Med suggestion?

[Lhood08]

hi all-

I got diagnosed with a couple other autoimmune diseases recently and in addition to that, my early sjogrens panel just came back positive. They haven’t done any biopsies/scans, but the ss-a and SS-b were negative. I have super dry eyes and mouth along with fatigue and neuropathy. My doctor thinks i simply have a propensity toward SS, but I can’t imagine that I don’t have it with the symptoms I have. She offered me hydroxychloroquine anyway, but now I’m not convinced that it would help me? She didn’t really even explain exactly which symptoms it would relieve or how it would help. I know many people with SS are on it, but I don’t want to take a needless med (or avoid taking it if I do need it). Thoughts appreciated 🥰

[weathervane]

I started initially on hydroxychloroquine , it didn’t really make much difference, I was very low at this time with really enlarged lymph nodes , joint and muscle pain and fatigue. I was then started on rituximab which made such a difference to me , I was able to function again.

Everyone is different, I have read on HU of hydroxy working well for Sjögren’s, it depends on how severely your symptoms are affecting you.

[StriatedCaracara]

I have had super dry eyes and mouth on and off for about two years, also peripheral neuropathy.

You said an early Sjogren's panel came back positive but ss-a and ss-b were negative.

Just wondered what the other bloods you had done, on the early Sjogren's panel.

I have a strong positive Anti Nuclear Antibody result, got undifferentiated connective tissue disirder UCTD diagnosis because ENA was negative. Most of my symptoms are those of Lupus but that now requires positive specifiv bloods if not not nephritis.

Been on hydroxychloroquine two years and it has really helped.

Hope all goes well

[SusieW2]

I think for some that hydroxi... Is for diminishing long term issues. And I think there's a test that will show if it's making a difference. I've been taking it for many years but I had no negative side effects. I think there really isn't a treatment for SS only of its symptoms.

[Oscaromega]

I was diagnosed with primary sjorgens syndrome about 10 years ago and have been taking 200 mg Hydroxychloroquine daily since then. No ill effects although annual eye screening is essential.In the past year I've developed RA and given additional medication to help with worsening joint problems.

I asked my rheumatologist why I was continuing with Hydroxychloroquine - now increased to 300mg daily. Apparently, this has always been to mitigate the effects of the disease on my joints and is part of my disease management.

With best wishes.

Liz