PMRGCAuk
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Extreme tiredness

Hello!

I was diagnosed with PMR a year ago after 3 months of pain & no diagnosis

I started on 15mg then the usual taper, going down 1mg a month. I started to feel awful when I reduced to 4mg. I stayed on 4mg for 4 months & then felt ok to go down to 3mg. I felt ok for 1 month on 3mg, so then went down to 2mg - only managed 4 days, then had to go back up to 3mg & then 4mg.

I went to see the rheumatologist on 29th December & guess what - I felt fine that day! Plus my ESR level was 18. I mentioned quite a few things like the extreme tiredness, the return of hot flushes & feeling down, but all he seemed to be concerned with was that I reduced my prednisone - I think he wanted to sign me off asap!

I had printed off the slow reduction chart that PMRpro suggested & he was agreeable to that, so I am following that reduction & am now on 1day 4mg - 3 days 3mg

My upper body is not too bad, but my hips & back of thighs are not good & I have that overwhelming tiredness.

I went to my doctor, but she was a bit dismissive too!

I have an appointment with the rheumatologist in April.

I am not exercising as much as I used to - mind & body not willing. Before PMR, I used to walk 2-3 times a week & yoga

I am going to phone the Rheumatology dept on Monday for advice, but just wondered what the lovely people on here thought?!

Sorry this is very long & boring! 🙄

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Not at all boring or long!!

I think you have found what you are looking for: the lowest dose that manages the symptoms as well as the starting dose did. It is probably 4mg unless you are letting in a flare.

PMR lasts AT LEAST 2 years, it is very unusual to get off pred any sooner and those who do are more likely than others to have a relapse later. You need to stick at 4mg for another 2 or 3 months at least before trying another small reduction. The return of the sweats suggests it could be a flare though as I'll explain, possibly not.

The other possibility is that your adrenal function is lagging behind the reduction of the pred. Your body produces the equivalent of about 7.5mg pred in the form of the natural corticosteroid cortisol which it needs to function properly. While you are above that dose of pred it doesn't make any more. Once you get below about 8mg pred your body has to start producing some to top up the pred dose. It can take a while to settle down and get the right dose. That could also be the cause of your sweats - and is almost certainly the cause of the fatigue.

We all know the exercise problem - but try to go for a short walk every day. Start with just 5 mins at a time and build up the time slowly then later you can build up the speed. You really will find being out in the fresh air and getting the blood flowing will help you feel more energetic!

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Thank you so much for your detailed reply PMR pro. You don't know how much better you've made me feel 😊

I think I definitely need to go back up again, just to function properly!

I am also going to try to walk every day too as you suggest - bit tricky at the moment, because of the snow! I walked to my pottery class & back on Wednesday (because I couldn't get the car out!) extremely overdressed, but it felt good 😊 About 20 mins, but coming home was just a bit much because it was nearly all up hill.

I don't understand why the rheumatologist & the doctor aren't honest about everything? The leaflet they give you when you are first diagnosed doesn't really tell you anything! It would also be really helpful to know about cortisol! I had read about it recently, but not the levels required

Thank you again - onwards & upwards - feeling much more positive! Have a great weekend

P.S another annoying thing is when people say - oh I get aches & pains & it's this aging thing - but I was perfectly fine before (and lucky) hardly any aches & pains

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We can all empathise with your last comment, Fiona - that plus ‘you don’t look ill’........!

I think that, below 7-8mg, it’s best to drop in 0.5mg steps?

Best Wishes

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Thank you! I intend to drop in .5mg steps now!

Best wishes to you too!

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I know what you mean about other people, I get "I know what it feels like", no you don't and be thankful you don't, but I don't say that. I did however have to correct SWMBO a week or so back as some things just get to you.

Also interesting to read about cortisol, I'm heading towards 7mg and fatigue is back in again, I don't get the sweats, but I feel cold, bit of a blow as I was always a hot one.

