New PMR patient, wondering if mornings will become pain free someday

Posted by tedmbrady @tedmbrady, Sep 3, 2023

I am 69, fairly active, avid golfer, etc. After dealing with hip, hamstring and especially shoulder pain and extreme soreness I had my CRP measured a little more than a month ago (23.8) and was fairly quickly diagnosed by my GP as having PMR. I started with 15mg prednisone and after a week went to 20mg. This dosage allows me to play golf and be pain free (mostly) by midday. They referred me to a Rheumatologist whom I see on the 19th for the first time. I have a second blood test this Tuesday (5th).

Question: can I anticipate ever being pain free first thing in the morning (only shoulders hurt, but pain is not inconsequential)? Or is this an indication that maybe 20mgs is not yet enough? I realize I'm only 4-6 weeks into this, but other threads suggest the prednisone should be able to wipe this out for now (I realize it is with me forever and might rear its head in months or years, but hoping this first episode finally goes away for awhile).
Thx
Ted

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Many mornings I have initial stiffness only and it lessens by mid-morning or noon. Other days initial pain that lessens mid-morning or noon. I consider those days great! I can do pretty much anything I want - not like my pre-PMR days about a year and a half ago but I’m also a year and a half older (71 now).
By mid-afternoon I can be hiking or swimming or really pretty much anything I love.

REPLY
@bradninchgirl

It took me 4 1/2 years to recover and come off Prednisone. After that, I managed to reduced pain after adding CQo2 and Ensure to my diet. Don't quite understand why the last made a difference but it certainly did. I was so consumed by the effects of PMR I forgot to add in my age to it all. For the past year it's been being 79 years old that was the problem and when I started to treat myself accordingly life improved. Best of luck and good wishes. Keep trying and you will find an answer.

Jump to this post

@bradninchgirl

Curious what CQo2 is. Interesting about adding Ensure. Do you believe people approaching 80 should use it? My husband is 75 with PMR and GCA (giant cell arteritis) which is what brings me here. I'm always looking for ways to improve his chances of recovery from these awful illnesses.

REPLY
@kathyv66

I developed PMR at 61 but didn't get diagnosed and treated for almost 1.5 years (I thought it was age and being out of shape during covid). When I was treated with prednisone (20 mg) I had immediate relief. I reduced my prednisone steadily over the course of 1+ years but am currently stuck at 2mg after another 1+ years of trying to reduce my dosage periodically. I am however, pain free and CRP is normal.

Jump to this post

That's a fantastic result to be right down to 2mg prednisone after just over a year of reducing from 20mg. Well done.

REPLY
@megz

That's a fantastic result to be right down to 2mg prednisone after just over a year of reducing from 20mg. Well done.

Jump to this post

My post was a little confusing on the time period- I was at around 4mg after a year and then several attempts before I got to 2 mg after the 2nd year. I don't try if I am travelling or have other health issues happening because I don't want to confuse symptoms (eg I fractured my spine 3 months ago - so didn't want to try and reduce Prednisone while I was dealing with that). I find that when I start to experience side effects from withdrawal, it takes 6-8 weeks of increasing the dosage back to previous level before I feel back to normal. This time I am only experiencing fatigue - not pain, so I am optimistic.

REPLY
@kathyv66

My post was a little confusing on the time period- I was at around 4mg after a year and then several attempts before I got to 2 mg after the 2nd year. I don't try if I am travelling or have other health issues happening because I don't want to confuse symptoms (eg I fractured my spine 3 months ago - so didn't want to try and reduce Prednisone while I was dealing with that). I find that when I start to experience side effects from withdrawal, it takes 6-8 weeks of increasing the dosage back to previous level before I feel back to normal. This time I am only experiencing fatigue - not pain, so I am optimistic.

Jump to this post

Thanks for clarifying. That's an entirely sensible approach and still great progress.

REPLY

Hi Ted, I'm about your age, diagnosed with PMR about 3 years ago. My family doc started me on 15 mg of Prednisone initially until I could see a rheumatologist. I went from being barely able to walk with my upper body feeling like I was being worked over with a baseball bat to highly functional again. My first rheumatologist switched me to 30 mg and all was great. I've been reducing since then (now going from 12.5 to 10). I have achy mornings sometimes in my upper body but it's usually bearable. If it's not and it doesn't go away by the afternoon, I'll take some Advil. Best to you.

REPLY
@richardab

Hi Ted, I'm about your age, diagnosed with PMR about 3 years ago. My family doc started me on 15 mg of Prednisone initially until I could see a rheumatologist. I went from being barely able to walk with my upper body feeling like I was being worked over with a baseball bat to highly functional again. My first rheumatologist switched me to 30 mg and all was great. I've been reducing since then (now going from 12.5 to 10). I have achy mornings sometimes in my upper body but it's usually bearable. If it's not and it doesn't go away by the afternoon, I'll take some Advil. Best to you.

Jump to this post

My situation is similar to yours, but I use Tylenol.
NSAIDS (Advil, Aleve, ibuprofen, naproxen sodium) used with prednisone evidently substantially increase the risk of stomach ulcers and bleeding. Best of luck on the journey to pain-free.

REPLY

So here I am in May and the Methotrexate appears to have done nothing good. I was down to 4mg, very briefly, but could not function. I was back to 7mg, but still had pain in the early morning hours that got me awake. Going to 8mg today and starting hydroxychloroquine, the next adventure.

REPLY
@richardab

Hi Ted, I'm about your age, diagnosed with PMR about 3 years ago. My family doc started me on 15 mg of Prednisone initially until I could see a rheumatologist. I went from being barely able to walk with my upper body feeling like I was being worked over with a baseball bat to highly functional again. My first rheumatologist switched me to 30 mg and all was great. I've been reducing since then (now going from 12.5 to 10). I have achy mornings sometimes in my upper body but it's usually bearable. If it's not and it doesn't go away by the afternoon, I'll take some Advil. Best to you.

Jump to this post

@richardab
You mentioned you're taking Advil with Prednisone. Our doctor, who is also the Chief of Rheumatology, said my husband should not take any NSAIDs and the only thing he can take for pain is Tylenol. You might want to check with your rheumatologist. Evidently NSAIDs raise the risk of stomach ulcers and other issues.

REPLY

I would say what I call pain free when going on steroids is probably not zero pain. I was 69 when I got PMR. Trying to get a diagnosis I spent several months going to orthopedic Drs. Xrays, MRI. I have a slap tear in my right shoulder, I have some arthritis, some calcification. But both Dr said you look great for your age. You dont have anything wrong with you. They wrote some bursitis. If I would have gotten out of bed feeling like I do at 50 I may have thought I was about to die. I suffered with some pain to get off steroids. But I just held the course . About 10 days later it wasnt that bad. I was at 3mg and just stopped. 2 years later with no steroids I cant say pain free but more I have entered old age. But I call it PMR pain free.

REPLY
Please sign in or register to post a reply.