Is PMR coming back? I don't think so but value your comments.

[Thomas45]

In mid -December after being on Prednisolone for 3½ years I was down to 1mg every 7 days and decided to stop taking any. I felt fine, and generally do at the moment. There's just odd occasions when I have aches. It's my shoulders and neck which ache sometimes when I'm stood up. The ache takes about half an hour to subside if I sit down, but comes back if I stand up for more than a couple of minutes. I put the aches down to my height, 6' 7" with long legs rather than long body. Any thoughts? I still have days of intense tiredness.

[DorsetLady PMRGCAuk volunteer]

Hi Thomas,

Well done on getting down to zero. I've been off Pred since Sept last year, and still get bouts of tiredness, but they do seems to be getting fewer. I think it can take your body anything up to a year after stopping Pred to get back to 'normal'! Plus of course, we're all older than we were, which doesn't help.

I have aches and pains, but I know what they are - arthritis. Perhaps you should get your shoulders checked for anything muscular, it's seems strange that they don't hurt all the time. It might not do any harm just to get your inflammation markers tested in case there is a residue of PMR lurking.

Take care.

[PMRpro Ambassador]

Sounds like a back muscle problem to me - I have myofascial pain syndrome and it causes intermittent pain. Originally when it was really bad I couldn't stand or walk for long without low back pain which could be excruciating. An orthopod I saw said it was wear and tear and I'd have to live with it. The pain specialist and a physio both were horrified he couldn't identify it - and sorted it beautifully!

[Hindags in reply to PMRpro]

I'm curious about the relationship between myofascial pain tendencies and PMR. I tend towards myofascial pain. It took a long time for it to be diagnosed. My experience has been that myofascial pain is poorly understood by practitioners who don't manipulate patients or who aren't pain specialists.

Thankful for botox in my neck and osteopath for everything else. As much as I want to be able to taper (very slowly) off the Pred, I dread the return of the old aches and pains that came with arthritic changes in my spine exacerbated by being somewhat hyperflexible so I get out of alignment easily. I can see myself wondering whether I've tapered below what I need for the PMR or whether without the Pred, my old body aches have come back. How does one know?

[PMRpro Ambassador in reply to Hindags]

Yes, I think you have summed it up very well - at least amongst English-speaking healthcare professionals. It's a very different matter in the German-speaking medical world. It's been acknowledged for a good 30 years that I know of.

They are caused by the same inflammatory substances - in PMR they are systemic, all through the body, and in MPS they are concentrated in particular in the trigger points. I think they also lie in the fascia (the transparent skin that surrounds large muscles. That has been shown by some research done in Germany/Austria. The lecture was first given at the company for whom my husband was doing consultancy, he came home and told me about it. Then it was repeated at a mitochondrial meeting I was at some months later - we had a LONG discussion about it on the way to dinner. There are a few rheumies who are beginning to look at the concept of there being different components - and when you treat the MPS ones as an entity, the PMR ones do better.