Is there anyone who is well controlled with pred and who is still experiencing fatigue and exhaustion.

[Ozark]

Is there anyone who is well controlled with pred and who is still experiencing fatigue and exhaustion that you feel is related to the disease? And by well controlled with pred, I mean someone who's inflammatory markers through laboratory tests display as within the normal range.

[Marijo1951]

That's certainly my story. I became ill with both GCA and PMR early in 2017 and I was diagnosed in July that year, starting with 60 mg pred per day. I'm now at 4 mg per day. I have blood tests every month and the results are consistently good.

From the initial dose, the pred dealt with the pain - almost miraculously it seemed at first. It's a long time since I felt any pain to speak of. However I've never for a single day shaken off the deadly fatigue. To a large extent I've learned to cope with it by pacing and simply going with the flow. For example, if I change my bedding or do a pile of ironing, I will have to lie down afterwards for at least 30 minutes and there's no point trying to fight it. Or, if I have a day out, I'll have to devote most of the following day to the sofa. From time to time I just collapse for no apparent reason and I can't believe the overwhelming exhaustion.

I'm only thankful that I was already retired when I became ill. I'm full of admiration for those who hold down jobs or have to care for others while suffering from these conditions.

[Ozark in reply to Marijo1951]

Thank you so much for relating your experience with PMR and pred. It certainly confirms I believe that the exhaustion accompanying PMR is independent of controlled inflammatory response. It is a separate issue unrelated to whether the inflammation is controlled or perhaps not.

[Constance13]

My experience is similar to that of Marijo, but I have had PMR for 9 years. There is nothing that helps fatigue except rest and pacing.

[Abbey17]

Yes the fatigue is debilitating at times and disrupts work, it’s not just the physical but the brain fog that accompanies it

[DorsetLady PMRGCAuk volunteer]

From personal experience would say you are suffering from adrenals not up to speed as yet rather than your original disease.

I had GCA, well controlled following diagnosis, but during the time it took me to reduce from 6mg down to 3mg (very slowly and about 8-9 months) I had random bouts of fatigue…. but nothing else.

If that’s what it is, then, other than checking that your steroids are capable of working with a Synacthen test ( need to be lower than 5mg, probably around 3mg) it’s usually just a matter of time, a slow taper, resting and patience.

[Ozark in reply to DorsetLady]

In my case, I'm currently taking 9 mg of pred which should be more than sufficient for cortisol replacement. So I think my fatigue stems from other causes than adrenal insufficiency.

[DorsetLady PMRGCAuk volunteer in reply to Ozark]

Okay….in that case may well be.

As others have said, just because inflammatory markers are fine, doesn’t necessarily mean there isn’t disease activity- but it’s difficult to convince the doctors of that.

[Marijo1951 in reply to DorsetLady]

I've wondered about this as I'm now down to 4 mg, but the fact is that I've been consistently exhausted during the 4 years I've been ill. If it was now adrenal insufficiency rather than the illness, I would have expected to have lost the fatigue for a while at least before becoming fatigued again.

Nevertheless I would like to have a synacthen test to find out where I stand regarding my adrenals. Whenever my rheumatologist gets in touch with me again, I'll ask her about it. The trouble is I feel I've been left to some extent to my own devices by the hospital. They remind me every month to book blood tests but I haven't been given an appointment for a while now, and it seems impossible to reach the rheumatology department by phone or email. I don't feel it's something I can go to A&E for. Maybe my GP could help, but my practice has gone steadily downhill in recent years and I find them very frustrating to deal with.

[DorsetLady PMRGCAuk volunteer in reply to Marijo1951]

You do seem to have been extremely unlucky to have had fatigue issues all the way through….but now maybe a combination of factors, so worth trying for an adrenal test.

So many people have been left to their own devices over the last 18 months…..in all sorts of ways.

I recently decided need to get physio advice (privately of course) because no nhs rehab after shoulder op. He does some work for nhs and said how frustrating many staff found it (and finding it still in certain circumstances) not being about to see patients F2F….

..although others seem to find it okay.

[Kendrew]

Hi Ozark. I've had PMR since May 2019 and my inflammatory markers have always been within normal parameters. This has not meant my PMR was under control though as I've experienced several flares..one of them quite significant. There are others like myself who cannot refer to our inflammatory markers as a reliable measure of what's going on and who continue to manifest some symptoms despite markers showing up as normal in blood test results.

The fatigue and exhaustion is not just related to the disease but also to the use of pred. Pred can cause muscle wasting which in turn obviously causes weakness leading to fatigue and exhaustion. I for one have always felt fatigued and become tired very quickly. I can't walk long distances or stand for long periods without a rest and going uphill wipes me out.

I can only speak from the knowledge I've gained here and my own personal experience.... others may have different information to offer. I would definitely say that fatigue and exhaustion are all part of both the condition and the steroids regardless of what the inflammatory markers are saying.

[PMRpro Ambassador]

You may need to stand back a bit to survive the rush!

The pred only manages the inflammation - and that is all the markers reflect. They have nothing to do with any other aspect of the disease process. The underlying autoimmune disease continues in the background, attacking the body, attacking the body tissues and creating inflammation unless there is enough pred around at the time to stop it developing, but making you feel as if you have on-going flu. The fatigue is an inherent part of almost all autoimmune disorders and is managed in parallel to the rest of the symptoms - because that is about all that can be done in a/i disorders.

