Fatigue control?
Posted , 15 users are following.
Okay, is there any near definitive answer or theory about the role of fatigue vs. PMR pain? (Is there not even ONE med expert focusing on this study?) Do I hear some saying the prednisone itself is cause of exhaustion? My big question in wanting to lower my 20 mg of prednisone is how much do I endure the return of "slight" aching of shoulders etc. before giving in to an increase of the pred.? Again, I'm SO grateful for the participants on this list! I have consoled one #&% relative of mine not to fear genetics as a cause because, I told him if he read your comments, he would realize PMR apparently happens only to bright people! Thanks, people!
0 likes, 25 replies
lodgerUK_NE ron25099
Posted
Fatigue occurs in many atuo-immune illnesses - put in your search engine 'The Spoon Theory' and read.
The fatigue you are experiencing is not vs Pain, the Pain is either 'steroid withdrawl symptoms' or dropping to fast and too much.
1)% drop and no more at a time.
Sent you a PM for reductions plans - free of charge.
lodgerUK_NE
Posted
Nefret ron25099
Posted
I haven't got an answer, wish I had! Most of the autoimmune conditions do have fatigue as a symptom - it isn't just PMR. Because it is so widespread a symptom, I think it might be a diffcult research project,
I have never been totally pain or fatigue free. During the day I can manage the pain but if the fatigue gets hold then that is it. Now I am retired I have the luxury of being able to crash when necessary, but when I was working, I couldn't have counted the times I slept on the floor of the ladies' - it was the only possibility as the building I worked in didn't have a restroom.
I think that is the answer - if the pain is 'manageable' or 'bearable' then do it,but be careful it doesn't step over the line.
Oh, you are quite right - fatigue is a side effect of Pred and a symptom of PMR. Double whammy, aren't we lucky?
faye______00403 ron25099
Posted
Not sure I want to be included on your "bright' list but here I am. If I had
a choice think I would be a little "dumber" and free of PMR
One of my e-mail buddies that has PMR told me she found statistics
that said out of l00,000 people 700 have PMR. Not a lot of people to
do any kind of study on is it? I don't even think the pharmaceuticals
would bother doing drug research since not much financial return for
that amount of patients. And.....pred is so cheap.
As for fatigue....I find it's on a daily basis as to whether I feel like I can
put one foot in front of the other. Just keep reading the posts on this
forum and hopeful that you can find some answers from us bright folks.
EileenH ron25099
Posted
Fatigue is, as already said, a part of almost all autoimmune disease. Pred itself CAN cause fatigue but PMR is probably the bigger culprit.
In order to lower your 20mg dose you need to go SLOWLY - that means small drops and not too close together.
Follow this link
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
and consider the reduction paln: it has worked for a lot of people to get them to a lower dose than ever before. Add to it the concept that no reduction should be more than 10% of the current dose of pred - suggested by top US experts some years ago. If the reduction is too big your body notices and protests. Keep it small!
If you do still have an ache - give it a few days, up to 10-14 days. If it starts to get worse, go back and try a smaller drop. Or dead slow... If it is steroid withdrawal it will improve. If it doesn't - the dose if too low. But if you go slowly you should be able to get well below 20mg for PMR.
andypolly EileenH
Posted
If you read the Kate Gilbert's book page 78 she said that when she was trying to reduce from 7.5 and yo-yoing she used paracetamol to ease the pain and 8 tabs per day for up to 2 weeks won't hurt you, but check with your doctor particularly if you have liver or kidney problems. Her words, not mine! We should all have a copy of her book: Polymyalgia Rheumatica and GCA: a survival guide.
lodgerUK_NE andypolly
Posted
I managed on Remy Martin for pain relief all the way through. I waited till on my scale of 1 to 10 and then it reached 8 - 1 tablespoon.
Developed by Medieaval Monks as a medicine. It also does less damage is taken responsibly.
GCA 5 year and now into 7th year of remission.
andypolly lodgerUK_NE
Posted
Have read the book thoroughly and must have missed the reference to brandy! But I'm sure it's in there so I'll swill my paracetamol down with a tablespoon of Remy!
lodgerUK_NE andypolly
Posted
If it was 'Living with PMR&GCA' produced by the North East and co-authored by Eileend. You will understand they would not let me put it in the 'Tips and Tricks' section
EileenH andypolly
Posted
I have read it - and probably long before most other people. It's a good portrayal of her journey with PMR - but having worked with hundreds of people on all 3 forums for the last 7 years I can tell you that she was very lucky and really not very typical.
Frankly I'm surprised paracetamol worked for her. Nothing would induce me to take paracetamol - taking 8 tabs a day for less than 2 months caused one of our forum ladies to have seriously raised liver enzymes. High enough for her panicked GP to send her for an emergency liver scan. Mercifully it was OK - but she has been told not to take it again. There is a VERY narrow line between therapeutic dose and pathological dose and having watched someone die of paracetamol-induced liver failure I don't wish to risk it.
Repeated international studies have shown that paracetamol is no better than placebo for most pain - and since placebo has no liver risks I'll stick to that. If I want to risk my liver I'll try lodger's brandy...
EileenH
Posted
PS - forgot to say: another method with no liver risks is to use the "Dead slow and nearly stop" approach:
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
which was developed as a result of experience and this particular one is currently being used by a rheumatology group for a clinical study in the north of the UK.
By allowing their body to get used to the new dose just one day at a time people rarely have enough pain or discomfort to feel they need pain-relief. The smaller the drop, the smaller the disruption to your body. It may look slow - but nothing is slow when it works. Dozens of people on the forums have used this or something similar (there are two plans in circulation) or have worked something out for themselves and almost all have got to lower doses than ever before - bearing in mind you aren't necessarily going to get to zero. You are looking for the lowest dose that manages your symptoms as well as your starting dose did. That may be zero - it may not.
snapperblue ron25099
Posted
artfingers ron25099
Posted
I and some of the other teachers in my building were talking and they mentioned that for them (they do NOT have PMR) taking iron had helped with their fatigue. Well, since then I have tried taking some iron but it hasn't seemed to help me. Surprisingly the other suggestion for sleeping better that one of them gave (take a combined calcium and magnesium pill at night) did work very well for me and I am now sleeping thru the night. I shall have to run the idea of taking iron by my doctor to see what she thinks.
Anhaga artfingers
Posted
Is your iron low? Only if it is will taking iron help you. You run the risk of getting too much iron if your levels are already normal. As for sleep, I have found taking one of my calcium supplements at bedtime with a small snack which includes a little milk does seem to help me sleep. I certainly have only had about four or five restless nights since starting this many months ago, and until then had basically been a lifelong insomniac!
artfingers Anhaga
Posted
Yes, the calcium (with magnesium) idea has been just amazing for me. I can't take it in the morning anyway due to taking my thyroid pill then but I was surprised taking it before bed with some yogurt has truly helped. I can sleep thru the night now with just a few turning-over-then-fall-back-asleep moments. With school being so stressful (I teach) it has meant that I am much more mentally alert now. Phew! I shall have to double check my last report on my iron. Good point!
dea13 artfingers
Posted
I take magnesium and find it works also for me for sleep :
Anhaga artfingers
Posted
I started the bedtime dose when I found out, two months into PMR journey, that you weren't supposed to take calcium and pred at same time (like your thyroid med).