PMR and Physical Fatique and Lack of Stamina

I'm a veteran of 2 bouts with PMR. Sero-negative, means that my blood inflamation markers were within normal range, even before pred and when I was greatly inflammed. (couldn't walk up stairs) Am in total remission now, for 2 years... no pred. 

Blood tests are not the only way to diagnose the existance of the PMR related maladies. You still have it, if you have the symptoms of general malaise .Good luck. 

I'm a veteran of 2 bouts with PMR. Sero-negative, means that my blood inflamation markers were within normal range, even before pred and when I was greatly inflammed. (couldn't walk up stairs) Am in total remission now, for 2 years... no pred. 

Blood tests are not the only way to diagnose the existance of the PMR related maladies. You still have it, if you have the symptoms of general malaise .Good luck. 

Dear lord - where did she learn her medicine? 

When you are taking pred at a dose of above about 8mg your adrenal glands stop producing cortisol because the body senses there is an adequate supply of corticosteroid present in the body. Once you reduce below about 7mg daily dose your body has to start to produce some steroid to top it up to the amount the body requires daily to function properly. It isn't just the adrenal glands that are involved - it is a very complex feedback set-up involving the hypothalamus, pituitary and their hormones that has to get back into balance. If one part of the set-up is being slow to wake up, the production of cortisol is impaired.

The cardinal symptom of adrenal insufficiency is fatigue - and if you develop fatigue that gets worse as you reduce it is most likely to be due to that. The slower you reduce below 5mg the better the chance your body will settle down. One top PMR rheumy in the UK likes to keep patients at 5mg for up to 9 months before continuing the reduction. 5mg is usually enough for you to function reasonably well but low enough to stimulate the production of cortisol. 

If it doesn't improve your doctor should order a synacthen or ACTH stimulation test which will show if the adrenal glands are capable of producing cortisol at all, sometimes they don't recover after an extended period on steroids. If they are able to function it is a case of being patient and if that isn't working consulting an endocrinologist. Sometimes doctors switch patients to hydrocortisone which is felt to be more likely to encourage the adrenal glands to work properly.

I tend to think of my pmr as "stable" when I'm on the same pred for a while.

But really that's only true for a few weeks at most.

Sometimes I'm restless and have to be careful I don't overdo things. Other times I have no energy, am stiff, some pain, tired. Its a bit of a roller coaster.

Its easier to pace myself when I feel good than it is to do things when I feel rough. In the rough times there's a bit of forcing myself to do things. I'm more selective about what I do.

I'm sort of halfway in between at the moment. Not good, restless, but low energy at the same time. Odd, as a couple of weeks ago I was almost ready to reduce pred from 3 to 2.5.  In a day or so, when I've had some rest, it will be time to write a list of little jobs and start them one at a time.

If history repeats itself I will return to having more energy than I can consume in a few weeks. I think of this as just part of managing my pmr symptoms..

I came across this thread by accident...I'm still learning to navigate this site! Eileen's explanation of hormonal system was very enlightening, I had been told by my Endo that Prednisone disturbs all the hormone producing glands, and has ordered a complete hormone work-up.I don't see him till September, so I haven't gone in to getting my blood drawn yet .I started my PMR journey , with an already compromised pituitary gland.I had a pituitary apoplexy 10 years ago and though it was asymptomatic, the glad has kept shrinking according to the bi-

I came upon this thread accidentally, I'm still learning to navigate this site!

Eileen's explanation of the workings of the hormonal system has been very enlightening. When I started the PMR journey, my hormone production was already compromised due to a pituitary apoplexy I had 10 years ago.I have had a brain MRI every 2 years or so, and they show that my pituitary gland is shrinking, although my hormone production has been normal, I am told. I have never been confident that the most basic hormone tests I have been given are accurate and I suspected I had some sort of hormone defficiency before dx of PMR. I had extreme fatigue, which was really my biggest complaint, rather than PMR pain, which for me had been muscle fatigability (if I don't use the muscles they don't hurt,). But lately, for the first time in about 3 years, I don't have extreme fatigue anymore and I relate to the PMR fatigue from over doing that people describe on the forums.

I started tapering to 6 mgs yesterday by the DSNS method and have stopped taking Methotrexate due to severe side-effects, without rheumi's permission, as the whole rheumatology Dept. has shut down for the summer! The rheumi gave me a tapering schedule that was way too fast but I complied, figuring that I was suffering so much with the side effects of mtx, I wanted it to be worth it, at least for tapering faster.

For now, I feel like my PMR is under control, keeping my fingers crossed that quitting the mtx won't be a problem.

My new endocrinologist seems to be interested in my hormone production, which is reassuring but I could tell he knew nothing about PMR, no surprise there , but it's all the more reason for me to keep very proactive and to keep gathering all the invaluable information on the forums.

BTW, I've been looking at forums for another subject and I can't find any community that is as warm and efficient as the PMR/GCA ones ...not even close,!