Onset

[Gary1310]

Wondering how long it takes for PMR to present itself. I was diagnosed in January, 2019. Had my first flare in December. About 10 yrs ago my feet started swelling with numbness. Wonder if it could have been the start of PMR. Unusual fatigue started about 2 yrs ago.......saw my Rheumatologist on January 16. Now tapering from 20mg. to 9 mg. Reducing 1 mg every 2 weeks. I am doing well.

[PMRpro Ambassador]

It depends. Many doctors insist it starts overnight and if it didn't it isn't PMR. I noticed my shoulders were stiff and it was uncomfortable to sleep in my usual position with my arms above my head in the early spring. In the summer it as increasingly hard work in step classes to get up onto the step and in the autumn I went to use the cross trainer to train for the ski season and developed excruciating thigh claudication. The GP I saw was baffled (nice, but a bit thick!) as my bloods were in normal range (though they may have been raised for me, I don't know the numbers). It got steadily worse, more stiffness and pain developing including bursitis, swollen feet and hands and not being able to turn over or get out of bed. A rheumatologist insisted it was due to OA, 13 years later there was no sign of OA in the knee in which she claimed she could "feel" it.

It took 5 years to get a label, identified by me after I finally couldn't move overnight. It happened at the same time as a transient global amnesia - one cause of which can be cranial vasculitis it is now thought and I had had some GCA symptoms for a short time.

Swollen feet and hands can be due to RS3PE syndrome (google it) - and there are thoughts it can be a forerunner of PMR.

[Cross-stitcher in reply to PMRpro]

Overnight, my foot !! Surely it takes time for the excess inflammation to build up to the point where the classic PMR symptoms show themselves, and blood markers become high?

In my case, I started feeling weaker and increasingly achey throughout February this year - I found I couldn't grip properly or lift anything heavy, and stairs became a trial, but a combination of Ibuprofen and asking for help from OH meant that I kept going. I didn't consult the GP until early-March, by which time I had the classic bi-lateral pain in shoulders, hips and thighs, was finding it difficult to dress myself, reach up into kitchen cupboards, etc - some days I could not even lift the kettle. She initially tried me on a strong prescription NSAID but two weeks of that showed no improvement. By the next appointment, I was hobbling and in tears and almost suicidal with the constant pain and exhaustion and lack of sleep. I had had to stop driving and gardening and was totally dependent on OH and was feeling "housebound and stir-crazy" on top of everything else. At that point, she put me on a Pred "trial" and sent for bloods, which gave a very rapid and positive dx for PMR.

I think I was very lucky to get a dx so quickly. "My" PMR seems to have developed over a period of 6-8 weeks, from fully-fit to almost suicidal from the agony and depression. But I guess everyone's journey will be different.

Currently tapering from 10 to 9.5 Pred, so far with no problems apart from insomnia and carb-cravings !!

[PMRpro Ambassador in reply to Cross-stitcher]

I think what probably happens is that the "slow" onset isn't noticed but I have often asked patients on the forums and when they think about it they realise they had had mild symptoms before. But honestly - you will find statements about the sudden onset in the medical literature. I snort when I see them too!

[Woolyhead in reply to PMRpro]

Honestly, mine did come overnight, so it does happen. I had no pain at all. The strange thing was, I had a replacement knee the month before which was absolutely painless, everyone else was on morphine and opioids I was on paracetamols, which quite honestly I didn't need and stopped taking when I left hospital. The medical staff couldn't understand and neither could I because I'd had the other knee replaced the year before and that certainly wasn't painless. I have wondered since if somehow this painless knee op triggered something off on my immune system.

[PMRpro Ambassador in reply to Woolyhead]

It isn't uncommon for surgery to be the final insult to the immune system before it goes haywire. If so, then your onset would be quite fast.

[Woolyhead in reply to PMRpro]

Yes. It was thought to be fibromyalgia at first because that can most definitely be caused by body shock according to research. PMR is a little more hazy. It’s said that they’re not sure what causes it. I’m sure mine was caused by a shock to my system. It makes me question how much research is being done. It seems like not enough.

[PMRpro Ambassador in reply to Woolyhead]

Anything that upset the immune system - not one particular thing but a confluence of things. And on that basis - no, no-one knows what causes it.

[Woolyhead in reply to PMRpro]

I'm sure there's some kind of logic there. 🤪 The cause of PMR is an over reaction by the immune system. I've relied on the internet to supply information, there seems to be a number of causes mentioned for fibromyalgia but nothing (that I can find) for PMR. Btw I do agree with what you say.

[Woolyhead in reply to Cross-stitcher]

Mine did come overnight, I'd had a replacement knee in the November and came out of hospital with an awful fatigue with I put down to the operation. December I went to bed, I felt fine, I woke up and there was not a part of my body which didn't hurt. Even my scalp was burning. The pain was excruciating. I couldn't even lift the bed clothes off me.

[Q-owl]

You may notice the taper more if you continue at 1mg every 2 weeks. The general guideline is no more than 10%, that's per month, I think. There are links to tapering on this site somewhere.

[PMRpro Ambassador in reply to Q-owl]

Well, 10% at any one time really. Some people can manage it ever 3 weeks, or even 2. And others may need more, as much as 6 or 8 weeks.

[HeronNS]

Go by your symptoms regarding speed of taper. I was able to reduce by 1 mg per week from 15 to 10, but 9 was a step too far and I went back to 10 for a couple of weeks then started the dead slow taper, which I've followed ever since, tweaking it according to need.

Also I think PMR developed with me over several years. I'm reasonably certain I had PMR for about 14 months before it was diagnosed, but in looking back I can see a time when I thought I was suffering the stiffness of old age and osteoarthritis, but the symptoms now that I know better were much more like PMR as I came to know it a few years later. It would have been about seven or eight years before the real onset, and in the interim I just carried on with little trouble, usually feeling okay. It was the piling on of a number of stressful events which eventually made me really ill.

[Gary1310]

Describe, please, the dead slow taper...??

[PMRpro Ambassador in reply to Gary1310]

healthunlocked.com/pmrgcauk...

[Woolyhead]

I went to bed a youngish 70 year old and woke up like an old woman. I couldn't even lift the bed clothes off me. I have numb/frozen/ burning feet (obviously not all at the same time) . My scalp was sore all over, thighs, knees, shoulders, arms, neck. I was fatigued to the point where I could barely stay awake. I was diagnosed with folic acid deficiency at the same time so I don't know which was Anaemia and which was PMR because they have similar symptoms.

[Woolyhead]

I know you can have fatigue with PMR but it may be worth having yourself checked out for Anaemia.