remicade reactions? lupus symptoms?

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uniquemonique
New Member


Date Joined Jun 2008
Total Posts : 1
   Posted 6/5/2008 12:01 PM (GMT -7)   
Hi.
I'm new here and after readying alot of posts I have a question regarding remicade.
I've been on it for about 4 years now. We think that I have built up anti bodies to it and I have developed some lupus like symptoms, acne like rash on my face and chest and back,  among other problems that could also be crohn's symptoms, so difficult to tell. Anyone have any lupus symptoms from remicade or this rash?
 
I am going to start humira aI just saw my GI last week and waiting on the co-ordinator to call etc. Should I expect to feel any different in switching to humira from remicade?
 
thanks so much for this space.
monique

justjenjen
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Date Joined Nov 2003
Total Posts : 518
   Posted 6/5/2008 12:26 PM (GMT -7)   
I had that type of reaction and my docs decided I should not be on remicade. We tried another go with using prednisone about a week before but I still had the reaction. I cannot remember the reason now but my docs did not think humira was a good drug for me. I hope you can get on something that works!

Crohn's 4 ever
Regular Member


Date Joined May 2008
Total Posts : 207
   Posted 6/5/2008 1:14 PM (GMT -7)   
Hi there, I was on Remicade, and a very rare reaction took me off it for good. How ever I am on Humira now, and I also am on another crohns forum and a guy just posted this, kinda depressing about this, but I dont care, Humira is all I have left and had a shot today and been on it since March 28, absolutely no side effects, and do the shot in my own home. I used syringes. I have had crohns 30 years now and two resections, so you have to do what gets you better. I decided, long term pain or short term of feeling good. Your choice. I am sticking to Humira for 4 months trial, and go from there. We have crohns differently and react differently to meds. Welcome and heads up!



http://www.fda.gov/medwatch/safety/2008/safety08.htm#TNF

Ides
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Date Joined Nov 2003
Total Posts : 7077
   Posted 6/5/2008 4:19 PM (GMT -7)   
I developed Remicade induced lupus antibodies 7 months after I started the medication. I continued for another 2 years getting Remicade every 5-6 weeks with good results. My rheumatologist monitored my blood every 4 weeks to assess the lupus antibody levels and make sure that no other organs were being effected. Then at the end of that 2 years, Remicade ceased to work anymore. I switched to Humira after waiting 8 weeks to make sure my body had cleared the Remicade. I took Humira for 3 months and then had a serious reaction. My GI feels I developed antibodies to the protein in the Humira. My rheumy feels I developed Humira induced lupus antibodies. The doctor handling my reaction did not take the necessary tests to determine which type of reaction I had. I hope you have great success with the Humira!
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


asc58
Regular Member


Date Joined Jun 2006
Total Posts : 83
   Posted 6/5/2008 5:06 PM (GMT -7)   

Wow talk about timing.  I just met with my GI today concerning joint pain... hands, fingers, feet and ankles, weak knees.  I've had crohns now for 38 years and never these problems.  Only three resections, the latest last March. I've received Remicade 10 mg/kg every eight weeks for the last 3 years along with 6mp and Entocort. I came off all drugs for about 6 months after the last surgery but he put me back on remicade due to a recurring fistulae.  It seems it is not working and the joint pain is increasing. Very little pain in the morning but steadily increases thru out the day and by most nights I walk like i'm 90 and i'm 49.  I wish I would have thought to ask him about DILE. So I have the same question as you, Does anybody know if Remicade can cause Drug Induced Lupus Trythematosus?  My GI is scratching his head as to why i'm having these problems after years of doing so well on the meds. He is going to take me off Remicade and is leaning toward Humira. I've checked the Lupus Foundation website and Remicade is not on their list of drugs to possibly cause DILE (which I know does not mean anything). After reading Ides's response, maybe I should go see a Rheumatologist?? Any input on the drug induced lupus will be greatly appreciated.

Steve


Shoshanna
Regular Member


Date Joined Feb 2008
Total Posts : 91
   Posted 6/5/2008 5:17 PM (GMT -7)   
I am one that ended up with lymphoplasmacytic due to Remicade so I am not a candidate for Humira. I was not taking anything else at the time with remicade.


Shoshanna
CD diagnosed 34 years ago
Stem Cell Transplant may be back on
Lap-assisted Ileocolic Resection- February 2008
Ankylosing Spondylitis
Uveitis
Back on Prednisone - I hate it
Methotrexate
Ranitidine HCL 
Prednisone 1% (eye drops)
Maxidex  (eye ointment)
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B12, Folic Acid, Vitaman D, Calcium


Crohn's 4 ever
Regular Member


Date Joined May 2008
Total Posts : 207
   Posted 6/5/2008 7:54 PM (GMT -7)   
Shoshanna said...
I am one that ended up with lymphoplasmacytic due to Remicade so I am not a candidate for Humira. I was not taking anything else at the time with remicade.


Shoshanna

Too bad you cant take Humira, so what are  your options now?

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 6/5/2008 8:53 PM (GMT -7)   
First, please excuse my typos as my arthritis is really acting up....

