PMR specialist

[Singr]

I'm realising on reading some of these posts that I've been diagnosed but left without enough information about what this condition is and no advice about getting more information. It has also been talked about that the symptoms were waist down but for me they were all over my body. I note from these posts that others have experienced the same. It was also said I have osteo arthritis but given no information or guidance about this at all. I think I'm going to go for a second opinion or try to go privately to find out more. Any recommendations for PMR specialists?

[SheffieldJane]

Where are you in the country? My Rheumatologist is wonderful and is a particular leader in the fields of PMR and GCA. She is Sarah Mackie, based at Wharfdale Hospital, Leeds. Your GP may well be able to refer you to another Rheumatologist for more support er than the none you have had thus far.

[Hidden]

Looking at people's experiences PMR seems to have a mind of its own. Some suffer more below waist some in arms and should. Some start at feet and hit everywhere. Has the pred helped??

In terms of OA it is usually a case of keeping as mobile in joints with pain controlled with otc drugs. With PMR and it seems generally these days a supplement of calcium and vitd3 advised for bone health. I am sure there will be more experienced advisors along 're referrals. I basically managed OA for last few years by research books on its management and living with the pain as recommended by pain clinic.

[Ronnie101 in reply to Hidden]

I saw on BBC yesterday there is a company in the US Unity Biotechnology, who are producing a drug to reverse OA. Trials are on going but it looks promising.

[jinasc]

Visit these websites:

PMR GCA UK

PMR GCA Scotland - self explanatory

PMR GCA Northwest

and PMR&GCAuk North East Support.

on the latter's home page there is a map, click on it and see if there is an actual support group near you.

Read all you can and most of the information on those sites you are able to download.

Knowledge is Power.

[MaryA_]

Mine started all over the place. It wasn’t until after I started the prednisone that symptoms seem to center on a particular area. As of late it’s the extremities. It has a mine of its own!

[valrene]

Mine started in knees,legs and feet 5mths later started steroids when I started reducing pmr then started in all the rest of my body xx

[PMRpro Ambassador]

Here is a link to another forum, the third post down is our reading list and link to other resources such as the charity sites.

patient.info/forums/discuss...

including all the ones jinasc has suggested.

Have they provided proof of OA? I was told by the first rheumy I saw that I had OA in hands and knees, "she could feel it". After eventually being sort of diagnosed with PMR and being given pred, all the so-called OA symptoms disappeared: they were associated with the PMR. No-one else has ever suggested it. Above all, the hip pain I had was trochanteric bursitis - not OA.

If you want a recommendation you will have to tell us where you are and how far you are prepared to travel for a good doctor.