Polymyalgia rheumatica

Posted by barbararene @barbararene, Feb 13, 2017

I have been diagnosed w poly myalgia rheumatica (pmr). Am taking 5 mg of predisone, was taking 10mg.
Every time I go on a low dose, symptoms come back. I can’t take pain meds, but do drink wine to ease pain, although I’m told no alcohol w prednisone. Anything you can share as far as info

@grammlyn

Try getting some CBD. It should help with pain, inflammation, sleep and possible make it feel at least ok to eat. I finally did this and can't believe the difference. There is no "high" with this as there's no THC involved. But it really helps me. I ordered CBD + at Amazon. Dr Oz had a doctor on and they all think its ok. Of course I still have to use my Fluocinoide 0.05% Gel 2 x's a day for now. fIts not a cure but helps get thru a flare. Best of luck to you and all of us who suffer from this illness.

Jump to this post

What is the amount of CBD you take each day? I have some, but it has no recommended dosage

REPLY
@kdmorris

I had the same dilemma . I very slow tapered ,as you.
Had a little pain and stiffness that would crop up from time to time, but continued to taper. I am finally now off pred and if I'm a bit stiff, I'll take a celebrex or advil on occasion. Everyone seems to respond different.Best of luck to you.

Jump to this post

that is super great you are off prednisone, seems odd that it can take this long. I have dropped to 3.5 mg and going to stay there for a bit before lowering it again, as I find there is more stiffness each time I lower. thanks for your info!

REPLY

I have another question, while lowering the prednisone to 3.5MG I have noticed the boney bump at back of my neck is more noticeable, and the back of my neck hurts more. I am just wondering if anyone had more trouble with their neck while trying to lower prednisone,

REPLY

Just curious to know the reason for no wine with Prednisone.I am assuming it also means no alcohol .I am on Prednisone and drink wine with dinner
So far no issues in blood work or effectiveness

REPLY
@marilyncarkner

Just curious to know the reason for no wine with Prednisone.I am assuming it also means no alcohol .I am on Prednisone and drink wine with dinner
So far no issues in blood work or effectiveness

Jump to this post

Hi @marilyncarkner, this might provide a little insight…

Is it safe to drink alcohol while taking prednisone?
https://www.medicalnewstoday.com/articles/325112.php

REPLY
@marilyncarkner

Just curious to know the reason for no wine with Prednisone.I am assuming it also means no alcohol .I am on Prednisone and drink wine with dinner
So far no issues in blood work or effectiveness

Jump to this post

Good morning, @marilyncarkner . I’m also on prednisone but I’m hoping to taper off as the rituxan (I’m getting today) really starts working! If your on prednisone for a very short time, the doctor may agree that wine/alcohol is ok. For longer time treatment, wine and alcohol are not ok because they both suppress the immune system, can tip you over to type 2 diabetes, and can cause more osteoporosis. I’m not a doctor so I would suggest you have a discussion with your doctor. They know what’s really going on with you and can best advise. I stopped having wine almost 2years ago . It was hard at first but now I don’t really miss it. Wine with dinner really becomes part of life and a hard habit to break, doesn’t it? Will you talk with your doctor and get back to us? We care! Becky

REPLY

Regarding diagnostic blood tests: Does anyone know of PMR being diagnosed with 3x's normal C-reactive protein results and normal Sed Rate results? In February I started 15 mg prednisone and extreme pain in shoulders, arms, hands, hips and legs disappeared. I could barely move. The C-reactive protein rate dropped to the highest normal level. Dr. began lowering dose every month, and C-reactive protein began raising slightly. I'm now on 8 mg and symptoms began returning at 10mg and continue to get worse. Because the C-protein hovers just above normal, Dr now questions PMR diagnosis and insists I continue to taper even though symptoms are increasing. I read studies at PubMed that say 1-4% of PMR patients can have normal tests. Does anyone have thoughts on this?

REPLY
@sharync

Regarding diagnostic blood tests: Does anyone know of PMR being diagnosed with 3x's normal C-reactive protein results and normal Sed Rate results? In February I started 15 mg prednisone and extreme pain in shoulders, arms, hands, hips and legs disappeared. I could barely move. The C-reactive protein rate dropped to the highest normal level. Dr. began lowering dose every month, and C-reactive protein began raising slightly. I'm now on 8 mg and symptoms began returning at 10mg and continue to get worse. Because the C-protein hovers just above normal, Dr now questions PMR diagnosis and insists I continue to taper even though symptoms are increasing. I read studies at PubMed that say 1-4% of PMR patients can have normal tests. Does anyone have thoughts on this?

Jump to this post

Hi @sharync — Welcome to Connect. I have PMR but it's currently in remission. From what I read the C-reactive protein test is a little more sensitive than the Sed Rate test. Here's a good explanation:

Erythrocyte Sedimentation Rate and C-Reactive Protein: Old But Useful Biomarkers for Pain Treatment
https://www.practicalpainmanagement.com/treatments/erythrocyte-sedimentation-rate-c-reactive-protein-old-useful-biomarkers-pain-treatment

Is your doctor a rheumatologist? My rheumatologist started me on 20 mg prednisone and it took me about 3 years to taper off of prednisone the first occurrence and about 1-1/2 years the second time.

REPLY

I'm being seen by a Nurse Practitioner to a rheumatologist. When I told her of the PubMed studies, she wasn't aware and suggested I see the rheumatologist she works under, but can't get appt till October. I've considered getting a second opinion if I can get an appt with someone else. My main physician did other tests and ruled out Lupus and Fibromyalgia. Thanks for the article – will read now.