Hay ho, onwards and upwards keep up the PMA, it works wonders :)

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That's why I don't talk about my PMR to others if I can help it..even my brother, he asks how I'm feeling, I tell him, and it's like a contest.."oh, my shoulder hurts too" I remind him I know what the aches and pains of old age is, I'm older than him...I say "it's not the same" then I just shut it down...as long as the wife knows what's going on that's all that counts..plus one good friend who has RA for years, he knows and teases me out of my funks.."youngonna lay on the couch all day and whine, let's go fishing"..guys in bad shape a lot of the time he don't whine or slow down..inspires me..

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and thTs why this forum is so helpful for venting!

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I do like to hear how people really feel or what has wound them up.

Lots of people have no idea what it feels like and it's not easy to explain to people. This place is good as we don't need to explain in any detail how we feel.

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I'm happy to talk to people about my problems, a trouble shared is a trouble doubled ;)

As for a contest, I just leave anybody like that with whatever they take from it, they can have the aches and pains win!

But I do make sure I get up on go to work, it's hard on times and even moving about in work can be hard, but being out with people pays dividends.

I also go shooting at a couple of local ranges, can't shoot much, but again the company is good. Laughter is a good thing and there are so many things out there we can have a laugh at.

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Hi JulianJ,

It is hard for people to understand, so the best policy is just to not say anything, although it is difficult to start with! 🤐

I am quite lucky that I have a neighbour who has it, so I can talk to him & my husband is very understanding! 😊

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Fatigue is so common as to be almost normal in PMR.

The trouble is that the body is using special pathways to deal with the inflammation that accompanies PMR.

In doing so, it seems to me that we run out of the necessary raw materials.

What materials are these?

From my experience these are: Magnesium, Vitamin B 6, Glycine Powder, Molybdenum and Vitamin B1 in quite substantial quantity. Vitamin B1 and Vitamin B6 are in useful combination in Swanson's Active B Complex.

I was feeling quite weak despite taking all these except Vitamin B1 but did not feel better until I included Vitamin B 1 (50 mg daily).

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Plume, Thank you for the interesting advice about supplements. I will have a look into these, although I seem to be feeling much better after going back up to 5mg! Fingers crossed, as it has only been a few days so far! 😊

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Hi, I have had PMR for two years and GCA for three months less and am still at 10mg thanks to rheumy trying to reduce too quickly, I had a huge flare last July. I have also learned to rest and take things more slowly helped by OH discovering that testosterone doesn't explode on contact with vacuum, dishwasher etc. but the washing machine is still a mistery, might be a step too far.

Yes it's really annoying when people say that you don't look ill when you feel really tired and worn out I just tell them it's the drugs I'm using! 😊

All good wishes.

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Now I can use the washing machine, but the rest, a step to far now.

I used to rearrange everything in the dishwasher, but now I don't even look at it.

Great shame as I wish I could do more around the house.

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Can he come and break that bit of news to my OH?

To be fair - he bought me a pair of Roombas (one has just been put on, thanks for reminding me!). The vacuum one just has to be put down and a single button pressed but that is also apparently too demanding. The other is perhaps a bit complex. And he does empty the dishwasher - but even after 10 years of the same dishes and same dishwasher it defeats him fitting the stuff in the right places ;-)

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It's a man thing i.e. pretend you can't do it properly :-) works a treat !

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Yes, I'd worked that out!!!

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☺️

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Sometimes they can call your bluff when you feign incompetence - I find it better to actually make a complete mollux of something. It worked for me - I haven't been asked to cook anything in decades......... Don't mind ironing and can wield a good Hoover tho', so I don't feel too bad!

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Puts you 2 up on mine...

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Hi Rokerman

I'm the opposite, I do most of the cooking and do all the house maintenance, new bathrooms, kitchens, you name it, if it's making something I can do it. However I wouldn't know how to turn the washing machine on or how to iron clothes or dust. I leave that to the OH.

Pete :-)

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PS, however since I've had PMR, nothing much has been built. The deathly fatigue has got in the way :-(

Still on 5mg even though adrenals can produce 548 nmol/l of cortisol. (from the short Synacthen test) It seams I still have PMR after 3+ years.

