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PMR Dosages and Managing Symptoms

Polymyalgia Rheumatica (PMR) | Last Active: Jul 27 8:00am | Replies (468)

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@walkamok

It is very interesting to read these varied medication stories. I might as well add mine to the mix.

PMR came down like a hammer a year ago. It took the doc a few weeks to come up with a diagnosis. I do remember that the pre-diagnosis prescription (treating the symptom) was for tramadol, which had no effect.

Blood work revealed the culprit. I do not recall the initial dose of prednisone (aka "devil's tic-tacs"), but it may have been 30 mg. Anyway, I took the first dose about suppertime, basically totally disabled, and woke up 12 hours later symptom-free. It felt like a miracle.

The taper followed. The rheumatologist prescribed a single dose, but circumstances quickly had me move to the split dose, settling after experimentation on a much smaller evening dose. The only two flare-ups I have had to date have been when I tried the single dose (at the urging of the rheumatologist). Won't go down that road again.

It has been hard for me to sort out what is PMR pain and what is normal old man (73 yrs) stuff. I thought for a long time that hip pain in the inner hip was due to PMR but the rheumatologist pointed out that the inner hip (groin) is not characteristically a PMR issue. Sure enough, some PT cured it. At present the worst symptom, which may or may not be related to fluid retention caused by long term prednisone, is carpal tunnel syndrome in my dominant hand. Seeing a hand specialist soon to talk this over.

At present I am at 4 mg, 3 in the AM and 1 at bedtime. My next taper happens tomorrow, and I will go to 2.5 mg in the AM and 0.5 in the PM.

I have also been on Kevzara for four weeks, injecting myself every two weeks with a 200 mg dose. I have not seen any blood work since starting this med. At the time I first took it the PMR markers were rising slightly.

There is nothing straightforward about this condition. We are all fortunate that we do have an effective treatment for it, albeit one that comes with its own problems. To live with this malady without any effective means of treatment is almost unimaginable. I wish each of you luck in finding the path that is best for YOU!

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Replies to "It is very interesting to read these varied medication stories. I might as well add mine..."

I liked your story! I hope Kevzara will work for you.

I wanted to add something about inflammation markers or PMR markers as you say. When I started Actemra (tocilizumab) about 4 years ago my inflammation markers "bottomed out." Kevzara will probably cause your inflammation markers to drop too. Actemra and Kevzara both target the same inflammation pathway.

Due to the blockade of IL‐6 signalling, Actemra (tocilizumab) inhibits the hepatic production of C‐reactive protein (CRP) and other acute phase proteins like the erythrocyte sedimentation rate (ESR). This is true for Actemra (tocilizumab) and I assume it is true for Kevzara.

My inflammation markers were always elevated when I took prednisone. After Actemra was started my inflammation markers were close to zero. I was concerned because I had never seen my inflammation markers so low. I was so concerned that I asked my doctor if my inflammation markers were too low!

Actemra interrupts the production of C Reactive Protein (CRP) so it is no longer a reliable measure of disease activity. This was learned from patients with RA who were treated with Actemra.
https://acrabstracts.org/abstract/ultrasound-is-more-reliable-than-inflammatory-parameters-esr-and-crp-to-evaluate-disease-activity-in-rheumatoid-arthritis-patients-on-tocilizumab-therapy/
Another thing to be aware of --- if you have an active infection your CRP and ESR will stay low too. Potentially a doctor could overlook the possibility of an infection when you are on Kevzara or Actemra.

Please keep us updated as to the Kevzara.

Nicely said. Liked your comment about trying to distinguish "old man pain" from PMR or other actual conditions -- many will identify with that. I am happily tapering from 25 mgs of prednisone downward on a very slow year-long plan that (knock on wood) appears to be working well, with only very slight wrist and arm discomfort to date. Had wonderful success splitting doses morning and evening, something prompted by discussion on this site, which I am very grateful to have available. Best holiday wishes to all.