Duration of PMR and Prednisone’s role

[Twadds]

Is there an average time of duration of PMR from onset to remission and is prednisone a critical component in pushing the disease into remission? I understand a little of the mechanism of action and the role of TNF-alpha in the autoimmune attack but does prednisone help to harness the disease and push it into remission or simply mediate the pain and inflammation?

[DorsetLady PMRGCAuk volunteer]

Brief synopsis-

PMR and/or GCA are not like most illnesses -take a course of tablets for a few weeks or months and it is cured. There is no cure as such, but they are usually self-limiting, and the inflammation caused by the underlying illnesses is managed by steroids.

For further info you might like to look at the FAQs - few links about PMR-

healthunlocked.com/pmrgcauk...

[Twadds in reply to DorsetLady]

Thanks. I finally found the FAQ through your link. Very helpful. Happy to have found this community for support and understanding

[Builder123 in reply to DorsetLady]

After reading a few posts I’m puzzled why nobody mentions severe fatigue which is my main problem symptom of PMR.

[DorsetLady PMRGCAuk volunteer in reply to Builder123]

It is often discussed - and yes it is a significant issue for many.This post may help you to understand why you you have it, and how to cope with it -

healthunlocked.com/pmrgcauk......

[PMRpro Ambassador in reply to Builder123]

Maybe because we do go on about it to new people, they read the link DL gave you and KNOW it's a given. What can't be cured must be endured ...

[PMRpro Ambassador]

Pred doesn't have any effect on the underlying autoimmune disease process - it is a management strategy to manage the inflammation and relieve symptoms and allow a better QOL until the a/i disorder burns out and goes into remission. That can be anything from a year or less to really long term, a small proportion of patients suffer symptoms for life. Some studies find about half of patients need a low dose of pred for more than 6 years, By that stage it is of course impossible to say whether it is "just" PMR or adrenal function that requires the pred.

TNF-alpha is not generally considered to play a role in PMR and use of the TNF inhibitors is specifically warned against in the 2015 Recommendations as having little benefit but associated with considerable risks. The main cause of inflammation is IL-6 production and tocilizumab/Actemra is the biologic that is mostly used for GCA but is not approved for PMR. It appears to induce remission in about half of GCA patients but there are at least 2 other mechanisms involved there which do not respond to it - biologics are extremely specific in their action.

[Twadds in reply to PMRpro]

Thanks for the insight. I was unaware of the role of IL-6. I had read where TNF-6 played a significant role in the attack of the blood supply to the musculature involved. I have just enough background in immunology and physiology to probably make me dangerous. I appreciate your input for my understanding.

The bottom line is to control my pain and quality of life, which the prednisone has definitely done. Now the journey in tapering and hope for remission.

[PMRpro Ambassador in reply to Twadds]

TNF has a role in a range of inflammatory arthritides called spondyloarthropathies - and sometimes they are mistakenly diagnosed as PMR. It is identifying which is which that is the problem - and why several biologics sometimes have to be tried in RA before the right one is identified for that patient. There are several IL-6 antagonists now - but like the other biologics, they are all subtly different from each other. Nothing is simple!!!!

[123mossie]

The latter unfortunately, pmr continues until it puts itself into remission, we have to tailor the pred accordingly🙂

[alangg]

Hi. I'm a 63 year old male - in UK. I was diagnosed in December 2017 and started on 15mg of pred which pretty much gave me my life back. It took me 2.5 years to reduce down to zero using a slow DSNS tapering plan (Dead Slow Nearly Stop plan)and being very aware of when to stop reducing if the stiffness and pain felt as if it were increasing.From information on this site, 2.5 years is reasonably quick but us males do tend to have an easier ride with PMR than females.

So, take it easy (as a well known band would sing), don't start a new reduction until you are sure that symptoms aren't returning, leave a few weeks between finishing one reduction and starting another, go down in half mg steps from about 7mg to let your adrenals catch up with producing their own steroid and don't push your muscles too hard - the PMR can and probably will bite back.

Good luck.

[Blackcatlover]

Twadds this is a disease that has so many facets. Sorry I took so long to reply but just had some surgery. Glad to see you already got great advice from the incredible people on this site. My journey is like-so many others. You deal with pain, fatigue and bouts of depression. The only way to survive is to take the correct amount of steroids to control the inflammation and rest when your body says “ No More”. The resting was and still is the hardest part for me. You need to know this PMR Road is not forever. How long you must walk it no one knows. I’ve been on this road almost six years . Good luck and we’re all here if you need us.❤️🐾🐾