I haven't been posting or responding to others much these last couple of months because I have been getting progressively more ill. Cutting to the end of the long story, last Friday I was diagnosed with Lupus [SLE].
As some of you might recall, when I was on Remicade I developed anti-dsDNA antibodies. These antibodies are specific to SLE. During clinical trials, about 35% of people that get Remicade develop these antibodies. Most do not have any symtpoms. If someone does develop symptoms, they go away within 3-4 months after stopping the Remicade. I stopped Remicade almost 10 months ago.
My rheumy ran lots of tests last month trying to get to the bottom of my increasing unwellness. The results are definitive for SLE. The $64,000 question - is this from the Remicade? My rheumy would not say so outright. He did say that anyone with Lupus should not take Remicade or Humira. I called my inside source at a large Remicade infusion center and asked how many people receiving Remicade have developed lupus outright. I am the third. So....
I am not trying to alarm anyone. The new biologics have literally helped thousands to relieve their symptoms. I was so crippled from the AS that I had to use a walker to move around. I was headed to a wheelchair when I started Remicade. I got my life back. My gut symptoms completely resolved and I was able to eat most anything for the first time in 30 years.
To anyone considering Remicade or Humira, please, please do not let this frighten you from having a shot at getting better. Carefully weigh your options and make an informed decision.
To those on Remicade or Humira, please report new symptoms to your prescriber. If you experience fever, new or deepening fatigue, inflamed and/or swollen joints, further or new hair loss, return of mouth ulcers, new or worsening joint or muscle pain, report this and ask to be checked for drug induced lupus. I am not a doctor. However I want people to know what I have learned over the course of this so they can look out for themselves. I know that the doctor should order additional tests beyond the ANA. They should check the ANA and for the anti-dsDNA antibody. Also the following antibodies occur in lupus and my rheumy checked for a couple of these: anti-Smith, anti-Ro, or anti-La antibodies.
I also think that my rheumy's comment about people with lupus not having anti-TNF meds like Remicade and Humira is important. So should someone be tested for lupus BEFORE they start these meds? I think it is a question one should ask their doctor when having the discussion about starting Remicade or Humira. I think it is especially important if their is a family history of lupus. My ANA was negative 4 months before I started Remicade. However, I was not tested for the specific antibodies at that time.
I just reread what I have written so far and it sounds pretty gloomy. I really don't want to bum anyone out. I was stunned by the news for sure. However, I am getting through this.
Peace and health to all ~~ Ides
I notified my GI about this turn of events and his NP just called me. The NP is forwarding research from the latest studies on the association between Remicade and Lupus. It is going to be a very interesting read. When I get it and digest the facts, I'll report back. The NP indicated to me that the time for Remicade induced or Humira induced lupus to resolve might be longer than originally thought in some cases. The NP also told me that I might want to consider Tysabri now. No new meds for me for a while!
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.
Post Edited (Ides) : 6/19/2008 2:15:12 PM (GMT-6)