PMR-GCA website addresses and resources
Posted , 80 users are following.
If anyone has any further suggestions for inclusion do not reply to this but please contact me separately.
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
Polymyalgia Rheumatica and 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
EMIS Moderator
32 likes, 9 replies
EileenH EmisModerator
Posted
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."
EileenH EmisModerator
Posted
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.
Mrs.Mac-Canada EileenH
Posted
EileenH Mrs.Mac-Canada
Posted
ricky23486 EmisModerator
Posted
EileenH ricky23486
Posted
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.
ricky23486 EileenH
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bigmap EmisModerator
Posted
EileenH bigmap
Posted