Rollercoaster ride, (devastating/maybe)?

Sorry to hear of the continued struggles and the roller coaster ride.

The good news is that the nurse is wrong. A positive ANA test doesn't mean she has lupus. At most, it means she *might* have lupus - or drug induced lupus - or a virus - or any of several other autoimmune diseases. Positive ANA is very nonspecific.

But since she has been on Remicade, it's even more uncertain than that. A large percent (some estimates up to 40% to 50%) of people on Remicade present positive for ANAs at some point during their treatment.

It's only a big deal if the patient presents symptoms consistent with lupus. Since your daughter has had some symptoms, it does need further investigation. But odds are it's either nothing, or it's drug-induced lupus and will go away on its own once she stops the Remicade and switches to another med.

She needs to work with her GI and a rheumatologist and get more blood tests done. The first one should be for anti-histone antibodies, which are highly associated with drug-induced lupus if they come back positive.

For what it's worth, I have high positive ANAs, but I don't have lupus and have never been on an anti-TNF like Remicade. I was diagnosed with another autoimmune disease in the family of lupus, but not actually lupus. There are several in the family.

But like I wrote earlier, odds are it's nothing to worry about or it's drug-induced lupus.

Yeah, she should get the antibody test for Remicade - I forgot to mention that. But it's kind of a separate issue from drug-induced lupus. She could have antibodies to Remi without having drug-induced lupus, or she could have drug-induced lupus without having antibodies to Remi, or she could have both.

Be sure to ask for the anti-histone antibody blood test too.

73monte,

I am so sorry you all are going thru this! I do not know very much about Lupus. I do know that it does occur in patients taking Remicade and that once you get off the Remicade it usually resolves on its own. There have been some people in one of my ostomy support groups with Crohn's who had that issue. I don't think they will share their information though...they never do go into details and have thus far just told people it occurred and they need to speak to their doctors..sigh..

The little I do know, my sister's doctor thought she had Lupus 20+ years ago. Everything pointed to Lupus. She was seeing multiple specialist. (She has never been diagnosed with IBD or had any issues in that department--so no meds to think about.) The "symptoms" stopped as suddenly as they started. They have not been able to find out what it was nor has she had another episode. One doctor said if she ever had it she must have gone into remission. Another stated that her ANAs could have been from something entirely different and it resolved in its own. (It was a period of 6 to 8 months) So please try not to worry.

You all are in my thoughts and prayers.
Clo

Also... The GI should order the antibody test to go with her next infusion. Thru Prometheus the test is 2500. They bill your insurance. If your insurance does not pay Prometheus has an assistance program based on what she earns based from her income tax. If she is still on your insurance/taxes they may use your income. I am not sure. I would call and get the information from your insurance company and start setting it up that way. I would also call Prometheus (or whatever companies your insurance will use) and see what they have available. (The price charged about gave me a panic attack... But we used the income based adjustment and got it down to alittle over 200.00 for my part. And they let you make payments)

I am assuming you are in the US. If you are elsewhere I apologize for the confusion and just urge you to research.

Post Edited (clo2014) : 12/20/2021 7:03:25 PM (GMT-7)

I had horrible fatigue and joint pain with Remicade. My GP ordered an ANA test that was positive with high numbers. By the time I got into a rheumy 4-6 weeks later, my levels were dropping. I had already stopped Remicade and the rheumy put me on a low dose of steroids and after about 6 months the fatigue and joint pain were completely gone. The rheumy thought I probably had drug induced lupus - based on the ANA levels and my symptoms. I was thankful it resolved after stopping Remicade.

Thinking of you and your daughter. I hope that you all are doing well and that you have found the answers you need to help her stay healthy.

Clo