PMR Dosages and Managing Symptoms

So I'm reading all these posts with some trepidation, because I've been put on 40mg prednisone for 4 weeks, to begin tapering after that. This was due to my initial flare only being alleviated by a quick but strong course of prednisone (60mg down), but when I got below 20mg, the PMR came roaring back. So we tried 25mg, then 30mg, with no relief. It only helped when I went back up to 40mg. My dr said that it's essential to stop the flare due to the possibility of developing GCA, and frankly I'd take 1000mg of the stuff if it stopped the pain. In 2 weeks I'll begin to taper to 30mg for a month, then down again, but I'm nervous about being on so much prednisone for so long. Right now I'm seeing my neurologist--who treats PMR in some patients as it's associated with GCA and vasculitis--and am waiting for my rheumatologist appointment at the end of October. (But I trust my neurologist.) Has anyone else had to start out on such a high dose for this long?

@ldingwall88 Being on several forums for three years, I'd say your case is rare. A starting dose of 60 mgs. is way above normal (generally 15-25). Are you getting pretty much complete relief at 40 mgs. Hopefully someone will come along who has experienced something similar. If not, you're blazing a trail. So sorry.

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.

I'm getting about 90% relief at the moment, so long as I time the dosages correctly. At first I was told to take it early in the day, but it wore off. Now I take 3 pills between 8am-2pm and the last around 7pm which gets me through the night. I know everyone is different, but all the horror stories about prednisone make me anxious--especially if it's going to be a slow process for me to get below even 20mg, as my neurologist suspects will be the case. I hope to hear from someone in a similar situation. Thanks for your insights.

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.

Good to see you are getting some relief. I can't begin to imagine having this disease without having prednisone to help. There is a book that I've heard others recommend that some folks have found helpful.

Polymyalgia Rheumatica and Giant Cell Arteritis: A Survival Guide
by Kate Gilbert: https://www.goodreads.com/en/book/show/30843103-polymyalgia-rheumatica-and-giant-cell-arteritis

@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?

@ldingwall88 Split dose sounds like a good idea for you. Once you are stable and start to taper, take it slow and easy (usually not more than 10% reduction at one time). Only taper if you are doing reasonably well (90% relief may be good enough).

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.

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.