PMR symptoms? Still searching for answers

Posted by betsyhase @betsyhase, Apr 25 1:21pm

I have only been dealing with PMR since February and started on Prednisone 12.5mg mg. I am now on 9mg and my joints in my hands are visibly swollen, stiff and painful. My PCP doesn't think it has to do with PMR so tested for RA. Nothing showed up there. I am better on the Prednisone but still having major muscle pain that keeps me inactive. When I push to be on my feet doing simple chores or short distance walking to appointments, I am down for atleast 2 days. I am wondering if I am not on enough Prednisone or just lost so much strength that recovery is slow? Very frustrated!

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

seniormed | @seniormed | Apr 25 3:05pm

If you have access to a rheumatologist in your area get a referral for
better symptom control.

betsyhase | @betsyhase | Apr 25 3:38pm

In reply to @seniormed "If you have access to a rheumatologist in your area get a referral for better symptom..." + (show)

@seniormed
Thanks, but I have been referred but they haven't called me. I have checked with them but they have a reviewing process.

Colleen Young, Connect Director | @colleenyoung | Apr 25 4:34pm

In reply to @betsyhase "@seniormed Thanks, but I have been referred but they haven't called me. I have checked with..." + (show)

@betsyhase, reading through your past 2 discussions:
- Is this common? https://connect.mayoclinic.org/discussion/is-this-common/
- Prednisone tapering: How did you do it pain free? https://connect.mayoclinic.org/discussion/prednisone-tapering-4/

It looks like you and your PCP continue to search for propering dosing to manage your symptoms until you can see a specialist. Your pain sounds quite debilitating and definitely diminishing your quality of life. Have you been able to discuss increasing your dose of prednisone, the possible benefits and risks until you get an appointment with the rheumatologist?

betsyhase | @betsyhase | Apr 25 9:57pm

In reply to @colleenyoung "@betsyhase, reading through your past 2 discussions: - Is this common? https://connect.mayoclinic.org/discussion/is-this-common/ - Prednisone tapering: How..." + (show)

@colleenyoung
Yes, this has crossed my mind. My quality of life is suffering and I don't think my primary has had much experience. He is researching as we go and my bloodwork looks better , I feel better but I am still very limited in what I can do.
I guess I need to I be more insistent on treatment options.
Thanks for your feedback!

kjoed53 | @kjoed53 | Apr 26 9:15am

In reply to @betsyhase "@seniormed Thanks, but I have been referred but they haven't called me. I have checked with..." + (show)

@betsyhase
Maybe you should consider calling another rheumatologist. I know it can be difficult to get an appointment with a rheumatologist, but you have already been waiting and suffering more than two months. I was initially diagnosed with a pinched nerve last October but I was lucky to have doctors with solid contacts and have been seen by specialists for pain management, neurosurgery, rheumatology and hematology/oncology within 2-3 weeks for each referral. Two things to consider...your hand symptoms don't sound like classic PMR and you are on a low dose of prednisone. You may have seronegative RA or something else. You don't mention your symptoms or blood work. I was started on 15mg prednisone in February because my initial blood work came back with inflammation markers. After the rest of my blood work came back I was increased to 25mg. Because my symptoms reacted to the prednisone and there were no indications of other autoimmune disorders, I was diagnosed with PMR. I'm still being tested for a blood disorder. I know that if I hadn't been seen by a rheumatologist in a timely manner, I would have been in the ER looking for answers. Waiting in constant pain was not an option I was willing to consider.

betsyhase | @betsyhase | Apr 26 10:58am

In reply to @kjoed53 "@betsyhase Maybe you should consider calling another rheumatologist. I know it can be difficult to get..." + (show)

@kjoed53
I am already on my 2nd referral for a Rheumatologist. We have a smaller number available in our area and I guess they are swamped. My labs look good at this time but I agree my PCP may be in over his head. I may have to ask him about a referral out of our area. He did just test for Rhumatoid Arthritis but that was negative.
Being that the Rheumatologist are overwhelmed in our area, I am at a loss.

kjoed53 | @kjoed53 | Apr 26 12:00pm

In reply to @betsyhase "@kjoed53 I am already on my 2nd referral for a Rheumatologist. We have a smaller number..." + (show)

@betsyhase
Sometimes your insurance can step in and advocate for you if you're not on Medicare

betsyhase | @betsyhase | Apr 26 1:19pm

In reply to @kjoed53 "@betsyhase Sometimes your insurance can step in and advocate for you if you're not on Medicare" + (show)

@kjoed53
I am on Medicare but thanks for the suggestion anyway.

kjoed53 | @kjoed53 | Apr 26 2:01pm

You can always try for a telehealth visit to jump start the process, but most rheumatologists want the first visit to be in person.

gmdb | @gmdb | Apr 26 5:36pm

In reply to @betsyhase "@kjoed53 I am already on my 2nd referral for a Rheumatologist. We have a smaller number..." + (show)

@betsyhase as was already suggesred it could be seronegative RA which can't be detected in the blood work. It often mimics PMR symptoms and can only really be tested for in a PET scan - where it shows as inflamed tissue inside the joints. PMR will show as inflamed tissues in the muscles and around the joints, not not inside. It is an important distinction because prednisone is not the best treatment for RA. Best of luck.