REPLY
@sharync

I'm being seen by a Nurse Practitioner to a rheumatologist. When I told her of the PubMed studies, she wasn't aware and suggested I see the rheumatologist she works under, but can't get appt till October. I've considered getting a second opinion if I can get an appt with someone else. My main physician did other tests and ruled out Lupus and Fibromyalgia. Thanks for the article – will read now.

Jump to this post

Hi. Was diagnosed June 2018. CRP and sed rate normal at every checkup. I understand 20% of pmr patients have normal readings. After one bad flare and too rapid prednisone tapering, I’m now on 12.5 mg. When taper starts from here, it’s going to be small increments and very slowly. Found there is a lot to learn about this disease . Wish you well.

REPLY

amom7, thanks for your info as it reassures me that I do have this weird condition, or that normal CPR might not mean that I don't. I think I need another opinion based on the PubMed studies and now your history. Does anyone know why taking Prednisone for an extended time causes PMR to eventually go away? I did know of one lady who was never able to completely stop Prednisone, however at a very low dose. I'm really frightened at following this NP's directions to continue weaning off at this rate. Anyway, thanks for replies.

REPLY
@sharync

amom7, thanks for your info as it reassures me that I do have this weird condition, or that normal CPR might not mean that I don't. I think I need another opinion based on the PubMed studies and now your history. Does anyone know why taking Prednisone for an extended time causes PMR to eventually go away? I did know of one lady who was never able to completely stop Prednisone, however at a very low dose. I'm really frightened at following this NP's directions to continue weaning off at this rate. Anyway, thanks for replies.

Jump to this post

My understanding is that prednisone only deals with the inflammation and the pmr goes away when it’s ready. My rheumatologist said I may be on pred for the rest of my life, but I am 80 yrs old. 😀

REPLY
@sharync

amom7, thanks for your info as it reassures me that I do have this weird condition, or that normal CPR might not mean that I don't. I think I need another opinion based on the PubMed studies and now your history. Does anyone know why taking Prednisone for an extended time causes PMR to eventually go away? I did know of one lady who was never able to completely stop Prednisone, however at a very low dose. I'm really frightened at following this NP's directions to continue weaning off at this rate. Anyway, thanks for replies.

Jump to this post

@sharync, I think it has to do with controlling the inflammation and each of us are different in how long it takes and the dosage needed to reduce or eliminate the symptoms. I have had two occurrences of PMR and the first time it took 3+ years to taper off of prednisone. The PMR went into remission for 6 years and then came back. The second time it took me 1-1/2 years to taper off of prednisone. I think diet and exercise can help control the symptoms and keep the PMR in remission but then that's just my non medical opinion. Here's some information that may give you some insight on how the drug works.

Polymyalgia Rheumatica: A Severe, Self-Limiting Disease
https://www.uspharmacist.com/article/polymyalgia-rheumatica-a-severe-self-limiting-disease

The correct prednisone starting dose in polymyalgia rheumatica is related to body weight but not to disease severity
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3114801/

I'm not sure I would be frightened to start tapering off of prednisone but I would have a discussion with my rheumatologist for any concerns I had on a tapering or weaning off schedule. I think most members will tell you that you have to listen to your body. It will tell you if you are tapering off too fast….the pain level starts getting worse. I would suggest that you keep a log of the dosage and a pain scale for how you feel each day. This will give you something to share with your rheumatologist and they may be able to share some suggestions.

REPLY
@sharync

Regarding diagnostic blood tests: Does anyone know of PMR being diagnosed with 3x's normal C-reactive protein results and normal Sed Rate results? In February I started 15 mg prednisone and extreme pain in shoulders, arms, hands, hips and legs disappeared. I could barely move. The C-reactive protein rate dropped to the highest normal level. Dr. began lowering dose every month, and C-reactive protein began raising slightly. I'm now on 8 mg and symptoms began returning at 10mg and continue to get worse. Because the C-protein hovers just above normal, Dr now questions PMR diagnosis and insists I continue to taper even though symptoms are increasing. I read studies at PubMed that say 1-4% of PMR patients can have normal tests. Does anyone have thoughts on this?

Jump to this post

I had the same experience with the test results and with my doctor's response to them. To make a long story short, I finally went to the Mayo Clinic in Jacksonville, FL. You are correct some PMR patients do NOT have normal tests. I was one of them. My dosage of prednisone was increased, and the pain went away.

Be your own advocate.

Keep researching and studying the disease.

REPLY
@sharync

amom7, thanks for your info as it reassures me that I do have this weird condition, or that normal CPR might not mean that I don't. I think I need another opinion based on the PubMed studies and now your history. Does anyone know why taking Prednisone for an extended time causes PMR to eventually go away? I did know of one lady who was never able to completely stop Prednisone, however at a very low dose. I'm really frightened at following this NP's directions to continue weaning off at this rate. Anyway, thanks for replies.

Jump to this post

I was told at the Mayo Clinic in Jacksonville, FL, that about 40% of PMR patients never go into remission. Unfortunately, at present I am one of them. Further, I learned that about 10% of PMR patients will not have elevated lab results for inflammation. Unfortunately, I am in that category as well. Currently, I am on 12 mg of prednisone. The pain came back (difficulty in standing especially) when the dosage was dropped to 11 mg. I went back to the 12 mg, and I will next try dropping to 11.5 mg for a month and see if I can then drop to 11 mg. At this point, a dosage of 5 mg is looking good! Hope springs eternal . . .

REPLY
Please login or register to post a reply.