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Have you developed Lupus from either Remicade or Humira?

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Crohn's Disease
Have you been diagnosed with Lupus while on or following Remicade or Humira?
Have not been diagnosed with Lupus - 58.0% - 40 votes
Developed lupus like symptoms on Remicade/Humira that went away when I stopped the medication. - 17.4% - 12 votes
I was diagnosed with Lupus and still have it even after being off the med for more than 6 months - 13.0% - 9 votes
I was diagnosed with Lupus but it has been less than 6 months since I stopped the medication. - 11.6% - 8 votes
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Posted 1/29/2009 1:24 AM (GMT 0)

As I read the posts here, I am noticing more of our members being diagnosed with Lupus (SLE) during or after taking Remicade or Humira. Some developed drug-induced lupus symptoms that resolved after stopping the medication, others still have SLE 6 months or longer after stopping the medication. I decided to begin this poll after seeing another relatively new member mention that they too have developed SLE.

Please note - this is NOT a scientific poll. The question was worded in a way that that would likely drawn responses from mainly those who have dealt with the problem. Therefore I encourage all that are starting one of these two medications not to be overly alarmed by the outcome of this poll. We all must be informed when we start ANY new medication, so do your homework.

Posted 1/29/2009 2:18 AM (GMT 0)
i developed lupus like symptoms on remicade- i couldn't use my left leg. my ana was 1:640 and speckled. i am now on humira and have a malar rash. appt with rheumatologist in am

Posted 1/29/2009 2:24 AM (GMT 0)
Well Ides you know I do. How are you doing with your vision?
Posted 1/29/2009 2:27 AM (GMT 0)

survivor49 said...
i developed lupus like symptoms on remicade- i couldn't use my left leg. my ana was 1:640 and speckled. i am now on humira and have a malar rash. appt with rheumatologist in am

Did your symptoms go away when you stopped?
Posted 1/29/2009 7:40 PM (GMT 0)
Thanks for asking Dunny - my vision problem is the inability of my eyes to properly align vertically. I get double vision looking to the left or right. Brain MRI showed no cause there. Next step is to to a CT of the eyes. I asked to delay this for the time being as the problem is managable with coping skills the wonderful ophthaneurologist showed me. If it worsens, then more tests.
Posted 1/29/2009 10:46 PM (GMT 0)
I took Humira for about 6 months, and I ended up in the ER with severe lung inflammation. After about a month and a half of telling the doctors that something was not right, they finally ran the ANA test, and they diagnosed me with "drug-induced" lupus. I was told that the symptoms would reside about 7-8 weeks after the medication was stopped.

It has been 6 months since my last injection. My joints still ache, I have a very hard time concentrating/thinking (which bites because I am an accountant, and I REALLY need my brain!), I have had multiple kidney infections, eye inflammation, swollen glands, very bad fatigue - all symptoms that I never had with Crohn's (except for the fatigue).

My life has been a mess. My Crohn's was hard enough to manage - now I have two lovely autoimmune diseases. I really hope it gets better, but I've pretty much accepted that it's here to stay. How fun : (
Posted 1/30/2009 11:15 PM (GMT 0)
bump
Posted 1/30/2009 11:42 PM (GMT 0)
Is there a way to see the results without voting? It's not applicable to me right now but I'm interested.
Posted 1/31/2009 12:07 AM (GMT 0)
ides,
has your opth. checked for paulsy of the optic nerve?
Mother - in law has that, needs correction of her glasses yearly to adjust to the paulsy.
Jennifer
Hope you get answeres and relief
Posted 1/31/2009 12:57 AM (GMT 0)
The current vote is [as of 2/1/09 1 pm PST]
No lupus - 8
Lupus-like symtoms that went away when medication stopped - 1
Diagnosed with Lupus and still have it even after being off the med for more than 6 months - 4
Posted 1/31/2009 7:09 PM (GMT 0)
Thanks for posting this. I'm on Humira for 4 months now, and I've been getting a redness on my cheeks and nose that worsens after the injection, then simmers down a few days before I'm due for the next shot. I get joint pain that started with the Humira too. I also get hot and flushed sometimes ( a totally new thing for me). My GI didn't seem all that concerned a couple of weeks ago, but should I be?
Posted 2/1/2009 5:13 PM (GMT 0)
Ides, any update since Friday on this poll? It seems that 50% of people that responded did indeed have lupus like symptoms. That is kind of scary, since I am a female starting Humira next week! Let us know how this turns out.
THanks!
Posted 2/1/2009 9:38 PM (GMT 0)
Crohnie88 - Please go back to the top and read the new note I added in RED. This poll is mainly going to get responses from those that dealt with the problem, and were interested in the topic. Nowhere is there any evidence that 50% of people using Humira or Remicade develop Lupus. My own reason for starting this poll was because I have noticed more people here reporting being diagnosed with Lupus. I can assure you there are many, many people taking Humira for RA, CD, AS that are out there leading healthier, more productive lives because of these meds - they aren't having problems and aren't here looking for support.

