PMR Relapse or not ?

[josvanloo]

Hi Everybody

I would appreciate it if some of the long time specialists on this panel could read my post and comment . Thank you

I was diagnosed with PMR in March 2015 and took steroids until Aug 16. Everything back to normal - although my GP helpfully told me I would probably relapse. Got very active again etc ... but a new job on Oct 1 2018 caused a lot of stress. I had various weird symptoms (sweating a lot at night ) - GP visits , 4x blood tests , visited Endocrinology specialists , 24h urine sample collections etc ... - they tried it all but no final diagnosis. The sweating has stopped 3 months ago, but now i feel "rheumatic" . Now some of the typical PMR symptoms are back - stiffness in the morning for sure, sleeping poorly at night, more difficult getting out of a chair ... Went immediately to my GP for a blood test - which is negative - no PMR. Good news but ...

- can these blood tests ever be wrong ?

- the pain/discomfort is in completely different parts of my body (more thighs now - used to be upper arms and shoulders ) . If you relapse would the same parts of your body be affected ?

- my symptoms are definitely milder than the first time around. Is there some cut off value used in these blood tests ? . Does it have to get worse by leaving it untreated before you hit a certain blood count threshold ?

Not sure if anybody can help me, but thank you for trying anyway . Jos

[PMRpro Ambassador]

There is no "negative for PMR" test - there is no test for PMR. It is a clinical diagnosis based on the symptoms and response to a moderate dose of pred. About 20% of patients with PMR and GCA never have blood markers (ESR and CRP) for inflammation that are outside the normal range. That doesn't mean they aren't raised for you - my personal normal ESR is in low single figures. It bumbled along at 16-18 for several weeks some years ago during a severe flare - never out of "normal range" but high for me. No-one even noticed it at the time!

What was your ESR the first time round? At what stage was it raised? Not that that makes any difference - everyone I know who has had two episodes of PMR with a good space between them says that the two lots were totally different in almost every way, even the symptoms were different. But I'd say this is potentially a relapse - and that it wouldn't hurt your GP to try a moderate dose of pred to see what happens. It is also possible that your PMR is a herald of another autoimmune inflammatory rheumatism/arthritis but it hasn't fully developed yet. But if moderate pred does the job - that is what you need at present.

You may find this interesting/helpful, I don't know:

ncbi.nlm.nih.gov/pmc/articl...

[josvanloo in reply to PMRpro]

Thank you PMRpro - I will print this out and take it with me to my GP

[josvanloo in reply to PMRpro]

To close this post. GP suggested rather than tapering down to control the relapse , to go up in 1mg doses to see what the minimum dose is. Interesting suggestion but not necessarily an easy one. Think it is 2mg . Swimming back to normal - walking up hill 80-90% . One test for people with PMR could be meditation - did not notice this last time around - but sitting still for 1 hour without moving a muscle is really hard if you do not have the right dose

[Hidden in reply to josvanloo]

Thanks for that. I had dexa and x-rays a few weeks ago I cannot stay still at all. As soon as I try I tremble. 🙄

[PMRpro Ambassador in reply to josvanloo]

Usually takes longer to get control - if it is a real flare then you may just let the inflammation get to a higher level in the meantime - until you get on top of it it mounts up and too little pred is still too little pred. If I had sat still for an jour without moving a muscle I might have taken all day to move again!