Just curious… are there members on here who are clinical please? The responses are so great that I am wondering… they sound like the sort my colleagues would give when I was at work…not that non clinicians are not capable of wonderful support☺️
I’m also wondering if my Rheumatologist would accept the tapering regime posted here? I think it’s great and makes perfect sense.
Some are retired clinicians - but more importantly as patients/ex patients they have walked the walk, most clinicians haven’t.. 😊
Whether your Rheumy would accept our suggestions on tapering - who knows? Depends how open-minded and lacking in egotism they are.
Please reiterate you got the info from the charity - that holds more credence than a comment like ‘off the internet’..
I prefer the advice from this group 👌🏽
Yes, and the vast majority are members of the charity and the forum is governed by charity staff - not sure all doctors realise that.. which is why it’s important to clarify when quoting anything on here.
The DSNS taper I developed was used in a clinical study by Prof Sarah Mackie and DL's simple taper is very similar to one a patient posted she was given by her rheumy in the USA.
A few years ago, the former head of the NE of England PMRGCA charity wrote this about the history of the tapering plans
healthunlocked.com/pmrgcauk....
We have nurses and other healthcare professionals who post on the forum but not currently any active doctors as far as I know - although at least 2 professors in the field have a look in now and again and gather info for their own work as well as being active in the charity.
I have worked in medical science all my life in some capacity or other and have been involved not only in the forum but also in active research groups relating to PMR and GCA. If I don't know - I look it up using medical texts or ask one of my clinician colleagues. Nothing comes without medical backing or the backing of patient experience gathered over the last 15+ years.
👌🏽☺️
Hi, speaking from my perspective....my Dr told me he had 6 cases a year of PMR sufferers!On this site everyone is suffering from PMR/GCA and the advice is always sound....
I felt really unwell on my Dr's reduction but told him of the groups advice....he agreed to support me .
I'm now down to 2mg.
So for me the response to any problems and fears is always answered promptly and always with the message if needed.....Ring the Dr!
That’s very good.
I'm a retired Pharmacist and I always check my responses because medicine changes very quickly and what was OK in the past, may not be so today. I have to be honest when I say that I've learned more in the past 7 years from this forum than I ever knew when I was working. I wish I could "un-retire" because I could help more people and be in a position to de-bunk the many myths around PMR and Steroid use. The legal stuff prohibits me from giving advice but I am able to give an informed opinion.
The legal stuff prohibits me from giving advice but I am able to give an informed opinion.
.. and it's much appreciated. Thank you.
That’s fantastic… all on this group are☺️I trust you more than I do my GP. I understand that he follows the protocols but we are all different, it’s not a one size fits all approach. There is more knowledge from people who are living with or have lived with PMR for years. I’m so thankful my son came across this group. ☺️
Hello several folks have a scientific/pharmaceutical/medical background. Others are just very wise and wonderfully empathetic from yrs of experience .
Hi.. all the above contributors are vital, this is why the group is so interesting and vital. Thank you all.
New Strava support group 
Lincolnshire Support Group.
New South Coast/New Forest Support Group
Norwich support group 
support group-prednisolone- GCA
