PMR Anyone?

I have had PMR for three years. I have consulted four rheumatologists and three orthopedists in addition to my PCP. My initial treatment was 30 mg of prednisone. It was miraculous. Within about 4-5 hours I was pain free. When I had reduced the dosage to about 10 msg, the pain began returning. My doctor thought the PMR was in remission because all of the lab work was normal after the first four months torso. Because the pain worsened with each reduction in prednisone, I finally sought and obtained an appointment at the Mayo Clinic. I learned that about 40% of PMR patients do not go into remission and that about 10% will have normal lab work. Prednisone was again prescribed and the pain went away.

After my visit to Mayo, I found it took 12.5 mgs of prednisone to alleviate the pain. Unfortunately, I have been able to reduce it to only 11.5 mgs, but my goal is to keep reducing it until it is much lower than 11.5 mgs. This I can tell you, one's body responds to as little as a .5 mg dosage. I tried 11 mgs for one month and had to move back to 11.5 mgs. I will wait a month and then try again to lower the dosage to 11 mgs.

John Bishop mentioned in his posts that it took him a year of moving between 1 mg and 1/2 mg before he finally got off prednisone. Knowing that .5 mg dosage could impact my body was most helpful. It has given me hope to keep trying.

I will tell you that the doctor at Mayo told me that she had some patients who had not been able to reduce their dosage of prednisone to less than 7 mgs.

I, too, am concerned about long-term use of prednisone, but I do like being able to stand, walk, and use my arms.

FYI, I did ask about methotrexate, and she told me that it had not been effective in her treatment of PMR. So . . . I am taking the prednisone and fighting all of its side-effects.

Sorry. I did not note the date of your post.

Hi Pauletta I to have had PMR going on 4 years now I started on 20 mg of prednisone & have worked myself down to 2.5 mg/day & on occasions depending on the weather conditions & have to pop a 5 mg. I also have heard that some patients never go into remission not to encouraging I must say. The secrete is keep active I myself do a lot of gym work I also am a cyclist & in the winter months I down hill ski I also enjoy my motorcycle. My blood work up is good but still have pain in my fingers but not the thumbs strange also pain in my wrist my shoulders & neck. Oh I am also 78 & refuse to give up staying active is the secret we must work through our ailments. Roland

Hi all, well Im back again to ask some advice. I had reduced my dosage down to 1mg and was feeling okay, then I had what I thought was a relapse but after upping my meds it mad no difference and the pain was different, I think you said John that you thought it may be something else and yes it was. I had a trapped nerve and had to wait for it to heal. Thats when I decided to drop the 1mg to see how I would go, I have been off the prednisone for nearly a week now and my whole body aches like having the flu, I am also very stiff if I sit too long and getting going is a bit of a task, I am really tired most of the time with very little energy. Is this my PMR or withdrawals from the meds. I could really do with some guidance.

Hello @lindapc — I have no medical training or background but my experience with PMR is that if it’s still active and you stop the prednisone the pain will probably return.

Ache is a good way I would describe the pain I have when my PMR was active. I’m guessing a pinched nerve would cause pain in a specific area whereas PMR is mor likely all over the body/joints.

It’s not uncommon to have multiple conditions so it might be good to try upping the prednisone again a little to see if the pain/aches get better. Are you able to discuss your symptoms with your rheumatologist?

Sorry to hear your pain came back — hoping you can find the answer soon.

Knowing that some patients never go into remission is not a comforting thought, but it is a fact.

Remaining active is a key component in treatment of this disease. My challenge has been to determine the level of activity my body will allow. Too much activity seems to trigger the PMR pain for a few days.

Accepting the fatigue component of PMR is a great challenge for me as well.

Accepting that my body will never return to its pre-PMR state has been difficult, but I am getting there.

@rachelp I so agree with your statements about fatigue and body not returning to its previous state. I used to be so active and volunteered for everything and now I just try to do what I can. I have an autoimmune disease, not PMR, but the end result is all the same: fatigue, being on prednisone, and not just doing what you want to do. But! Enough whining for me! I have to think and be positive! What do you find that helps you stay positive? Becky

I remain positive because my treatment for PMR is working--not as quickly as I wanted, but it is working. My positivity is reinforced every day I am able to stand up, walk, and use my arms normally. With treatment, I can do all those things I once did but nor for as long as I once did them. For every four hours of energy expended, I may have to rest four hours. But . . . I am still as active as I can be, and I am mobile. Joy!

It seems to me that staying positive depends greatly upon self-talk, ie what we tell ourselves. Negative self-talk is extremely debilitating. I try to be aware of when I allow negative thoughts to enter my awareness, and I review the progress I have made.

In my view, knowledge is power. That is one reason I joined this group. There is no substitute for firsthand experience, and I have gotten a lot of insight and encouragement from reading others' experiences with autoimmune diseases. I constantly research autoimmune diseases because that is a fertile area of study, and the latest findings are often unknown to local doctors. I have, in the previous statements in this paragraph, laid the foundation for this statement: I do not waste my time with doctors who show little or no interest in serving a patient who has an issue that requires thinking outside the box. That is a lesson I learned the hard way.

By the way, in addition to Mayo, I have used my state's university hospital because they are, generally, on top of the latest medical practices. For me, making the extra effort to get access to more specialized and knowledgeable medical advice, has paid off.

Do I wish I could do all the things I did three years ago? You bet! Do I mope about it? No. I decided to make the best of each day.

I was diagnosed in January. It is now October.
So many doctors and no one agrees. My rheumatologist said I do not have GCI ( a secondary problem for many with PMR) Therefore, I chose to stop taking the steroids after 2 1/2 months. I had gained 10 pounds and was still in pain.
I began at the gym with 2 days a week on the bike, then three days a week, moved on to mild Zumba class and light weights. I am still focused on keeping active to fight this disease. I’ve given up caffeine and have gone to very little gluten, sugars and alcohol. If my neck and shoulder pain flares I take Tylenol and use a heating pad for relief. It is now October and I choose to never give up. I am only 56. I have raised the issue to all my doctors that I believe PMR is a result of the shingles vaccine. No comment or real discussion from them!! I was advised by a nurse who felt badly for me, my pain and my situation to go on to the Merck website. The single dose shingles shot Zostavax is no longer offered. It’s now a new company and given in multiple doses.
When I got the vaccine at Walgreens the only side effect I was informed about was on site redness and swelling. If you go onto the Merck website, the side effect of PMR is still listed !!!! I am certain that no one would willingly take the shot if this information would have been revealed.
There are thousands of people now with PMR and doctors cannot seem to figure out how “so many” have such a “rare” disease.

@rachelp You sound so determined! You might try to find the book “The Autoimmune Epidemic.” I forget the author, but it’s very good