PMR Dosages and Managing Symptoms

I started at 20. Severe pain continued. After 4 days, doc increased dose to 30. Pain started to decrease the next day, and after 4 days was gone. It is now 6 weeks later, no pain, and I have tapered to 12.5. All other things being equal, you probably need a higher dose to tame the monster.

This PMR had me debilitated for weeks before my doctor decided to up my prednisone from 15mg to 50mg - I was on 50mg for 10 days and I returned to my old self - once I did my doctor said we had to start tapering off - so I went on 40mg for a week and still felt great- I am now on 30mg a week and am on day 4 and have noticed a bit of pain in hips and shoulders- but it goes away by lunch time - I am concerned about dropping to 20mg in a few more days as I don’t wish to go through that pain and discomfort again. I will see how it goes but from what l hear here there are people on prednisone for long periods of time - I want to be optimistic and hope I can get back to a normal life in a few more weeks- I just don’t know if I can and I don’t really know how prednisone side effects are starting to occur ( my hands are stiff every morning) - and I noticed I am hungry more than usual but other than that I have no certainty of what it is doing other than helping my liver produce the necessary hormones to reduce pain.
So my question is - is it possible to stay on prednisone for years? And is there alternative medicine that is safer than prednisone to substitute when one gets down to that 1-3 mg a day of prednisone?

Hi @jixster, That's a really good question. Prednisone works well to control the PMR pain but high doses and long term can be a problem. There is another good discussion on your question here:

--- PMR: Are there treatment alternatives to Prednisone?
https://connect.mayoclinic.org/discussion/alternatives-to-prednisone/

Have you discussed alternatives with your rheumatologist?

I'm in the US. I have an appt with my Dr. on the 7th. I will ask I was only diagnosed in October.

I am wondering what the feeling is of dividing the prednisone from one dose in the morning to 1/2 dose morning and 1/2 dose in the evening. Would there fewer side effects? More even pain relief?

I'm no doctor, so confer with yours before making changes.

They tell us to take the full dose in the morning because that mimicks the body's own production of cortisol which is highest first thing in the morning. Morning dosing helps the body start making its own cortisol again as we wean off prednisone, and taking too much at night or later in the day can also mess with sleep.

Problem: if taking the lot in the morning doesn't help much with pain on waking, what is the point of taking it? So some of us split the dose, taking most in the morning and a smaller amount later in the day or evening. For me, that has taken away morning pain while trying to keep most of the dose in the morning where it belongs.

I'm currently taking 7mg a day - 5mg morning (10am) and 2mg with the evening meal (6.30pm), with pain-free mornings. Tomorrow's reduction will trim .5mg from the evening dose.

Everyone is different, but you may find that splitting your daily dose with a small afternoon/evening dose will fix the morning pain without messing too much with our body's resumption of cortisol production as prednisone is reduced.

I agree with @megz

When I was first diagnosed with PMR -- pain would wake me up in the middle of the night between 3 and 4 A.M. I had no need for an alarm clock. I was up the rest of the night in pain so that was my "A.M dose." The pain relieving effect of prednisone takes about 2 hours so by 6 a.m. I didn't have as much pain and felt better.

I then discovered it was much better when I split my dose but not half and half. What worked for me was 2/3 of a dose whenever I woke up in the morning. The remaining 1/3 of my dose was in the evening. When I took the smaller part of my dose anytime between 6 and 8 P.M. I didn't have any pain during the night. That was nice because I slept the entire night and woke up without pain anytime between 6 and 8 A.M.

When I got down to a lower dose and sleeping better after many years, I just tapered down my evening dose first until I didn't need an evening dose anymore. That way I ended up with my entire dose in the morning. Assuming I slept the entire night without pain I gradually got back to one morning dose between 6 and 8 A.M.

Ask your doctor what they think. I would always tell my doctor what I was doing but sometimes I didn't want to bother them. I did what worked the best for me.

I'm in my fifth year of this and have had several tapering down to less than 5 mg and had to increase the dose because of a flare. I was splitting the dose. This past July I was back up to 10 mg. I am not splitting the dose this time. This week I'm taking 4.5mg alternating with a couple days of 5mg. I'm basically tapering .5mg every two weeks. I'm undecided what to do if I get down to 2 mg. Probably drag it out longer.

It is very interesting to read these varied medication stories. I might as well add mine to the mix.

PMR came down like a hammer a year ago. It took the doc a few weeks to come up with a diagnosis. I do remember that the pre-diagnosis prescription (treating the symptom) was for tramadol, which had no effect.

Blood work revealed the culprit. I do not recall the initial dose of prednisone (aka "devil's tic-tacs"), but it may have been 30 mg. Anyway, I took the first dose about suppertime, basically totally disabled, and woke up 12 hours later symptom-free. It felt like a miracle.

The taper followed. The rheumatologist prescribed a single dose, but circumstances quickly had me move to the split dose, settling after experimentation on a much smaller evening dose. The only two flare-ups I have had to date have been when I tried the single dose (at the urging of the rheumatologist). Won't go down that road again.

It has been hard for me to sort out what is PMR pain and what is normal old man (73 yrs) stuff. I thought for a long time that hip pain in the inner hip was due to PMR but the rheumatologist pointed out that the inner hip (groin) is not characteristically a PMR issue. Sure enough, some PT cured it. At present the worst symptom, which may or may not be related to fluid retention caused by long term prednisone, is carpal tunnel syndrome in my dominant hand. Seeing a hand specialist soon to talk this over.

At present I am at 4 mg, 3 in the AM and 1 at bedtime. My next taper happens tomorrow, and I will go to 2.5 mg in the AM and 0.5 in the PM.

I have also been on Kevzara for four weeks, injecting myself every two weeks with a 200 mg dose. I have not seen any blood work since starting this med. At the time I first took it the PMR markers were rising slightly.

There is nothing straightforward about this condition. We are all fortunate that we do have an effective treatment for it, albeit one that comes with its own problems. To live with this malady without any effective means of treatment is almost unimaginable. I wish each of you luck in finding the path that is best for YOU!

So, drop to 25.