Exhaustion and stiffness, nearly down to zero! - PMRGCAuk

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Exhaustion and stiffness, nearly down to zero!

Attic
Attic

Hi everyone. I have had PMR since 2014 and now, with the dead slow method I should be off Pred at the end of next week.

My question is, I feel beyond exhausted, never experienced anything like it and also extremely stiff, but with no pain.

Is this normal do you think, or am I being over optimistic thinking PMR has finally gone.

Thank you, Jenny x

Ps, I am taking 1/2mg on the days on and nothing on the days off, if that makes sense x

30 Replies
oldestnewest

It sounds like the adrenal glands are not waking up properly. It is unbelievable the fatigue I found, even lifting a finger was an effort. The PMR may have gone, but the adrenals may still not be up to par. They say it can take up to a year being off pred to get them back into shape.

I know we're not slaves to the numbers, but is your CRP normal? No inflammatory markers at all? If you've got normal numbers then I think Piglette might be right - your adrenals are just sluggish perhaps.

It sounds like you may be better staying on your current dose for a while longer.

If you are exhausted there could be many causes but the common factor is that it will not be the right time to come off your Steroid altogether.

You are following a Method but remember it's a guideline not a rigid timetable.

You may just be getting this Fatigue as a warning that you are not free of PMR yet , that small dose could just be the one thing stopping a Flare of Pain .

You may even improve increasing back to 1 mg for a little while , if so , you will know you need more time on that dose before you can go fully drug free.

If you drop to zero before you body is ready the Recovery Phase after becoming PMR Free could be longer and you could still suffer side effects and Fatigue .

If you haven't had your Adrenals tested since reaching below 3 mg I recommend you have the test now too , just to be sure that your Adrenals have recovered their full function .

Have you had a Synacthen Test to see if your Adrenals have the capacity to work by themselves. If not I should ask your doctor to arrange it. I would be concerned about your exhaustion and you need to ensure that you don’t have an Adrenal crisis. The stiffness does seem to suggest that PMR might not be done with you yet, unless you think it is because you have been more sedentary. I have difficulty in getting out of cars/ trains and it is more stiffness than any real pain. I find it embarrassing - such a performance. Good luck! I hope you are nearly, safely done with it, but be sure.

DorsetLady
DorsetLadyPMRGCAuk volunteer

“I have had PMR since 2014 and now, with the dead slow method I should be off Pred at the end of next week.”

No point in being off Pred if the PMR hasn’t gone - it doesn’t work like that -the hope is that the Pmr is gone as you reach zero, but no guarantee.

As others have said I would agree the fatigue is just as likely to be adrenals - so they need to be tested. As for the stiffness that does sound suspiciously like PMR to me.

I know you probably don’t want to but I would go back to at least 1/2mg every day (personally don’t think the day on, day off system works) - but 1mg a day might be much better.

You will get to where you want to be one day, but just not yet.

PMRpro
PMRproModerator
in reply to DorsetLady

Except I'm assuming the day on day off bit is using zero as the new dose ... You have to somewhere along the line!

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to PMRpro

Yes I know you do - been there - but if there is still stiffness I would question whether to plough on through. ....

As for the day on, day off - I would still rather try 1/4 daily until no symptoms. Then introduce the day on day off.

Just my thoughts. .....but what suited me doesn’t doesn’t necessarily suit all.

PMRpro
PMRproModerator
in reply to DorsetLady

True ...

Hi Attic, very early on in my 3.5 year journey with PMR I read Kate Gilbert's excellent book and one thing in particular she said was "I felt stiff all the time" (page 22 paragraph d.) I accepted stiffness, as oppose to pain, all the way through my journey until I took my last 0.5 mg dose of prednisolone in mid November 2019. From this time until 1 January this year the stiffness slowly melted away. I can't comment on your fatigue but wish you all the best as you close in on your target.

Never having had PMR I'm not in a position to comment on flares etc but I can comment on the effects of prednisolone withdrawal.

I was wrongly diagnosed with GCA (on the strength of very raised CRP/ESR) and have had 7 months of tapering from 40mg prednisolone. Whilst tapering I have obviously been looking out for any sort of symptoms of GCA or PMR emerging (despite not having them in the first place) and it has been very confusing as I have definitely experienced all sorts of strange sensations plus aches and pains, tiredness and occasionally exhaustion which previously I would have put down to over exertion or encroaching 'old age'. I did write a post about this at one stage and I think it was PMRPRO who mentioned something called 'steroid withdrawal rheumatism'....can't find it now but I'm sure she will correct me if I'm wrong. I've now been on zero prednisolone for about six weeks and at first the aching/nausea and general fatigue was so bad that I thought I must have some sort of virus but was reassured by the following article I found .

4mind4life.com/prednisone-w...

I don't know whether the 'pros' on the forum would consider this a reputable article or not but it helped me account for the way I was feeling and reassured me it would pass, which it mostly has.

PMRpro
PMRproModerator
in reply to Susiquew

Certainly covers it well whether it is reputable or not!

bunnymom
bunnymom
in reply to PMRpro

This is excellent info. Can it be pinned somewhere?

nuigini
nuigini
in reply to PMRpro

PMRpro I read the link within the link on "how long does prednisone stay in your system". The article confirmed my understanding that it can be absorbed within an hour and can last, for some, up to 24 hours. However, I was surprised to read that the half life of prednisone is 2-4 hours. If that's true the adrenals would be trying to kick in daily if you're at or below 14 mg. Could that be the case?

PMRpro
PMRproModerator
in reply to nuigini

The real trigger for the production of morning cortisol is the level at midnight - but I really don't know that then works for the various doses. I'd never thought about it either before!

