pmr fatigue

[Glyngin]

after 5 years of up and down prednisone dosage I am now on 4.5 mgs( for last 3 weeks) I have no pain or stiffness but the overwhelming fatigue & lethargy is awful. Has anyone else experienced this & will it go without me going up to 5mg.

[PMRpro Ambassador]

Fatigue is an inherent part of almost all autoimmune disease. But when you are on pred at doses above about 7mg for more than a few months your adrenal glands stop producing the natural corticosteroid cortisol because a feedback set-up in the body knows not to add more to the pred dose as an excess is not a good idea. Once you get back to doses under 5mg the body needs to start to produce cortisol again but it isn't an on/off return to business, it stutters and stumbles and takes time. And the low level of corticosteroid in the body leads to fatigue.

If you can stick it out, it should sort itself out - but it may take a while when the deficit is still small. If you start to take more pred - it will only postpone the evil day, you have to go through it at some point,

There is lots about this under Adrenals in the FAQs, link at the top of every thread just below the post.

[DorsetLady PMRGCAuk volunteer]

Sounds like adrenals stuttering -and if so then only time, very slow tapering, and patience will nudge them into action.

Just stick where you are for now -and let them do what they need to do…

Have a look at this -

healthunlocked.com/pmrgcauk...

[Glyngin in reply to DorsetLady]

Many thanks for useful information as usual. Wondering if there ate any pmr groups in Suffolk or Norfolk? I would love to meet up with fellow sufferers.Unfortunately Dorset is too far for me.

[PMRpro Ambassador in reply to Glyngin]

pmrgca.org.uk/get-support/g...

lists the available groups.

[Nutsandseeds in reply to Glyngin]

Hi Glyngin, I live in Suffolk but there are no groups here at present. I was diagnosed last Autumn (quite a shock to me never having heard of this condition!)

[Glyngin in reply to Nutsandseeds]

Apparently we can’t give phone numbers on this site & not sure how we can contact each other🤔Im sure Dorset Lady can tell us.

[PMRpro Ambassador in reply to Glyngin]

Use the Chat function - there is an ikon that looks like a paper aeroplane. Click on that and the message function appears. Type in the name of the person you want to message and write a post just like on the forum. The difference is only that person will see it.

Alternatively, click on the person's name or avatar, their profile page will appear, click on the blue box saying Chat and follow the instructions.

You can use it to talt to a group of up to 10 participants, just keep adding a name and clicking on the menu to add them.

[SnazzyD]

Very likely but it can take a while depending on how sleepy your adrenals, as mentioned already, are feeling. This bit of the recovery can be the rude shock at the end of the Pred dose ladder because one expects that low Pred means back to normal. It can be months but not always. Sometimes getting a bit lower can be easier because the lower Pred levels make it more obvious that the body needs to up its cortisol producing game. I found myself having to reinstate in afternoon sleep (not just nap) and couldn’t wake in the mornings which I thought a bit much after all the heroics during the earlier part of my journey.

[Louisa1840]

Yes, Glyngin, that's where I'm at too. As the above responses all say - you've just got to stick it out. Once those sleeping adrenal glands get the message you're not going to give them any more of the hormone artificially (i.e via prednisone) they supposedly will get the message and wake up. But, as others have said it's not like flicking a light switch it will be SLOW and with much stopping and starting. I have always needed an afternoon nap though some days I don't feel the need as much as others. Be patient. Good Luck!

[Alazarin]

yes, I have this. I’m hoping it is due to adrenal issues, and will go when they wake up. But who knows. Seeing my doc this week.

[Artwatercolour]

I am experiencing the same thing - was on 4.5 went to 5 and then two days of 10 - back to 5 no relief...so tired. Have been on Pred going on 3 yeas now.

[DorsetLady PMRGCAuk volunteer in reply to Artwatercolour]

was on 4.5 went to 5 and then two days of 10 - back to 5 no relief...so tired

To be honest only trying 10mg for 2 days is unlikely to have achieved anything much - whether it be PMR or adrenal related.

If it’s fatigue [and no obvious PMR symptoms] then as we say many times it’s most likely to be adrenals struggling - so suggest you stay at 5mg for a couple of months, allowing them to catch their breath. Then a very slow taper [and I mean very slow], 0.5mg a time as you are doing, rest as much as you can, time and patience will nudge them into awakening them.

You can lengthen any slow taper by repeating each stage/week as many times as required..

[artwithksren in reply to DorsetLady]

When you say very slow - can u give me an idea as to what exactly? And could you clarify your last sentence please. Thanks so much for your reply

[DorsetLady PMRGCAuk volunteer in reply to artwithksren]

See this link -it has 3 slower tapers-one taking 5 weeks, one taking 7 weeks, and one taking 14 weeks (which is repeating the stages in the 7 week one to make it longer and easier on body). But you make it as slow/long as you need..

healthunlocked.com/pmrgcauk...

Hopefully you will see what I mean, but if not then come back to me please.

[Glyngin in reply to DorsetLady]

Thanks.I have just been sent a message from a fellow sufferer who lives in Suffolk (near me) I know we can’t put telephone numbers on the forum so how can we contact each other??

[DorsetLady PMRGCAuk volunteer in reply to Glyngin]

Use the message/chat.. only you and they can read that… no-one else

[Glyngin in reply to DorsetLady]

Many thanks

[PMRpro Ambassador in reply to artwithksren]

By our standards, under 10mg pred daily dose 1mg over a month is fast, 1/2mg is usually OK and if you can't manage that you should be taking 2 months to change the dose from every day old dose to every day new dose. The lower the daily dose gets, the longer you may need to change the dose - and some people have taken as much as 14 weeks to drop 1/2mg.

[Bedwell]

well talk about fatigue?!? But on a much lower dose than previous posts. I’ve been on 1 mg for a couple of months.. so thought worth going straight onto 3/4..???? on 3rd day could hardly stand up.. so that was yesterday . Upped to 3 ! That helped. Today thought I’d better go back to 1 .. and I’ve been on the sofa most of day so took another 1… just now. Shoukd I go straight up to 5 or something major like that and then back to 1? I can’t function at all?!

[PMRpro Ambassador in reply to Bedwell]

If you can't function at all, you need to be on a bit more. It IS about QOL as well.

[Bedwell in reply to PMRpro]

what do you mean

[Bedwell in reply to PMRpro]

sorry wrong place. What do you mean QOL

[PMRpro Ambassador in reply to Bedwell]

Quality Of Life. Indigestion?????

[Bedwell in reply to PMRpro]

Thanks. None of that! QOL .. blimey.. think I’m a fraction better akready. What do I take tomirriw?!

[PMRpro Ambassador in reply to Bedwell]

What you discover you need.

[Bedwell in reply to PMRpro]

and indigestion!

[Bedwell in reply to PMRpro]

taken another 2!!! Daughter coming for night to sort out change of bank!!! Need to be up and running!! Phew!

[Bedwell in reply to Bedwell]

That’ll teach me! I’m replying to myself!