Humira-induced lupus

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).

Any suggestions on managing Crohn's without medications? 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?



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 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.

I have been managing my CD with diet and pentassa alone since 2007 and have not had one flare or symptom since changing my diet to the SCD diet. 

I was diagnosed in 2007 with fistulizing CD after having two massive rectal fistulas.  My GI wanted me to go remacade  because he said that thi is the only way to heal fistulas as large as I had.  I opted instead to try a more conservative approach first before turning of my immune system.  I changed my diet to the SCD diet and went on pentassa. After 8 months of fanatical 100% adhesion to the diet, both fistulas healed up completely and all my symptons of CD were totally gone.  To this day I still follow the diet, but not as strict as before, and I still take pentassa , and I am in complete remission. A colonoscopy a few years ago showed no active CD in my system anywhere.

I suggest reading the book "Breaking the Vicious Cycle" which is about the SCD diet.  YOu have nothing to loose by trying it, and all to gain if it works for you. 

I am sorry you had such a bad reaction to humira. I developed joint pain on Humira that went away when I stopped. When I tried Remicade, I had even worse joint pain and high ANA positive markers. It took 6-7 months before the joint pain eased. After that I wound up in a flare and gave cimzia a go. It finally put me in remission and I had great success with it as far as my gut was concerned. I last about 10 months on it, but started get joint pain again while on it. I stopped it and saw some improvement in my joint pain, but still have some and think I will just wind up dealing with it.

I was concerned about taking cimzia after so many problems, but some people react to one biologic and do well with another. I kept a close eye on how I was feeling and when I noticed the issues with the joint pain starting pushing to go off of it. I know I just said that I wound up with problems on cimzia too, but it took longer and was effective for my gut. You might want to stay open to the idea so that if you do flare again you can give it a try.

Since cimzia got me into remission, I'm going to see if I can stay there with diet and supplements. I see a naturopath and an acupuncturist regularly.

My choice would be to investigate other options for treatment, and not a med in the same class. Options to investigate are Stellara (which was recently approved for treatment of UC, and is in clinical trials for crohn's), Vedolizumab (which is also in clinical trials and is seeking FDA approval), and Tysabri which is now available on the market, but carries the risk of PML.

My husband's doctor has prescribed Stellara off-label for Crohn's for people who have had bad reactions to or have stopped responding to TNF antagonists with positive results so far. Also, I've read good things about results from clinical trials for vedolizumab. If I were you, I'd start looking at trying to join some of the ongoing studies about vedolizumab.

I assume you've already tried and failed the other crohn's drugs - like methotrexate, 6-mp and Imuran. If not, I'd certainly give that a try to keep a handle on crohn's.

Good luck, and I hope you find a good option.

PV

You could always try going the diet route and see how you do. Just make sure your doctor still monitors you. I was reading a few stories last night of people who thought they were doing well with supplements and diet, only to find they had major damage going on in the inside. They don't work for everyone (like everything).

Drug induced lupus is reversed once you go off the drug if I remember correctly (could take some time of course). Personally I'd try another medication, it may not happen again. The disease being out of control scares me just as much as the medications.