Been Out Of The Loop But Back With More Questions On PMR Relapses

[SARose]

All, I haven't been active for about a month but continue to read the posts as I can. Down to 3mg taper ( 1MG a month) now I am really starting to feel what I believe is the return of my PMR symptoms. When I spoke to my Rheumatologist about 2 months ago they were vague pains. She felt it was not a flare and to continue to taper. Now aching and soreness in the fingers, slight ache in the shoulders and shoulder blades. Today I have a lot of pain in my right hip. When I bent over it continued down the back of my legs'. She has me unsure if this is a true flare or arthritis? I described the ache of PRM as coming from the bone and she did agree on that point. One point of good news. I bought a pair of Crocs foam clogs when my granddaughter got hers and they're helping my back pain when I walk.

All advice most welcome

Signed,

Unsure of my symptoms

[jinasc]

Diagnosed with PMR in February 2020. That is just year since you were diagnosed.

Not many patients with PMR and/or GCA goes into remission in less than two years.

In fact since 2008 when I started on that journey, I have not met one.

Down to 3mg is very fast and it looks like you PMR is back. Perhaps two of three days of 10mg might help you make up your mind.

If the pains subside then wait a week or two and try coming down by 1 mg a month till you get back to 5mg and then pause, watching all the time for the pains to come back . Pred does not cure, there is no cure yet. Pred helps you to manage and live as pain free as possible

It would be a good idea if your Rheumy had looked at some statistics.

Other will be along shortly to help.

[SARose in reply to jinasc]

Many Thanks - feel better that I need to trust what my body is telling me.

[piglette]

I have learnt that as soon as you start feeling any sort of pain with PMR STOP reducing. Hang on for a while until you feel OK or even increase a bit. If you carry on reducing PMR will always win.

[PMRpro Ambassador]

One thing I wouldn't say about PMR is that the pain seems to come from the bone - it is soft-tissue related but it can make joints feel very uncomfortable. Hamstring pain IS found in PMR though and isn't arthritis - if she thinks it is osteoarthritis, has she done x-rays to show it?

I would take it as a sign to at least slow down/stop the taper - you are under 5mg, only half of patients get to 5mg sustainably in 18 months, you are way ahead of the curve, and if you need to go back to 5mg to get the pain sorted she shouldn't complain.

[CarolF1312]

Hi there, sounds like we're experiencing similar problems. I started with PMR in Jan last year, diagnosed and started treatment in June. I've tapered relatively easily down to 4.5mg but have recently started with some aches and stiffness mainly in shoulders and knees. Very disappointing! Following advice from this forum. I'm sticking with 4.5mg for now but may have to increase if stiffness gets any worse.Hope all goes well for you.