At this point in my PMR journey fatigue and exhaustion are my primary complaint. I started on 15mg pred about a year ago in February and quickly reduced to 7.5mg because of an extreme anxiety attack at the 15 mg dose. I did quite well on the 7.5mg until in the fall of last year when I began to experience the dreadful fatigue that accompanies PMR in many cases. Since then I have slowly increased my pred dose from 7.5 to 10mg but to no affect on my fatigue problem. My question is should I go even higher with my pred dose seeing as how previous increases have been ineffective? I have read on this site where increased pred dose has relieved fatigue for some, but I've also read from some site experts, i.e., PMRpro for example, that increasing pred does not relieve fatigue because the underlying disease goes unaffected. It is my current thinking that if the underlying inflammatory response is reduced sufficiently by a high enough dose of pred the accompanying fatigue should also be reduced accordingly seeing as how the inflammation is, or might be, the source of the fatigue. The only thing stopping me from increasing beyond my current 10mg dose is the fear of the longer term side effects which are always on my mind. So I'm looking for opinions: has anyone experienced a reduction in fatigue from an increased pred dose, or, to the contrary, has anyone tried to relieve fatigue with an increased pred dose and failed to get any relief? Is there a definitive answer to this question?
Will increasing pred relieve fatigue?: At this... - PMRGCAuk
Will increasing pred relieve fatigue?
It all depends on the dose - GCA doses, in excess of 40mg or so, may well relieve fatigue because for some people pred has that effect. Never happened to me at 15mg! Below 7.5mg the adrenal glands have to start producing some cortisol again - raising the dose at those low doses may relieve fatigue but it means you aren't poking the adrenal function to wake up and take over again.
Have you discussed this fatigue with your doctor? There are other causes of fatigue besides PMR and having PMR doesn't excuse you from other illnesses. In PMR the cause of the fatigue is the autoimmune part of the disease, a bit like having flu, and that isn't altered in any way by the pred. Pred is just the dishcloth mopping up the inflammation that causes swelling and so pain and stiffness - the illness is still there in the background.
PMR is the name given to the set of symptoms we know so well - and there is a range of different causes. It may well be that the cause of your symptoms and fatigue is one of the other possible causes - they should be investigated at the start but when someone has what appears to be a relapse in any way for no apparent reason they should be checked again.
Thank you. I will be going in to see my internist in about a month. Previously, she has checked my B12 level to make sure I am not suffering from anemia. And sometime ago I believe I was checked for an insufficiency of thyroid hormone. But the next time in I will ask if these or any other tests should be run again pursuant to your advice. In the meantime, I am trying to lower my pred below 10 mg seeing as how that dosage had no effect on my fatigue. Trying to get down to 9 mg using the Dead Slow Nearly Stop method. I would like to get down to at least 8 mg because in terms of pain and stiffness I was okay previously at that level with no more and no less fatigue than at 10 mg. We'll see how it goes on the return trip. Thanks again for your dedication to helping others on this site.
Remember - just in case the doctor doesn't - that pred suppresses TSH so you can have a normal level even though thyroid function is not good. But there are other things including cancers that need to be ruled out - sorry to raise the topic, but that is the way it is.
I’m in my 7th year of PMR and my main issue has been the deathly fatigue. I’ve tried everything I’ve read on this forum....and nothing has made a difference. I decided my goal was to minimize the prednisone so I’ve focussed on that and have given up most activities in my life because of the fatigue.
Once I got to about 2 mgs the fatigue lifted now and then so I’ve been able to do more gardening, a bit of exercise, etc. but I don’t plan ahead as I never know if I will feel well......and I am so fed up with cancelling out of things.
One suggestion....on my bad days if I can force myself to go out for a walk it seems to help. Even walking around the block helps. And that is my go-to solution rather than increasing my prednisone!
Thank you. Your comment has been most helpful. It seems to be in accord with what others have said regarding this issue. My best to you as you wrestle with the PMR demon. I sincerely hope that you win in the end.
You are a very very brave lady 7 years of PMR....what crap!!!
