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PMR Dosages and Managing Symptoms
Polymyalgia Rheumatica (PMR) | Last Active: Jul 27 8:00am | Replies (468)Comment receiving replies
Four weeks in I see no difference on Kevzara, although I have speeded up the prednisone taper to 1 mg every two weeks with no ill effects. Today I take my third 200 mg dose of Kevzara and reduce from 4 mg to 3 mg P. From what I read, reducing when at a low dose of P is where it gets tricky. Not surprising as the percentage decrease increases, i.e., 4 to 3 is a bigger drop than 10 to 9.
I will post again when I have news. Best wishes...to all of us.
Replies to "Four weeks in I see no difference on Kevzara, although I have speeded up the prednisone..."
Hi; I just had my 4th Kevzara injection yesterday and I am seeing a difference. All the literature says 2-3 months for Kevzara to be fully effective. At the same time I am down to 5mg of prednisone for the next two weeks, have my fifth dose of Kevzara on Dec 19 and move to 2.5 prednisone until I see doc on Jan 9. Plan is to come off prednisone entirely at that point since I will have had six doses of Kevzara and see what happens. If I have to stay on Kevzara for a period of time, so be it. Interestingly, it will be just short of 1 year since my diagnoses.
Good luck, Merry Christmas and Happy New Year.
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Will 3 mg be the lowest dose you have been on since the start of PMR?
How long have you been taking prednisone? What was your average dose during this time?
These questions are important because of how prednisone suppresses adrenal function and cortisol production. I took prednisone for 12 years so my doctors expected that I would have problems tapering off prednisone.
My tapering problems would begin at 10 mg and pain would get much worse at 7 mg. I couldn't tolerate being on 7 mg very long. I didn't think Actemra was working either for the first 3 months until I reached 7 mg. I was doing Actemra injections every 2 weeks back then. I didn't have an increase in pain as I was tapering from 10 mg to 7 mg --- I only tapered by 1 mg per month.
I wasn't liking Actemra and I was receiving negative feedback from another PMR forum about using Actemra for PMR. I increased my taper to 1 mg per week thinking I wanted to get the inevitable PMR flare over with in order to increase my prednisone dose again.
When I tapered by 1 mg per week, I felt unwell by the time I got to 3 mg. I told my rheumatologist who was surprised that I was on 3 mg already. My rheumatologist told me to stop the taper. My cortisol level was low so that explained the overwhelming fatigue I felt.
Long story ... but I had to stay on 3 mg for 6 months before my cortisol level improved.
An endocrinologist told me when it might be safe to stop prednisone --- it wasn't my rheumatologst. The two doctors did talk to each other. The endocrininologist said from an adrenal standpoint it might be safe. My rheumatologist wasn't so sure from a PMR standpoint but said I should give it a try and go to zero.
The reason we taper slowly in the first place is because prednisone suppresses the cortisol production from the adrenals. When we taper our prednisone dose lower, the adrenals need some time to resume cortisol production.
How much time the adrenals need is mostly related to the duration of prednisone use and the cumulative dose of prednisone over the time period prednisone was taken.