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
BettyE Twopies
Posted
There is a lot to be said for checking on " unknown unknowns" and there must be a possibility of an algorithm for medical symptoms with the exclusions to be looked for and the recommended procedures. They would show the adrenal deficiency and a reminder that R/T is a good idea if cancer is suspected.
I'm reading a book called Curiosity by Ian Leslie. He has a lot to say about breadth of knowledge versus specialisation and uses the Donald Rumsfeld quote to make his point.
ptolemy BettyE
Posted
Didn't Donald Trump work for the drug industry? Perhaps that is where it all comes from!
mary19068 Twopies
Posted
Hi twopies
If all your bloods were ok it doesn't mean your B12 levels are ok, B12 has to be specifically ordered by your doctor. Perhaps it would be a good idea to call your surgery and enquire as to whether your B12 levels were tested. After having my B12 injections the fatigue was significantly reduced...
Twopies mary19068
Posted
he did--b12, vit d, etc. all fine.
mary19068 Twopies
Posted
Hi Twopies
Even though your complete blood work tests came back ok it doesn't always mean your B12 was tested.. B12 blood tests have to be specifically ordered by your doctor
Perhaps it may be a good idea to contact your surgery and inquire as to whether you did in fact have a B12 blood test....after having my B12 injections my fatigue was significantly reduced...
mary19068
Posted
Hi Twopies
Sorry reply went through again..Did you ask what your B12 levels were reason being they will say they are ok if they are in the 300-500 range when in fact it's not...i don't know how old you are, over 55's should be significantly higher...
Twopies mary19068
Posted
didnt ask, guess i can. altho my doc is pretty good with us old guys.
TheRaven Twopies
Posted
Yeah, I think it's different for everyone. In my case I started Pred on November 1st 2016 and am down to 6/6.5 for the first time. About 1-2 months ago the Deathly Fatigue nailed me good and proper. After reading and questioning here, I moved my Pred dose up to 10 mg for 5 days and in my case it made a big difference. Then I brought it back down to 6.5 to see how I'd react. So far so good, but I have to pay real close attention to how I feel at work or at home through the course of the day. It seems like I've only got so much energy and once it's gone, it's totally gone. If I start feeling even a little bit fatigued I slow myself way down or just call it a day. That regime has worked for me for the moment but it's only been a couple weeks since moving the dose back down. If I could avoid most of the fatigue but had to stay at 5 or 6 mg forever I'd be a happy camper.
Twopies TheRaven
Posted
interesting. i never thought to increase the pred because i figured i would have to deal with the fatigue one way or the other, sooner or later.
i feel like a zombie now when i wake up, gets a little better as pred kicks in but by bedtime im whacked. if this lasts throughout lower doses, ive got a LONG ways to go with the fatigue. i guess i could try a couple days spike in pred to see whether that helps although im unsure at the moment. please keep us posted as to how the increase worked for you.
EileenH Twopies
Posted
Have you ever tried splitting the dose? Taking a bit in the afternoon a couple of hours before the dip comes?
Twopies EileenH
Posted
yes. for quite a while. tried twice in fact. made no difference.
TheRaven Twopies
Posted
Will do. FYI, I've been working a split dose for a long time too. Not sure if that makes a difference or not. Have kept the evening dose at a steady 2 mg for about one year now. If all continues well, at the end of the month the DSNS reduction will have me solidly at 6 mg. I'm tempted to go in to a holding pattern at 6 for a while rather than take a chance of riling things up. Today (Monday) was a good test at work. Chaotic but I kept a steady pace and didn't let myself get stressed out. I'm tired now (6:00 pm) but at least it's not that relentless fatigue. So far so good............
Silver49 Twopies
Posted
I had the same awful fatigue. Would go to bed beyond exhaustion and sleep like I hadn't slept in ages. It lasted a while but suddenly it went and I'm feeling so much more energised. I dropped my Pred to 1mg today and so far so good. I am thinking of just missing out the DSNS steps this time and continuing with the 1mg.
Twopies Silver49
Posted
oh! how long did the fatigue last, dare i ask? what i mean is, at what dosage did it start? im currently at 6, was planning to trickle down next month to 5 1/2, now i dont know what im doing. im tickled pink for your progress!
Silver49 Twopies
Posted
I'm not quite sure how long it lasted .... weeks. I hit a fatigue block at around 5mgs or so but not as bad as at 1.5, though it lasted longer than the most recent one at the lower amount. I hope that makes sense. The fatigue at the lower dose was overwhelming and I almost gave up and was about to increase my dosage when it suddenly lifted. It was unbelievable how it suddenly changed. I have been on Pred for just over 4 years now and I think I am finally seeing an end in sight. I think the PMR is gone and I am now coming off the Pred. I only had one flare at the beginning but I have not been too hasty about lowering too quickly. I am now finally wakening with no pain which makes me think the PMR has released its grip. I hope your fatigue goes soon. I certainly tried to do less when I was lowering but it wasn't always possible as circumstances dictated otherwise and I did suffer pain and fatigue. Best wishes with your progress.