Have you been diagnosed with Lupus while on or following Remicade or Humira?
Have not been diagnosed with Lupus - 58.2% - 39 votes
Developed lupus like symptoms on Remicade/Humira that went away when I stopped the medication. - 17.9% - 12 votes
I was diagnosed with Lupus and still have it even after being off the med for more than 6 months - 13.4% - 9 votes
I was diagnosed with Lupus but it has been less than 6 months since I stopped the medication. - 10.4% - 7 votes
Posted 1/3/2014 8:49 PM (GMT -6)
I have not been diagnosed with lupus but I have many of the symptoms. I have been off of humira for over a year and the symptoms just keep getting worse. I won't be surprised when they diagnose me with it.
Posted 8/28/2014 4:45 AM (GMT -6)
I have been on Humira for around 3 years and it has been great at controlling my Crohn's disease. But the last two and a half years I have been experiencing increasing joint pain. All of my joints with no swelling. It has gotten so bad that I couldn't work for 2 weeks this month. My doctor and rheumatologist say they have no idea what is wrong with me and can only manage the symptoms through pain killers.
I am beginning to think it is Drug induced lupus due to the Humira as I get pleurisy, have severe fatigue, a red butterfly rash over my face often pain in my left chest wall and a blocked nose like I have a cold.
My question is: Is there a definitive test I can ask for when I next go to my doctor to confirm it is DIL?
Is the only treatment cessation of the Humira?
Thanks in advance
Posted 8/28/2014 7:03 PM (GMT -6)
I had symptoms on remicade and was tested for lupus. The symptoms stopped after the remicade was discontinued.
Posted 8/28/2014 7:22 PM (GMT -6)
Looks like that's what I'll have to try to prove the theory.
Posted 8/31/2014 9:02 PM (GMT -6)
Posted 8/31/2014 9:59 PM (GMT -6)
Posted 9/4/2014 2:51 PM (GMT -6)
Posted 9/5/2014 12:51 AM (GMT -6)
I'm a relative newbie. Got it from remicade after 5 months.
Posted 11/6/2016 2:20 PM (GMT 0)
I am a 70 year old woman and I've been dealing with Crohn's Disease and other related intestinal issues basically my whole life. After my second resection in 2011, my doctor assured me that I would probably get at least 6 painfree years...................I had one! So he put me on 6MP (mercaptapurine) and after getting a rash and 104 temp, he took me off of it. He then persuaded me to get on Humira. It was wonderful. I could eat anything and only, very rarely did I have a little flair.
I was on Humira for 2 years and very happy in remission, until strange, unexplainable "things" started happening to me. It started first with a trigger thumb. Went to an orthopedist and he gave me a cortisone shot. Several months later, my index finger got so swollen, it looked like a cigar. Then more and more "things" began happening......random and frequent sore joints, swollen legs, rash on my legs, tingling in my feet, nose infection that wouldn't go away, bursitis in both elbows, 5 more trigger fingers and so on. This lasted for 2 1/2 years. All the while I went to a multitude of doctors each one saying it was something else.....Chrohn's arthritis (who knew there was such a thing!)osteoartritis, symptoms of old age, etc. Finally I went to a Rheumatologist in NYC that gave me a definitive diagnosis of Humira induced Lupus-like-syndrome!
I was immediately taken off Humira. It took a good 3 months for it to get completely out of my system. I am basically back to my old self and feeling great! I am not on any medication for my Crohn's, but I have completely stopped eating any dairy or drinking any wine. The couple times I cheated, I got a small flare. The other things I did during my 2 1/2 years of hell was to get acupuncture 2-3 times a week to help stimulate my immune system.
I'm mad that my gastroenterologist was unaware of this side effect of Humira. And had it not been for me reading this site after I got my diagnosis, I would never had realized that it is more common than the doctors are aware of. Hopefully, writing this will help someone else.