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Thank you CT-5012 - it's so reassuring to read other people's experiences

I am just learning to be kind to myself, instead of constantly beating myself up about not doing things!

I think I'll use your line, if you don't mind! It's the drugs I'm using! 😊

Good wishes to you too & have a good weekend

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Took me a while to learn to pace myself, was rushing round on the good days like the Duracell bunny then suffering the next day. Now after doing anything I sit for a while admiring it. 😁

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CT-5012 I have stolen your Duracell Bunny phrase too!!! 😊

I was admiring my carpet yesterday after using my new very lightweight vacuum cleaner! I just can't pick the old one up anymore.

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Our internal dialogue is often more critical than others are but their "helpful suggestions" just make our own voice more angry and louder.

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Hi

Totally agree with PMRpro, have a look at the attached about steroid reduction and adrenal glands, I bet a lot you can relate to

healthunlocked.com/pmrgcauk...

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Great article very useful information tappering to 7mg at moment using Dsm

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Thank you Dorset Lady! I have copied & pasted it, so it is to hand!😊

I still don't understand why the rheumatologist or doctor don't tell you properly what happens to your body when you reduce steroids!

Thank goodness for this site & all the helpful people!

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They are often arrogant enough to think that the poor little patient cannot possibly understand such complex medical processes. Added to which - most of them can't do "patient-speak"...

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I only found out about bone scans, calcium, vitamins etc. from this forum no docs have ever mentioned any of these!

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Yup - me too !

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PMRpro...

It would be nice to be given the choice! A little leaflet would suffice! 😊

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If you always use the same pharmacy they should register you are combining (say) pred and calcium. And should tell you/mark it on the pack.

It does say very clearly in the Adcal info leaflet:

"Tell your doctor if you are taking calcium supplements or antacids for indigestion, digitalis drugs (eg. Lanoxin), diuretics or corticosteroids.

If you are taking thyroxine, bisphosphonates, iron or fluoride medicines, tetracycline or quinolone antibiotics make sure your doctor knows this. When taking these medicines leave a period of about 4 hours before taking your Adcal-D3 tablets. Do not take them at the same time.

Tell your doctor or pharmacist if you are taking, have recently taken or might take any other medicines."

And a pharmacist should tell you when you ask. It has been the pharmacists who have pointed it out in the past - most doctors are totally unaware.

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Hi,

Trouble is, I think lots of patients, even the sensible ones on here, don’t always read the leaflets properly, and perhaps “miss” the important bits you quote.

I know we should all read the “bumf” , but many don’t especially if they’re not in the least medically minded, and probably expect their doctor/pharmacist to highlight the anomalies - but we all know that doesn’t often happen!

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My reply WAS in response to "a little leaflet would suffice" ;-)

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Trouble is ‘a little leaflet’ wouldn’t suffice for ‘Elf & Safety! More’s the pity.

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A little leaflet that would be perused is more useful than a big one that isn't...

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So true.....we sensible people know that, but the powers that be.....well that’s a different story.

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Hi DL. I've read the article you referenced above before and it's very helpful. The following statement is particularly interesting to me at the moment:

"At 7.5 mg. prednisone (this is an average, it could differ from 5 - 10 mg. for different people) the adrenal glands should get activated and produce their own cortisol again."

In December of last year I finally made it to a comfortable10 mg. It took me over a year to get down from 12 mg going .5 mg at a time. During that year there with a couple of minor flares, which were resolved with 1 mg increases. (I started at 40 mg almost 4 years ago, but was undiagnosed for at least four years.)

Unfortunately, another flare occurred just before Christmas about a week after traveling for 2 days from warm Panama and trying to adjust to freezing cold Canada. It took 12 mg to settle things down.

I returned to Panama on January 3rd and have been gradually heading back down to 10 mg. The fatigue has been debilitating. Fatigue has been a major side effect of prednisone reduction for me since I reached about 17 mg. That's when I began reducing in .5 mg drops.

