Advice and info please

[lynne99]

Hi, I was diagnosed with PMR for the 2nd time in Feb 15, but I am unsure if it is correct. My ESR was 60, which for me is not too high as since the last time I have never got it below 30. Last time was 20 ish years ago. I have osteoarthritis and had a new knee a year ago. This has been hot to the touch ever since and painful.

I had aches in arms legs and neck when I went to the doctor in Feb and she put me on 25mg pred. reduced to 20 after 1 week. I am now on 17mg and am considering reducing to 15mg on Thursday. The pred made me feel much better, better than I have been for years!! My knee went cool, pain nearly went and I felt a million dollars. Can walk up and down stairs fairly easily now.

Having read your posts on Vitamin D deficiency, I was wondering if the pain from this would be improved by pred and if that could be the problem. I have not had a blood test for this, but would tick the box on my next test , if I knew which box to tick. My daughter has just been told she is vitamin D short and pains similar to me. I would appreciate your ideas and info

Thanks Lynne

[Runrig01]

Hi Lynne99, Vitamin D deficiency can cause symptoms that mimic PMR, and Drs should check your Vitamin D in part of there tests to exclude other cause of the PMR symptoms. It would probably be worth phoning your surgery and asking if they can arrange for your levels to be tested, because it may be that you only need to take high dose Vit D supplements to be free of pain. They do say a large percentage of us Brits are deficient in Vit D, so it should definitely be excluded. Did your daughters pains improve once she started treatment? I see no reason that your surgery would refuse, and they could be incorporated into your next tests when they are due. Cheers Runrig x

[lynne99 in reply to Runrig01]

Thanks runrig. I have the blood form ready to use at the beginning of May. I will tick an extra box but don't know which one is vit D. Thanks for your help. My daughter only started vit D yesterday so I hope they will work, as she can't even cuddle her twins without pain.

[Runrig01 in reply to lynne99]

Contact the surgery and ask if you can bring in form for the Vit D test to be added. Otherwise you may have a disgruntled GP who wonders who requested tests he didn't. I'm sure they will be more than happy to add it on.

[Celtic PMRGCAuk volunteer]

Yes, I agree with runrig about not upsetting the GP, especially as it isn't just a case of ticking one of the small boxes on the form, the actual request has to be written in the large box and the test is a little more costly than some of the others. The end of May is quite a long time away - can you not request another form and have the Vit D test before that?

However, if you have had such a good response to the steroids, that does very much confirm PMR.

[PMRpro Ambassador]

30 is at the upper limit of "normal" or acceptable for ESR. 60 is definitely raised. It may be something else keeping the ESR high-ish - or it is just "your normal". If the new knee was hot and it's improved that is the most likely reason for the highish ESR.

The response to pred makes it look more like PMR than vit D deficiency - pred wouldn't improve that . And vit D tests usually have to be sent away so will require a different form and bottle of blood - you'll have to ask the doctor or get one done privately which is also possible for about £25.

[lynne99]

Thanks all, that was exactly what I needed to know. I will phone doctor when able to and ask about vit D, but as you say the pred would not have got rid of the vit D pain then perhaps it is unnecessary. Thanks again