Certainly the dose at which people experience the signs of poor adrenal function varies a lot - so the amount you absorb and the rate at which you metabolise it will have had an effect: from the 50% or 90% absorbed to having a half life of 2 hours rather than 4 hours... 50% of a 14mg dose and a 2 hour half life will take you to not a lot of pred around by midnight! OTOH, 90% of 14mg and a 4 hour half life will be a different matter.

bunnymom
bunnymom
in reply to Susiquew

Thank you. I just started year four and this is very helpful info. I find myself sitting around all day with warm wheat packs as I'm achy. Not pain but achy. I have put it down to withdraw.

nuigini
nuigini
in reply to Susiquew

I really enjoyed reading this link. Thanks!

Susiquew
Susiquew
in reply to nuigini

You're welcome...nice and straightforward to read too.

PMRpro
PMRproModerator

I think a lot of people feel like this at low doses - and the fatigue is almost certainly a sign your adrenal function is lagging behind here - and several people have said it was the best part of a year after stopping pred altogether before they felt back to anything like normal.

But if the stiffness worsens - don't rule out the idea that the PMR may not have gone yet. Better to consider it sooner than later and have to go back to a higher dose. Obviously 1mg was plenty ...

Susiquew
Susiquew
in reply to PMRpro

Yes, I'm expecting it to take a while to get back to 'normal' (actually just about forgotten what normal is!) even after only 7 months of prednisolone, especially as on the lower doses (around 7 down) the prednisolone seemed to give me a real sense of well being and energy which I don't have now. Rather redeemed itself after the way it made me feel at the outset!

I was fine on 1mg but it really hit me on zero. I was probably foolish as, after messing about with alternate days or trying to cut tablets in half and losing them when they shot around the kitchen, I finally decided to go from 1 to 0 overnight. Also coincided with the whole extended family having various winter bugs and viruses so not the best decision in hindsight, and obviously I would have been a lot more cautious if I'd had GCA/PMR.

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Susiquew

Probably not your best move - even if you didn’t have GCA or PMR - its not good just to stop - no matter how small the dose.

But you’ve lived to tell the tale- so not a problem in this instance.

Susiquew
Susiquew
in reply to DorsetLady

You're right, I'm not recommending it, and I did take note of the excellent advice on this forum and tapered much more cautiously than the rheumatologist suggested. Going down gradually by 1mg (from 10mg) was relatively easy till I went from 1mg to 0mg...then I really felt it.

So yes, I shouldn't have been so impatient at the end, and hopefully I have lived to tell the tale. 🤞I'm not entirely convinced I'm out of the woods yet as my CRP is creeping up, but with nothing to account for it. I go back to the rheumatologist in three months and am having monthly blood tests. Feel sure it's not GCA or PMR though.

I hope you are feeling more comfortable now after your recent shoulder operation...lovely post from you daughter. 🤗

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Susiquew

I think the problem is after GCA or PMR out first thought is always - has it come back? Of course, sometimes the answer is yes, but very often it’s no!

I did a post last year (2.5 yrs into remission) saying my readings had gone up for no apparent reason, and the GP surgery got in a bit of a panic. So short sharp blast of Pred.

What we decided afterwards, it was the combination of a knee operation in July 2018 (apparently it can be raised for a good few months after that) , hip operation Jan 2019 and a weekend of flu in February.

Feeling lot better thank, and yes she’s a good girl - probably feeling a bit adrift because she’s so far away and can’t do anything! But at least I’ve her son close by at college, and my son has moved back to Dorset - so that good....and plenty of friends/neighbours should I need help.

Susiquew
Susiquew
in reply to DorsetLady

Thanks DL...no one seems too worried about my CRP going up so I'm not going to worry either, unless I start to feel unwell in some way. The GP says it could mean anything or nothing and rheumatologist just keeps trying to convince me that I have an minor infection somewhere! 😯😀 I've just become a bit focused on blood tests as the 'holy grail'.

I found that having my children concerned about me really added to my stress and anxiety when I was first ill because it had never happened before...always the other way round. But nice to know they care and something we need to get used to and appreciate as we get older.😊

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Susiquew

It can be raised by such a small thing as a stubbed toe or the sniffles- it’s just your body’s own first aid mechanism going to work.

And if you hadn’t had PMR or GCA or something else that needs regular blood tests - you wouldn’t even be aware of it.

Both doctors are correct - something minor, nothing or infection. You’ll soon find out if it is anything you need to worry about. Hopefully not!

May I ask as you have been reducing have you had any pain at all? Some say you have to take enough pred to have no pain before you reduce and others are still saying they have pain, so was wondering. I had to increase , almost double, but still have an ache in the back of my neck and not sure whether I will need to go up still higher....seems endless ups and downs....

PMRpro
PMRproModerator
in reply to remission

You gain your guideline at the starting dose - you should never feel worse at the end of a reduction than at the start really but of course some other things like OA may resurface. But increasing pain requires some ananlysis if it is similar to PMR pain.

remission
remission
in reply to PMRpro

so are you saying that you will have pain as you reduce? that is that part I am trying to figure out...right now I have minimal pain right in the back of my neck and not sure if that is a reason to up the pred or remain as I am...???

PMRpro
PMRproModerator
in reply to remission

If it is minimal and doesn't get worse then you have to question whether it is PMR or not. No-one else can say one way or the other - you have to know your body and your PMR.

Okay, thankyou for responding, appreciatie it

Thank you all for taking the time to look at my Post. I have upped the Steroids back to 1mg and also bought Kate Gilbert's book.

I am going to go to the Docs to ask for the test that confirms if your Adrenals are up to speed.

Thank you again, Jenny x

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