Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

@ingekunga, A collagen peptide supplement may help with the skin and hair side effects. My wife and I both take a tablespoon mixed with water or any beverage daily. It dissolves easily and is tasteless. It has fixed the brittle fingernails for both of us and is also good for skin, joints and hair. I would discuss it with your doctor first. I was on prednisone for 3-1/2 years the first round with PMR and 1-1/2 years the second time around. I was always concerned with my skin being thin and easily bruised.

Here's some more information:
Daily oral supplementation with collagen peptides combined with vitamins and other bioactive compounds improves skin elasticity and has a beneficial effect on joint and general wellbeing: https://www.sciencedirect.com/science/article/abs/pii/S0271531717311508

I’ve had a flare up and am trying to start at 15 mg of prednisone this time. However, just like last time, my thumb (large joints) are extremely painful and weak. Has anyone else had pain in the thumb/ wrist joint?

@ingekunga, A collagen peptide supplement may help with the skin and hair side effects. My wife and I both take a tablespoon mixed with water or any beverage daily. It dissolves easily and is tasteless. It has fixed the brittle fingernails for both of us and is also good for skin, joints and hair. I would discuss it with your doctor first. I was on prednisone for 3-1/2 years the first round with PMR and 1-1/2 years the second time around. I was always concerned with my skin being thin and easily bruised.

Here's some more information:
Daily oral supplementation with collagen peptides combined with vitamins and other bioactive compounds improves skin elasticity and has a beneficial effect on joint and general wellbeing: https://www.sciencedirect.com/science/article/abs/pii/S0271531717311508

At the risk of repeating my story I will carry on.
Five years ago dignosed withGPA which evolved into PMR.
Happily down to 3mg pred with only some lingering left piriformus pain and arthritic right knee slowing me down. 75 year old male playing golf couple of times a week and walking the course.
Then came MODERNA one month ago, 11th March'21
Next day I had a clear flare up in both area. It only got worse for a week and I didn't even imagine that the vaccine was a factor. The pains were worse than even when I was diagnose. Walking became a real problem. Then the penny dropped.
I am convinced the vaccine has got to me. I tried to call my rheum. doctor but no contact so I upped the Pred to 10mg. for 2 days.This cleared my pain.
Then I contacted the doctor and she said 5mg/day.
This has not improved my pain. She said better take Tylenol than Pred. Well I agree but Tylenol doesn't work I'm afraid.
So I have tried 9mg for the last few days. Still no good.
In Canada we are told the next jab is 4 months after the first.
My dilemma is, although I am determined to get the Second shot, I don't want to arrive for my shot with a elevated dose of prednisone in me. The nurses will not be pleased I am sure.
The MODERNA will not be as effective as it might be, so I'm told.
Also the after effects might be worse than after the first shot.
So in summary, I am convinced the mRNA vaccines for patients with Polymyalgia Rheumatica are problematic.
I see quite a lot of people on this and other sites who are suffering. Some people with new PMR diagnosis, some with PMR in retreat and some like myself who were doing fine on a low dose.
I admit to being a bit worried and confused.

.

My first Moderna vac 1/22/21 initiated me to PMR. I was diagnosed within a couple weeks. So the connection to the vaccine seems obvious. In researching, I found articles that suggested a connection between PMR and vaccinations or viruses acting as triggers. Looks like a Bingo.
Back in Feb. my GP and my Rheumatologist couldn’t say whether it would be appropriate for me to get the second Moderna dose due in late Feb, so I have waited. On my second visit with my Rheumatologist last week, he suggested I go for the second shot. He speculates that the prednisone I am taking may protect me from a kicked up inflammation by the Covid vax? Note: I am still dealing with this initial exacerbation and trying to reduce my pred from my current 20 mg (started at 40mg in Feb). Am considering that a replay of that inflammatory response doesn’t sound like a risk I should take when I am STILL inflamed?
But at his suggestion, I went ahead and checked into the the on-site clinic he told me to try. It was using Pfizer but the nurse thought since I was outside the 4 -6 wk window for the 2nd Moderna shot, that the Moderna had been processed out of me, and I should begin over by taking both the first and eventually the second Pfizer vaccines she had. I adjourned to do more research.
But hearing of these PMR exacerbations in this group, I am disinclined — it seems no medical science has been exploring and tracking our particular difficulties. We are on our own.

