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

I guess interpretation may be it. According to the guidance on the CDC Covid19 Vaccine Hotline it says: "and taking immune suppressing drugs (in general) without the limitation on how much." I wasn't able to paste it. Clearly, predisone suppresses the immune system regardles of dosage. The guidance also says to consult your doctor. You can also call the Hotline for further clarification if you like. It really comes down to how you interpret the source both of which are coming from the CDC.

I reached out to the CDC Hotline for my own clarification and this is what I learned. The eligibility critieria for immunocompromised does mention 'taking high dose' immune suppressing drugs without giving a specific dosage like the CDC web site has. This is why I interpreted it to mean if you are taking immune suppressive drugs period. The CDC web site is more specific on the doseage. So you are right to follow what the CDC web site recommends. And I have also learned something from your comment. Thank you. All the best.

Thank you for your new group
I want to know what I have, I go to so many doctors that I am not sure what is going on with my body
My rheumatologist says that she have PMR going on 5 years now, Fibromyalgia and arthritis and other forms of skeletal issues
I think that I have had every blood test known to man, I am still experiencing elevated CRP levels ,was finally weaned off prednisone which really did not help me. Another doctor told me that I didn’t have fiber but neuropathy, is there any blood test that may help with a possible diagnosis, that anyone may have had?

Support group for PMR what other people are taking to relieve the pain & discomfort been on steroids over two years & now off & pain & discomfort are back unfortunately

Hello @djtm, Welcome to Connect. You will notice that we merged your discussion with an existing discussion on PMR so that you meet others with PMR and learn what they have shared. If you click the VIEW & REPLY button at the bottom of your email notification it will take you to the following discussion - Polymyalgia Rheumatica (PMR): Meet others & Share Your Story.

You mentioned you have been on steroids for over 2 years but you are now off of them and your pain and discomfort are now back. I was on prednisone for 3-1/2 years when I had my first occurrence of PMR. How long were you off of the steroids when the pain came back?

I too am in Canada the BC government contacted me 2 weeks ago and I got my 3rd shot my booster last week. First two Pfizer and this one Moderna only reason I got it was because prednisone was on the list of immune compromising drugs they didn’t care about the dose. Like you I golf still thankfully am on 10 mg now down from 40 takes about 5 hrs for the stiffness to go away. Yes I am staying away from folks also because on this drug we are very immune compromised and can caught anything

I am now a 3 Moderna guy thanks to BC Government. Trying to get down to 2.5mg prednisone but obviously know nothing about my level of protection from Covid.
So I am still cautious in all of my actions.
Bit of a drag but that's the way it is.
The young grandchildren are my only regret as I stay away.

It may be more helpful focus on what you don't have. Rheumys usually order labs to test for specific autoimmune diseases. If results are negative, they use this as an exclusionary process along with your symptoms to conclude that you have PMR. Conventional treatment for automimmune diseases in general includes prednosone. You have to weigh the costs vs the benefit of taking steroids, which are known to have serious side effects. That's a personal choice. It's important to do your homework.

I have ben taking 10 mg of prednosone and am going down 1 mg per mo. I am not at 4mg is there any treatment once I am off tlhe steroid? Does excercise help? I do not have my usual energy is that caused by the pmr or steroids.

Id be happy for any info.