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Has anyone else had pain return after reducing pred by only 2.5 mg?
Polymyalgia Rheumatica (PMR) | Last Active: Oct 24, 2023 | Replies (53)Comment receiving replies
@charlotte61 Hello ! In contrast to what you are reporting I've been able to taper from 30 mg to almost 7 mg in 5 months. When you say "doctor", are you seeing a rheumatologist ? Do you take your dose only one time per day - there are many people in this group who swear by the split-dose myself included! .
It is 2023 ! 1) Sparing you from steroids, because of your osteroporosis is likely to be a priority I would think : ). This is an informative web site : https://www.pmrandil6.com/standard-of-care/
I have posted this site many times - are you aware of the approval of Kevzara ( anti-IL-6 receptor? )
2) I have been looking over the abstracts for the upcoming Rheumatology meeting and there are a few abstracts discussing the need for better patient management re: Glucocorticoids( i'll attach my list ).
So stay positive ! I hope you'll have a successful tapering plan soon !
But - another suggestion- are you keeping a pain journal of some kind ? An excel spreadsheet that has dose mg/day and pain level score ( 1 to 10 ) -i divided into hips vs shoulders and even morning vs afternoon. It was quite complicated at first ,prior to "optimal" dose of prednisone, which i might add included INCREASING from 20mg to 30mg because of a terrible flare up.
Replies to "@charlotte61 Hello ! In contrast to what you are reporting I've been able to taper from..."
Thank-you for the information about the 2023 ARC meeting.
The 7 mg dose is a hard dose to get past for many people. Otherwise, I agree it is possible to taper as quickly as you have. I have other autoimmune disorders notably reactive arthritis and uveitis in addition to PMR. I would often taper from 60 mg to zero in a couple of months to treat uveitis and reactive arthritis.
PMR complicated things after it was diagnosed. I needed 40 mg of prednisone to start with and was still taking 30 mg after 5 years and 20 mg after 10 years. I had many medical complications likely caused by long term prednisone use.
Sometimes I was able to reduce my prednisone dose to under 10 mg after 12 years of PMR but never less than 7 mg. I flared every time when I was on 7 mg or at least my symptoms worsened dramatically.
Actemra changed everything for me. I went from 10 mg to 3 mg in four months. My rheumatologist thought I should stay on 3 mg until I could be evaluated by an endocrinologist for adrenal insufficiency. My cortisol level was low so I needed to stay on 3 mg for 6 months. Since cortisol plays a significant role in regulating inflammation, I think my low cortisol level was causing flares whenever my prednisone dose was too low. Actemra prevented the inflammation from recurring and allowed me to reduce my prednisone dose to 3 mg. However, I had to give my adrenals time to recover while I stayed on a low dose of prednisone.
It was my endocrinologist who gave me clearance to discontinue prednisone when my cortisol level was "adequate." I was off prednisone for a few days while still doing Actemra injections when I had a flare of panuveitis.
https://rarediseases.info.nih.gov/diseases/8577/panuveitis
I needed 60 mg of prednisone again.
Actemra was stopped and Humira was used to treat uveitis. I was able to taper quickly down to 15 mg of prednisone again except my PMR symptoms returned so Humira was stopped and Actemra was restarted.
The frequency of my Actemra injections was increased but now I do a monthly infusion. A monthly infusion works the best for me. None of my autoimmune conditions have flared up doing an infusion of Actemra monthly.
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Hi nyxygirl. Thanks for the all the great info! It's amazing that you've been able to taper so much in such a short period! I think your experience is the exception to the norm. I don't have a rheumatologist. I'm working with my GP and my naturopath. I would probably have to wait months to see a rheumatologist.
I take my full dose of pred in the morning because I don't want it to interfere with my sleep. I am trying to go down by 1 mg/month and see how that goes even though it will take forever. I haven't heard of Kevzara, but if it looks like I'm going to be stuck on prednisone for a long time, I'll ask my doctor about alternatives. Of course, much depends on cost. I don't have any health coverage, so if the new meds are exorbitantly expensive I may not be able to afford them!