Does increasing pred relieve PMR fatigue? - PMRGCAuk

PMRGCAuk
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Does increasing pred relieve PMR fatigue?

Ozark
Ozark

Does anyone have an opinion or a personal experience that increasing the pred dose will relieve the fatigue that accompanies this disease? Logic would seem to indicate that it would in that the higher the dose the greater the suppression of the immune system, though PRMpro thinks not. Would be interested to hear other opinions on this issue.

44 Replies
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I've seen a number of people report that the pred induces fatigue, frequently to a great extent.

Doesn't seem to be affecting my husband though.

I had a surge of energy when I first started but that went away and lethargy set in. The disease itself is very tiring and you ache all over so that tends to knock you out. Sorry, wish I could say different.

Me too. Only time my cupboards have been clean!

I can only comment on my own experience, which is that I was tired all the time before I was diagnosed with GCA and PMR, still TATT when I was on 60 mg of pred and still TATT now that I'm down to 10 mg. So pred doesn't seem to have affected my exhaustion, but it did deal with the pain and stiffness, so the exhaustion is certainly easier to bear than before diagnosis. I also know that at some point when I reduce to below 10 mg, I shall have to deal with the adrenals struggling back into life which by all accounts also leaves one extremely drained and exhausted.

Ozark
Ozark
in reply to Marijo1951

Thank you for taking the time to respond.

Hello, I’d say yes and no. Before GCA I had a weird combination of tired but wired. 60mg Pred knocked me for six and this didn’t get much better until about 20mg and better still at 10mg. However, although I don’t have the fatigue which I can’t describe, of a body in deep distress with an uncontrolled systemic problem I’m certainly not normal by a long way down at 3.5mg. I suspect this is because the actual mechanism by which my body is attacking itself is still there and not fully in remission. I think perhaps that’s what PMRPro is talking about.

bunnymom
bunnymom
in reply to SnazzyD

A body in deep distress (i like that phrase) worn out from fighting itself. I think lack of energy is part of the package all the way thru. At least for me. I thought lower doses would be the key but not so.

Unfortunately I'd personally say Pred had for me little or no effect on the fatigue or 'deathly fatigue' (DF) as many here call it. I always appreciated PMRpro's analogy to 'us' being like 'batteries' - you do too much - or 'overdo' things and then you simply must rest and 'recharge'. I have found this to be a very reliable way of getting some control over DF or at least some predictability about when it might next inconveniently 'descend'. While a high dose of Pred might temporarily 'mask' your experience of fatigue - it still (I found) lingered in the background ...

Rimmy

Daisychain12
Daisychain12
in reply to Rimmy

Beautifully put Rimmy darling xxxxx

My OH (male) has had a very positive experience on pred, it 'cured' his fatigue, low mood, brain fog, cognitive difficulties... He felt like himself again - he was always (until about three years ago) very positive, active and sharp. However when he drops the dose he is bad on day three, picks up again on day four and fine again after that. He was 100 miles an hour on 60mg! He gets up early, (5am on 60mg, 6.30am on 18mg..) does the dishes, all his emails, makes me coffee in bed (never used to!) and is generally extremely sharp and focussed. He reached his limit though a couple of days ago, and he's had to go back up to 20mg as he crashed and burned.. (well not quite that dramatic!) But all symptoms returned. Hopefully after upping to 20mg today he'll be feeling better. But it was 8.30 before he awoke this morning. He's better than yesterday, but we shall have to see how the next few days pans out.

Hope this helps.

Lee1945
Lee1945
in reply to Funky-Butt

I have been advised to reduce only by 1mg per month to avoid the yo-yo effect caused by big reductions and the need to go back up to the high start doses.

When I reduced down to 5mg a day, I was in so much pain that I have had to go back to 6mg. Am now waiting for an appt to see my rheumatologist again.

At the monent I am in constant pain

PMRpro
PMRproAmbassador
in reply to Lee1945

However you reduce, however small the steps down, nothing will get you to a lower dose than "the lowest dose that manages the daily inflammation as well as the starting dose did) - that is what you are aiming at, not a relentless reduction to zero pred. Once you feel worse at the end of a reduction step than you did at the beginning you have overshot the dose you are looking for and you need to go back. NOT to the original high starting dose, the last dose at which you felt well and pain-free.

Provided you realise quickly you have overshot you will just need to go back to the last dose, but if you ignore it you will still have accumulated inflammation and constant pain. If you have pain, the recommended approach is to add 5mg to the dose where the flare occurred and see if that leaves you fairly pain-free. You can take that for up to a week or 10 days and drop back to there you were - not the dose where the flare occurred but 1 or 2mg above it.

Doctors all too often create the problems and flares by forcing patients to reduce without thinking and considering if the new dose is still enough. The original dose of pred cured nothing - you will need enough pred to manage the daily added inflammation for as long as the underlying autoimmune disorder is active. Which on average is between 5 and 6 years - this isn't a short-term problem. Although some people are over it in a couple of years that isn't common.

Ozark
Ozark
in reply to Lee1945

Thank you for your reply. I am so sorry for you that you are back to being in constant pain. Believe me, I know how difficult this is.

Oh wow soooooooo familiar with this story. Thank you for sharing so eloquently xxxxx

PMRpro
PMRproAmbassador

You know what I think. Pred actually has little to do with suppressing the part of the immune system that is causing PMR symptoms. It merely relieves the inflammation. The rest carries on in the background.

