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Lupus from Remicade Question

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Posted 8/30/2013 6:35 PM (GMT 0)
Has anyone here been diagnosed with Lupus from Remicade (or from another TNF drug) and not been able to get rid of the Lupus?  I was diagnosed this week with drug induced Lupus, most likely from Remicade, and my Rheumatologist advised there is a chance the Lupus may not go away. 
Posted 8/30/2013 11:49 PM (GMT 0)
I'm so sorry for your diagnosis. I can't help you with the question but I'm sure there will be someone here to help soon. I was tested when I was on 6-MP because I have similar symptoms, but the lupus testing was negative. -Joy
Posted 8/31/2013 12:08 AM (GMT 0)
I developed full blown Lupus from Humira. It likely started developing during my 2.75 years on Remicade.

Usually, most people that get lupus from anti-TNF meds will no longer have lupus symptoms after about 4 months. That's what the "literature" says. It took a full year for the anti ds-DNA antibodies to be gone from my system.

My initial symptoms were daily low grade fevers, unbelievable fatigue, joint pain and swelling, mouth sores and sun sensitivity. I was started on a prednisone taper and then given Plaquenil. I took the Plaquenil for a year. It helped some with the symptoms but of course not as much as the prednisone.

There are several others here that have also developed drug induced lupus from the anti-TNFs. I'm sorry you have joined our club. Hopefully you will quickly get rid of those pesky antibodies!

Also, after 18 months off anti-TNFs, I started another biologic, Simponi. That was 4 years ago and I have not had any problems.
Posted 9/9/2013 6:46 PM (GMT 0)
Hi Ides,

Thank you so much for your reply.  If you don't mind me asking, did you have really bad joint pain and swelling with it?  My ankle/foot is so swollen right now I cannot get a shoe on and it honestly looks more like I have gout (I was tested and I do not have gout, however). 

That is encouraging to hear you are able to take an anti-TNF again.  Those meds seem to work so well and I was sad when I had the reaction to Remicade that I may never be able to take them again.

Posted 9/9/2013 11:28 PM (GMT 0)
Yes, I had very severe joint pain and swelling. My wrists and elbows were so horrible I didn't want to do anything that used my arms. The prednisone helped get that under control. The fatigue and daily fevers were so draining. Walking the 50' from my bedroom to kitchen was so tiring I would have to sit and rest. Every step was like slogging through chest deep snow.

What meds has the rheumatologist put you on the treat the symptoms?
Posted 9/11/2013 6:44 PM (GMT 0)
Hi Ides,

Thank you so much for the reply.  Currently I am on Imuran for the drug induced Lupus.  I did have a cortisone shot administered at the Rheumatologist a few weeks ago but it didn't help me.  I struggle with oral prednisone because I get depressed on it so I am currently not taking it.

I saw my gastro yesterday and it was interesting.  They seem to think, based on my blood work, that I may have Lupus and not necessarily the drug induced Lupus (I honestly have no idea what to think about all of this right now).  So my gastro wants me to have the next Remicade infusion scheduled the end of this month--if I really have drug induced Lupus, then we'll probably know shortly after the infusion (I have mixed feelings on this).  At this point, my gastro is not sure what med to put me on because I have tried other Crohn's meds in the past and not responded to them and it looks like anti-TNF's are out for now.  They are going to see if I can see an IBD specialist in the area who can hopefully help me out more.

Back to the Imuran, my gastro tried that back in 2008 but I am a slow metabolizer so it will unfortunately take my body a long time to start using the drug and have the benefits from it.

While you were off anti-TNF's due to your Lupus, what did you take for Crohn's?  I asked my gastro about taking Pentasa again but they are worried it will not be beneficial as I have Scleritis (eye inflammation) from the Crohn's and they are worried the Pentasa will not help that out.

Thanks so much! 

Posted 9/11/2013 7:51 PM (GMT 0)
Another med you might find better suited to helping with the lupus symptoms is Plaquenil. I was on Imuran when I got DILE and it did zilch to help with the symptoms.