Posted 7/3/2017 1:33 AM (GMT -6)
@OP @Finally Better Typed into Google: Humira Lupus and this was the first thread that came up and yes I have been recently diagnosed with Humira induced lupus. I am a 51 year old male that was diagnosed with Crohn's disease in my early 20's. I went about a year and then had a large resection done with an ileostomy for about a year after the first surgery. I was probably one of the first people to have had such a radical resection who also was able to talk a doctor into trying to perform a reanastomosis. So it was only a couple of years after the initial diagnosis before they cut out all the Crohn's and then another year with an iliostomy before I was even close to stable. I then lived with short bowel syndrome for over 20 years when I had what was deemed a "flare". Looking back this was an event triggered from a series of smaller events that made life overwhelming and I became overwhelmingly sick. Crapping my brains out was indeed a rough part of a three month bout with what seemed like the flu. Yet I was immediately shepherded toward Remicaid after I failed the interferon gold test twice but passed on the third try. When after six months of infusions and countless respiratory tract infections later I was swapped over to Humira because I had complained the Remicaid didn't seem to really help with anything. My neuropathy started with the Remicade but what was quick to start my journey which was a painstakingly slow process through two jobs and countless doctors, endless lost hours accentuated with fear and pain, for five years my life unfolded just like Finally Better has described. Although I had to go to Cleveland Clinic just to be tested for ANA. They also found I had no B-1 while I have been regularly treated with B-12 due to Pernicious Anemia from having much of my colon resected.
Am I mad at my Gastroenterologist as Feeling Better was about her situation? Well hell yes. Here's a guy who's been treating me with Humira and collecting his $200 every time he passed go at my yearly colonoscopy and EGD for over five years. I tell him about my problems, the aching joints, the neuropathy, the swelling of my fingers and ankles, etc. Last colonoscopy was not even three months ago and we meet prior to the day I get scoped and I say to this guy, "check me for everything. Take as many samples as you can and test me for everything". I mean, this mind numbing pain and all the Lyrica I've swallowed to get even a little relief and I am getting less prideful and more sensitive of the bullcrap as these last five years has worn on me. So he and I have a slight disagreement about what constitutes testing me for everything and he give me some story about xyz isn't part of his specialization. darn, last time I checked I thought he was treating my autoimmune disease not just there to scope me every year and then make excuses when I need answers. So after a sound touche lashing, I'm sent out to book the colonoscopy appointment and I'm still really shaken up so aI tell his nurse I wanted to see some other gastroenterologist because Dr. G doesn't seem like he wants to work with me. She books the scope appointment anyway and says she will call me back about seeing another doctor. A couple of days pass by and then I get a call from good old Dr. G who tells me all about how he can't test me for this or that because he doesn't know where to send samples. Well I thought the 5050ith time they drew blood they actually sent it to a lab and now he's confused. It's a Chinese menu man, just frickin order every test under the sun, my bill is paid up and I'm good for whatever these tests could possibly cost. Then he ends the conversation with this high handed remark about trying to outsmart him and said as matter of fact as anyone I've ever heard, "Well aren't you going to the Cleveland Clinic? Maybe they have your answers there". I'm laying in bed now, can't sleep wondering what I ever did to deserve that.
And yes, after $3500 later I did get my answers, my gastroenterologist is a Schmuck. Real A class. He knew I was in constant pain yet if I complained, well I'm no doctor but I must have sucker painted all over me. I'm going down to his clinic tomorrow and I'm going to file a complaint and then I'm going to gather all of my medical records from this facility and tell the compliance office to seal my records. I know if ever there would be a trail the first thing these good doctors will do is to change their official records and I'm going somewhere else to see a gastro doc who understands that I'm not belly aching as they cause me even greater harm. I'm so mad I could spit. These past five years on Humria were great for my poor old butthole but at the cost of this neuropathy and while I've watched tooth after tooth be capped. I lost more teeth in the past five years than at any other time in my life. Humria is great for Crohn's but otherwise a living hell of painful neuropathy and thousands of dollars and hours wasted over one not so measly blood test. If you're on Humira and have any photo or aural sensitivity, if your teeth are falling out and your ankles and fingers look like stuffed sausages, take it from me, Humira is poisoning you.
Posted 4/17/2021 7:48 AM (GMT -6)
I developed Lupus symptoms about 3 months ago while on Remicade. The joint pain was horrid. Tried just getting on with things and push through the pain but evening sleep was was none existent due to the pain and stiffness. All remicade infusions were stopped and am currently on prednisone which has helped considerably but as my dosage is progressively being reduced my joint pain is returning. Not unbearable but sore just the same. Im hoping it will subside soon. Life must be unbearable for those that suffer from Lupus always.
Posted 4/17/2021 5:55 PM (GMT -6)
Sorry to hear of your current problems. Curious to know, what will be your treatment plan going forward. Is your GI recommending a transition to another anti-TNF? Hope you feel better soon. Keep us posted. You might want to start a new thread, as you've attached to quite an older one.