1. < Polymyalgia Rheumatica (PMR)

PMR expert?

Posted by pmrnewbie @pmrnewbie, Jan 14 12:35pm

Recently been told I have PMR. Would like to consult with an expert.
Any suggestions?

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Mentor
John, Volunteer Mentor | @johnbishop | Jan 14 1:10pm

Welcome @pmrnewbie, I would try to see a rheumatologist. Was it your doctor who told you that you have PMR? Can you get a referral?

REPLY
jabrown0407 | @jabrown0407 | Jan 15 1:17pm

You need to see a rheumy because they also need to eliminate any other autoimmune problems. Next while looking for an expert on the topic that can see you in a reasonable time frame you might go out to YouTube and watch some videos on the basics, read thru some conversations here on Mayo Connect, and if you are inclined go to the National Institute of Health to look at papers that have been posted there. My understanding is every article they post has been peer reviewed, with the vast majority being individual cases or small samples - the vast majority are not double blind. Informational for sure but just not extensive. PMR is not really well understood since there is not a medical test that is used to positively diagnosis it. It is diagnosed based on your symptoms, blood work and elimination of other problems that can be tested for. Sometimes it is not diagnosed until the patient responds to steroid treatments. There is not a single protocol that works for all. You will need to build a strong relationship with your treating doctor since successful communications will be key. You might want to keep in mind this is a journey not an event. I wish you well on your journey with PMR.

REPLY
lindaadele | @lindaadele | Jan 16 5:17pm

First of all your best bet is to see a rheumatologist. if it were me I would ask the doctors that I respect very much for suggestions on a very very good rheumatologist Who has a good reputation!!! my very best wishes to you finding a really good rheumatologist is not very easy and they’re all very very busy so it’s like one step at a time. I very best wishes to you!

REPLY
1 reply
chacha83 | @chacha83 | Jan 17 10:07pm
In reply to @lindaadele "First of all your best bet is to see a rheumatologist. if it were me I..." + (show)
@lindaadele

First of all your best bet is to see a rheumatologist. if it were me I would ask the doctors that I respect very much for suggestions on a very very good rheumatologist Who has a good reputation!!! my very best wishes to you finding a really good rheumatologist is not very easy and they’re all very very busy so it’s like one step at a time. I very best wishes to you!

Jump to this post

I was diagnosed in recent 2 weeks and my primary care doctor has me on 10 mg Predisone. I will see rheumatologist in a couple of weeks. Had pain from 7:30 am to 2 pm and felt extremely discouraged! I had difficulty walking due to the pain. After 2 pm, I have been comfortable.

REPLY
1 reply
54pontiac | @54pontiac | Jan 18 9:06am
In reply to @chacha83 "I was diagnosed in recent 2 weeks and my primary care doctor has me on 10..." + (show)
@chacha83

I was diagnosed in recent 2 weeks and my primary care doctor has me on 10 mg Predisone. I will see rheumatologist in a couple of weeks. Had pain from 7:30 am to 2 pm and felt extremely discouraged! I had difficulty walking due to the pain. After 2 pm, I have been comfortable.

Jump to this post

I was also started on 10 mg and it took a couple of weeks to be pain free. If that does not happen for you, you may need a higher dose.

REPLY
1 reply
chacha83 | @chacha83 | Jan 18 10:44am
In reply to @54pontiac "I was also started on 10 mg and it took a couple of weeks to be..." + (show)
@54pontiac

I was also started on 10 mg and it took a couple of weeks to be pain free. If that does not happen for you, you may need a higher dose.

Jump to this post

Thanks for sharing your experience.

REPLY
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