I was diagnosed with PMR one year ago. It started with Pain and severe stiffness in both shoulders. My knee was very painful and stiff as well. I had low grade fevers in the evening, weight loss, i felt so down and i had an elevated ESR (96) and CRP. I couldn't dress, shower or even brush my own hair, I counldn't squeeze the toothpaste or get in or out of bed without help. I also developed pain and stiffness in my hands, mostly around the thumb area. I was finally started on Prednisone 10, which after a week did not help so was increased to 15mgs. I am now on my 3rd Rheumatologist who started to wean me off the pred. I am down to 4mgs 6 times a week and 5mgs once. I tried to go to 4 mgs daily and the pain in my hands increased and now I have developed stiffness and pain in my thighs and hips. My doctor doesn't think i have PMR, she says I am too young 53, 54 in two weeks. She first said Psoriatic Arthritis and now just says inflammatory arthritis. Both ANA and RH factor are negative. I am so convinced that it is PMR and I don't want to start on arthitis meds. I reas the posts here and have heard so many of you sya you are experiencing the same symptoms. I am so depressed right now, I do not know what to do about treatment. I am suppose to start Supartz for my left knee, 5 injections in 5 weeks, my ortho doc says that is a separate issue. He says I have OA. I have had surgery in the past so I know he is right. Any suggestions, thoughts or ideas are welcome. I am tired of taking pred with the side effects especially the weight gain (35) pounds. I am thinking of going to yet another rheumatologist for another opinion. Thanks!
sure sorry to hear you are having all this pain and trouble. Hope another rheumatologist will be able to diagnose the right thing for you.. Mine ordered blood work for me, and then he could see all the "flags" when he read the reports....maybe this one will do that for you. good luck, and keep us posted....
You are NOT too young, I was 51 when my PMR started originally - that's why it wasn't diagnosed initially. I also had a rheumy who was fixated on some other inflammatory arthritis but a GP listened to my report of the dramatic response to pred - I was able to move without pain and walk downstairs 6 hours after taking 15mg of pred.
Do I take it you are in the US? I say that on the basis of you having a few consultants - rarely happens in the UK!
Go to this link:
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
and then to the first link in that post. On that site, at the left side of the homepage, is a link to medical information. There you will find the UK guidelines for PMR - the age they say there is now 50 - there are increasing numbers of patients under 60 being diagnosed with pred-responsive PMR.
The final link is to a paper about the diagnosis and management of PMR. aimed at GPs/PCPs. It may also be helpful.
However, your comment of being tired of pred doesn't fit with the rest - if you DO have PMR you will need pred to manage it, there is no other option. And why did you leave the rheumy who first diagnosed you with PMR? It is always difficult to go to a rheumy who didn't see you in your original state.
Hi Eilen,
Thank you. I went on the link you sent and it was comforting and very informative. I went to the first Rheumatologist and loved her. She diagnosed me as soon as she spoke to me and heard my symptoms. She did bloodwork which confirmed her diagnosis. I am a Registered Nurse and could not work at the time. I could never do the work i do the way I was feeling. I first saw her in late August and it was the middle of September and I was still out of work. The severe symptoms had subsided but I still had problems lifting and moving my shoulders. I went to her for my appoinment and she just went off about being out of work. She was upset and very angry that I also went for a 2nd opinion which my VP of nursing had suggested. She was very rude and degrading. She also told me that she would take me off the Pred by that Nov.. I could not continue to see her. I went to the 2nd opinion doc and he was really not doing anything. So now I am with the current rheumatologist who is great but just doesn't agree that it is PMR because of my age and because I have pain in my hands. I didn't mean to say I don't want to continue Pred, it is just that i am feeling the side effects, especially the weight gain. Thank you so much for answering my post. I just need to know that I am not alone with my symptoms.
Claudia
"it is not good to stay on a steroid so long!!"
It is true that we should try not to remain at the very high doses for unnecessarily long and should try and find the 'maintenance' dose that controls our pain as soon as possible, SYMPTOMS ALLOWING.but once we reach the lower doses (around 7.5 and below), there really are very few, if any, side effects.
If you are unhappy about taking a 2mg pill every other day and then following your rheumy's advice to "QUIT IT, then why not try 2mg every third or fourth day in the first instance.
Certainly when I reached these very low levels, I preferred to reduce in just tiny half mg decrements, rather than rock the boat after previously having experienced a severe flare at 3mg. When this happens, you have gained nothing as you have to return to an even higher dose (10mg in my case) - far better to take tiny steps to reach zero........and be able to remain there successfully.