While off anti-TNFs I continued Imuran. It kept my CD under control. However, you should know that when diagnosed I had "mild" CD. It is likely that is why Remicade so rapidly put my guts into remission. I was given Remicade more fore the ankylosing spondylitis than the CD symptoms.

If you decide to go ahead with another infusion, my suggestion is to do it early in the week so if you do run into problems afterward, your docs are readily available. My Humira dose that sent me over the edge with a horrid reaction was at the end of the week, Ended up in the ER with no docs at all familiar with what was going on - they didn't order the correct blood tests to check the type of reaction, etc., etc.
Posted 2/11/2014 11:40 PM (GMT 0)
Hi Ides,

I am still really struggling with the Lupus. My symptoms are getting worse instead of better and my blood work shows an increase in inflammation. My Rheumatologist ran blood work about a month ago and it showed the drug induced lupus titer is going down but the ANA is not--he is concerned that I may have both lupus and drug induced lupus but it's still too early to know for sure. I was wondering if this happened to you? I am on the max dose of Imuran and started taking prednisone 40 mg a day and I am still not doing that well. I have pain almost all of the time and am very limited as to how long I can stand or walk, or do anything for that matter. My doctor thought about switching me to CellCept but that does not help the Crohn's and he does not want to see that end up active in all of this. My gastro thinks I should get a second opinion from another Rheumatologist but honestly, I feel like I see enough doctors as it is (I am sure that sounds bad, but that's how I feel).

I had a scope back in December and my Crohn's is in remission, so that is awesome! At least there's some good news there.

Anyways, I was just wondering if you got worse with the drug induced lupus before you felt better.

Thanks a bunch!
Posted 2/12/2014 12:04 AM (GMT 0)
My rheumatologist eventually me on Plaquenil along with the Imuran. That was at the third or fourth month from the time I developed all the symptoms. It helped a lot in getting the lupus antibodies to start going down. It took me about 2-3 months after that before I started to feel semi-normal. It was at the one year mark that I finally had no antibodies in my system.

Do you like your rheumatologist? Have faith in his judgments? If so, then if I were in your spot, I probably wouldn't think I needed a second opinion. But if you are uncertain than perhaps you should reconsider the second opinion. Around my neck of the woods it is very difficult to get into see any rheumatologists.

I am so sorry you still are feeling so poorly. I hope you get some relief soon! Keep in touch and let us know how you are doing. Also, feel free to email if you have other questions.
Posted 2/14/2014 8:37 PM (GMT 0)
Thank you so much, Ides. I spoke to my gastro and she is going to repeat a stool test to see if I have any inflammation in my gut (I think it's the calprotectin or something like that). To be honest, I am SO afraid that if I do show up with inflammation in my stomach, she will want me to take Humira (she has mentioned this a couple of times now). I am really hoping the test will be negative--my scope back in December really looked like a "normal" bowel.

Anyways, I am afraid because my current rheumatologist does not want me on an anti-tnf again and my gastro has found out through other doctors or conferences that it is still ok for someone who has had drug induced lupus to take a different anti-tnf again in the future. I really don't want to get any worse with the drug induced lupus than I already am. Were you afraid to take the Simponi after having the lupus? Maybe my gastro wants me to get a second opinion to see if another rheumatologist would say the same thing regarding the anti-tnf?

I plan to ask my rheumatologist about possibly taking Plaquenil. Maybe that could really help me get past this current state. I see him next week.

Thanks again for any advice or help! And for letting me vent and express my fears!
Posted 2/14/2014 10:43 PM (GMT 0)
My rheumy discussed the possibility that I could get DILE [drug-induced lupus] from taking another anti-TNF. She said in the beginning she would carefully monitor my antibody levels. I was having so many problems with my joints and SI joints that I was all for giving it a try. I have been taking Simponi for almost 5 years now without any sign of lupus antibodies.

I would not have been so gung-ho to try another anti-TNF if I was still suffering from the effects of DILE. I like you GI's idea to do the fecal calprotectin test to see if you have inflammation in the gut. Hopefully if will be good and you can try and to get better without another anti-TNF at this time.

