PMR-GCA website addresses and resources

Bones, joints and muscles
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If anyone has any further suggestions for inclusion do not reply to this but please contact me separately.

PMR-GCA NE can be found at www.pmr-gca-northeast.org.uk

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

The forums within the NE site are here - http://pmrandgca.myfunforum.org/index.php

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 by clicking on this link http://www.pmr-gca-northeast.org.uk/index.php?id=9.

Members of the PMR & GCA NE support group describe how the support group has had a positive impact in their lives and the lives of their families.

https://youtu.be/_DQAgXzp8jc

Other useful sites:

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

PMR-GCA Scotland www.pmrandgca.org.uk

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

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

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

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

PMRUSA - Yahoo support group for USA/Canadian users.

https://groups.yahoo.com/neo/groups/pmrusa/info

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/

Research and Guidelines

http://www.pmrandgca.org.uk/research-and-clinical-guidelines-0 This is a page with links to full articles on Research and Clinical Guidelines including A clinical review of Polymyalgia Rheumatica by BMJ and the BSR/BHPR Guidelines for the management of PMR and GCA.

Polymyalgia Rheumatica and Steroid Side Effects: New Findings

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

Clinical Trials

There are related tabs on all of the articles below where you can search for clinical trials. For example https://patient.info/health/polymyalgia-rheumatica-leaflet/clinical-trials

http://www.gcatrial.co.uk/

Patient information leaflets

https://patient.info/health/Polymyalgia-Rheumatica.htm

https://patient.info/health/giant-cell-arteritis-leaflet

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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"Reducing pred: dead slow and nearly stop"

In an attempt to make this reduction scheme available more simply to the people who request it I am posting it here where it can be found easily. I hope noone minds but I have copied and pasted it what feels like dozens of time!

"A group of us worked out reduction schemes individually that have allowed us to reduce far further than ever before but they are all basically the same - and they were based on a scheme a Swedish gentleman worked out when he simply couldn't get below 3mg without pain. Img at that level is 33%, 1/2mg is 17% - way above the 10% that has been recommended for years. So he used table to see the daily doses and took the new dose on one day, old dose for a few days and then proceeded by repeating that and then reducing the number of days of old dose - until he got to everyday new dose. It worked, he got off pred and has been off pred for at least 3 years (it could be longer). Something similar to mine is being tried by a consultant rheumatologist in the north of England and he too finds it works for every single patient he has given it to. As it did for several ladies beforehand.

My reductions are VERY slow. I use the following pattern to reduce each 1mg:

1 day new dose, 6 days old dose

1 day new dose, 5 days old dose

1 day new dose, 4 days old dose

1 day new dose, 3 days old dose

1 day new dose, 2 days old dose

1 day new dose, 1 day old dose

1 day old dose, 2 days new dose

1 day old dose, 3 days new dose

1 day old dose, 4 days new dose

1 day old dose, 5 days new dose

1 day old dose, 6 days new dose

By that stage if I feel OK I feel safe to go all new dose. I suppose you might be OK starting and stopping at "1 day new, 4 days old" but I was terribly sensitive to steroid withdrawal pain so I err on the safe side. Once you get to the "everyday new dose" - if you feel OK you can start on the next reduction, no real need to spend a month at the new dose.

This avoids steroid withdrawal pain - which is so similar to PMR pain that you often can't tell which is which and some of us suspect that many flares are NOT the PMR returning but problems with steroid withdrawal. Using a scheme like this also means you can stop immediately if you have any problems - you might be fine at one day old dose, 2 days new (lower) dose but not at a 3 day gap - but you have dropped your dose a lot and that is the idea. It also isn't as slow as you would think - you can reduce at a rate of about 1mg/month on a continual basis.

The Bristol group start new patients with PMR with 6 weeks 15mg, 6 weeks at 12.5mg and then a year at 10mg before continuing the reduction and that achieves a far lower rate of flare (20% instead of 60%) and I suspect their flares then come below 10mg as they then do the 1mg at a time reduction. Just below 10mg is a common dose for people to get stuck at - and I (and others) believe it is because even 10% drops are too much for many patients. These patients are then labelled as "steroid resistant" or told they need methotrexate to help them reduce but we have seen this slow reduction work for those patients too. We believe that methotrexate (MTX) works for patients who have late onset rheumatoid arthritis (LORA) or LORA and PMR together. Very few patients get off pred altogether when taking the MTX - those who do are probably the mis-diagnosed LORA patients - or another arthritis that responds to MTX."

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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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Just so I have this straight, after following the plan decreasing to 4mgs from 5mgs and reaching the 4mg for 7 days you would stay at 4mgs for a month?

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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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I wonder if there is a way of copying this resources list so that I can then print it out?  I tried to bookmark it but was unsuccesful.  Any suggestions?

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You can block it and copy it into a Word file - just like anything you find on the internet. 

Position the cursor where you want to start and then click and drag to the end - copy and paste however you like to do it. But try again to bookmark it - I have it bookmarked.

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Thank you!

 

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Just had biopsy and am in pain and having pressure! Is this normal? 

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This is not thread for questions, just the resources post. Please start a new thread.