PMR or what???

[grannma]

Hi fellow TA friends! Once again I come for help in solving my lastest problem! I have had TA since March 2014 and recently off prednisone (2weeks).

Since October, (1 mg) I have been having a shifting of pain from shoulders, neck, arm, thighs. My sed rate remains 10-12monthly!

We went to Mexico for 2 months and I took Vit.B 12 shots which really helped me (once a month). Now I am home, off prednisone, no shots and continue to have stiffness in my legs, upper arms and shoulder! What in the world do you all think is happening? My go says if it is PMR my sed rate would be high!

Has anyone experienced this?? I have been off prednisone for 2 weeks. I never experienced PMR during TA of which I had the biopsy (positive on both sides). I don't know if it is something that will go away, what can I do to help it leave? Could I have PMR with my SR low. 3 years of pred. and really don't want to go back on it if at all possible-- it was a bear for me! Thank you!!!

[PMRpro Ambassador]

One in 5 patients with PMR do not ever have raised markers - and some people find that they do not rise again when they have a flare or a relapse after being on pred.

However - many people say it takes them anything up to a year before they feel "right" again, including their muscles.

[DorsetLady PMRGCAuk volunteer]

Hi,

Following from PMRpro's comments, I've been off Pred for nearly nine months, and although I feel good, don't think I'm quite back to pre diagnosis yet!

The first few months my muscles were still a bit achy, and still suffered from bouts of fatigue, certainly not on the scale before, but body was still coping with coming to terms with life without Pred and GCA, both of which take a toll in their own distinct ways.

You've just come back off holiday, which no doubt took more out of you than you realise, so don't start panicking yet about a return of GCA/PMR.

Give your body a few more weeks at least, maybe longer and see how things go. Obviously if things get worse rather than better you may have to reconsider your options, but even if it is PMR you won't need the high doses that GCA/TA required.

One thing in your favour is - It's rarer for GCA patients to have a relapse than it is for PMR patients - but please keep us informed.

[grannma in reply to DorsetLady]

Oh, thank you DorsetLady and PMRpro! You both are the greatest advisors with my total respect! I will keep you posted as I continue being off prednisone; TA in remission!!! And.... one other Thank You--- Both of you are so prompt in returning responses, I want you to know it is so appreciated!!

[1Healthnut]

Yes you can have a normal send rate and still have PMR, I did read that... Was surprised at that