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Possible Lupus

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Posted 5/5/2018 1:42 AM (GMT -7)
I have been on Remicade for 2 years, and a few months ago I started getting severe joint pain and swelling in my wrists, knees, elbows etc.. The pain and swelling moves around. I called my GI doctor and he had me get bloodwork to check for Remicade antibodies. He called it a Prometheus test. Anyway, he called a couple of weeks later and said everything looked fine and to continue my infusions, but to see a rheumatologist to check out the cause of my joint pain. So I got a referral but can't get in to see a rheumatologist for 6 months. In the meantime my pcp did bloodwork that showed a positive ANA and possibility of lupus. He then sent me for the anti-dsDNA test and it came back positive, suggesting lupus. So I had been hoping that my pain might be caused from the Remicade, but the Prometheus test for antibodies had been negative. So I am really confused. If the Prometheus test shows no antibodies to Remicade, does that mean that I might have full blown lupus and not drug induced lupus? Has anyone had any similar problem?
Posted 5/5/2018 9:47 AM (GMT -7)
Hi ep49. Back when I was on Remicade I did get drug induced Lupus. I did not at the time have antibodies to Remicade. I was seen by a rheumatologist & he prescribed Placquenil which helped with the symptoms. The rheummie did a lot of different labs, it was not dx'd based on the ANA only. I think a year or so later I did develop antibodies to Remicade. The Lupus went away after going off of the Remicade. I then went on Humira. Try not to put the cart before the horse worrying about having a positive ANA. The ANA means there is something going on but, it may not be Lupus. Having to wait 6 months for an appt with a rheummie is ridiculous, get your PCP involved in finding one that will see you sooner.

Take care.
Posted 5/5/2018 3:07 PM (GMT -7)
Your joint pain is a result of the drug-induced lupus. I developed DILE after 2.5 years on Remicade. I had a positive ANA and high levels of anti-dsDNA antibodies. I was immediately switched to Humira which was a big mistake because the symptoms greatly escalated. I ended up first on prednisone, then Plaquenil.

Usually once you stop the Remicade your symptoms should go away within 1-4 months. In some individuals, it can take as long as 6-12 months for the anti-dsDNA antibodies to clear the system. It took a year for mine to go away and all the symptoms to subside. My rheumy said that long to clear was unusual, so I bet you will get relief much sooner.

If you have questions, ask away!
Posted 5/5/2018 4:53 PM (GMT -7)
The main question I have that keeps me confused is why my GI doctor, after explaining how antibodies to Remicade can cause a Lupus like condition, sent bloodwork out for the Prometheus test and told me it was fine and to stay on Remicade.

Are the ANA and anti-dsANA tests totally different tests for other antibodies? How can Remicade antibodies not be evident in one test and other antibodies due to the Remicade infusions be causing DILE? And why isn't my GI doctor and my PCP aware of this? They told me to see a rheumatologist to find the cause of my joint pain! This is what makes me question the possibility of Lupus that isn't from my biologics. I hope the rheumatologist is a lot more knowledgeable and can help me get the right treatment or stop the Remicade and hopefully see some improvement. Humira is not an option because I tried it first and it failed. I had to have surgery after that and now have a colostomy.

Thanks for your replies, friends. I appreciate the input. smile
Posted 5/5/2018 5:30 PM (GMT -7)
Yes, the ANA and anti-dsDNA antibodies are different tests looking for different antibodies. They are antibodies your immune system can make against your own cell nuclei.

Antibodies to Remicade are antibodies your immune system can make that attach to the infliximab molecule.

You can develop DILE without having antibodies to the Remicade itself - because somehow the Remicade has led your immune system to develop antibodies against its own cells.

On the other side, people often develop antibodies to Remicade without developing DILE.

There *might* be a higher incidence of DILE in people who develop antibodies to Remicade, but I'm not sure about that. But otherwise they're really two separate things.

Your GI *should* know this, but many don't really understand it well. I'm not surprised your PCP doesn't know this.

I'd try to get a high-priority appt to see the rheumatologist sooner, or have them refer you to another rheumatologist that can see you sooner.
Posted 5/5/2018 5:32 PM (GMT -7)
The test done by Prometheus tests for antibodies to Remicade's make-up. The ANA and anti-dsDNA tests are totally different. You can have no Remicade antibodies, but have the anti-dsDNA which cause the joint pain you are experiencing. Hopefully, the rheumatologist you see will know the difference. How long until you see the rheumy?
Posted 5/26/2018 2:51 PM (GMT -7)
Thank you, Beave, Ides and straydog for your helpful comments. My rheumatologist appointment is still scheduled for October 25th, but my pcp has managed to get me on a high priority cancellation list. In the meantime, they ordered another blood test called antihistone ab and the value is 1.2, which again points to Lupus. My GI doctor told me to stop the Remicade infusions and has started the process to change me to Entyvio. My pcp told me that it doesn't matter if I stop Remicade because he says that the Rheumatologist told him that if the Lupus isn't drug induced and is in fact systemic Lupus, the Remicade will help treat it, which makes absolutely no sense to me because I was on it for 2 years before getting any symptoms! He gets agitated when I question him and continually refers to my infusions as Humira and not Remicade. I have no idea what he told the Rheumatologist but I think there is some lack of communication. Meanwhile I continue to suffer and feel pretty helpless and depressed at this point. I also wonder how long one should wait when changing from Remicade to Entyvio. Any thoughts or advice? This forum is more helpful than any of the doctors so far! Thanks to all of you.
Posted 5/26/2018 4:50 PM (GMT -7)
If it's the Remicade causing the lupus (drug-induced lupus, called DILE), then stopping the Remicade is necessary. But it's hard to know how quickly the DILE will go away once you stop the Remicade.

Remicade isn't approved to treat lupus, but it is approved to treat rheumatoid arthritis. And many people with lupus have significant arthritis manifestations. So in a sense it *can* be used to treat a *manifestation* of lupus. But when a person is already on Remicade and only then develops symptoms of lupus, it's obviously not a good treatment. It's more likely a *cause* (especially given the antihistone antibodies being present).

So your pcp and/or rheumatologist are getting confused somehow.

As for how long to wait before starting Entyvio, when was your last Remicade infusion? Entyvio can be slow to act (several weeks, even a few months to kick in), so it might make sense to start it sooner rather than later.
Posted 5/27/2018 12:47 PM (GMT -7)
My last infusion was in April, so I was due for another in June but have cancelled it. My concern is that if I start Entyvio infusions, I am adding more chemicals to my body at a time when I am having reactions to a chemical that's already in my system. According to some information I have gathered, Remicade can stay in your system for months. I am really at a loss for answers and my doctors are no help at all. Thanks so much for your input. It's all I have to rely on at this point to find some guidance and intelligent answers.
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