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Remicade for AS, vs HIGH ANA count

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Rheumatoid Arthritis
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Posted 5/11/2007 2:39 PM (GMT 0)

I am new to this forum but have a concern and would appreciate any insight this forum could provide.

I have been diagnosed with Ankylosing Spondylitis (AS) and have been receiving Remicade for the past 4 years. I had been doing well with treatment but discontinued this drug in Jan 2007, due to my concerns with the unknown long term effects of the drug.  Perhaps, I may have been correct to stop treatment.

Recently during an arthritis flare-up of my left hand, my blood was tested by my General Physician. This included an ANA test which came back high at 1:1280, homogeneous pattern-High Titers.

I passed this information along to my Rheumatologist who has ordered some sub panel testing completed. We are awaiting these results.

My question is this,

Is it common, not to order ANA testing prior to, or during Remicade treatment to get a baseline reading. It was a fluke that my Primary Care Physician ordered this test. I am wondering why this was not checked by my Rheumatologist.

Are there any other concerns with a positive ANA result. I do not believe I have any "lupus like symptoms" at this time. But I remain concern with the ANti-DNA finding.  However, my RBC is at 3.92 X 10E6 (Low).

Could my blood test revert to ANA negative after a time, in your opinion, since I've been off Remicade for 4 months?

I am also concerned with any disease activation. (drug induced lupus, cancers, SLE, etc.)

I realize that these are difficult questions to assess. I am simply looking for forum feedback on this topic.

My personal impression is that if you can live without Remicade-do it.  This drug is very potent and there seems to be too much uncertainty with its potential for other serious health issues.   There is also too much money interlaced with the marketing and use of this drug which can lead drug companies to weigh benefits vs possible litigation, and they may not be forthcoming on all the issues.  (The black box warning on this drug has been updated about 4 times after serious health issues uncovered.)  But think for your self and make your own determination.

I realize that these are difficult questions to assess. I am simply looking for forum feedback on this topic.

-Any information or thoughts you guys could provide would be appreciated.
Posted 5/11/2007 5:33 PM (GMT 0)

You certainly do ask some tough questions.  I don't have any answers for you, except that I have read that remicade, and other tnf-inhibitors, can cause lupus antibodies.  I don't know anyone on the arthritis forum that this has happened to, but I seem to recall someone on the crohn's board that had to stop remicade for similar reasons.  It's not common to develop these antibodies in reaction to remicade, so it would not be part of a regular blood panel with your rheumy.  I know my rheumy probably would not test for it unless I started developing symptoms.  Thank God for our general practictioners, yes?  But I understand that with remicade-lupus, you don't necessarily have symptoms.  I think ANA is a rather squirrely measurement; it tends to fluctuate, even among confirmed lupus patients, from negative to positive, and many lupians will tell you they test negative most of the time.  My rheumy only tested me for it once, maybe twice, in the entire 4 years I've been seeing him.  Your ANA could very well fall on its own, especially since you've stopped the remicade. 

Hope you get good news,

Elcamino

Posted 5/12/2007 4:20 AM (GMT 0)
I have Crohn's and AS. I have been getting Remicade infusions and taking Imuran for 2.5 years. Eight months after beginning Remicade I got very ill. My Rheumy tested me and I had developed anti-dsDNA antibodies. Those antibodies are found in people that have systemic lupus and in about 30% of people that get Remicade or other anti-TNF inhibitors. Since that first flare-up I have not had any others. My blood is monitored every 4 weeks to make sure I have not developed lupus.

Data from clinical trials indicates that people that develop positivie ANAs or anti-dsDNA antibodies to Remicade convert to normal after being off the drug for a period of time. Also, be aware that people that have one autoimmune disease are prone to developing other autoimmune diseases. There are several people on the Crohn's forum that have RA and CD, AS and CD, lupus and CD, and one that has AS, RA and CD. Some of these people have never taken any of the anti-TNF inhibitors.
Posted 5/12/2007 6:29 AM (GMT 0)
Hi I don't take Remicade so I can't address those issues. I do know that I have a high ANA. The further testing will tell you what the antibodies are against. Although I have RA all the antibodies were against my Thyroid gland none were against any inflamatory condition. I went to a Endocrinologist who said The ANA means very little. He said It just means that I am producing antibodies against my thyroid but many people with the same circumstances never have their thyroid fail. Mine is perfectly normal and has been on every test. I use to freak out every time it went up. I no longer have it tested because now I know whats up with it. They ruled out Lupus or anthing sinister.

There are quite a few Remicade users here. I hope you get some answers. I know it is so hard taking all these drugs with side effects that can destroy your life. It scares me to death. It took me a year to agree to try Enbrel. My doctor wanted me to go on Orencia and I declined because of the side effects and the fact it was new. I was too afraid of remicade to try it. I thought Enbrel was the least offensive drug. Good luck

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