Firstly, thank you Kate for setting up the charity and this forum.

[BromleyPen]

My mother was diagnosed with PMR when she was 64. She is nearly 91 and still has it. There were a couple of years when she was off steroids but for the most part she has been on them ever since the PMR started. She has quite a cocktail of medicines for various things that have probably been caused by the steroid years but she does amazingly well.

I was diagnosed by my doctor with tendonitis in my left foot last summer. I was 64. After the recommended physio, some of which made the pain much worse, and then wearing an aircast walking brace for six weeks, the tendonitis disappeared the day I was due to see the physio. However, at the same time my arm started to hurt and the physio diagnosed tendonitis.

Within 24 hours the pain was everywhere and last November the doctor, after a blood test, diagnosed PMR. He has never really agreed that the tendonitis was connected.

I was started on 15mg of pred which was reduced to 10mg after about 4 weeks. The aching started again so I went up to 12.5mg and then reduced by 1mg back to 10mg. At 10mg my foot ached a little but otherwise all was well. When I reduced to 9mg and then 8mg the pain returned so now I am back on 10mg and reluctant to reduce for a while.

My foot is painful most of the time. In the mornings I can't put any weight onto it. The ankle is slightly swollen too. I can walk - but badly. I am concerned that this will cause other problems as I probably put too much weight on the right leg to compensate for the left one.

The fingers in my right hand feel puffy and three of the fingers in my left hand go regularly into cramp.

Reading about the back pain Annodomini mentions in her question I am very pleased I don't have that!

I am seeing the doctor tomorrow - my last appointment lasted about 4 minutes as he was running late! He doesn't seem to be interested in viewing the foot/ankle problem as part of the PMR. In fact the only thing he (my mother's doctor reacted the same) thought relevant is that my grandmother died of pernicious anemia.

I plan to ask for an appointment with a specialist. Are there any who specialise in PMR or is PMR a branch of rheumatology? Is there a link between pernicious anemia and PMR?

PennyW

[Polywotsit PMRGCAuk team member]

Hi Penny

We don't have any research evidence published of a link between PMR and pernicious anaemia. We could put a general question to our medical advisory panel, though it may draw a blank. Good luck with asking for an appointment with a specialist. Everyone with PMR deserves one!

Hope it goes well at the doctor's

[BromleyPen]

Saw the doctor on Thursday and he seems to think my dose of 10mg is too high but I have so many aches in my arms, legs and my left foot, especially in the mornings, that I don't want to reduce further until things are better. When I went down to 9mg things got much worse.

The doctor said he had about 100 patients on his books with PMR and that most reduced much more quickly. He says he is not 100% certain I have PMR. This is after several blood tests over six months so very frustrating. He agreed to my suggestion I should see a specialist but is not sure how long a wait I will have.

I asked if I could see someone more quickly if I went privately and he said if I wanted to do that I should let the surgery know the name of my a rheumatologist. He didn't seem to want to recommend one. How would I go about finding someone if an appointment doesn't materialise soon?