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Seronegative spondyloarthropathy

Autoimmune Diseases | Last Active: May 18 8:53am | Replies (14)

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@altabiznet I tried it back around Covid and when I tried to taper, it didn't seemed to have worked, but it turns out I have adrenal insufficiency and steroid myopathy now - so it's unclear whether it *really didn't work* - or whether these other things were in play, so I was willing to try it again. I've just had my two loading doses. No serious side effects, just a lot of fatigue this time around that I don't remember the first time - but I am also sicker and dealing with more issues, so I am being patient and giving myself more time to get things done. I drank plenty of water before, during and after so I haven't had any headaches or anything and no nausea. The first time around I was given Zyrtec which makes me tired and sleepy, so on the second dose I declined and I felt better, as I need a walker so I felt like the Zyrtec made me more uncoordinated and I'm already enough of a fall risk. Without the Zyrtec I did fine.

It takes at least 6 weeks before a patient typically feels much different with the most benefit coming after 3 months, so at 2 weeks in, it's too early to tell. I got blood work back and it's definitely working as I only have 3 B cells left! I am hoping this helps but they are also working on getting me switched from IVIg to SCIg. I just had my onboarding call so now we're waiting for everything to be submitted for pre-authorization.

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Replies to "@altabiznet I tried it back around Covid and when I tried to taper, it didn't seemed..."

@pm56
For how long did fatigue last after your first and second Ruxience infusions? Are you feeling less tired now, 2 weeks after the infusions?
Thank you for sharing.