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PMR and RA
I am a 53 year old woman. About 7 years ago, I started having hip pain, elbow pain, neck pain, and shoulder pain. I was having trouble sleeping, exercising hurt, and made my legs feel very weak. My PCP sent me to a Rheumatologist. My Sediment level, and CRP were very high, and I had a positive Rheumatoid Factor.
I had multiple radiographs taken, and RA was ruled out. I was then diagnosed with PMR. I was started on Prednisone. The higher dose of Pred helped with some of the pain, but not all of it, and I was still struggling. When I weaned down to 5mg., I stayed on that dose for about 4 years. Still really struggling with pain, and I was worn out.
I ended up moving, and seeing a new Rheumatologist. I was having so much pain that I could hardly function. My Sediment, and CRP were again very elevated, even on the 5 mg of Prednisone.
I had a CT scan of my hips, and spine. I found out I had scoliosis in two places in my back, and degenerative disc disease. I was also diagnosed with RA, taken off Pred, and put on a cancer drug.
I stayed in constant pain, and struggled for a few more months. Per my PCP, I decided to get a second opinion. I went to my 3rd Rheumatologist, and was diagnosed with Fibromyalgia. He took me off all meds, and put me on Cymbalta. He said I did not have PMR, or RA. Again I struggled for months in so much pain, and started having some shortness of breath, and my eyes were staying bloodshot. I went back to see my PCP, My Sediment level, and CRP were very elevated. I also had a Chest CT with dye.
The chest CT was normal. I was put on Doxycycline for a possible Viral infection, and back on a Prednisone pack.
I am currently on 5mg of Prednisone, and 60 mg of Cymbalta. And, in pain.
My PCP sent a referral to Duke, and I have an appointment in March, which is the soonest they can get me in. I am hoping they can give me a diagnosis, and maybe help me with pain relief, so I can live the active life I use to live.
Any suggestions, or advice?
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Wow I was only told of RA not other immune issues?
This doctor was a new doctor past 6 months, as I moved about 2 years ago and only dx a year ago
Maybe I should find another doctor but what specialty? Do I stay with a Rheumatogist or is there a More wholistic type doctor to look for?
How do I find a reputable doctor to treat this
@dubecates I’m sorry if i caused some confusion with my wording, but you say that you are dealing with PMR and RA. So that’s a lot of information that you have to deal with. A rheumatologist is the speciality that you want to see, but check to see if they have a sub-speciality in autoimmune conditions. You can go online and look up rheumatologists in your area. You should be able to see their bio for education, training, and speciality.
Do you feel that, other than not doing a physical every time, he/she is treating your disease adequately?
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2 ReactionsNot really sure. Still in pain
Hello @dubecates, I would like to add my welcome along with @becsbuddy and other members. Sorry to hear you still are having pain from your PMR and other conditions. I can tell you from my first occurrence of PMR that it took me 3-1/2 years to taper off of prednisone. When I was first diagnosed I also had a swollen right knee and leg from gout. At my appointment with the rheumatologist they first drained fluid from my right knee and then I had the exam with the rheumatologist who diagnosed me with PMR. I picked up my prednisone prescription at the Mayo Rochester pharmacy at noon and took a 20 mg tablet. By the time I had a followup appointment with the rheumatologist later that afternoon, my pain was gone and I could walk fairly normal.
My first thought is I would talk with your rheumatologist and ask him about your tapering schedule. Maybe you are tapering down to fast. My rheumy told me to listen to my body and taper accordingly. He also gave me prescriptions of 10, 5, 2.5 and 1 mg tablets to make tapering to a lower dose based on my level of pain easier. He suggested I keep a daily pain log of how my pain was on a scale of 1 to 10 along with the amount of prednisone I took that day. Then I could look back and taper a little smarter.
There are a lot of different conditions that mimic PMR. Here's an article that describes some of the possibilities:
-- Diseases that mimic polymyalgia rheumatica (PMR): https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica
@kmb181 started a discussion with the same title as yours and may be able to share experiences with you -- https://connect.mayoclinic.org/discussion/pmr-and-ra/
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5 Reactions@dubecates you will notice that I have moved your post into another recent post on the same topic of PMR and RA so that you may also connect with @kmb181 to compare notes and experiences.
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2 ReactionsI was diagnosed with RA years ago. I’m allergic to NSAIDS so was put on large dose of prednisone to deal with the inflammation. I was also started on DMARDS, most either didn’t work or worked for a limited period. Several people take both methotrexate and a DMARD, which does help them. Already tried: Cimzia
Actemra
Xeljanz
Enbrel
Humira
Methotrexate
Plaquinil
In addition to the prednisone. I’ve been on Orencia, a biologic that I inject once a week along with 7mg of prednisone daily which I increase to 12mg for a flare as well as injection in the joint. That’s been the most helpful, but I think it’s time to change.
I hope you get the help you need.
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1 ReactionThank you!
Did you have your Sediment and CRP checked regularly? They check mine, and when it’s back down, they have me taper off the Prednisone. When I get down to 5mg, I can go about a week, and then the pain is not tolerable.
I am also on Cymbalta, which I really don’t feel is helping much.
It’s been a tough 7 years. I am hoping Duke can help me. Though I would love to go to Mayo.
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1 ReactionI forgot to mention that I’m also on 300 mg of pregablin-150 mg twice a day, also from the rheumatologist. She does tests every 3 months, I believe.
From a pain management doctor I get Percocet, 3 daily and 10mg twice of morphine for stenosis, DDD, sciatica and yet another problem too lengthy to even get into.
I was on much higher doses of pain medication which I just weaned myself off foolishly believing medical science had found something for people like me allergic to NSAIDS. But, silly me, I was wrong and the whole medical world decided everyone with pain was an addict and needed to suffer instead of being treated. When I stumbled across a doctor who realized I’d run out of medical choices, he was to intimidated by the culture to effectively treat my pain. But, he prescribes what he thinks he can get by with. Which, by the way, helps the most with my pain. And, I’m still not an addict.
OK thanks