PMR-GCA website addresses and resources

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PMRGCA-NW SUPPORT GROUP http://www.pmrgcasupport.co.uk/

PMR-GCA Scotland https://pmrgcascotland.com

PMR GCAuk - a National Organisation which covers England, Wales & Northern Ireland - www.pmrgcauk.com.

PMRGCAuk have a web-based community/forum on https://healthunlocked.com/pmrgcauk

New Book on the Block – “Living with PMR&GCA”.

‘Living with PMR & GCA’ written and produced by patients for patients has been issued to all members of PMR&GCAuk North East Support, Charity Reg No 1138409 May 2015.

The book is available to non-members and the details can be found here https://healthunlocked.com/pmrgcauk/posts/133359288/books-on-pmr-gca.

Highly recommended book - Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide by Kate Gilbert

http://www.pmrgca.co.uk/content/book

Other useful information:

Steroid Application

New steroid taper web application stores copies of steroid taper plans which can be viewed online or downloaded.

http://www.pmrgca.co.uk/content/steroidapp

Bristol paper

http://www.rcpe.ac.uk/sites/default/files/quick.pdf (this is a paper by the Bristol group which is aimed at GPs to help them diagnose and treat PMR and GCA more confidently and using a scheme that results in fewer flares due to reducing the pred dose too fast or too far, which is the primary cause of flares).

2015 Recommendations for the Management of Polymyalgia Rheumatica - a EULAR/ACR collaboration

http://www.rheumatology.org/Portals/0/Files/2015%20PMR%20guidelines.pdf

Study on Fatigue as a precursor to PMR

http://informahealthcare.com/doi/abs/10.3109/03009742.2014.959047

Diagnosis and Management of PMR - Concise Guidance from Royal College of Physicians

https://www.rcplondon.ac.uk/sites/default/files/polymyalgia-rheumatica-concise-guideline.pdf

Update on the management of giant cell arteritis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5406009/

Patient-reported involvement of the eighth cranial nerve in giant cell arteritis

https://rdcu.be/bOZXC/

Polymyalgia Rheumatica and Steroid Side Effects: New Findings

https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

Patient information leaflets

https://patient.info/bones-joints-muscles/polymyalgia-rheumatica-leaflet

https://patient.info/eye-care/visual-problems/temporal-arteritis-giant-cell-arteritis

PatientPlus articles aimed at doctors

https://patient.info/doctor/polymyalgia-rheumatica-pro

https://patient.info/doctor/giant-cell-arteritis

Drug interaction checker

http://www.drugs.com/drug_interactions.php

NHS hospital services

http://www.nhs.uk/NHSEngland/AboutNHSservices/NHShospitals/Pages/HospitalsSummary.aspx#choice

Specific topic discussions in these forums

Discussion for users achieving zero predisone:

https://patient.info/forums/discuss/zero-predisone-discussion-450915

Pacing in chronic illness - some useful links that explain it and how to do it

https://patient.info/forums/discuss/pacing-in-chronic-illness-some-useful-links-that-explain-it-and-how-to-do-it-516000

EMIS Moderator

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  • Posted

    Can I add a codicil to the very slow reduction plan in the above post:

    When you are at doses below 5mg it is a good idea to rest at each new dose for a month at least before trying the next reduction. At this point you risk overshooting the dose that is controlling the inflammation so waiting a short time to see if symptoms reappear is helpful. If you just continue there is a possibility that you get to very slightly below the "right dose" and inflammation will start to reappear very slowly. The blood tests will lag even further behind the dose reduction - there must be enough inflammation to increases the proteins being measured for the blood tests to rise.

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    • Posted

      Something like that yes. At the higher doses I'm not sure you need to but by this stage you could well be at the stage where you really are at the dose you may need to stay at for some time. In some people the PMR takes much longer to burn out than others - as long as the underlying autoimmune problem is active then you will need some pred to control the symptoms, hopefully something really low like 2 or 3mg but if you miss it you will let the cat out of the bag and the inflammation will get going again. And it won't reappear overnight - it could take a few weeks or even more.
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