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Seronegative spondyloarthropathy

Posted by laurelhighlander @lairelhighlander, May 4 5:07am

Has anyone else been diagnosed with Seronegative spondyloarthropathy?
They have me on Methotrexate, 4th week. 1-2 days after taking it, feel miserable. Then feel ok. Then feel awful again before i intake it again...
So, roughly days a week I feel good. On my good days, hips feel great, shoulders "tired". On bad days, all major joints hurt...

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pm56 | @pm56 | May 17 6:43pm
In reply to @altabiznet "@pm56 Did Ruxience work for your arthritis? Please share your experience - response to treatment and..." + (show)
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@pm56

Did Ruxience work for your arthritis?
Please share your experience - response to treatment and side effects. Thank you

Jump to this post

@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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Alta Net | @altabiznet | May 17 7:23pm
In reply to @pm56 "@altabiznet I tried it back around Covid and when I tried to taper, it didn't seemed..." + (show)
Profile picture for pm56 @pm56

@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.

Jump to this post

@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.

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pm56 | @pm56 | May 17 8:27pm
In reply to @altabiznet "@pm56 For how long did fatigue last after your first and second Ruxience infusions? Are you..." + (show)
Profile picture for Alta Net @altabiznet

@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.

Jump to this post

@altabiznet very little fatigue after the first loading dose. More fatigue after the second - but I just got bloodwork back and it looks like I may be a little anemic so I’m not sure if I’m tired from the infusion or if I need more iron. I only had my second dose last Wednesday so it’s only 4 days ago.

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laurelhighlander | @lairelhighlander | 6 days ago

Take methotrexate on Tuesdays
Didn't have any issues til Sunday and today. Feels like my shoulders are gonna explode, can't raise R arm much past 45 degrees. Elbow killing me.
Right knee (good one) hurts more than the damaged one I'm doing PT on...

Thought it was supposed to get better.... Or the methotrexate isn't working for me 😕

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