PMR Dosages and Managing Symptoms

Hi @tillysam, From what I've read, the onset of pain with PMR is worse in the morning and recedes later in the day. My pain was terrible most of the day in all the places you mentioned. It lessened somewhat in the evening. I exercised and stretched as much as I could, but nothing helped much. I also became anorexic and got anemia, both symptoms of PMR and GCA. I had PMR first, then GCA. If, on a higher dosage of prednisone your pain is relieved, that's an indicator of PMR, according to medical text books. I had full blown PMR for about four months with only slightly elevated inflammation markers which caused my Primary Care Doctor to miss it. Your case is unusual because you had GCA first, now, most likely have PMR. Usually, the order is reverse. Good luck, I hope you find some relief fast.

Hi, I'm curious to know if you did a slow taper from 80mg down to 7mg. As I wrote above, I'm on 40mg for PMR because every time I tapered below that I'd get another fully fledged flare. (My symptoms started at the end of May 2022) From what you say, and since you have GCA which is closely related, it sounds to me like you also have PMR. But I'm certainly no expert! If you're having debilitating pain at 7mg, it's worth trying to go up a bit, because you don't want it to turn into a major flare. Good luck, I hope you find relief.

@tillysam I have PMR with normal Sed and CRP. You should not be in awful pain. At what level of prednisone did you last feel good?

There is so much in our group about prednisone but I am still confused. I have been diagnosed for a month. Started on 20mg OD, decrease to 15 mg OD after two weeks and supposed to go to 10mg tomorrow. My clinical picture is ….I take prednisone at 9:30 am. They take effect by 1pm. I am virtually pain free from mid afternoon until 4am. I then wake and the pain increases very rapidly over the next few hours to a level of about 7 or 8. Also the stiffness returns but not too bad. I supplement with Tylenol and/or Advil and that does give me some relief.
Question….should I decrease to 10mg tomorrow as scheduled or should I have less pain before decreasing? What are the thoughts of taking 10mg at 9:30 am and 5 mg, say, 4pm or with supper?
Will be interested in the opinions of others who have dealt with this much longer than I have.

Thank you for taking the time to answer me.

@tillysam Common recommendation is to go back to where you last felt good (say 10 mgs.), stabilize and then begin 1/2 mg. reductions when you're ready. If you have PMR and are in pain, you are not taking enough prednisone. Your inflammation will accumulate and you'll have a flare (if you don't have one already). I do hope your doctor is aware that approximately 20% of us who suffer from PMR have normal blood markers.

I was diagnosed with GCA in 2020 and put on 80 mg. of Prednisone(so that I did not go blind). I have noticed as I have tapered that I have pain in my arms, shoulders, neck, hips and knees. At that time I asked my doctor if he thought I had PMR and he told me that I did not because my sedimentation and CRP were good. I did some research and found out that you do not have to have an elevated sedimentation and/or CRP to have PMR. Now that I am at 7mg. of Prednisone the pain is awful. I will be speaking to my doctor about upping the Prednisone to see if some of the pain gets alleviated.
Has anyone experienced anything like this? My morning is awful but as the day goes on I feel better. Exercise does help.

Hi, tillysam, You are correct. Your CRP and ESR don't necessarily have to be elevated for you to have PMR. And if the blood work was done after you were on the prednisone, that's probably why. The prednisone gets rid of the inflammation and lowers your numbers. My numbers have been in the normal range from the first month after I was started on pred., eleven months ago. You don't say how quickly you tapered, from 80 mg., but however you did it, it was a long way to go in less than 2 years, to be at 7mg. now. My guess is you probably tapered a little to much and too fast as you got closer to 7mg. If you have pain, it's usually because you're not taking enough prednisone to get rid of the inflammation at this time. You should probably go back to the last amount you were taking before you started feeling the pain. Stay there for a week or two until you're feeling good again. Then start back down very gradually. Maybe half a mg. at a time, every 3 or 4 weeks. Even that could be too fast. Everyone is different. But don't go down if you're feeling any pain. Stay put until you're feeling good. Then try it. This taperin thing takes patience!! Good luck!