Pmr and duration of fatigue
Posted , 12 users are following.
i started on pred for pmr in sept. 2016. currently i am on 6 mg. pred--my third summer to go back up to 6. summers are hard for me with all my allergies, etc. anyway, this summer in particular i am overwhelmingly fatigued, almost to the point of being housebound. sometimes in the midafternoons i pop up a little but not a lot. the type of fatigue i have is helped by rest--10-15 minutes or maybe more and i can get up a little and do something that needs to be done. and then im exhausted all over again.
here is my question: IF my fatigue is due to adrenal fatigue from my adrenals having to kickstart again after having been on pred for so long, how long does the fatigue usually last? until the adrenals kick in--if and when they ever do--or until i get to a certain level of pred? or when the pmr burns itself out? What im asking is, from reading the boards i really cant tell, is everyone different? Or is there some general thought about the duration of fatigue? Is it generally thought to be a symptom of pmr or the impact pred has on our adrenals, that really is my question. thank you.
1 like, 34 replies
mary19068 Twopies
Posted
Hi twopies
I only speak from my experience with pred. While taking pred we know our adrenals are affected mine were affected in as much as i was very anxious, emotional which the adrenals control when they are up and running properly. Also, i could not get a good nights sleep which led to daily fatigue and lethargy. Also, low B12 added to the fatigue. It could be you are low on B12 and iron. Perhaps pay a visit to your doc and ask to be tested for low B12 and iron levels. Normal 12 levels vary with age. If over 55 years B12 levels should be 500-900....
EileenH Twopies
Posted
I think everyone is different - whether it is at what dose, how quickly they get through or anything else. And PMR having burned out won't make any difference to the adrenal function - it still has to return to normal and even once you are off pred altogether it is said to take up to a year for that to happen.
On the whole I would say most people do manage to get off pred and their adrenal function does get back to normal. But some take much longer than others and may need more help in the form of perhaps switching to hydrocortisone rather than staying on pred. It's just the same as how long PMR lasts - 1 in 5 patients are off pred in a year, about a third are off pred by 2 years but just over 40% are still on pred after 10 years. The longer you have been on pred at above 10mg the harder it is likely to be to regain adrenal function but even that isn't certain.
BettyE Twopies
Posted
I estimate it took me about 15 months after getting to zero pred. and it didn't happen in a straight line curve, so to speak. I just had pleasant surprises every time I found I could now do things I hadn't done for years like strimming a steepish slope, go upstairs hardly holding the hand rail, unloading the shopping, changing my duvet cover.
I think it's another case of not setting targets and I think you are right; everyone is different. Listen to and be kind to yourself.
ptolemy Twopies
Posted
I am at the point of deathly fatigue at 5mg. I find it an effort to lift my arm even! The GP has discovered I have anaemia which I assume will make me tired too.
EileenH ptolemy
Posted
Is that a new GP or has he managed to learn something in the meantime?
Twopies ptolemy
Posted
have you been tested for anemia or just waiting for test results? i just had bloodwork done, all ok
Twopies ptolemy
Posted
ignore my previous reply--read your response wrong. thought it said doc suspected you were anemic. blame it on my pred head. anyway my recent bloodwork 3 weeks ago was fine.
ptolemy Twopies
Posted
Yes, the doctor said to me, did you know you have got anaemia?!
ptolemy EileenH
Posted
This is two GPs as my ESR and CRP leapt up again. I whittered on about adrenal glands which they ignored so they are now checking for cancer. This was the end of last week, they seem to have leapt into emergency action already had an xray, more blood tests tomorrow, then another doctor's visit. I assume it is some sort of tick off list.
EileenH ptolemy
Posted
Probably been an edict - have you seen the article about Nye Bevan's relative dying of lung cancer since no-one told him until it was too late for r/t that would have cured it if done at the time it was found. Two different lots of doctors.
ptolemy EileenH
Posted
It is frightening what you come across with the health service. Perhaps it is better not to know in some ways and you can just die in peace!I really begin to wonder about the training nowadays, one older doctor said the trouble is they don't actually see patients but read books for academic achievement rather than having hands on, also doctors do not want to touch you any more or as little as possible, probably afraid of being sued. My father was saying when he trained they used to get them to smell, pus, urine etc, bet they don't any more, probably because it will be against human rights.
Twopies ptolemy
Posted
one time i read a report which said that more than 50% of docs here in u.s. admitted to searching webmd for advice. just sayin...
EileenH Twopies
Posted
To be honest - I'd rather they DID look things up now and again!!!!
EileenH
Posted
In fact - the GP in my practice who did recognise PMR was teaching her colleagues how to use google!!
ptolemy EileenH
Posted
They are still on faxes and pagers, what is Google!! Much too modern.
EileenH ptolemy
Posted
But both are to be banned are they not?
ptolemy EileenH
Posted
They have been talking about it but it does not seem to have happened. They are theoretically not allowed to use WhatsApp because of security. I suppose a fax is more secure!
EileenH ptolemy
Posted
Especially when it falls behind the filing cabinet and gets lost...
ptolemy EileenH
Posted
At least no one can see it, so it is secure!