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New PMR patient, wondering if mornings will become pain free someday
Polymyalgia Rheumatica (PMR) | Last Active: Jun 1 11:10am | Replies (120)Comment receiving replies
@jrp11948 and @321design -- good morning -- may I ask - are you in a Groundhog Day loop ? each morning you wake up with stiffness , take your Prednisone, feel a little better and then start all over again the next morning? That is what I wanted to put an end to --and so my dose was increased to 30mg from 20mg ( the rheumatologist's plan) with a split dose- resulted in the miraculous relief for the PMR morning pain and stiffness after experiencing a terrible flare up.
You might be interested to read the descriptions of PMR pain and stiffness in the attached paper- I know I did !
And - the description of the "classes" of patients and and how they respond to Prednisone is in this Muller paper ( 2020) with a follow up in 2022. The concern is predicting who will relapse ....... the graphs are difficult to interpret at first. The tapering of prednisone can be gleaned from the table(s), it was quite slow in this study according to my calculations.
My journey started a year ago- ( shout out to all the PMR connections I have "met" here) - I have tapered to 3mg/day - woo hoo !! knock wood - I think I am a cluster 4 patient : Rapid and sustained recovery
In addition, this thread started long ago , so I can't quite tell when you each were Dx w PMR - have you looked at this site : https://www.pmrandil6.com ?? scroll over to the resources Tab and down and find the videos.
@jrp11948 I had to look up Plaquenil : this is from the ACR site : Hydroxychloroquine (Plaquenil) is a disease-modifying anti-rheumatic drug (DMARD). It can decrease the pain and swelling of arthritis which can prevent joint damage leading to long-term disability. Hydroxychloroquine is in a class of medications that was first used to prevent and treat malaria but today is the standard drug in lupus. It can be used in many other autoimmune diseases. It is not fully clear of its mechanism of action, but the current thought is that it interferes with communication in the immune system.
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Kinda Ground Hog ish. Some days are better than others, but I feel fortunate that I’m only 3months in to this. My doc says I’m in remission,but I’m not so sure. My blood work is basically back to where it was before the onset. The two weeks before I was diagnosed, was pure hell. Couldn’t Get up in the morning, couldn’t comb my hair or get dressed, walked like I was 100. It would ease in the afternoon. With Prednisone it was almost instantaneous relief and only on 10 mg. After a week I had to jump it to 15, I’m now down to 9mg. But, and this is huge for me, Prequenil. We added that about3 weeks ago and the pain in the morning is minimal. It takes a while to build up in the system, where’s prednisone is only good for a day. I forgot the Plaquenil on day and hurt all day, not going to do that again.
I talked to one lady that has RA and she’s been on it for 15 years! My doc says it the safest thing out there, little side effects, but docs don’t use it much anymore because the drug companies are pushing the newer more expensive stuff.
If there is one side effect that I’ve noticed is the muscle wasting. I’m weaker and any weight training I do doesn’t seem to make much difference. So I’m still doing it, because I’m such a macho 76 year old, haha, mainly psychological.
So good luck to you, my Primary Care Physician says it’s a 1 1/2 to 2 year course and it will burn itself out. However on this site there are individuals that are going on 10 years or more. We’re certainly all different!