I am 65 y/0 male,3 yrs plus with PMR and currently down to 4 mg/daily prednisone. This issue has been posted before but after recent visit to rheumatologist am again frustrated and posting again. After the new year i had been doing pretty well and more physically active but by mid May I pretty much hit a wall with nearly constant fatigue and lack of any stamina upon any exertion or physical activity. Some days worse than others and some with what i would call "brain fog" just a general malaise. Still have morning aches and pains which the pred does seem to dissipate. In discussing with rheumy in June he discounted the fatique being due to PMR since my inflammation markers (sed rate and c-reative protein) were in a "normal" range etc. Think she considers my PMR in remission yet she is keeping me on 4 mg for time being and has been cautious in reducing PMR which i think is good. She discounted a link with PMR and general fatique and tiredness and brain fog as i was description. She suggested it may be something else going on and suggested i see my general physician if it continues. Is not fatique and tiredness a symptom of PMR? I certainly have thought so, so get frustrated by her discounting any connection. From my blood work she did it noted that my RBC (low), MCV(high), MCH (high) were slighly outside normal range which i thought might be a symptom of anemia but she said they were not significant to be a concern. Is there a connection to anemia from PMR or prednisone? Considering seeing my gp but wondered if anyone has any feedback on these issues. Thanks.
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.
Thanks for the quick and detailed response Eileen. That is what i thought was the issue when i discussed it with the Dr. but she seemed fixated on blood levels showing no inflammation from the blood tests.
I did separately see an endocrinologist last Oct. for a benign thyroid tumor and she did do a ACTH and cortisol test on me and reported that the ACTH level of 12 and cortisol of 8 were normal for someone on steroids. However since having the ACTH test last fall, I am not sure i was tested properly, since i was already on steroids. From online reading I think there is more than one type of ACTH test. For me they did a simple blood draw and not a stimulation test (as i understand it) where they do a blood draw and develop a baseline and then administer Cortrosyn and then do another blood test an hour later as i understand it. Is that the way you understand it.?
Either way I need to follow up with Drs to try to better figure this out. Will be seeing endocrinologist again as well.
Greatly appreciate your feedback
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..
thanks for your response - very similar to my experience- i kinda think of it like riding a wave with highs and lows etc like the roller coaster...yeah it is about recognition and management but wish the doctors had a better understanding of this stuff. I was also ready to reduce from 4 to 3.5 a few weeks but the dr wasn't too supportive so probably better that i didn't at that point...
thanks for the response and the support....great that you are in total remission! stay healthy!
vawils, I will only reduce if I am PMR pain free. My Rheumy does not agree, but I try and listen to my body. My blood test are normal, but I know that is just the Predinisone keep me PMR pain free. Blood Test tomorrow and I expect them to be normal, on 22.5 mg now.
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,!
Sorry for the ditto... Thought I had lost the first post before finishing...😰
I really struggle with the doctors who are fixated on "normal blood levels mean no PMR". For one thing, 1 in 5 patients never have raised ESR/CRP ever - I don't, but my ferritin is high, also a marker for inflammation. But the other point is that, even if your markers were raised at diagnosis, if you are taking enough pred then there will be no left-over inflammation to CAUSE raised blood markers. It doesn't mean the PMR has gone away - it means the inflammation is well managed. But the actual cause of the inflammation is an underlying autoimmune disorder and it is THAT that is the cause of the fatigue in PMR. Both the inflammation and the fatigue are the signs of what is going on in the background - pred manages inflammation but it doesn't help the fatigue except where it causes the pred mania and Energizer Bunny effect.
Yes - I think you do understand the synacthen test correctly and as I do. Measuring "just" baseline cortisol is fairly meaningless in a patient on steroids. Even the stimulation test only tells you that your adrenal glands are capable of functioning - not that they are doing so since there are so many other bits that must work too. It's a bit like your broken-down car. You can test the battery and say it is charged enough to be capable of turning the engine over - but if the electrics between the ignition and the battery aren't working, whether the battery is OK or not is immaterial.
I recognise what you are saying and it has helped me make sense of where I am. Like you, I am on 3mgs and had hoped to reduce to 2.5 in about a week but may have to hover at 3mgs for longer.
Quite agree with your last comment, all my questions have been answered on here, (mainly by Eileen and other knowlegeable regulars!) not the medical profession!.....
I smile when Eileen starts her replies with.....Dear Lord....when she is exasperated with the medical profession....she does a lot of praying for us!
Keep well....
FWIW, I am in the very early stage of treatment, taking 20 mgs and still have a lot of pain, but I also certainly have serious fatigue, particularly with exertion, and occasional brain fog and general malaise. My gp still thinks it's just PMR but I'm wondering whether it might also be fibromyalgia or something else.
Just chipping in with my own experience. Your feelings of fatigue are very similar to mine. I have been like this since at about 7mg, although I think it was worse then. Maybe I just wasn't used to it then? I'm now at about 1.5 and can do a fair amount, but always need to have a good rest, or I crash. I figure my adrenals are producing enough to cope with normal fairly quiet life, but if anything new comes up, even a fun socializing hour or two with friends, there isn't enough cortisol being produced and I need recovery time. Looking forward to eventually getting off this erratic ride, but think it's going to take a long time!
Hi Joe, I think a lot of us must go through a stage when we think we have something more or something completely different from PMR/GCA.I went through it, about six months into predisone and six weeks into Methotrexate.I even told the rheumi that I felt I had been misdiagnosed ..he just chuckled and so did Eileen, probably😂.
I found it very challenging to distinguish PMR symptoms from pred.side effects, over exsertion, and , in my case, a broken pelvis .I didn't even think to add Mtx into the equation.
There are just so many variables, it's crazy!
It turned out it was PMR, my markers finally went down after many months and I've accepted PMR, whose power I had underestimated. Im still learning, Just this morning I panicked and wrote a long querry. Thank goodness I lost it while I was typing. I'm fine now.I had gone to the gym, found the lift out of order so walked up three flights.I did a bit of rowing and the elyptical machine. As I was getting off the machine, one of the trainers "invited " me to do a 20 minute stretching class. When I got home I decided to lie down and read some posts on the forums.All of a sudden, I was hit by total body pain and big time fatigue. I thought it couldn't be delayed onset muscle soreness (DOMS) because it was only 15 minutes after my work out, thus, the post I luckily lost, because I'm fine now.
Hope you get to the bottom of your symptoms soon.
Haha! Now having done the stairs - you should have done no more than half of the rest. Stairs are hard work when you have PMR! Or the stairs and the stretching sounds good to me! You need to educate the trainer :-) Or you could have the done stairs, the stretching, had a rest and done the other bits. But the rest inbetween times is as important as the exercise.