Humira-induced lupus

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Marie_fighter
Regular Member


Date Joined Jun 2013
Total Posts : 20
   Posted 6/11/2013 9:38 PM (GMT -6)   
The short story:

I developed lung issues that lead to requiring surgery. My doctors believe my issues were due to drug-induced lupus from Humira. I've modified my lifestyle to manage my Crohn's symptoms without medication because I'm absolutely terrified to try another TNF blocker mediation (Cimzia).

Has anyone experienced a similar situation? Should I consider Cimzia or push for other meds or should I wait until managing without medication becomes ineffective? Would Cimzia also help manage lupus symptoms?



The long story:

I was on Humira for almost 3 years. For 1 of those years, I was taking weekly Humira. I was also on methotrexate. In February, I had pain in my chest and found out that I had fluid built up around my lung, causing it to collapse. I had this fluid drained 3 times and was on prednisone. The fluid didn't provide much hints as to the cause and kept building back up. I had surgery at the end of March to eliminate the cavity around my lung so the fluid couldn't build up as well as to take biopsies. During recovery, I developed a pimple/hives/red scaly rash whenever I went for a long walk in the sun. Blood tests confirmed that I had developed lupus.

Don't get me wrong, Humira is an excellent drug and helped me maintain remission and manage my Crohn's symptoms. Since then, I've been using alprazolam (zanax) to manage my stress levels and have modified my diet so I've had my Crohn's symptoms under control without being medicated. My GI doctor has suggested putting me on Cimzia, but I'm absolutely terrified to try another medication.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/11/2013 10:29 PM (GMT -6)   
It's my understanding once you stop the drug causing the drug-induced lupus it will go away.

Have you asked about the way people on the Crohn's board handle there medications and diet?
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Marie_fighter
Regular Member


Date Joined Jun 2013
Total Posts : 20
   Posted 6/11/2013 10:31 PM (GMT -6)   
I also posted to the Crohn's forum. My rheumatologist said that the lupus can last for years after stopping the medication.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/11/2013 10:36 PM (GMT -6)   
Do you wear sun protective clothing? I'm very photosensitive and have to have my special clothes to go places.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Marie_fighter
Regular Member


Date Joined Jun 2013
Total Posts : 20
   Posted 6/11/2013 10:45 PM (GMT -6)   
Thanks. I do now but my face and scalp are still exposed. I've tried SPF 15 lotion but I think I might also have sensitivity to heat and sweating. I'm not use to dealing with this. Its a whole new set of "rules". Is there anything I can do to treat the rash? It seems like no amount of lotion can moisturize the scaly, dry, flaky areas.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/11/2013 10:51 PM (GMT -6)   
Oatmeal based lotion is good for very dry skin. I've also tried Udder Cream and Corn Huskers lotion. Strong stuff...

I buy my clothes from coolibar.com. They have beautiful stylish hats and clothing. All of their clothing is SPF +50. I own several of their shirts and hats. I can pair them up with heavy dark jeans and be fully protected. They also have some wonderful driving gloves and sunbrellas.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 6/13/2013 7:47 PM (GMT -6)   
Hi there, I know Julia Hill from the Crohn's forum also developed drug induced lupus from remicade I believe. Once she stopped the remicade and started taking MTX with her prednisone it cleared up her lupus. I know that she's on humira right now and has some signs of lupus, but not like she did the first time.

Maybe you could put a post in that forum for her, she'd be a great source of information regarding drug induced lupus. Hopefully, they can clear up your lupus and then retry to treat your crohns. Wishing you the best and I hope you start to feel better.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Cateracts, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.
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