I still hit the brick wall of fatigue if I overdid it when on higher doses of pred. Just as I had pre-pred.

Berylholley
Berylholley
in reply to PMRpro

I am going for blood test today and am on 7.5mg so have decided to take 2.5gm before and leave the other 5mg until I get back at lunchtime. Hoping this will show some markers.

Tiredness, more like total exhaustion, now seems to have taken over my body. I push myself to simply do basic household chores. Just so exhausted..

EdithWales
EdithWales
in reply to Lee1945

Me too. Remember what my Psychiatrist friend told me “learn when it’s good enough” and Quentin Crisp “ after 3 months you don’t notice the dust”

No one is going to inspect you.

I wish the beds would make themselves though. Take care

🥂🥂

PMRpro
PMRproAmbassador
in reply to EdithWales

I'm a firm advocate of Quentin Crisp.

We have lightweight single duvets - fold them back to air the bed. Done. And stretch fitted sheet - quick tweak and they are flat again...

EdithWales
EdithWales
in reply to PMRpro

That’s my girl and if you are cold put another dog on 🥂🥂

PMRpro
PMRproAmbassador
in reply to EdithWales

Um - not sure I'd go that far...

EdithWales
EdithWales
in reply to PMRpro

Apparently all the silly and posh do it so I am told xx

PMRpro
PMRproAmbassador
in reply to EdithWales

Ah, that accounts for it. Silly I may be, posh I'm not...

EdithWales
EdithWales
in reply to PMRpro

I have always been silly but the last 4 years have pushed me into a different sphere The Pred brain 🧠 causes all sorts of madness, maybe it helps coping. Just look at Uncle Benjamin for example 🥂🥂

PMRpro
PMRproAmbassador
in reply to EdithWales

Um - maybe not?????

EdithWales
EdithWales
in reply to PMRpro

Maybe I have done him an injustice, sorry Uncle B 🥂🥂

piglette
piglette
in reply to EdithWales

Reminds me I must watch a very British Country House on Channel 4 tonight. Hotel with beautiful surroundings and ghastly guests!

We end up with 2 beagles on the bed! Does this mean I'm posh?

I remember reading an article years ago about how those who were relaxed about everything and surrounded by dogs used them on the beds to keep guests warm. It was tongue in cheek of course. Yes you can be posh but I am sure you are not silly

Take care

🥂🥂

ChrisMcT
ChrisMcT
in reply to EdithWales

Went to bed for an afternoon knap on Saturday, had a back ache as well as df. Awoke with my dog asleep too lying along my backbone. Better than any wheat bag!!

EdithWales
EdithWales
in reply to ChrisMcT

There you are, proves they are useful

🥂🥂

PMRpro
PMRproAmbassador
in reply to EdithWales

I'll stick with my hot water bottle...

EdithWales
EdithWales
in reply to PMRpro

I have my heated mattress cover and it’s changed my life. Warms all the bones and switches itself off. Probably too hot for you 🥂🥂

PMRpro
PMRproAmbassador
in reply to EdithWales

Probably - only need warm feet and then the rest of me toasts!

ChrisMcT
ChrisMcT
in reply to PMRpro

But they cool down.

Bronni
Bronni
in reply to PMRpro

Love it. We have the same thing. I don’t spend one minute making the bed. OH can handle it and it amazingly all looks ok!

Lee1945
Lee1945
in reply to EdithWales

I can no longer change my own bed! It upsets me that I have to ask for help!!!

I have also had to start having a cleaner once a week to do the things I cannot do especially now that it has been diagnosed that the bones in my NECK are crumbling!

EdithWales
EdithWales
in reply to Lee1945

Hi Lee

I can’t make my bed properly either and accept I have to ask for help, I also have a cleaner. With extreme difficulty I am concentrating on what I can do.

Had lunch today with friends and a my female friend has Osteoporosis, she cheered me up by telling me it was 6 weeks before she had improvement with Hydrotherapy, I have had 3 treatments and of course I expect it to improve immediately.

Tapering happily to 7 mgms so that’s good.

Take care

🥂🥂

Ozark
Ozark
in reply to Lee1945

I am so sorry to hear this. I truly wish there was some way I could magically help you. But like you, I too as well have to bear up under this burden. Just be aware, of course, that you are not alone in this.

Ozark
Ozark
in reply to Lee1945

Believe me, I understand completely. I thank you for your reply.

My fatigue went within a couple of hours of taking Pred. 40mg in August this year. Initially I was super charged, this level of energy did not last long.

However I’m now down to 10. The debilitating fatigue has never returned. I do get a bit more tired than normal if I over do it but it’s manageable. Just to note: consultant thinks I may not have PMR although an alternative ailment has not been suggested. My main symptoms were debilitating fatigue, inability to walk more than a few paces or stand / sit/ raise arms. So I guess it impacts everyone differently. Example:My friend gets complete brain fog @ 5mg, at 100mg for a different ailment I did not suffer from that at all ( as far as I’m aware) 🤯

I think Pred does help my fatigue.

I think at different levels the pred either helps or hinders!! I've had to increase it back up because of deathly fatigue - and it does make a difference - but I would probably have to go up a good bit for a very significant difference. When I was on a higher dose at the beginning I definitely felt more "normal" regarding tiredness. Without a doubt the fatigue is much more of a problem now than pain as the pred is seeing to that. But the fatigue - a whole different ballgame!!

Ozark
Ozark
in reply to powerwalk

My situation completely. Fatigue more of a problem now than the pain.

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