At Wits End

[Cheshy72]

Hi everyone,. I have been experiencing shocking pain in my shoulders and arms for about 3 months. It seems to be PMR so I was horrified after 2 blood tests showed no inflammation and my Doctor was perplexed. He said he cannot prescribe prednisone as he needs proof of the condition. I really don't want to take it but can't go on waking up every morning unable to get out of bed.

[DorsetLady PMRGCAuk volunteer]

Hi Cheshy72,

Sorry to hear you're having problems. Unfortunately many doctors don't realise that some patients never have raised blood markers despite having many of the other symptoms of PMR and/or GCA.

All you can do is go back to him again, and discuss the matter and if he can't come up with a better diagnosis based on your symptoms ask him to at least try Pred for a week and see if that makes any difference. That short amount of time won't do you any harm, if it doesn't work then you just stop and look for other options.

You might like to remind him - gently- that should it be GCA, then left untreated it could lead to blindness, and he wouldn't want that to happen would he? That usually gets their attention.

Good luck.

[PMRpro Ambassador]

This is the reply I posted on the other thread where you asked the question:

Up to 20% of patients with PMR have been found to have ESR levels that are within normal range. Most authorities feel that CRP is mostly raised - but I don't agree, there are at least 5 people on the forums with PMR/GCA who have perfectly normal levels of both.

It never ceases to amaze me how doctors won't try a week of pred as described here:

rcpe.ac.uk/sites/default/fi...

to see how you respond. If he has ruled out the other things as described here:

uptodate.com/contents/clini...

then he could assume PMR as a likely option. If pred works at a moderate dose (15-20mg) the answer is fairly straightforward.

Show these two papers to your GP and ask him if you can try a week or two of pred. If it works you are at least pain-free while he thinks of other things. Pred is far less dangerous than long term pain medication - which doesn't work in PMR anyway, pred is the painkiller here - as described in this recent article which you can also wave under his nose:

practicalpainmanagement.com...

One of the authors is a top expert in PMR, involved in drawing up the guidelines.

If your GP won't accept evidence from the experts - it is high time you found another GP and at the very least, after 10 weeks of symptoms, it is time for him to refer you.

[markbenjamin57]

Hello Cheshy72

I second what DorsetLady says. From what I've learned here (and if I'm correct?), low /normal inflammatory markers (ESR / CRP) are NOT necessarily a reliable indicator of an absence of PMR disease activity. As the Aunties / experts say here, Symptoms Rule - and are usually the most reliable indicator. Although I'm not a medic, your symptoms sound like classic PMR.

At the onset of my crippling PMR symptoms (2-ish years ago), my GP correctly interpreted them as PMR and immediately prescribed the Preds - which miraculously relived the awful pain and stiffness by 90% within literally a few hours. A Rheumy appointment several weeks later confirmed a formal diagnosis of PMR, and the rest is history. Even before a formal dx, my blood markers (ESR in particular) were relatively low / normal, and always been throughout.

It sounds like your GP is being understandably cautious about prescribing the Preds: but, as DL says from bitter experience, there is also the risk (however small) of GCA if your symptoms are left untreated - and this is far more serious. I suggest you go back to him and diplomatically state your case again - perhaps armed with the wisdom from this forum AND some official blurb from the BSR / PMRGCAuk websites?

Also, push for a Rheumy Appt ASAP - and possibly consider going Privately if your GP still digs-in around prescribing the Preds.

Hope this helps - good luck and keep us posted?

MB

[Cheshy72 in reply to markbenjamin57]

Thank you all for your replies. I will be going back to the Doctor this coming week. Cheryle