confused?

[violetsnowdrop]

Hi all

After many months of normal? reducing since returning to 15mg I now find myself back at 7mg but with a pain increase from the bursitis/tendonitis in both shoulders. I have been suffering from unexplained headaches (sometimes very sharp and of 20 minute duration-left temple area but mostly across the front of the head lasting anything up to 24 hours). GP has tested sinuses,chest,eyes and ENT, but referred to local hospital in case of GCA. An emergency blood test at Hospital- ESR was 50 and CRP 16 ( both normal range for me). Duty doctor referred results and symptoms to my rheumy who stated that, in the absence of jaw pain and sight problems it was not GCA (Phew!). Eye test was the Snellen chart with glasses on and one eye closed--right eye was graded 6/6 but the left eye was 6/9. Subsequent full eye test at opticians demonstrated a 3 point drop in the left eye as opposed to 1 for the right since last year. Any thoughts as I have the impression they're hoping it (and I) will go away?

[PMRpro Ambassador]

Your rheumy is wrong - jaw pain and sight problems may be TYPICAL for GCA but they are not present in all patients by any means. Finding another rheumy would be a good start. An ESR of 50 and CRP of 16 may be "normal range" for you - but they are indisputably elevated and suggesting there is unidentified inflammation somewhere which needs identifying.

Your bursitis/tendonitis in the shoulders might be the cause and may respond to local cortisone shots - and I would suggest a few sessions of Bowen therapy (no surprise there) which you don't need to seek permission for from a doctor! I had severe neck and head pain which was referred from my shoulders and did respond well to Bowen.

Where are you?

[violetsnowdrop in reply to PMRpro]

Hi PMR Pro/Celtic

The ranges for ESR/CRP are the ranges that I have had since 2009 prior to a total knee replacement and the subsequent onset of lymphoedema in that leg. The report from Milton Keynes Hospital states that I have POSSIBLE polymyalgia and that I remain under review of my rheumy. So all the bilateral leg,hip and shoulder pains/stiffness are symptoms of what exactly? I have been allocated a rheumy appointment for 05 June so questions to be asked! NB: my lymphoedemic leg is relatively normal at present (i.e. minimal swelling). As this normally affects blood sugars greatly I would have seen the difference (by 2 different methods).

I will definitely do a 3 day trial at 10mg to pinpoint any variance. Any port in a storm! Thanks again.

Bev

[Celtic PMRGCAuk volunteer]

I'm not quite sure what you mean by your ESR and CRP blood tests being in the normal range for you. Few of us know what is normal for us as it's unlikely we had need for the tests pre PMR when we were well. Certainly a CRP blood test of 16 is not normal - it should be anything between 1 and 5. So perhaps this, together with your symptoms, does point to some sort of inflammation going on. You could try increasing the dose for a few days, perhaps to 10mg, to see if that would relieve your symptoms and provide an answer. In my case, a consultant ophthalmologist has been preferable to a high street optician for reassurance as far as GCA is concerned.

[DorsetLady PMRGCAuk volunteer]

Hi violetsnowdrop

Can I chip in with others, my ESR was only 68 when I was diagnosed with GCA (and as you all know one eye already lost) so I wouldn't be too sure that a reading of 50 is normal. And, as I've said before, my GP always says lots of different things affect that reading, so don't place too much faith in it alone. Try increasing your dose as suggested by PMRPro, but don't be complacent that everything is under control. It may well be, but on the other hand....

[piglette]

I have a current CRP of 5 and ESR of 52 and my GP seems to be worried sick about my high level of ESR and wants to rush me off to a consultant as quickly as possible to see why it is so high. So I would not say that an ESR of 50 is normal, although I do agree my GP may be over reacting a bit.