I'm beginning to wonder if I'm one of those people where the physiological dose is closer to 10 mg, rather than 7.5 mg. Do you have any further information in this regard?

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I'm sure I've suggested to you that you are a 50% person in terms of your steroid absorption. If you are then that fits your whole story.

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Thanks Eileen. Yes, that possibility/fact has been on my radar too. So, bottom line is my adrenals may be being called on at this point? Sometimes it's hard to keep track of all the variables, let alone figure out their impact. Especially when fuzzy brain seems to be back as well!😵😵😵

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Poor adrenal function also causes brain fog...

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Okay then...😮

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Double whammy then.

My worst point for fatigue was between 6mg down to 3mg. Looking back, maybe I should have stayed at 6mg for longer, but like you was doing 1/2mg drops and a slow taper so I just kept going waiting for that day when it went! And it did, thankfully.

Hopefully, your adrenal will kick in soon, but all you can do really is just soldier on slowly!

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Thanks DL. 😀

You and Eileen have helped lift the brain fog and got me thinking straight again.

I'll have to slow down on my trip back to 10 mg and go back to. 5 drops to get there.

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Yes I frequently get " You look so well!"

And "yes we all get these aches and pains and feeling tired - it's because we're getting older!!!" Yes and no!! Not to the extent that we can sometimes have them. But I just try to smile and let it go over my head. Sometimes easier than other times!!

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People can be annoying when they think we are over dramatizing our illness. I’m learning not to talk about it at all with them. Looking better than they do just makes them jealous! Ha! Ha!

I also beat myself up when Pred head (or aging) interferes with simple mental functions like remembering where I put my cell phone. Oh well, just have to practice being patient with ourselves.

Tapering has not been easy for me. Use DL’s method. Yesterday I woke up miserable with stiffness, forced myself to the gym, took a 45 minute aerobic/weight class doing what I could and felt all better. Pushing helps me.

Let us know how you feel.

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No - losing your cell phone is not a sign of aging! My best friend's daughter has a well-deserved reputation for losing phones. Since she was about 20!

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Thanks I feel much better!

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Yes Sandy, making that extra effort to look good (or as good as possible, anyway!!!) helps!

I sometimes can't cope with the simplest of tasks - Christmas was a nightmare, even though I don't have a lot to do or buy really!

I do wonder if I should force myself to do more exercise, but my head isn't allowing it at the moment. I intend (as per PMRpro's advice) to do a little & often. That is when the snow has gone!

Thank you & best wishes to you

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I've been losing my keys, or my sunglasses, forever. It's not memory loss, it's failing to pay attention! Although I did a new thing the other day, looking all over for the (nearly empty therefore very light) backpack I was planning to take with me on my walk, until my husband pointed out I was already wearing it. 😳 I've decided I'm a magician, I can make things disappear!

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I was looking for my reading glasses for an hour...yes they were on my head. I have got to say I generally think my cognitive abilities have been gradually getting better. The worst 6 months was prior to dx. I literally stop speaking part way through sentences or couldn't think of names for things. Still get it some days but don't feel quite so out of it now.

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Friend of ours is well known for forgetting stuff but surpassed himself after leaving a meeting, remembered to take everything home with him except his wife.😂

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Now THAT is skilled!

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Fiona, hope you get some help and support from everyone here. If it wasn't for this forum .... ! Just had a phone call with a 'friend' along the inevitable 'I know just how you feel' lines, and a little lecture about how I need to pace myself ! How do we negotiate life between medics and well meaning friends ?

I like the description of 'Pred head' for the nightmarish experience of not being able to process the simplest thought, everything scrambled, exhaustion, frustration. I am now on my third taper in four years, down from 15mg in August and now at 8.5 but noticed it took longer to adjust from 9 to 8.5 and still felt rough after two weeks and almost went back up to 9. Things seem to be calming down but I'll take it as slow as needs be at .5 reductions. I think the Rheum has left me to my own devices and and the GP is still in PMR kindergarten. Bless everyone for your support and HUMOUR.

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Slow down - you've had your warning...

