Any info would be appreciated. Thank you,

Veteran Member

Date Joined Jul 2016
Total Posts : 523
   Posted 3/12/2018 4:10 PM (GMT -6)   
I had severe joint pain, so bad that I could not get out of bed without assistance. My left leg and left hip were locked by pain. I had a severe fully body blood rash that was violently itchy, covering 95% of my body. It was even on my palms and the soles of my feet. OTC allergy meds didn't even touch it. The rash was so deep and so swollen that it caused my blood pressure to drop from the edema of it.

Most people who get drug induced lupus do not have it as bad as I did. They just develop immune problems which shows up in the blood work.

If you're negative for anti-nuclear antibodies in your blood then chances are you don't have it.
DX left-sided UC 2015, 3 fulminant flares since then
Started FMT clinical trial Feb 2018
Dx w/mycobacterium avium paratuberculosis (MAP) Sept 2017
Stopped AMAT @ 6 weeks due to intolerance of meds
Others: Entyvio every 4 weeks, Low Dose Naltrexone 3mg at bedtime, natural ferments
Current status: lingering rectal bleeding, otherwise healthy

New Member

Date Joined Jul 2017
Total Posts : 12
   Posted 3/12/2018 4:18 PM (GMT -6)   
I developed severe, unexplained joint pain and swelling over the course of a couple months when Remicade really started to fail me (I was going for an infusion every 4 weeks, and didn't help nearly as well as it did before). It got so bad that I ended up using crutches just to get myself to the washroom, as the bottoms of my feet swelled up so much it was pretty darn painful to put any pressure on them. I even laid out yoga mats and wore squishy slippers to try and cushion the bottoms of my feet; unfortunately that only helped so much and looked a bit ridiculous LOL.

What kind of symptoms have you been experiencing?
Diagnosed: UC (April, 2014), small pulmonari emboli (Dec, 2016)
Currently: Flaring(?), 7-15x/day.
Current meds: Humira, Propranolol, Mirtazipine, CBD oil
Past/failed meds: Remicade, Entyvio, Azathioprine, Cortiment, Salofolk enemas, Pentasa, Dicyclomine, Xarelto, Omeprazole, Pantoprazole
Prednisone when absolutely needed

Regular Member

Date Joined Jun 2011
Total Posts : 181
   Posted 3/13/2018 12:30 PM (GMT -6)   
I also have developed joint pain and swelling, and sometimes even tendon swelling. It's usually in my hands wrists and feet.
Symptoms greatly improve for two weeks following my Remicade infusion and then whenever I have something containing sugar I can notice swelling and pain within an hour. The symptoms usually subside within 3 days.
Saw a Rheumatologist and had some blood work done recently. Everything looked normal to me, except the ANA came back positive 1280 HOMOGENEOUS.
Called both my GI and Rheumatologist when I saw the test come back positive. They both said to continue the Remicade. Trusting they know more than my Google searches. Guess I'll find out at my followup appointment next month.
The Remicade is doing well keeping the UC under control, but the joint pain is awful. Perhaps I'll be shifted over to Entyvio?
For now trying to steer clear of sugar. Very hard to do with all the Cadbury eggs everywhere.
Diagnosed with Pancolitis 05/2009
Lialda 04/09 - 09/11, 07/12 - 03/15
Humira 09/11 - 05/12
VSL#3DS 01/12 - 05/12
6MP 50mg 04/12 - 05/12
Remicade 05/12 - 5mg/kg every 8 weeks
Remicade 08/15 - 10mg/kg every 6 weeks
Multi vitamin, Vitamin C, Vitamin D3 and Calcium supplements

Regular Member

Date Joined Jan 2017
Total Posts : 114
   Posted 3/13/2018 12:35 PM (GMT -6)   
Yes, those Cadbury eggs are pure evil!! smile
F, 54, UC
Symptoms started January 2016, diagnosis July 2016 after colonoscopy
Balsalazide July 2016 - January 2017, Lialda 1 dose March 2017, no more mesalamines for me!
Predisone Sept-Nov 2016, Dec-Jan 2017, March 2017 - present, currently at 20mg and still flaring :-(
2nd colonoscopy August 2017, confirms left sided UC, cannot tolerate azathioprine, started Remicade Feb 28, 2018

Regular Member

Date Joined Jan 2018
Total Posts : 44
   Posted 3/13/2018 1:47 PM (GMT -6)   
I had pain all over. It would move around. One day it would be my hands and wrists, another day my knees and feet. It was difficult to walk and seemed to get worse at night. I did another infusion of Remicade and it only got worse. I had pain in my chest that made it difficult to breathe and we suspected pericarditis so I stopped the Remicade and my symptoms have improved. My elbows and shoulders are still a little sore but overall great improvement.
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