@scpartain - Can you discuss increasing the dosage with your doctor/rheumatologist? From what I've read and my experience with the 2 occurrences of PMR, the standard starting dose of prednisone for PMR is 20 mg. At 20 mg I had zero pain fairly quickly after taking the prednisone. Other members may want to weigh in with their experience also. The pain starts coming back when you start tapering off the drug which is why it's done slowly. Also, each of us are really different when it comes to pain and tapering off of prednisone.

My first Moderna vac 1/22/21 initiated me to PMR. I was diagnosed within a couple weeks. So the connection to the vaccine seems obvious. In researching, I found articles that suggested a connection between PMR and vaccinations or viruses acting as triggers. Looks like a Bingo.
Back in Feb. my GP and my Rheumatologist couldn’t say whether it would be appropriate for me to get the second Moderna dose due in late Feb, so I have waited. On my second visit with my Rheumatologist last week, he suggested I go for the second shot. He speculates that the prednisone I am taking may protect me from a kicked up inflammation by the Covid vax? Note: I am still dealing with this initial exacerbation and trying to reduce my pred from my current 20 mg (started at 40mg in Feb). Am considering that a replay of that inflammatory response doesn’t sound like a risk I should take when I am STILL inflamed?
But at his suggestion, I went ahead and checked into the the on-site clinic he told me to try. It was using Pfizer but the nurse thought since I was outside the 4 -6 wk window for the 2nd Moderna shot, that the Moderna had been processed out of me, and I should begin over by taking both the first and eventually the second Pfizer vaccines she had. I adjourned to do more research.
But hearing of these PMR exacerbations in this group, I am disinclined — it seems no medical science has been exploring and tracking our particular difficulties. We are on our own.

Hi,
I was diagnosed in April after suffering with PMR sx since my 2nd Pfizer vac on Jan 24th. On 20mg of Prednisone with 90% relief.
I am an RN & have been administering the vaccines since January. I was in denial that the immune response from the vaccine caused my symptoms...obviously no longer. There is not enough data yet on the longer term effects. Personally I would get antibodies checked before any further COVID vaccine. They are not sure about many things. Use precautions esp around non vaccinated people. Most people contract COVID in the home.

At the risk of repeating my story I will carry on.
Five years ago dignosed withGPA which evolved into PMR.
Happily down to 3mg pred with only some lingering left piriformus pain and arthritic right knee slowing me down. 75 year old male playing golf couple of times a week and walking the course.
Then came MODERNA one month ago, 11th March'21
Next day I had a clear flare up in both area. It only got worse for a week and I didn't even imagine that the vaccine was a factor. The pains were worse than even when I was diagnose. Walking became a real problem. Then the penny dropped.
I am convinced the vaccine has got to me. I tried to call my rheum. doctor but no contact so I upped the Pred to 10mg. for 2 days.This cleared my pain.
Then I contacted the doctor and she said 5mg/day.
This has not improved my pain. She said better take Tylenol than Pred. Well I agree but Tylenol doesn't work I'm afraid.
So I have tried 9mg for the last few days. Still no good.
In Canada we are told the next jab is 4 months after the first.
My dilemma is, although I am determined to get the Second shot, I don't want to arrive for my shot with a elevated dose of prednisone in me. The nurses will not be pleased I am sure.
The MODERNA will not be as effective as it might be, so I'm told.
Also the after effects might be worse than after the first shot.
So in summary, I am convinced the mRNA vaccines for patients with Polymyalgia Rheumatica are problematic.
I see quite a lot of people on this and other sites who are suffering. Some people with new PMR diagnosis, some with PMR in retreat and some like myself who were doing fine on a low dose.
I admit to being a bit worried and confused.

.