Lupus ANTIBODIES were known to develop in those receiving Remicade very early on in clinic trials of the drug. about 35% of everyone taking the drug develop them. VERY, very few people actually develop lupus SYMPTOMS or LUPUS from the medication. I was able to continue on Remicade because while I had developed the anti-dsDNA antibodies, I had few signs of lupus. I did/do have severe joint problems but those had developed prior to starting Remicade so it was felt this was not a lupus symptom. My rheumatologist monitored my blood each month to check my level of anti-dsDNA antibodies, my C3 and C4 complements, and kidney function besides the basic complete metabolic panel.

If it is discovered that one has a positive ANA or ds-DNA antibodies while on Remicade, and is having new, never before symptoms, then it is possible that it is a lupus-LIKE syndrome. According to my rheumy, a good way to tell if the problem is related to a connective tissue disease like lupus is to test the C3 and C4 complements. Also, a test to make sure one has not developed antibodies to the murine protein in Remicade might also be warranted. That test is called a HACA and is done by Prometheus labs.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


asc58
Regular Member


Date Joined Jun 2006
Total Posts : 83
   Posted 6/6/2008 5:20 AM (GMT -7)   
Thank you for your reply IDES and God Bless.

Steve

honbunnie
Regular Member


Date Joined Mar 2009
Total Posts : 31
   Posted 4/23/2009 12:37 PM (GMT -7)   
Hi Ides
 
I am bumping this post up to see if I can get some more recent episodes  DIL by Remicade.
I have been on Remicade for 8 months for Psoriasis and Psoriatic Arthritis.  In February I began feeling increased pain in ALL joints headaches, EXTREME exhaustion but not able to sleep.  I also became short of breath as well.My eyes are burning, on fire My labs came back ANA 1:640 and anti DNA ds was positve.  C3 and C4 were normal.  I had another Remicade dose on April 1st.  I have been having low grade fevers for 2 weeks with no sign of infection.  I feel horrible.  Doctor says. "it's not the Remicade"
I am going to Baylor Med Ctr next week for a 2nd opinion.
 
Would like to compare notes with anyone with similar symptoms on Remicade....
 
Thanks in Advance
 

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 4/23/2009 4:53 PM (GMT -7)   
If your doctor says it's not the Remicade, then he is very mistaken in my book. I'm glad that you are getting a second opinion. If I were in your shoes, I would ask them to repeat the labs [ANA, anti-dsDNA, SED rate, CRP, complete metabolic panel, U/A, and there are some others I need to look up.] If the ANA and anti-dsDNA are still elevated or higher than the other, I would be extremely reluctant to have another infusion.

There are quite a few others here that have developed lupus outright from Remicade. Normally, once a person stops the infusions, the positive lupus antibodies should go away. I continued to have infusions for 2 YEARS after my first positive labs and lupus-like syndrome smptoms. The symptoms went away after a burst of prednisone and the docs assured me no harm would come from continuing infusions of Remicade. Then I developed symptoms again, and this time I said no more. I still have not converted to normal and it has been almost 2 years since my last infusion. Would this have happened had I stopped after the first episode? That is something noone can answer.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


Lisa430
Regular Member


Date Joined May 2007
Total Posts : 148
   Posted 4/25/2009 7:19 PM (GMT -7)   
I developed lupus like syndrome after my third loading dose of Remicade. All of the symptoms went away after I went off it. My GI says that only a small number of people will actually have a positive ANA and related test results if the cause is the Remicade, I started Humira at the time that my next Remicade was due and stayed on it for about a year and a half. It took a long time to kick in and I developed a number of reactions including numbness and tingling in my legs, a weight gain of 50 pounds and a feeling of heaviness and pain in my legs. I went off the Humira about a month ago and now have an acne like rash all over my face. (I look like I'm going through puberty LOL) We have tried multiple creams and I am scheduled for allergy tests this Monday. The good thing is that it has been a month off the Humira and the tingling and numbness in my legs is gone, the weight is starting to come off and my last colonoscopy done April 8 showed no inflamation. Just hoping things stay on track.

bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 4/26/2009 10:24 AM (GMT -7)   
So can you have Remicade-induced lupus even if your ANA and dsDNA test results are normal? I've been having joint pains the last couple months, but my test results came back normal.
I don't know what else the joint pain could be. They aren't swollen, so I don't think it's RA (which if it was, Remi should be helping). And I never had any joint problems before this starting in February.
Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (7 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 20 mg Prozac, VSL #3 DS, Turmeric
 

Post Edited (bookworm21) : 4/26/2009 11:28:15 AM (GMT-6)


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 4/26/2009 5:14 PM (GMT -7)   
bookworm, I doubt any doctor would say you have Remicade induced lupus if your ANA and anti-dsDNA antibody tests were normal. While one is diagnosed with lupus based on a series of criteria, for it to be drug-induced, one would have one at least one of the tests positive PLUS three or more of the other diagnostic criteris. Those criteria can be found listed here: http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutfaq.aspx?articleid=75&zoneid=19


Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 4/26/2009 6:03 PM (GMT -7)   
Thanks for the reply, Ides. The only other common lupus symptoms I'm having are fatigue and hair loss.
But the joint pain in my fingers right now is almost unbearable! I still have another month til my rheumy appt.
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