Anyone living in Britain?

Posted , 8 users are following.

I only ask because we seem to have different treatments here and it would be good to compare notes.

0 likes, 28 replies

28 Replies

Prev
  • Posted

    Yes. North West England. Diagnosed with PMR about 8 weeks ago. Started on15mg prednisone for 4 weeks then put down to 10mg by GP, stuck it for 3 weeks with worsening symptoms so went up to 12.5. Been on that for a week - seems to be doing the job. Have my first appointment with rheumatologist towards end of July.
    • Posted

      Thanks for your response Ibh. Please see my response to Christine and Floramac.  I am unfamiliar with this sort of site  and thought I needed to respond to each person individually. That's why I cut and pasted the second reply!  I am also recently diagnosed and had my first appointment at the Rheumatolgy clinic at the end of May. Hope yours goes well.

      Kate

  • Posted

    North Wales - husband is the one with PMR (but not much use with a keyboard). He was discharged from Medical Assessment unit on 15th June after 2 days of being assessed and seen by number of people and has now been on 40mg prednisolone daily.

    Seen OP rheumatology after a week and then temporal artery biopsy 6 days ago, waiing for results and further decision re meds.

    • Posted

      Hi Jones10939, I often feel sorry for my partner. I know being a carer for a loved one is very difficult.Wish your husband all the best from me.

      Kate

  • Posted

    Bear in mind that the various NHS trusts could well have different policies I'm aware that with a different medical condition that there's a superior test which is free in England but has to be paid for in Wales.

    Different Rheumatologists may well have their own preferred regime.

    • Posted

      Hi Jones 10939, I am quite new to this so I hope that at least it will be an interesting journey!

      Kate

  • Posted

    This is a UK forum so yes, plenty of Brits around! There are far more on the HealthUnlocked forum - run on behalf of PMRGCAuk, the main charitable body for the illnesses. They also have a list of local support groups all over the UK:

    http://www.pmrgca.co.uk/groups/

    But as Jones says - there are people in the US who use similar approaches to doctors in the UK and mainland Europe - the guidelines are published jointly by ACR and EULAR, the American and European associations of rheumatologists. And two different rhuemies on one hospital will have totally different ideas. About the only constant is that prednisolone is the only real option!

    Jones - what superior test? The only thing I know of would possibly be the ultrasound temporal artery scan (other arteries can be looked at too) but that isn't a payment problem really, it is availability of someone trained to do it and it is universally available even in England. It was done in a comparative study against TAB (the biopsy) but it takes several months to learn u/s techniques and that costs money - the NHS doesn't have any... It is done in some places where someone involved in the original study can do it but using a senior consultant to do u/s when they are desperately short of rheumatologists anyway isn't going to happen. Training courses are being done but not enough to roll it out everywhere.

    • Posted

      Hi EileenH, Thank you for the information. I will certainly follow the link.

      Kate

    • Posted

      Eileen - "different medical condition" was the phrase I used - to illustrate that within the UK there are different policies, whatever the initial problem.

      Sorry for any confusion.

    • Posted

      My fault - didn't read the whole sentence in one, if you see what I mean!!!!

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.