PMR - Decreased prednisone and pain returned

@noosat1, I'm with @beryl. Glad to hear you are doing well. Patience is important ☺ Keep it up!

Thanks so much for all the encouragment

Forgot to add, M.D. thinks it a very good Idea to join gym. He knows they have special classes to help with flexibility and strength for people with physical problems. He said that I should not think of trying treadmill until my muscles have recovered some of the initial strength. Although he practices "family medicine," his specialities are sport medicine and pain management. I started going to him over 15 years ago because of shoulder overuse pain. He starts with good diet and exercise. I asked him about going to a rheumatologist. He said he would recommend one if that is what I want to do, but that he does have patients with PMR. I'm staying with him at this time.

This is @beryl There might be someone that remembers me ……It’s a long time since my last post…..I have been told I am in remission from my PMR having suffered for ten or more years……but still on prednisone trying to reduce to the point that I can stay at for life I expect! …..I still have pain in my legs , I’m told that it is nerve pain from my spinal stenosis…..what ever it is I live with it and take a small amount of Norco at night so I can sleep…. I have osteoporosis in the lower spine….
Had an op to remove access bone and a metal clamp to keep my spine from moving out of position ….well that’s me up to date …..I would like to hear from any of you that may remember me and to hear now you are …….I try to ignore what’s going on and smile so as not to be an old grump ……stay happy and good luck to you all suffering with PMR. Beryl

Hi @beryl, Welcome back! I do remember you and I'm happy to hear you are doing OK. Also glad to hear your PMR is staying under control even though you are having some nerve pain? You mentioned you are still on prednisone. Do you mind sharing what dose you are at?

No recommendations. I have had pain return in my neck, shoulders and between shoulder blades after reducing from 15mg to 12.5, then upped it to 13.75 and now back to 15 mg. Jaws started raging after supper the other night. Went into ER the next morning as the jaws were still bad. Then that stopped (so far), but the neck and shoulders this morning are not good. Neurologist recommended staying at 15 mg to see if I "level off" and then will decrease by 1 mg. in another week. Quite the rocky road by times, but nothing compared to the pre-diagnosis pain. Good news is I finally have a Rheumatology Clinic appointment for May 30, also an actual Rheumatologist. The "urgent" referral has been since Jan. 5/22. Canadian medical system may be free, but it's not the best.

So glad to know you are finally getting to see a rheumatologist. I'm sure that will be helpful to you. My PMR is currently in remission. The rheumatologist advised me to avoid strenuous exercise, especially stair climbing. That is not possible since I live in a house with four floors. I still have some residual pain and stiffness in my shoulders, buttocks, and thighs, but off of prednisone and over all good for a seventy-six year old person. I can relate to the jaw pain. When my PMR was active, there were times when I could not open my mouth to eat; it was too painful. I wish you good luck at your appointment with the rheumatologist and I hope you will update your treatment and progress.

I'm so happy you're in remission. Such good news! Thanks for your update. I live on the second floor. Sometimes I go up quickly, other times it's a struggle bus. I'm sure I will overcome the residual pains too. Just a matter of tapering a little more slowly. 2.5 mg was somewhat overzealous. I now have a prescription for 1 mg. Prednisone so that will make the downward trend easier. Next time I update, I will be saying "I'm in remission". So be it!

Have any of you been diagnosed with GSA since you all have/had experienced jaw pain, which jaw pain is one of the main symptoms of GSA?

When my PMR was active I was not aware that jaw pain was a symptom of GCA and did not talk to my rheumatologist about it. However, I did not experience any headaches or other such symptoms and the 15-20 mg. doses of prednisone were adequate to control the pain, so I doubt if I had GCA.