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Significant Side Affects Necessitated Faster Taper
Has anyone experienced significant brain fog, concentration, forgetting and other mental health issues? It was impacting my life in significant ways. My Rheumatologist listened and we decided on faster taper. I was on 3 mg. Today started 2.5 mg for 5 days then reduce 0.5 mg every 5 days. Concerned I was at 2 mg last week and had to be bumped up. The results ACTH was normal and CPR 1 point off normal even though sed rate was same as when diagnosed in January. Has anyone else have this experience? I want to get off this crap so I can function mentally again.
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You may experience flare of symptoms with rapid taper.
You could discuss a check on your IL-6 level if you flare.
Actemra, methotrexate and hydroxychloroquine are other otions.
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3 ReactionsIf you’re speaking about prednisone, yes! I’ve discussed these awful symptoms way too often. All I hear is will get you off it ASAP I’m also on Actemra infusions every 4 weeks. He said eventually the Actenra will take over from the steroid. 🙏
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1 Reaction@seniormed Are you off of prednisone?
@aflik Are you off prednisone? Does anyone get off this horrible medication?
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1 ReactionI tapered off prednisone gradually over 11 months with early symptoms control. 6 months after PMR developed
psoriatic arthritis and now on Humira for 2 years.
I found DHEA supplements helpful tapering. Be aware of cardiac risk factors. My cardiologist put me on statins for systemic inflammatory disease.
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1 Reaction@dswilson913 I was off for approx 6 months after a long taper and the Actemra infusion went from 4 to 6 weeks. I felt a lot better with less pain, fatigue and much better focus and concentration. Then it all came back with a vengeance. Went back on Prednisone and 4 week intervals of Actemra. My Rheumatologist felt that pushing out the Actemra from 4 to 6 weeks after stopping Prednisone caused the relapse.
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3 Reactions@aflik
I’m on prednisone, methotrexate, and started Actemra infusions every 4 weeks. Were you on all 3 meds? When do I get to infusion only?
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1 Reaction@gailcha no, only Prednisone and Actemra infusions every 4 weeks.
@gailcha I was only on Pred. and Actemra. From what I’ve learned, Actemra will replace Pred when you’re ready. Your Rheumatologist will know when the time is right.
I finally met with my rheumatologist, and he's also suspicious this might be RA. He also says he's had no success in getting Medicaid to pay for actemra. How are you getting actemra?