Polymyalgia Rheumatica

[Hunstonhun]

I developed PMR in January 2015 and still struggling can’t get lower than 4.5mg Prednisone. Consequently I had to retire sooner than I wanted to. I have more bad days that good so difficult planning things as if I’m having a total fatigue day I just cannot muster up any enthusiasm or energy. I’m aware that I’m not alone and compared to some people my condition seems mild. Am looking forward to hearing other sufferers stories.

[PMRpro Ambassador]

Hi and welcome.

It isn't uncommon for people not be able to get to very low levels - but it sounds as if your problems are due to adrenal insufficiency which tends to be a problem at this sort of dose. However- if you stil have PMR, then it sounds as if you need a bit more pred to feel better.

[Skodadet in reply to PMRpro]

That was me too....three years ago. I had been on prenisolone for several years previously but had never seen a rheumatologist. The doctor referred me to one after I said I needed help to get lower, the rheumatologist guessed adrenal insufficiency and referred me to an endocrinologist who put me on hydrocortisone to try and nudge my adrenal glands into working. However they haven't and it appears I'll be on hydrocortisone for life. But I can manage the condition better now that I understand what is going on. I think you need a referral if you haven't seen a rheumatologist or endocrinologist.

[PMRpro Ambassador in reply to Skodadet]

Do you do OK on HC? Some people find they can't get on with HC - whether it is for left-over PMR or adrenal problems.

[Skodadet in reply to PMRpro]

I had more horrid episodes on pred than I have had on hydrocortisone but I'm not sure about side effects...think my heart rate goes irregular when i increase it. I take varying doses three times a day and can alter how much and when. Still learning how much to increase for medical procedures and other stresses. I think that gives me more flexibility than with pred. Just been told I have to carry an emergency injection kit too. The only problem is when medical professionals are not clued up on it......I had an extra injection when I had a cardioversion but the cataract team didn't seem to have heard of adrenal insufficiency!

[PMRpro Ambassador in reply to Skodadet]

That's why the new card was developed - becuse HCPs were demonstrating ignorance. But they haven't done the education to go with it - so they remain ignorant!

[borednow]

Can you get to see your GP? My PMR started in 2017 and am now down to 2mg with a few hiccups in between. All managed by myself but considering my great age (79!!!) my life is good. Your GP should be advising you but mine was useless so I dealt with it on my own. It's a long time to be having more bad days than good Hunstonhun.

[Hidden]

my advice is to not take prednisone. I stopped over a year ago and am still having negative side effects.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

What negative effects?

Could be adrenals -can take up to 12months for them to be back to working correctly.

Looking at profile you weren’t on Pred for very long, so it could still be PMR

[PMRpro Ambassador in reply to Hidden]

That's all very well - but by saying that you may be condemning someone to years of pain and disability that isn't necessary. I have had PMR symptoms for over18 years - the nearly 14 years of pred have been infinitely preferable to 5 years of PMR and no pred. It gave me my life back. Used carefully and appropriately it is possible to mitigate most of the downsides of pred and I really can't list many downsides of pred.