Also, like I wrote earlier, my rheumy believes the DILE began while I was on Remicade but the actual tipping point was Humira. Therefore until you are better, I would be hesitant about Humira. What are you antibody levels now? Are they coming down?
Posted 2/14/2014 11:24 PM (GMT 0)
Yikes that's scary that yours probably started with Remicade and then really came out with the Humira. My ANA titer last month was 1:1280--I would hope I would not start another anti-TNF until that level comes down to near normal. If it takes about a year for the antibodies to go away, then on a good note, I am about half way there...
Posted 2/14/2014 11:59 PM (GMT 0)
Keeping my fingers crossed for you!
Posted 2/15/2014 4:57 PM (GMT 0)
I wAs on humira for 3 months in early 2012. I had a bad reaction to it. My Ana is still positive. They still won't say I have lupus. But my Ana has been positive every 6 months when it has been checked. It actually went up a little over the last 6 months instead of down. My rhemutologist may finally say I have it in march when I go in but I've been struggling with joint pain and body aches this entire time. Even if the rhemutologist doesn't say that I officially have it in march, I'm going to the mayo clinic in April so hopefully they can figure it out better.
Posted 2/18/2014 2:29 AM (GMT 0)
Hi,

Sorry to hear you are having such a hard time.  I to developed Remicade induced Lupus.  The joint pain was unbearable and it jumped from one side of my body to the other i.e. started in left thumb joint and the next day was in my right shoulder, etc..  The only meds that helped me were MTX and prednisone together.  They both work for Lupus and Crohns.  I had a positive ANA for one year after I discontinued the remicade.  I am currently on Humira and have been for 5 or more years already.  (I can't remember exactly)  My ANA is positive again, but so far I am holding my own - no massive joint pain.  There is no mistaking that pain.

Take care,

Julia

 

Posted 3/3/2014 6:46 PM (GMT 0)
Thank you all so much for the replies! I did the fecal calprotectin test and my number was normal--actually lower than it was back in October, so the inflammation is not coming from the Crohn's. I see the rheumatologist this Thursday because I have gone into another really bad Lupus flare up. I am going to ask him about taking plaque-nil along with the Imuran (I don't think the Imuran is touching the Lupus). If he doesn't go for that, I may ask about using MTX--maybe that would work better for the Lupus than the Imuran.

Oh Julia, I REALLY hope you don't get drug induced lupus again! It is awful!
Posted 3/5/2014 2:34 PM (GMT 0)
Hi indigosunrise.. I actually was diagnosed with DILE back in 2011 from Remicade when I was having a severe flare of lupus-like symptoms, a positive ANA with homogeneous pattern and a very high titer. I stopped the Remicade shortly after and my symptoms cleared right up, and I have been COMPLETELY unmedicated since then.... But the past two weeks I have been having some bad symptoms again, they checked my blood work and my ANA/pattern/titer are all still the same :( So even 2+ years later, it seems my DILE never went away. I just received these results yesterday so I haven't spoken to my doctor yet but it makes me wonder if I've just had regular lupus all along and just happened to discover it while on Remicade because I was having a flare. I always had lupus symptoms before Remicade but assumed it was extra-intestinal manifestations of my Ulcerative Colitis and was never tested before then.

I hope your antibodies do go away and your symptoms clear up! Let us know how your Rheum appt goes!
Posted 3/5/2014 8:07 PM (GMT 0)
Hi ediekristen,

Thank you so much for the reply. I am so very sorry you're going through this again. Please keep us posted as to what you find out regarding the Lupus--I hope you get answers soon and feel better as well!
Posted 3/18/2014 4:14 PM (GMT 0)
Hi all,

My rheumatologist gave me the ok to try plaque-nil and I am really hoping it will do the trick, in time! I'm still on prednisone for the lupus symptoms and every time I try to go below 15 mg, I start to pay for it with more pain, swelling, fatigue, and fevers. So far the Azathioprine seems to be helping the Crohn's a lot but I don't think it's doing anything for the lupus.
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