I keep relapsing when I try to get off prednisone

15mg

Kevzara has been a game changer for me, too. Although it usually takes a few months to build up amd be effective, I had great relief from the 1st injection. Total game changer.

I am 3 1/2 years and no solution. Now trying to change from dexamethasone 4 week trial and back to prednisone probably 10 to 12 again for prednisone. Dexamethasone caused increase o f cataract pressure. All suggestions welcome

I posted about adrenal insufficiency earlier this week on another comment. You might need to consider that is a portion of your problem. It can cause systemic pain when titrating down off the prednisone that could be confused with PMR pain. Waking up your adrenal glands is a major portion of the steroid triturating process. Adrenal insufficiency can be identified/eliminated via blood tests. Talk with your PCP or Endochronogist about eliminating this as a contributing cause for the steroid titrating problem.
When I titrated down I started dropping by only half a mg once I hit below 5mg. So I would move from 5mg to 4.5mg then to 4, etc. It was not easy, but I was successful. Dropping from 5 to 4 is a 20% drop whereas 5 to 4.5 drop is only 10%.

Here is a short Mayo Clinic article on Adrenal Insufficiency https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-understanding-adrenal-insufficiency/

my ins won't cover Kevzara. Has anyone tried Symboni injection. I am in real agony here. Please help. I am on 5mg Prednisone.

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.

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.

The copay for Kevzara is high and we have never seemed to qualify for any kind of assistance for anything ever not that we're wealthy so I am not optimistic at all about Kevzara. I am really trying to just get off the pred and live wth a tolerable pain level.

I was able to get Kevzara paid for. When I contacted Kevzara Connect I asked about required income to qualify. The woman said they are targeting people with incomes from 35,000 to 75,000 though she initially said 100,000. They did not ask for my income but another poster who asked was told that they do a credit check. I imagine that credit bureaus have a good idea of income and sell that information. My copay would have been 300/mo , which is substantial but if the drug continues to help and the drug company no longer pays I will probably come up with the $$.

Thanks for your input. At this point I'm going to hope a looong slooow taper will work.