The BSR is on our side

[Mayadill]

I know the Guidelines from the British Society for Rheumatology are on this site already, but there are here so many appalling stories of medical obtuseness and ignorance that I did just think it worth highlighting the following paragraph. Printing it out and taking it to your appointment with 'flexible and tailored to the individual' and 'patient wishes' in red, 15 pt bold...

"However, there is no consistent evidence for an ideal steroid regimen suitable for all patients. Therefore, the approach to treatment must be flexible and tailored to the individual as there is heterogeneity in disease course. Some benefit from a more gradual steroid taper. Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes."

[Longtimer]

It needs to be put in large print and taken with us......I don't need to but many do!.....Thank You

[Mayadill in reply to Longtimer]

Hi. Thank you! I never leave this site without feeling how fortunate I have been that all the doctors involved in my PMR have been ace, especially since I timed it perfectly to coincide with Covid! If you do have to go into hospital, first lockdown is not the time to choose. I didn’t have a choice, taken off to A+E on a stretcher, being unable to stand. The ward was chaotic but the medicine was excellent. When I later had a major flare I was thoroughly checked over by the hospital. Otherwise I’ve been left alone to quietly reduce at my own pace.

[PMRpro Ambassador]

The new paper I put up recently, "Treat to target" also says many things we say here and all approved by a panel of experts. The author told me the only reluctance came from the US members of the panel and even they came round. The Europeans were all on-side.

healthunlocked.com/pmrgcauk...

is another to print out, highlight and carry with you to consultations.

[Estellemac in reply to PMRpro]

I circulated the paper to the Yorkshire Support group thank you. It was well received by those not in this site.

[DorsetLady PMRGCAuk volunteer]

Words I’ve quoted many a time - in fact so often I have it saved for easy access…😊

Just wish they would acknowledge that the 2 year scenerio doesn’t apply to everyone….

[Mayadill in reply to DorsetLady]

As you probably know, it's a problem across medicine. I worked in the NHS for 30 years, both times in specialist units dealing with diseases not widely known – scleroderma and myeloma - and saw specialists tearing their hair out over previous mismanagement by DGHs and GPs. Of course doctors can’t know everything about everything. Countless books and websites exist, so they can look things up should the need arise, and of course many colleagues who are better informed. I’ve never met a top doctor unhappy to advise and educate, by phone or a simple email. As you will also know, but others might not, they can all mail each other on the secure site nhs.net. I am hard pressed to find excuses for the dreadful experiences people relate here.

[DorsetLady PMRGCAuk volunteer in reply to Mayadill]

Totally agree with your last sentence…. but, by the nature of the forum we get a plethora of horror stories on here… if people get good medical attention they aren’t as likely to make a point about it. Some do…but most don’t.

Hopefully most people appreciate that doctors don’t know everything, but the lack of willingness from some to learn or seek advice from others is disappointing…

[Estellemac]

I think this could be a good article for the Newswire.

[PMRpro Ambassador in reply to Estellemac]

What? Which?

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Guessing link to your earlier post…

[PMRpro Ambassador in reply to DorsetLady]

Mmm - but article? The paper itself?

[Estellemac in reply to PMRpro]

The paragraph from Mayadill for Newswire but in storyline. And your Target to Treat paper for the support group as some are not on here are go on regularly. I don’t seem to make my self clear these days. It’s a foggy brain with constant pain I don’t think or talk/write straight?

[PMRpro Ambassador in reply to Estellemac]

Suggest it to Fran_Benson for Newswire, that's her baby. Not sure how to send it to support groups though

[Estellemac in reply to PMRpro]

I emailed it to our group and when Candy asks for articles for Newswire I’ll see what she thinks of putting this in. Might have to do a write around it.

[SheffieldJane]

You are right!

[Albyn32]

Mayadill. very interested in your excerpt from BSR guidelines. Agree it would be very useful to show to GP and Rheumatologist when they are pushing for a more rapid taper. Please can you tell me how to access the complete BSR guideline paper. Can't seem to find it on our website or the BSR website and nothing comes up on google. thank you.

[PMRpro Ambassador in reply to Albyn32]

The quote is actually from the 2010 paper

academic.oup.com/rheumatolo...

but there is a more up to date Recommendations from 2015

rheumatology.org/Portals/0/...

[Albyn32 in reply to PMRpro]

thank you so much

[DorsetLady PMRGCAuk volunteer in reply to Albyn32]

Original is on charity’s web site under Resources - scroll down page and download

pmrgca.org.uk/information-a...

[Albyn32 in reply to DorsetLady]

thank you so much