PMR, prednisone and fatigue

I don't think anyone here can really answer your question - it is a different disease and ours is only managed with pred so it is a different situation.

However - if a patient has been on pred for 10 months, most experts would slow the reduction down to less than 2.5mg at a time once they got to at under 10mg/day. It is said that tapering takes about 1 month for every month the patient has been on pred - and that is a conservative estimate. It can often take longer. Is no-one supervising her reduction closely?

For most, bilateral pain in shoulders and, probably, hips is characteristic of PMR, and my pain has been entirely symmetrical.  I only experience fatigue and fogginess when tapering too quickly.  My doctor is Google and this forum.

As for very heavy exercise, once on Pred I can do just as I did before the PMR.  Good as gold!

"The rheumatologist is concerned that I may have something else  because a people don’t bike 20 mile with PMR?"

Oh yes they can - and ski and run and all sorts of things! They need to have been fit before PMR arrived and after PMR arrives they often have to start training again at a much reduced level. But well managed and going about it the right way you CAN ride 25 miles. 

I skied for several years with PMR. at first without pred, later with. Every December I had to start all over again for the season - the first day was 3 very short runs (lift rests between runs were essential!) and then I went home and had the next day off. After a couple of weeks I could do more short runs - but our mountain is best at the top in the deep winter, you get some warmth from the sun and the views are wonderful so it was no hardship. By early January I was up to double figures short runs and could ski every day - but still couldn't do long runs straight off, I had to have a break half way down. By mid-Feb a long was possible. 

There are people on this forum who have continued with rowing and cycling and some did a lot - I'm not sure if they are still around. I hope they are and post.

My PMR started small - in the spring my shoulders were stiff so I couldn't sleep with my arms above my head. Then I used develop pain in my biceps when holding the phone to my ear. I had a constant sore throat and fairly dry cough. Over the summer step classes got harder to get up onto the step. In the autumn I went to the gym to start training for the ski season - and 2 minutes on the cross-trainer gave me such awful thigh pain I had to stop. I just felt stiff and achey for a long time and the GP insisted there was nothing wrong, it must be mu age (early 50s). Then after 5 years I had a major flare and at the same time was stopped driving for another (incorrect) medical reason - I came here to my appartment in Italy and skied because I was housebound at home as I was having to use stairs far more as we had moved temporarily to a house with 1 bathroom. Here with no stairs I was able to crawl to the ski bus - and the movement of sking made such a difference to the stiffness the pain was bearable. Then I did my homework in the evenings - and worked out what I had. The GP was unwilling to do anything without a rheumy say so - and the rheumy I saw wanted it to be anything but PMR but he did give me 6 weeks of pred, 2 weeks each of 15/10/5 and in 6 hours I had the PMR miracle. He still didn't agree but another GP did - and provided the pred. 

It was the stiffness that went - so I was 70% better in a few days but it took months for the bursitis pain to go. Your doctor was wrong - the 70% at 15mg is optimistic but for most people it happens in a week or so and the most recent recommendations say the lowest effective dose in the range 12.5 to 25mg/day"

I'd say you are teetering on the cusp of your holy grail dose- if you go much further at present you will risk a flare and could end up back where you were - PMR does not last just 2 years and you are not reducing relentlessly to zero pred: you are looking for the lowest dose that gives the same result as the starting dose did. Then you slow down and try the occasional reduction every few months to see if the underlying cause of the PMR has burnt out yet - when it does you will be able to reduce the pred in accordance with the return of adrenal function. But not before.

https://www.medpagetoday.com/rheumatology/generalrheumatology/66912

https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

are two links to articles about the same research but with slightly different emphases.

You mentioned head symptoms briefly?

PS - This is not a new thread, it was last commented on 4 months ago so I suggest you post this as a new thread - more people will see it that way.

"Oh yes they can - and ski and run and all sorts of things!"

Thank you for sharing your PMR history.  As my PMR symptoms were emerging, I skied a couple of long weekends, a fortnight apart.  I was very fit.

During the second weekend, skiing was fine but dragging my skis back to the van, afterwards, was strangely tiring.  Returning home to Melbourne was tolerable as long as I remained seated in the driver's seat. 

A week or two later, the PMR had become so crippling that further skiing was unthinkable despite the excellent snow cover.  Moving in bed and dressing had become painful.  I could still exercise but only to a limited extent, and was losing weight fast.  Tennis and badminton were now problematic and running impossible.

Six weeks after the first hint of PMR symptoms, I began prednisolone and, within a week, I had returned to my normal heavy exercise regime.  Recovering exercise intensity, however, took a couple of months because I had lost weight, muscle mass and fitness in the month before prednisolone.

During the 5 months I've been taking prednisolone, PMR has had no impact on my exercise regime.  It's a wonder drug!

Thanks ,

Most of my early symptoms ( first 7 months ) were in my head .Its the same feeling I have now of fatigue , fogginess and a little light headed or dizzy. The world doesn’t spin around .

I was wondering if any one else’s symptoms started in the same manner . It was the same feeling as when PMR really hit hard but to less of a degree. 

As I wean off the Pred the head and body are taking the toll.

ill yer to post again as a new thread!

The brain fog and stuff is quite common in almost all autoimmune disease - but really, everyone is different in almost every aspect, their symptoms, how they respond to pred and how they are able to reduce the dose. That's what makes it all so difficult - it isn't entirely the doctors!

My noticeable symptoms started in December 2015 when I pulled a shoulder muscle and gradually over the next couple of months I couldn’t roll over in bed easily. I was sent for Physio but then the other shoulder started hurting. By September 2016 I was pretty sure I had PMR as my hips were hurting, as were my elbows and wrists and the back of one knee. It would take me half an hour to manage to get out of bed. Anything dropped on the floor was lost. I had to drive to work in wrist splints. Eventually I found a good GP in my practice who could see it was PMR and I was on prednisolone and symptomless within 7 hours. I could do anything! Loved the euphoria. Now I have vvv slowly reduced down to 8mg, I still have no PMR pain (although some other aches and pains I forgot about have popped up) BUT I am very exhausted now that my own adrenals are supposed to be taking up the slack. 

The thing is that, for about five or seven years prior to PMR, I had been investigated for extreme fatigue - including two overnight stays in a sleep clinic. Brain fog and so tired I thought I’d vomit  - you know the sort of thing. Anyway, they decided I had idiopathic chronic fatigue syndrome. Except my daughter had ME and I had none of the usual symptoms such as sore throat. Since my PMR diagnosis, I’ve come to the conclusion that the fatigue was the precursor and first symptom. Now I’m on 8mg I’m starting to get that same awful fatigue, so I’m sticking here for a bit to see if it calms down in the same way I would if I was suffering from slight hip ache. 

In my late 20s I had something like you describe - except in those days CFS/ME was still yuppy flu and by the time I got an appointment with anyone it was improving! It took about 4 years not to feel I was falling over when I got to the top of the stairs and some years later my gynae thought it might be early menopause. HRT certainly helped a lot and did so for about 13 years until there was one scare story too many and I stopped. Within a couple of years - PMR. I really don't think it was coincidence...

That interesting that you’ve had a slow taper since 2016 and now you suspect it’s the adrenal glands not starting to work yet . My rheum.. might want to test me for dependence  after dropping to 6 mg in 8 months ! I just did a separate post with this topic in mind !