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Thank you JD

Reading all the comments & advice, I think I have come down too quickly, but to start with you trust that the rheumatologist will look after you! Now I realise that you have to look after yourself.

Can you get a device to halve tablets? I'm always losing tablets, as they shoot across the bathroom floor, so I don't know how I'd be with halves!!!

Good luck & best wishes 😊

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Hi Fiona,

After some asking around at bigger chain chemists without success I found a pill cutter from a company called Safe+Sound - perfect for NON COATED 1mg tablets [v. difficult to chop into accurate halves with a knife!] Hope you can track one down.

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Thank you JD! I have found some on Amazon -from £2.99 to £23.99! The reviews for the cheaper ones seem to be better! 😊

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People ask me how I am ,I just say fine.No one understands the aches,foggy head,irritability and fatigue unless they've had pmr .I've had a grotty week,saw my mother who said 'it's the weather' causing my aches.Friend from work totally surprised I still have it as I gave up work a month ago,she says "is it arthritis?"I worked with her the 2years I've have this!!

My ex boss said give up the steroids and go to Pilates instead..idiot. . .

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Ugh!!!

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Just as well he is your ex-boss...

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Yes, Sandra, I have realised now that is much easier just to say "fine, thank you" as you do end up feeling a little bit pathetic & doubting yourself! 🙄

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Some family members are told by me and sister that I can only walk x distance and then on flat. Next thing is they plan one 4 times that and go slower than usual. I end up getting trick and wreck my body for days. Partially my.pride but mostly their refusal to compromise and walk to weakesrs pace.

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It's very frustrating!😕

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Wow!

Just had a look at my emails! Loads of lovely supportive replies! So glad to have the support & the humour! 😊

I do actually have a neighbour, who developed PMR about 6 months ago, but he is still in the "Duracell bunny" phase! To use CT-5012 's phrase, which I love! 😄 I do occasionally have a Duracell Bunny half day, but haven't had one for a while 😐

Best wishes to all in your journeys X

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I have found the same when I complain about things like being tired and itchy and Rheumy glosses over it. They are trained to solve the immediate symptoms and ignore the little stuff. I’ve been on 15 for awhile and start tapering today! Wish me luck and good luck to you!

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Thank you Ava! Good luck to you! 😊

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Hi,

I think you have done really well to taper to 4mg in just one year and shouldn't beat yourself up about staying at this level if it works for you.

I thought I was doing well being at 7mg after a year without too many interruptions, but am struggling to taper to 6 which is what my GP wanted me to do back in November. It makes you wonder how much they know about adrenal function.

A good friend of mine who is a nurse warned me that 4mg can be a sticky point too, if that helps.

We can do without the pressure our doctors put us under for whatever reason, so hang in there and do what your body is telling you it needs,

best wishes, Chrissie

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Hi Chrissie, thank you for your supportive words! When I think back, I was just reducing 1mg a month without thinking, as I thought that was what you "had to do"! And I thought you just had to deal with the aches & pains! Armed with the knowledge I have now, from all the helpful, knowledgeable people on this forum, I should probably have reduced much more slowly 😐 I am going to continue on 4mg & see how it goes?

Best wishes to you too

Fiona 😊

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HI NWFIONA, I AM CURRENTLY AT 7 MG PER DAY AND HAVE EXTREME TIREDNESS AS WELL. I AM HAVING HIP SURGERY IN MARCH AND AM RELUCTANT TO GO BACK UP. I KNOW EXACTLY HOW YOU FEEL IT IS AN EFFORT TO DO ANYTHING

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Bear in mind that rehab after a hip replacement is har work - if 1mg more helps you, don't rule it out.

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Thanks PMRpro I am trying to save going up until after the surgery. They have told me I will probably flare from "trauma to the body" if so I am ready to go right back up

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What I meant was - don't let yourself go downhill if 1mg helps now. I know what you mean though.

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Hi Jevuki,

A hip operation is like a walk in the park compared to PMR.

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Good luck with your hip surgery in March & be kind to yourself 😊

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Wow Piglette, if that is the case then I should be golden! lol

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