My intentions were never to frighten anyone from taking a medication that could improve their quality of life. Remicade improved mine immensely.
Posted 2/2/2009 2:30 AM (GMT 0)
I am in so much pain right now that I am litterly having problems sleeping, moving, and generally just breathing. But mine is a fairly bad case and I have other issues going on.

I also want to encourage people not to get freaked out about this... it is rather rare...

Kasper, that is a huge issue within the feminist community. Women are usually more vernerable due to childbearing, etc., and are somewhat just expected just to be "whiners" about being in pain due to some of the "mental health issues" due to "biological changes."
Obviously this is something that we have to deal with as patients, it is so interesting what the difference of treatment is when you have a male accompany you to a medical treatment.
It is pretty amusing and awful frustrating sometimes when I get better treatment, because my "little" brother accompanies me.

Posted 5/11/2009 7:42 PM (GMT 0)
Another diagnosis of Remicade induced lupus here.  BUMP
Posted 11/18/2011 2:27 AM (GMT 0)

  Hello! I'm new here and actually joined for the IBS part for myself, but my son (16) has severe Crohn's and I just wanted to say that he's been on Humira for several years and has never had any problems with it!  It has been a life-saver for us:)

Posted 11/18/2011 2:49 AM (GMT 0)
I tried to post a reply on this subject and this website deleted it because I believe I entered my e-mail for contact information----what's up with that???????
Posted 11/18/2011 2:51 AM (GMT 0)

Rider Fan said...

survivor49 said...
i developed lupus like symptoms on remicade- i couldn't use my left leg. my ana was 1:640 and speckled. i am now on humira and have a malar rash. appt with rheumatologist in am

Did your symptoms go away when you stopped?

*Please post your email in your profile not on the open forum becuz spammers will attack you*  Thanks!

Post Edited By Moderator (Nanners) : 11/18/2011 7:36:27 AM (GMT-7)

Posted 11/18/2011 2:37 PM (GMT 0)
You have attached to a 2 year old post. Many of the members are no longer on the forums or haven't been seen for months. You would be better served starting a new post, becuz folks tend to avoid these posts thinking they already responded. Thanks!
Posted 12/11/2011 12:12 AM (GMT 0)
I agree. I haven't been on here in a while. Humira for the past 4 years, within almost the last year, having lupus like symptoms again! Had Lupus like symptoms very severe while on Remicade...
Posted 2/12/2012 8:08 PM (GMT 0)
I have been on remicade for 4 years and became very ill a year ago with extremely painful joints hair loss and rash. I could barely walk or pick anything up. A year later I have been diagnosed with Lupus. I'm on anti inflammatories for the joints and I know I'm playing with fire taking them but, it is so wonderful to be almost pain free. Does anyone else take anti inflammatory meds for their joint issues. Also, the rhuematologist thinks I should continue with my remicade infusions. Have other stopped once diagnosed with Lupus or continued? Lastly, how do I work with this?
Posted 2/12/2012 8:53 PM (GMT 0)
I've had Lupus symptoms ever since all my other autoimmune diseases/ conditions started and got full blown Remicade induced Lupus after my 2nd treatment. Now I am on Humira and still have Lupus symptoms so I go back to my Rhuematologist soon to discuss if he thinks it will resolve soon or be a permanenet thing I did have a positive ANA.
Posted 2/13/2012 5:20 AM (GMT 0)
trying to get by - -
I tried to stay on Remicade after they first diagnosed drug induced lupus [DILE]. BIG, big mistake! It just got worse until I finally had to stop Remicade. Then they started me on Humira after only being off Remicade for 6 weeks. Another big mistake. I had a severe reaction then ended up with me having to go to the hospital. I was then off all anti-TNF meds for 18 months while they treated the DILE. I took Plaquenil for over a year to help get rid of the DILE symptoms.

I have been on another anti-TNF now for 2.5 years without any problems.

Good luck. Make the GI and rheumy talk about your situation. You should not have to be the one to suffer through this while they figure it out.
Posted 7/14/2012 2:45 AM (GMT 0)
My dermatologist put me on Remicade infusions for my psoriasis...BIG MISTAKE! I now have drug induced lupus and am in excruciating pain. Every joint in my body has been affected which makes it difficult to pick up or carry my 9 month old baby. :(

I am on 15 mg of prednisone daily and hydrocodone which gives me very little relief. It has been 3 months since my last infusion and I wish I knew how much longer I will be feeling like this. Does anybody else have severe chest pain with the joint pain too?

I hope we all can find some relief soon!
Posted 1/3/2014 9:37 PM (GMT 0)
Looks like this is an old post. But I am one of those who still has Lupus and it is worse or as bad as Crohn's. Would love to see this redone if it's possible. I know it's hard to hear and is a touch subject but if there is a common theme, it would be helpful for the newbies to know before starting this medication. Just saying.
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