Pmr diagnosis advice please

[Phoebess]

I was diagnosed with GCA/LVV 4 years ago. Finally got off prednisolone about 5 weeks ago, but still taking Mycophenolate. My synacthen test was fine ( can't remember the readings, but its been done 3 times)

I did a very slow reduction in prednisolone, but since stopping ive increasingly been suffering lots of aches and pains ( right side of neck, both triceps, both iliac crests, lower back and the tops of my thighs , and tingling in my fingers) . I have to furniture walk in the mornings, and eventually the pain and stiffness lessen, unless I sit still for a while. By the evening I feel as if I can't hold my head up any longer so I go to bed . I had bloods taken and esr was 8, crp 2. Consultant rang Friday evening and was going to ask the labs to add in a check on my muscles. ( I can't remember what he called the test ....CK I think) He doesn't want me to restart steroids.

I'm feeling as if he thinks I'm a hypochondriac !

Does this sound like PMR to you ?

[DorsetLady PMRGCAuk volunteer]

CK? Could be this -

Creatine Kinase (CK) analysis involves measuring the levels of CK enzyme in the blood to assess muscle damage or heart-related conditions.

Don’t think consultant can dismiss PMR with your history and current symptoms .. and if that’s the diagnosis then steroids it is… but they also have to rule out other things as well.

Hope you get some relief soon.. and please let us know.

[PMRpro Ambassador]

Short answer - could very well be PMR symptoms because the underlying autoimmune activity is no longer being managed by a low dose of pred. You would probably be fine on a very low dose - even 1mg is the difference between inflammation building up and not.

CK, as DL says, creatine kinase, is a test for a similar condition to PMR in terms of symptoms called myositis, inflamed muscles. Your doctor i ooking for a zebra when the most likely horse is PMR because of your history of GCA/LVV. Bit strange since the treatment for myositis is a higher dose of pred than needed for PMR!!

[Phoebess in reply to PMRpro]

Seen by consultant today, who has agreed my symptoms are those of PMR and have started on 15mgms pred daily.Follow up next week, and he has suggested a PET scan if no improvement

Thank you once again PMRpro and Dorset Lady

[DorsetLady PMRGCAuk volunteer in reply to Phoebess]

You’re welcome - hope he doesn’t expect too much of an improvement within a week— some hopefully, but not everybody gets the miraculous results some doctors assume they will..

Good luck …

[PMRpro Ambassador in reply to Phoebess]

It worked for me in 6 hours - but that isn't always the case, Some need days, some need weeks if the dose isn't high enough at the start,