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Remicade Arthritis mystery Solved

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Posted 9/28/2021 1:49 AM (GMT 0)
I have shared a post early about my difficulties with significant arthritis with huge uptick in pain when my Remicade was increased last March. I was certain it was Lymes disease as I had been hiking and had deer ticks on my coat, I was certain a little critter found its way to me. The treated for Lymes --had sight decrease in pain but not for long. I have had bad pain in about every joint of my body and extreme fatigue with poor sleep. One has to keep pushing ones; Dr's ( i have a great Dr.) i think especially when one is a woman-I think. Last week my Rheumatologist ran some other blood test. The Antinuclear AB HEP- 2 and Antinuclear AB By IFA both came back positive indicating I have Lupus. Most likely drug induced from the Remicade. KRIKEY- as the Remicade has really helped the UC. I meet with my Gastro Dr. next week to discuss going to Stelera. Not sure why we waited so long to have these tests. I have been on Methotrexate for about 5 months with little relief.

Curious if anyone else has gone through this. Also curious of the Lupus always goes away. I have heard for some it doesn't.
Posted 9/28/2021 4:13 AM (GMT 0)
What were your exact tests and results?

Positive ANA alone doesn't necessarily mean you have systemic lupus (SLE) or drug-induced lupus (d-ile).

There are several possible reasons for elevated ANAs, lupus or drug-induced lupus being only two of the many. Other autoimmune diseases are possible, as are viral infections, other medication reactions, etc. Further testing by your rheumatologist is warranted.
Posted 9/28/2021 2:22 PM (GMT 0)
Will your insurance company cover a Remicade antibodies test? It might be worth a trying the test to rule out a reaction if you have antibodies.
Posted 9/28/2021 8:04 PM (GMT 0)
Jayce has posted here a while back about her young adult daughter getting a Lupus scare while on biologics, in case you want to look up her threads. *** Wish you good luck in resolving this issue, and definitely take care to avoid ticks with insect repellent, etc. In U.S. ticks can cause other major infections besides Lyme; my neighbor's sister got Babesiosis from a tick bite while gardening in her backyard in NJ! She's a sharp lady who thought to capture the tick in a bottle, resulting in quick accurate DX for her that required immediate IV antibiotics infusion. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 10/2/2021 7:18 PM (GMT 0)

ks1905 said...
Will your insurance company cover a Remicade antibodies test? It might be worth a trying the test to rule out a reaction if you have antibodies.



Yes- they are planning on doing that when the net infusion is due.
Posted 10/2/2021 7:31 PM (GMT 0)

beave said...
What were your exact tests and results?

Positive ANA alone doesn't necessarily mean you have systemic lupus (SLE) or drug-induced lupus (d-ile).

There are several possible reasons for elevated ANAs, lupus or drug-induced lupus being only two of the many. Other autoimmune diseases are possible, as are viral infections, other medication reactions, etc. Further testing by your rheumatologist is warranted.

Thank you for the info. What other things could cause it to be elevated? What other tests should I be aware of? Not sure what to do. I am pretty sure they are going to want to stop the Remicade when the next infusion is due. Other there other tests they could do prior?

The two tests done were ANA- HEP -2 substrate and ANAAB by IFA s . Those were the postive ones The other tests done were AB to extractable Nuc AG eval S,--all negetive and DSDNA AB with reflex IGG s,
Posted 10/3/2021 1:56 AM (GMT 0)
How high were your positive ANA levels (usually reported in titers)?

Drug induced lupus usually has high ANA titers, plus positive anti-histone antibodies.

Systemic lupus (not drug-induced) usually has high ANA titers plus it often has positive anti-dsDNA antibodies.

But keep in mind that up to half of people who are on anti-TNFs can have positive ANA results, so those results alone don't mean you have lupus or drug-induced lupus.

Positive ANAs can also come from viruses, cancers, other medications, and other autoimmune diseases (rheumatoid arthritis, sjogren's, undifferentiated connective tissue disease, mixed connective tissue disease, scleroderma, and a few others).

Or they can be false positives, or just positive due to your use of an anti-TNF with no clinical significance.

You need to have the Remicade antibodies checked, then work with your gastro and a rheumatologist to figure this all out.
Posted 10/3/2021 4:47 PM (GMT 0)

beave said...
How high were your positive ANA levels (usually reported in titers)?

Drug induced lupus usually has high ANA titers, plus positive anti-histone antibodies.

Systemic lupus (not drug-induced) usually has high ANA titers plus it often has positive anti-dsDNA antibodies.

But keep in mind that up to half of people who are on anti-TNFs can have positive ANA results, so those results alone don't mean you have lupus or drug-induced lupus.

Positive ANAs can also come from viruses, cancers, other medications, and other autoimmune diseases (rheumatoid arthritis, sjogren's, undifferentiated connective tissue disease, mixed connective tissue disease, scleroderma, and a few others).

Or they can be false positives, or just positive due to your use of an anti-TNF with no clinical significance.

You need to have the Remicade antibodies checked, then work with your gastro and a rheumatologist to figure this all out.

I meet with my Dr this week with the plan of testing for antibodies. I did have a test about 3 years ago for RA and that was negative. I go to the Mayo Clinic in Eau Claire WI-- I would think/hope they would know what test. I am however very frustrated that it took them this long to take me seriously. This has been a big issue for me since this last March. They put me on Methotrexate with seeing if it was something else. Prednisone up to this point has been the only thing that has helped.
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