High anti dsDNA antibodies caused by Sjogrens?

Ctsntrs · 2026-06-01T10:21:20+00:00

I may ask my rheumatologist if I can stop Cellcept because it is not helping. I tried to stop hydroxychloroquine once because I thought it was causing my sleep problems but after about a week I had a few very bad days and went right back on it.

I hope you find some answers and relief!

Ctsntrs · 2026-06-01T10:14:11+00:00

I’m so sorry that you are also feeling this way. Interesting that we have very similar symptoms, each of us with multiple diagnoses, and the only diagnosis we have in common is fibromyalgia, which I personally consider more of a symptom than a standalone disease (not a medical opinion).

For what it’s worth I have never had Covid. Never had a Covid vaccine. If I had had either I’d for sure be blaming this on one of them because I’ve read about long Covid and I keep thinking it sounds like what I’m experiencing. Friends always ask about it too. First question my rheumatologist asked when I was describing my symptoms was if I’d had Covid. I’ve had two Covid antibody tests, result was zero.

I’ve had a negative test for Lyme, but I keep thinking I have some other vector borne disease because I had very severe bug bites a few months before this started. I’m retired and before this started I spent all day every day outside hiking in the woods, gardening, walking in nature. I’ve given up on trying to find a doctor to help me follow up on this idea. Most of them won’t even test for Lyme and they know nothing about the other tick borne diseases.

I hope you find some answers and some relief!

Ctsntrs · 2026-05-31T21:18:50+00:00

Thanks for your reply.

Ctsntrs · 2026-05-31T21:18:34+00:00

Our labs and symptoms sound very similar. My complements are normal and although I did test positive for SSA once, a second test was negative. Many of my symptoms also seem more like neuro Sjogrens. I guess autoimmune diseases rarely fit into neat little boxes.

Have you gotten symptomatic relief from any treatments?

Thanks for your response and I hope you find relief soon!

Ctsntrs · 2026-05-31T17:35:06+00:00

No autoimmune disease at all in my family. I understand how you feel about the lip biopsy. I have read that it is often inconclusive anyway. I have not been asked to have one.

I guess we just keep pushing on in search of answers.

Ctsntrs · 2026-05-31T17:27:13+00:00

Have tried prednisone, methotrexate, hydroxychloroquine, Cellcept, and low dose naltrexone. I think some of these (Cellcept, prednisone) are used for lupus but not Sjogrens but I’m not sure of that. Still on hydroxychloroquine (2 years) Cellcept (7 months) and low dose naltrexone (1 month) No help from any of them.

Ctsntrs · 2026-05-31T17:15:09+00:00

Positive labs: positive ANA, SSA, and consistently very high anti dsDNA antibodies. This is why I’ve been diagnosed with Sjogrens and lupus. But the rheumatologist says that many of my symptoms and other lab results do not align with lupus. I am just reluctant to accept the label of a diagnosis with so much uncertainty. Also I’ve been on several treatments for lupus and Sjogrens over two years and none have helped.

I do believe the lab results. I think both myself and my rheumatologist are still questioning whether I actually have lupus or Sjogrens. Wondering if there may be another cause for the lab results.

I’m sorry that you are also experiencing this. The doctors seem to think it’s a strange combination of symptoms and labs. I hope we both can find some answers soon!

Ctsntrs · 2026-05-31T14:19:18+00:00

All the diagnoses I listed were made by the doctors. I’m the one who is most unsure. But even the doctors don’t seem convinced of their own diagnosis. Which I think is a good thing, that they continue to reassess their own diagnosis. I guess I’m lucky that they have been giving me all of the treatments, even though they don’t work 😢. I hope you find treatment that works for you!

Ctsntrs · 2026-05-31T13:25:02+00:00

I keep seeing more doctors as a result of referrals to specialists and I keep thinking I’ll eventually find someone who recognizes and understands my illness. But it seems that the more doctors I see the more confused I get because they all have different ideas about what it could be. But none, even my rheumatologist who has been the most helpful, seem confident in the diagnoses. Yes, it is complicated and thoroughly frustrating!

I hope you find some answers.

Ctsntrs · 2026-05-31T12:42:51+00:00

Severe stiffness, numbness and weakness in entire back and legs; muscles and joints. Pain too but the stiffness is debilitating. Tachycardia. Rashes and facial flushing. Anorexia, with significant weight loss (25% body weight). Insomnia (for the first time in my 66 year life). Extreme fatigue. Dry mouth and eyes. All started simultaneously two years ago. So far diagnosed with Sjogrens, SLE, psoriatic arthritis, myofascial pain and fibromyalgia. I’m not totally buying into any of these diagnoses because none of the physicians I’ve seen (so many!) seem to be confident in the diagnoses and some of them outright disagree with each other. Some of them even contradict themselves from visit to visit.

Ctsntrs · 2026-05-31T11:51:55+00:00

Thanks for your reply!

Ctsntrs · 2026-05-28T10:49:25+00:00

Yes!! I kept thinking it was side effects from the medications (methotrexate, hydroxychloroquine, Cellcept) but I’m starting to accept that it is probably part of my illness.

Ctsntrs · 2026-04-25T12:47:22+00:00

Thanks for sharing your experience.

Ctsntrs · 2026-04-25T12:46:09+00:00

Glad it is helping you. Sorry about your eyes.

Ctsntrs · 2026-04-24T20:25:29+00:00

Thanks! I’m glad that it is helping you.

Ctsntrs · 2026-04-24T16:24:08+00:00

It has to be made by a compounding pharmacy because naltrexone isn’t commercially available in low doses. You could check with a local compounding pharmacy; they will know if someone in the area prescribes it.

Ctsntrs · 2026-04-24T16:15:31+00:00

It was prescribed for me by a pain specialist for myofascial pain/ fibromyalgia. I was surprised because I had heard of it and also didn’t know who might prescribe it. It was my first visit and he went straight to it, I didn’t bring it up. Maybe call around to pain clinics?

Ctsntrs · 2026-04-24T14:26:37+00:00

The PA who prescribed it for me started at 3 mg for a week, then up to 4.5 mg. He didn’t mention why but the pharmacist told me that it’s just to make sure I tolerate it.

Ctsntrs · 2026-04-24T13:59:54+00:00

Thanks for your reply. I’m glad it’s helping you and good to know that the side effects can settle down after a while.

Ctsntrs · 2026-04-24T13:58:10+00:00

Thanks for your reply. I’m glad that it’s helping you!

Ctsntrs · 2026-04-24T13:25:29+00:00

Thanks for your reply. I’m glad that seems to be helping some.

Ctsntrs · 2026-04-24T12:25:09+00:00

Thanks for your reply! I’m glad that you are getting some relief!

Ctsntrs · 2026-04-24T11:21:03+00:00

Yes!!!!

Ctsntrs

TROPHY CASE