Is anybody with only APS on immunosuppressants?

[Calico]

I mentioned to my neurologist but she declined saying not necessary for Primary APS even though I continue to be symptomatic after high anticoagulation.

[KellyO]

I have primary APS. I took Hydroxychloroquine for 6 months, but it didn't help, so now I'm only taking blood thinners. Best of luck!

[Hilariew930]

I am on hydroxychloroquine and it has changed my life. Hope it keeps working this great!!

[Salty]

Hi,Calico, what symptoms are you still having on high dose warfarin? I am on lovenox and plavix which has taken away my migraines, occasional stuttering, blank spells in thinking and bone pain, but It hasn't taken away my autonomic nervous system dysfunction.

[Salty]

Oh and I do plaquenil,as well (for primary APS)

[jean48]

I wouldn't think you would need immunsuppressants unless there is damage progressing in an organ; For example I had an MRI and it was discovered thatI have some white matter damage. So my Rheumy is watching it by making me have repeated MRIs. Nothing has changed so he isn't treating it. However if some point the damage in my brain increases then I believe that I would be put on immunesuppressant I have primary APS.

Jean

[SueLovett]

The above mentioned medications are not immunosuppresents.

Steroids are sometimes used or chemotherapy drugs these suppress the immune system but come with consequences.

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