In theory my PMR is well managed - my markers have never been raised particularly - often raised for me but still "within normal range" according to the lab. But the fatigue is there, worse sometimes than others, but always there.

[2013mayo]

Hi, I’m always tired, drives me up the wall, ok, I’ve had a big op, but I’m a good few weeks post surgery and exhausted, but then again I was before the op. I was told, or rather my husband was told when he asked a junior doc, when will my wife get better, he told him GCA only lasts a year and then I will be back to normal, I was sat in the room with him and flabbergasted by his comment, I know for a fact, it takes as long as it wants to, I’ve now had this for 2 years.

Hope you feel better knowing the illness is different for everyone.

Take care.

Xx

[PMRpro Ambassador in reply to 2013mayo]

Hope you disillusioned them!!!!

[2013mayo in reply to PMRpro]

Never seen him since, I really don’t think he had any idea about GCA / PMR, he had no right to say what he said.

[PMRpro Ambassador in reply to 2013mayo]

All the more reason to take a teaching opportunity!!!!!! It really infuriates me when they make such statements that have no foundation at all so you do have to wonder where they got it from!

[Longtimer in reply to PMRpro]

I often wonder what some of the good Rheumies think of the numpties!!

[PMRpro Ambassador in reply to Longtimer]

They couldn't possibly comment

[Nextoneplease]

Yes, yes and yes again !!! Marjo describes almost exactly how I feel. The exhaustion is so debilitating, and it’s starting to depress me too 😞 I am ‘normally’ someone who is full of motivation, a busy person who can always fit something else in…..but not any more!!! These days I tend to work out how little I can do - and I hate it!!!

[YuliK]

Next one please. Hi there

I believe that most of us have gone through this awful fatigue syndrome at some stage or another.

Like others, I haven’t got the hang of how to get out of it. 🤣🤣

Yesterday after lunch I went to rest at about 3pm. I thought I would sleep 40 winks and feel refreshed.

At 8pm my son woke me up, laughing he asked if I’m going to sleep through till the morning.

I didn’t want to shock him, but I think I could have continued to sleep until morning. 🤣🤣

Once up, I managed to pull myself together ..had a shower , something to eat and settled down to watch a documentary.

But I’m still exhausted…

[Nextoneplease in reply to YuliK]

Hi YuliKI had to laugh at your story 😂 I did much the same after I had 24 hours in A & E recently with norovirus. I’d crept back into the house at 7am and was so silently asleep for the whole day, my husband didn’t even realise I was there and was panicking about what could be happening at the hospital !! (He could have checked the bedroom……lol )

My problem at the moment is that I’m ‘wired tired’, ie exhausted but sleep very badly 🙄 I’ve been reading up on Spoon Theory (see FAQs if you haven’t come across this). It makes absolutely perfect sense to me but I daren’t show it to my husband as I think he’d be horrified….

It is what it is, I guess, and we can only get through to the best of our ability.

Wishing you all the best 😊

Nextoneplease x

[PMRpro Ambassador in reply to Nextoneplease]

The idea IS to show it to the husband and family so that they understand!

[Nextoneplease in reply to PMRpro]

I do realise that, PMRpro 😉 It’s just that I have so many health problems, I can’t bear to add to his load….🥲x

[PMRpro Ambassador in reply to Nextoneplease]

WE said in sickness and in health - and speaking from the other side (i.e. his), I'd rather know.

[Nextoneplease in reply to PMRpro]

He does know in a general sort of way - perhaps it would be better if I told him more 🤔 I’m afraid I have a habit of getting through things by keeping them to myself - but this really can’t be hidden, can it?

[PMRpro Ambassador in reply to Nextoneplease]

Not really - and if he doesn't know then he will expect things that just make things worse when there are ways of working round it,

[Constance13 in reply to Nextoneplease]

I think a lot is us think that (adding to the load) but those of us who are lucky enough to have help are blessed.

[Constance13 in reply to Nextoneplease]

Why would he be horrified? Using the 'Spoons theory' (usually meant for Lupus, but works with our pesky illness too) certainly worked for me. Also he would then really understand what you are going through.

[Nextoneplease in reply to Constance13]

Thank you Constance13I will try to get my head round it all….. x

[PMRpro Ambassador in reply to YuliK]

I do that when I've been travelling - I discovered it worked well when we went to a science meeting in S Korea which meant 24 hours continuous travel. We got to the Uni and were to have lunch with our hosts - I was fine until nearly the end of lunch when I practically fell asleep in my bowl of food! I went to our room, went to bed and slept through until the next morning, I surfaced mid-evening for half an hour to go to the loo and have a glass of wine - OH had found somewhere to get that! He was moithering on I'd not sleep at night! Oh yes I did! The next day we started on a 4 day tour to the other side of the Korean peninsula - by train. I dozed on and off all the way, got to the hotel room and went back to bed (didn't miss anything, it was chucking it down, OH got VERY wet), surfaced for dinner and slept through the night. And from then on was absolutely fine!

[Nextoneplease in reply to PMRpro]

I love this story and am so glad you’ve managed to do so much, despite everything, and manage to face up to issues in such an honest, straightforward and useful way 👍x

PS An approach from which I could learn…..

[PMRpro Ambassador in reply to Nextoneplease]

Everyone has to find their own way - we can tell you how we get round things, you have to be up-front with your family and then, the world can be your oyster.