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I keep relapsing when I try to get off prednisone
Polymyalgia Rheumatica (PMR) | Last Active: Jul 11 12:42pm | Replies (82)Comment receiving replies
Pmr is such a dilemma. In my 6th year.
Original dose was 20mg. Easily got below 10. My tapering issues seem to be inflammation problems that may not be pmr. Early in May I was told to do 7.5mg prednisone for a month, reduce to 5 mg and stay at 5mg until Aug appt. I got to 5mg with no problem. My crp had been elevated. Since March I've been dealing with insertional Achilles tendonitis. HLA-B27 test was neg. I have been using a heel pad and gone to P T and still icing. My heel is still hurting. I have Haglunds deformity from the tendon rubbing, excess bone forms, also a spur. Recently read that pseudogout/cppd can affect the Achilles tendon. My hand xrays suggest cppd arthropathy. Maybe that's the problem.
I have passed on methotrexate. Hydroxychloroquine and Kevzara were suggested. I think I am to pick one by August. Hydroxychloroquine can cause retina problems and I already have macular dystrophy/vitelliform lesions so I think that's a 'no'. Insurance will be an obstacle for Kevzara.
Right now I have no hip or shoulder problems. Tapering seems to affect hands or now my heel.
My June Crp was normal. Jan,feb,march, april, May mildly elevated according to rheum.
I was having muscle aching in the back of my thighs. I stopped taking the Zetia med I was taking instead of statins but it can cause the same muscle issues. Not sure now if increasing pred or stopping zetia was responsible for the leg pain disappearing.
Seems like taking any med leaves you vulnerable to an undesirable side effect - at least in my case. Hurdle after hurdle.
Seeing my pcp tomorrow. Pcp and rheum had a difference of opinion of whether or not I should get a Reclast infusion after my last bone density test. Will discuss it again.
Replies to "Pmr is such a dilemma. In my 6th year. Original dose was 20mg. Easily got below..."
bones. I have osteoporosis. And had it before prednisone. Now have been on prednisone for 7 years. my spine got to -3.5 and for the last 2 years I have been doing heel drops (google ..you just go up on toes and clunk heels to floor not so so hard just a little shock effect) and my last DEXA shows -2.7 which is almost back to osteopenia!! NO meds for osteoporosis. So it can be improved naturally. I have the same flaring problem. get below 2mg. and PMR pain comes back. seeing a rheumatologist in 2 weeks. Not sure what to do. but hoping all will be better. My hips stayed the same on the new dexa. -2.1 around there. Anyway just thought you might be interested.
I am hoping to stay will low prednisone rather than try the new drugs. devil you know and all. but will stay open to what doc says.
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Why will insurance be an obstacle for Kevzara? Other than Kevzara, I don't know of any other biologic that is FDA approved for PMR. There are programs that help with the cost.
https://www.kevzara.com/starting-kevzara/kevzaraconnect-copay-card/apply-for-copaycard
No guarantees that Kevzara will work but it is worth a try in my opinion.
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Depending on the type spondyloarthritis you may have, there are other options available. I'm not saying you have spondyloarthritis but I can certainly relate to the dilemma about treatment options that are available to you.
I had a long history of reactive arthritis with uveitis prior to being diagnosed with PMR many years later. I was HLA-B27 positive but that didn't matter when my rhematologist diagnosed PMR in addition to spondyloarthritis. For some reason PMR took precedence. Long term Prednisone was my best and only option at the time because I was diagnosed with PMR more than 15 years ago.
Prednisone daily prevented flares of uveitis after I was diagnosed with PMR. I'm not sure if reactive arthritis symptoms were controlled. My flares of reactive arthritis were hard to distinguish from PMR flares. It doesn't really matter where it hurts when it hurts everywhere. Having a combination of multiple autoimmune disorders makes it very complicated and difficult to treat.
I got off Prednisone when Actemra (tocilizumab) was used to treat PMR. My ophthalmologist said Actemra wasn't optimal treatment for uveitis. I had a flare of uveitis as soon as I tapered off prednisone the first time. My ophthalmologist would rather I be on a TNF inbitor. I tried Humira but it didn't seem to work well for PMR.