Informative video

Short, easy to understand video explaining Dr Mattesons findings that PMRpro has flagged up. Including length of time on prednisolone for PMR and pred related side effects.

rheumnow.com/video/dr-kathr...

[PMRpro Ambassador]

Thanks Keyes - "so now I'm going to tell my patients it may be up to 6 years before they get off pred..." Hope there are a LOT of rheumies out there who find this link to rheumnow!!!!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Perhaps we should send this link to those “2year” disciples!

[PMRpro Ambassador]

Why?

PMR is an autoimmune disorder - but unlike most others it does go into remission eventually for 95% of patients, for 75% of them in up to 6 years. PMR doesn't kill, it doesn't even shorten life-expectancy, and it doesn't usually appear before you are 50 or so, often far later. It is generally well-managed with corticosteroids, allowing a decent quality of life in the meantime. It may be a bit life-changing in that you have to adapt a bit to carry on your usual activities but for many of us it doesn't even do that - I have lived well with PMR for the majority of the time I have had it and been on pred. It wasn't too awful for the 5 years I lived with PMR with no pred - it wasn't nice and I have no desire to go back there but even so.

Most a/i disorders are for life. Some of them kill quickly, others kill slowly. Many of them make life pretty difficult in the process. If you feel bad about the possibility of up to 6 years of PMR then go and hang around a lupus or a vasculitis forum and read the stories there. They strike young people who haven't had a chance at life. They destroy organs leading to long term illness and fatigue that prevents them having a social life never mind a career.

If you have to have an a/i disorder - 6 years of PMR does seem preferable to the options.

[Polywotsit PMRGCAuk team member in reply to PMRpro]

I do agree - some of the alternatives are horrendous.

[Marie1479 in reply to Polywotsit]

My cousin suffers from Lupus so I well aware. I lost 2 years of my life from PMR at the ripe old age of 51. Right smack when my son was preparing College and graduating from HS. The pain, depression and feeling of isolation was overwhelming at times. Keep in mind I was undiagnosed for quite some time. At one point I almost considered retiring disabled from a job I love. Thankfully I found a great dr & feeling better in the last few months, but in no way has my life returned to normal. Regardless of whatever anyone else is suffering from doesn’t lessen my own journey with this terrible disorder. 6 years felt grim and I am sure no one who is starting this journey was happy to hear that especially those of us who work full time with a young families. Funny thing, the other day a co worker was complaining of soreness from going to the gym. My friend replied “STOP complaining at least you don’t have PMR like Marie!” I knew she meant well but it made me feel bad and even worse when the coworker apologized to me for mentioning she was sore. I told her there will always be someone worse off and that it was ok to complain and show yourself self compassion.

[micheleinnaples]

Thank you for sharing! Very informative!!!

[DorsetLady PMRGCAuk volunteer]

Not if you know from the outset, and as others have said there are a lot worse illnesses to have, whether other a/i or otherwise!

[Pam47]

What a great video! I wish all GPs could see this. Many thanks for posting it.

[Jackoh]

Great video - lets hope otherGPs and Rheumatologists become more informed and enlightened.

[Slowdown]

Whilst I agree that PMR is not life-threatening and it is managed very well with pred what it seems to have done is ushered in a whole platoon of other ailments. In the past six months I have been diagnosed with IBS, diverticulitis, worsening cataracts, hypertension, diabetes and Sjorgrens - yes, probably the first two I may have developed anyway, but it seems like a cascade of consequences since PMR onset 2.5 yrs ago when I had no health issues.

Sometimes it feels as though a tidal wave of other conditions is just waiting to break through my weakened defences with yet more consultations, medications and anxiety.

I could deal with 6 years of PMR if it was only PMR I was dealing with.

(Having had a moan, of course I agree about the awful alternatives..)

[PMRpro Ambassador in reply to Slowdown]

Look at it from another direction: I doubt it is the PMR that "caused" the others - they are mostly autoimmune disorders, and so you COULD give yourself the label of "Slowdown's syndrome" which has symptoms of all the other things - a bit like Mixed Connective Tissue Disorder has bits of everything but not always all of any one thing.

Your immune system has gone haywire - and caused the lot. Including enough symptoms to get a PMR diagnosis.

I admit the raised BP, diabetes and cataracts are probably due to the pred but apart from the cataracts would probably have happened at some point, pred speeded it up. The diabetes you can help greatly by cutting your carb intake drastically. One lady has reduced her Hba1c from 47 - just diabetic - to 41, acceptable range just by doing that.

[Slowdown in reply to PMRpro]

oh goody, a whole syndrome to myself! The PMR diagnosis was 2.5yrs ago, the remaining assortment within the last 6 months.. think what I feel is that the initial PMR acted as a gateway, allowing other ailments to take up residence. Not very scientific, I know. I follow a very low carb diet, as you do, there isn't much room for any adjustment, no extra sugar, no salt etc.. loads of veg/fish/homemade bone broth.. running out of options to lower my Hba1c, it's only just on cusp of Type 2.

It isn't FAIR when I'm doing all the right things, she cried! Difficult to sustain my usual optimism when, for all the exercise, diet, pred and hydration, another AI disorder trundles along to upset the apple cart.

It's cold, grey and I feel depressed. Sorry! I do appreciate your input!

Time for a Bowen.

[alwayslearningchris]

Thanks for posting this! Some related links with more details:

Polymyalgia Rheumatica and Steroid Side Effects: New Findings

August 18, 2017.

practicalpainmanagement.com...

Comparable Rates of Glucocorticoid Associated Adverse Events in Patients with Polymyalgia Rheumatica and Comorbidities in the General Population.

July 13, 2017.

ncbi.nlm.nih.gov/pubmed/287...

2015 Recommendations for the Management of Polymyalgia Rheumatica: A European League Against Rheumatism/American College of Rheumatology Collaborative Initiative.

September 9, 2015

onlinelibrary.wiley.com/doi...

[bunnymom]

When I shared the paper that stated what was in the video with my US Rhuemy he said he didn't know one Dr in the US that would agree with it. Well now I do. The Dr in the video! And yes I can see the steam rising from some of your heads due to his remark.