I have only had it for years, AND from the beginning I have done Zumba gold, old ladies Zumba, with this wonderful music and now I added another heavier exercise class, plus daily walks...I feel all that, but esp. the exercise dance classes have helped me feel more normal, gets the stiff body moving..and you are with others, that helps, you can t be grumpy!!! Try the Zumba gold, it is soo lovely...Alida
R
I have two times 7 years ...
I’m with you re the daily walk Mrs-CJ. I find it works wonders.....if I can but force myself out the door 😉
Exactly!
I. an. now. going. to. force. my. way. out. of. the. front. door! Wish me luck!
The hardest is putting your shoes on... and when you are walking nobody cares whether you are stretching your arms and singing in the mean time. The neighbours probably think I got completely loopy....AND that is how I manage this attack on my immun syste...alida
I am on 11mg. of prednisone at the moment I have fatigue but it isn't awful. A little nap helps and gets me going again. I had the awful fatigue when I was taking 15mg. In My first year of pmr the fatigue was devastating. Personally, I feel the fatigue is just another way that pmr manifests itself.
Also, some people get energy from prednisone. I never have. Maybe those are the people that increasing prednisone helps with the fatigue?
Just a thought.
a better idea is to take Vit B!! I find that it helps the fatigue no end, although not a cure!
I have never fully escaped the deathly fatigue, even when I had 3 months of feeling really rather well. A week ago I reduced from 10 mg to 9 mg and this immediately brought back the DF at its worst. It's 09.13 a.m. as I type and I'm longing to go back to bed. I will force myself to go out for a walk later on but my instinct is to lie on the sofa for the rest of the day. I should add that this increase in fatigue is accompanied by an increase in clumsiness. Yesterday I dropped a jar of salad dressing on a salad bowl, breaking the bowl and splashing (and ruining) my favourite dress. It was a low-oil dressing but nevertheless it contained oil. Despite immediate laundering, the oil won't come out of the dress. I'm particularly annoyed with myself because I tend to boast that I always protect my clothes with an apron when in the kitchen!
Oil is often a job for the dry cleaners - it may not be too late although washing first often makes it harder. If it is - did you try dish washing liquid on the oily stain? My older daughter told me that trick and it definitely works on smaller stains - I often go through the laundry looking for those irritating spots and touching them up with it before feeding the washing machine.
Thanks for the tip but it was a big splash and left a couple of huge stains down the front. If I had a bit of my old energy, I would have salvaged and cut up the unstained fabric and turned it into a t-shirt by now. Maybe one day....
Me too!
Yes as PMRPro says definitely try Washing Up Liquid, works a treat usually! Good Luck 🍀
I was extremely clumsy pre-pred, I lost count of the crockery I chipped. Is it because our brains ‘expect’ a certain level of movement that our muscles can’t provide? I also misjudged my speed when crossing roads, my brain said “you can make it!” My legs performed otherwise!
I caught a dropped burger with my new tracksuit last week. I did the washing up liquid trick, but this stain was too greasy. So I dolloped Swarfega on and left it for a couple of hours, that seems to have done the trick 👍🏼 I’m pleased because the tracksuit was brand new. Why was I cooking in new clothes? Dunno, ask the pred!
We have some wonderful kitchen degreaser stuff here - I had a strange dark stain on the back of a cream fleece and it occurred to me to try this stuff on it. Result! Mind boggles what's in it though!!!
I pressed like... but it is more I M so sorry, this is infuriating....alida
Dropping things rings a bell with me. I have been blaming perhaps my stroke about 3 years ago. Can it be PMR I wonder. I always seem to be picking things up that I haven't placed carefully enough.
I've been on pred for about a year for PMR - now down to 9mgs from 30 at start. I recently had quite a severe allergic reaction to something and doc advised 30mgs pred for 3 days to clear it up.
The big increase in dose certainly made a difference to my energy levels - during those 3 days I tackled various jobs in garden and around house I'd been putting off for months.
Now back on 8/9mgs and back to general fatigue.
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