Stopping Humira

[Crohnos01]

I have been on Humira for about 8 months after having a reaction to remicade. Within the first few weeks, my liver enzymes started rising and are now to the point the doctor has told me to stop the Humira. He seems reluctant to believe the Humira is the source of my elevated liver enzymes, but is coming to that conclusion after the battery of blood tests has shown I don't have hepatitis, I don't drink, use IV drugs, etc. However since stopping, I have had very intense pains that are randomly roving around my body. The doc wants to blame it on arthritis associated with Crohns, but I'm not so sure. The pains are frequently in my joints, however they are also just as frequently in places I wouldn't associate with arthritis. For example, the tendons on the backside of my knee, or just below my shoulder blade, just below my thumb nail, on the side of my knee, just above the ankle, etc. The other odd thing is the pain will be intense for 12 to 24 hours in on location during which the tendons in that area will pop and snap and feel stiff. Within 24 hours however that area will feel fine and then the pain shows up in a different location for another 24 hours and then the process repeats in yet a different location. I should also note that none of these issues were present pre-Humira

Has anyone else ever had these types of issues after stopping Humira or heard of anyone having these types of problems?

 

[cosmic dave]

I'm using humira for now and have started to get pain in my heals especially after sitting up high ie feet off the ground.I can usually walk it off but its very odd?

 

[nikimazur]

I started Humira 2/19/14. Previously, I've had minor liver issues (nonalcoholic fatty liver disease), and my liver function tests starting in December 2013 were elevated (pre-Humira). Fast forward to late April and my LFTs are in the 1000s, and I get diagnosed with Autotimmune Hepatitis. I'm working with both my liver doctor and GI, who both think that while the Humira did not alone cause the autoimmune hepatitis, that it definitely overburdened my liver, and made the Auotimmune hepatitis progress much faster. Autoimmune hepatitis is not caused by a virus (I've been tested ten different times for viral hepatitis), but can present in a similar manner. Apparently it's semi-rare, but found more so in those with a pre-existing autoimmune condition(like Crohn's).

 

[Crohnos01]

Thanks Niki and Dave,

Dave, have you had blood work done to check for Rheumatoid arthritis? I only ask because that was something they suspected with me. My blood work for RH came back negative, but my son-in-law's mother has RH and her symptoms started out just as you are describing.

Nikki, thanks for the post about fatty liver disease. This is what my doctor is/was suspecting on me as well. My liver enzymes were at the high end of normal pre-humira apparently because of damage from 6mp and since stopping the big H, my enzymes are dropping. I was a little heavy when my doc mentioned the fatty liver issue and so while on Humira, I dropped 15 lbs between blood tests yet the enzymes went up. I had never heard of non-viral hepatitis. I am getting an ultrasound of my liver tomorrow and more blood work to see where I am at.

How did they diagnosis the non-viral hepatitis?

 

[nikimazur]

I work in infectious diseases in a state govt and work on cases of hepatitis a, b, and c daily (the viral hepatitis). I had never heard of Autoimmune Hepatitis until I was diagnosed with it. Much like Crohn's/UC, it is autoimmune. It is treated with prednisone/azathiorpine/6-mp, and you can have flare ups/remissions just like Crohn's. It's your Autoimmune system attacking your liver. I was diagnosed with Non-alcoholic fatty liver disease, then was upgraded to Nonalcoholic Steatohepatitis (basically a step above the nonalcoholic fatty liver disease, with inflammation involved. It wasn't until I changed GIs and my LFTs went crazy that I was brought in for a liver biopsy. I then had a second one about a month later (the first one was done by a terrible pathologist and didn't say much). It was through the biopsies, bloodwork, and my response to treatment that got me the diagnosis. I had my original biopsy April 16, 2014 during laparoscopic gallbladder removal. I then noticed my urine started to get darker, and was feeling like crap. I went in for a colonoscopy 5/8/14 and my GI say my urine specimen, and got me in to see a liver specialist 5/9/14 who ordered a ton of bloodwork. My alt/ast were in the 1000s. I got a phone call Monday 5/11/14 that they wanted a repeat biopsy. Went for the second biopsy and was admitted to the hospital for three days for partial liver failure. Started prednisone/azathioprine. I was diagnosed with the autoimmune hepatitis, which is rare, but more common in those with pre-existing autoimmune conditions like IBD/ rheumatoid arthritis, etc. I already have cirrhosis of my liver and I'm 25. As of today June 6, 2014, I am still getting weekly bloodwork and see my GI and liver specialist every other week. They are working together for a drug regimen that will help control both my Crohn's and autoimmune hepatitis. If you have any questions, please let me know!