How to address PMR pain while decreasing prednisone

Good to hear from you @noahs. Sounds like you have a good plan for tapering off prednisone once your other health issues better. Thanks for sharing!

new to this PMR , very informative

my arms ache , my thighs , butt and stiff neck, hard to get moving in the AM . have taken tons of advil, have doc appt in two weeks

Hello @sidsell, welcome to Connect. I have had 2 occurrences of PMR but it is currently in remission. I still have some problems getting started in the morning but I'm sure a lot of it is age related in my case.

Is your upcoming doctor appointment with a rheumatologist? Hope you are able to update if you are diagnosed with polymyalgia rheumatica (PMR). There is a lot experience that members can share with you.

Hello, Sidsell. Welcome to this list. Before I was diagnosed with PMR on 8/24/18 I was having the same symptoms as you. And I was taking the maximum dose of Ibuprofen and Tylenol alternately. I also used CBD for about a week. None of these medications did much to relieve the pain. The sed rate test was within normal limits about a month before 8/24/18 and I was having all of the symptoms. The second set rate test was at 44 and clearly indicated inflammation. If your doctor checks your blood sample and it is found to be normal, I would suggest that you ask for a short trial of prednisone to help diagnose your condition.

I had the same symptoms you are having, and I was finally diagnosed with polymyalgia rheumatica which is an autoimmune disease. It took three months and I saw five different doctors, four of whom were specialists, before a diagnosis was made. At that point I could hardly walk and could hardly dress myself.

When the initial diagnosis was made, my inflammation markers were quite high. Prednisone was a miracle drug in that the relief from pain was immediate and magical. My inflammation markers returned to normal quickly. However . . . as the dosage of prednisone was decreased, the muscle pain began to return. My doctor insisted that the pain was not caused by PMR because the markers for inflammation were normal. It did no good for me to keep repeating that there was a direct correlation between the decrease in dosage and the escalating pain.

After a year of fighting this battle, I got an appointment at the Mayo Clinic in Jacksonville, FL. (It was during the winter, and I did not want to deal with cold weather.) I learned from the rheumatologist at that Mayo Clinic that about 30% of patients diagnosed with PMR do not go into remission. Unfortunately, to date, I am one of those individuals. I also learned that about 10% of patients diagnosed with PMR will NOT have elevated markers for inflammation. Unfortunately, I also fall into that category as well. My dosage of prednisone was increased, and the pain again disappeared. I am currently on 11 MGS of prednisone and am decreasing it by 1 MG per month. My hope is that I will go into remission. Time will tell.

I can tell you that if it is PMR, nothing other than prednisone will control your pain. I have been most fortunate that my excellent PCP was grateful for the information provided by Mayo, and my PCP is supervising my dosage of prednisone as outlined by Mayo.

Best wishes to you as you pursue a solution to your health problem.

It has been for me. I consulted a rheumatologist at the Mayo Clinic in Jacksonville, FL. She told me that I should make an appointment with my ophthalmologist when I returned home and that he should regularly check my eyes. She also stressed that I was to quickly contact my ophthalmologist if I had changes in vision.

Within six months after beginning prednisone therapy, I required cataract surgery. I have had vision problems ever since beginning prednisone therapy. Currently I am sometimes experiencing double vision, and my visual acuity is like a flea. I have had to have lens changes as often as every three months. Needless to say, I have resorted to seeking out Success Vision.

Sweating has been a serious issue with me. About three times a day (especially at least once at night) I sweat from head to toe. I can feel the sweat on my scalp. It is caused by prednisone.

You might Google "side effects of prednisone." I did. I learned a lot.

Prednisone is Dr. Jekyl and Mr. Hyde. It miraculously relieves the pain of PMR and restores mobility, but its side effects are horrible.

Good luck to you as you deal with this disease.

I love your attitude. I am adopting it.

thank you for your advice , my appointment is a week from today (with a rheumatologist) (very hard to get ) this pain is difficult to deal with , it came on suddenly, Im thinking its because of much stress.

Hello @sidsell my name is Beryl as you have seen you are not on your own with PMR although you feel like you are the only one in the world and nobody believes you that you are in such pain even though you can't walk and you feel that they think you are putting it all on .....I know been through the hoop with it .....but talking to the people that are and have suffered can give you the confidence you need to carry on......
You have an appointment I believe at the Mayo Clinic where you will be helped and looked after.......the very best of luck with your recovery .......Beryl