Hi I’m new to site, found it provides a great source information reading all the posts and comforts me knowing I’m not alone in my struggles with PMR. Started with symptoms July 2017 and finally diagnosed with PMR November 2017. Tapering steriods and not doing too well at present
Please can anyone recommend a good well researched Rheumatologist with a special interest in PMR in the Northumberland/Newcastle area. Would also like to know if a local support group exists
Thank you
What lovely dogs!
I don't know about rheumy but believe pmrgca Uk is based out of Newcastle. Perhaps follow links to their website.
Woof!
Thank you for prompt reply will that link up, poor woofs don’t get the long walks they deserve any more
They will again and they are very adaptable. Lots of cuddles with them helps both you and them. I am lucky that my cocker is ball mad. I sit and throw ball with long thrower and if I had strength she would do that all day. I just go to somewhere where there are lots of benches and spend more time sitting than walking.
Ps
How fast are you tapering. November not long ago. Did you start on 15mg. Sorry. Got distracted by dogs and forgot to ask lol.
Probably to fast, started on 15mg and now down to 5mg as per medical advice, symptoms started to return but still at least 50% better than the level Of pain I felt prior to starting steroids.
With reference to the dogs, it’s an old photo, pup is now fully grown and full of energy. The pair of them are a pure delight and great company, unfortunately hubby is now the full time walker, this pmr is so frustrating.
Omg. That is VERY fast especially if you have symptoms. I got to 8mg and felt terrible. Go put me up to 12mg after 5mths then rheumy put me up to 15 again last Feb and I am tapering down to 9.5 from 10. I was on 10 for at least 2 months and tried 0.5mg per 2weeks to 9mg and after 2 weeks there got achy painful thighs again. Hence up to 10mg again. The new rheumy I saw said to manage symptoms and taper as slowly as I need to which was a breath of fresh air.
You will be joining OH soon hopefully. There are several links on pmrgca Uk about slower tapering etc. I printed stuff off and took to gp when I was feeling worse. Good luck!!
Well I suppose it’s early days for me and I always try to be a realistic optimist so by no means do I consider myself out of the woods as the pain in my shoulders and arms are most certainly evident again however my hips seem ok at least for now.
Reading many of the posts it’s definitely a very unpredictable condition
Thanks again much appreciated
There is not only a local support group - but also your own local charity! It was the first in England and the forerunner of the national group.
They have a helpline who will advise on the best local rheumies - they have changed a bit recently as at least one had retired. There are support groups based in Gateshead and Middlesborough. Where do you live?
Thank you for that info, didn’t realise I was so much in the center of the hub, will follow this up tomorrow. I live just north of Newcastle but more than happy to travel if needs must.
Thanks again
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