Reviews • Guidelines • Resources
Medical Information
From time to time the charity becomes aware of ongoing research into both the conditions and related material. We will add it here once we are confident with the source. Wherever possible we provide a link to the originating website.
Medical Information
If you become aware of something new, or if you notice that our links are outdated (or don’t work) please email us at secretary@pmrgcascotland.com and we will do our best to address the issue.
Shared Decision Making – Help for when you talk to your doctor about your illness
GCA is the commonest vasculitis (illness due to inflammation of the arteries) in older people. PMR is also considered a vasculitis illness by many rheumatologists since both PMR and GCA patients can also have underlying more general Large Vessel Vasculitis (LVV).
The Scottish Systemic Vasculitis Network (SSVN), part of NHS Scotland, has produced a simple booklet, to help patients with vasculitis illnesses make the most of a meeting with healthcare professionals. It helps make sure that you ask the right questions and are able to share in any decisions about your treatment with your doctor.
Treat to Target Recommendations in GCA and PMR
According to the latest international guidelines for treating PMR and GCA, which were updated in Spring 2023, a more patient-centred approach is being recommended. This approach emphasises shared decision-making between clinicians and well-informed patients, rather than relying solely on a rigid tapering schedule. The goal is for patients to achieve symptom-free status and safely control the disease with the lowest possible dose of steroids, acknowledging that not all patients will be able to discontinue steroid use completely. This approach aligns with current practices in treating other rheumatological conditions.
Read the full paper here.
Link to NICE Guidelines for steroid reduction for PMR
A link to the NICE guidelines for steroid reduction for those suffering from PMR can be found here. This was taken from the Clinical Knowledge Summaries section of the NICE website.
NICE Guideline on diagnosis and treatment of Adrenal Insufficiency
The Guideline can be found here. Remember to choose sections on Adrenal Insufficiency due to steroid withdrawal. PMR/GCA patients do not have Primary Adrenal Insufficiency (Addison’s disease) but may develop Secondary Adrenal Insufficiency because taking oral prednisolone has suppressed their own body’s production of the adrenal hormone cortisol. Most will eventually recover normal function of the adrenal glands, although this may take some time.
BSR Guidelines
Guideline published by the British Society for Rheumatology (BSR) in 2020 for the diagnosis and treatment of Giant Cell Arteritis (GCA) available here.
Treating giant cell arteritis
An article taken from Hospital Health Care website written by Fiona Coath MBChB MRCP, Faidra Laskou MBBS MRCP and Bhaskar Dasgupta MBBS MD FRCP Oct 2nd 2018 can be found here.
Quick and Kirwin
You may have seen reference to the ‘Quick and Kirwin’ paper on various forums and websites. Please follow this link to access a copy. Of particular interest please see the PMR and GCA treatment regimes which can be found on page 344 and 346.
A clinical review of Polymyalgia Rheumatica
A clinical review of Polymyalgia Rheumatica co-authored by Dr Sarah L Mackie (clinical lecturer) and Professor Christian D Mallen can be found by following this link.
Helpline
0300 777 5090
The Helpline is open 9.00am to 9.00pm, 7 days a week. If a volunteer is not available when you ring, please leave a short message and they will return your call
Webinars from PMRGCAuk
Professor Bhaskar Dasgupta (one of our patrons) delivered a webinar for our sister charity PMRGCAuk entitled “PMR and GCA: The Road beyond Covid”
This webinar outlined new ways of diagnosing, assessing and living with Polymyalgia Rheumatica and Giant Cell Arteritis: how to embrace new ways of communication, remote review, self-disease assessment and self-management in a changed world. You can watch a recording of the webinar here
Versus Arthritis
Versus Arthritis (www.versusarthritis.org) was formed in 2018 following a merger of Arthritis Care and Arthritis Research UK. They publish an excellent set of booklets to assist sufferers. You can find downloaded copies here: PMR, GCA, steroids
They produce booklets on methotrexate, Azathioprine and other drugs.
They also produce advice on lifestyle Living with long-term pain, Keep moving, Fatigue-and-Arthritis and others.
Versus Arthritis periodically publish papers for health professionals and students under the general heading ‘Hands On’. In Spring 2014 the topic was Polymyalgia Rheumatica and is a very worthwhile read that can be found by following Hands On PMR link.
If you are having difficulty retrieving a printed version of any of these documents to take to your GP or other medical practitioner, please contact us at secretary@pmrgcascotland.com giving us your email address and/or postal address and we will send a copy to you.
Conclusions of trial of Tocilizumab in Giant-Cell Arteritis
Tocilizumab, received weekly or every other week, combined with a 26-week prednisone taper was superior to either 26-week or 52-week prednisone tapering plus placebo with regard to sustained glucocorticoid-free remission in patients with giant-cell arteritis. Longer follow-up is necessary to determine the durability of remission and safety of tocilizumab.
For full report dated 27th July 2017 read here.
Fatigue
Dr Neil Basu (keynote speaker at our 2016 AGM and Annual Meeting), has provided a copy of his presentation on fatigue ‘Unravelling Vasculitis Related Fatigue’ which is attached here
Adrenal Insufficiency
Please click for a leaflet, published by The Society for Endocrinology. The leaflet is intended for patients on steroid treatment at risk of adrenal insufficiency/adrenal crisis. It explains more about the steroid sick day rules. If you have any further questions, please speak to the Health Care Professional (HCP) supervising your care.