I’ve had PMR since April 2020. I started on Prednisone 20 mg/day and at 18 months, I had gradually reduced to 7 mg/day. When I tried to reduce to 6.5 mg/day, I had a terrible flare up so went back up to 10mg then tapered down to 7mg where I currently am. For the past 6 months, I’ve had terrible fatigue that has gotten worse. I’m extremely tired and feel like I have a hangover (I don’t drink) most of every day and need to ‘nap’ for 4-6 hours/day.
I’ve been tapering prednisone very gradually…going down .5 mg every six weeks. When I get to 6.5, my flare ups and intense pain returns.
My rheumatologist wants me to start Methotrexate. I’ve been avoiding taking it, but I will give in and start it in a few weeks.
Has anyone had chronic fatigue while they are reducing their steroid daily dosage and found any treatment to help with the fatigue?
I appreciate any of your advice and experiences.
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Macadoo
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A few years into pmr and on about 7mgs Pred I realised that I was coming to dread certain driving situations...going at any speed,overtaking etc. The extra burst of energy that I used to experience in those situations had been replaced by a sort of passive fear 😱...definitely flight rather than fight! I asked my GP if this could be related to the Pred effect on adrenal system and was told in no uncertain terms that if anything Pred would make those situations easier . Maybe he was right and it would have happened anyway but it seems to fit !
I found it does take quite a while. The thing is you need to tough it out as the adrenals slowly get used to having to work again and if you up the ored dose they can then have a rest again which is not what you want. Don’t try and reduce when you have the deathly fatigue, just take it easy until it improves.
Like many others do, I share your symptom of deathly fatigue, I am currently on 6 mgs of Prednisalone. I can also relate to the toxic hungover feeling ( unfair as I don’t drink alcohol at all). I have declined my Rheumatologist’s offers of Methotrexate so far. I want to feel livelier and less toxic. I don’t believe that this drug will do that. I also doubt that more Pred will alleviate my draining, flu-like fatigue. I am tapering so slowly. Next stop is my Endocrinologist who will focus on my Adrenal recovery, when I reach 5 mgs. So currently I have banned guilt and am now just sleeping when I need to. I do go properly to bed and don’t nap sitting downstairs. I really enjoy being taken out in the car for little errands or medical appointments. I sleep for about 2 hours after though. I have developed great patience for this phase which I hope is a plus not a defeat. I worry about what my extra cranial GCA/LVV is doing. I wish I could measure its progress or otherwise. It’s been well over 2 years. I am proceeding as if it is on the decline. I was first diagnosed with PMR in 2016 and was optimistically managing it and Pred for 4 years. I eat a good diet but don’t exercise enough. I try to take good care of the collateral damage such as eye, sinus, nasal and UTI symptoms. This is in addition to diverticula disease and foot pain. Joined by itching skin currently. I have a pharmacy of supplements, creams, gels , sprays, drops that I use. I kind of think that you have to wait this bit out. Doctors do not warn you or prepare you for this phase. I hope you do better.
Hello Sheffield Jane,After having had a spurt of aspirational energy the lack of energy, tiredness and a heavy, achey head that I have had over the last two weeks have definitely stopped me in my tracks. I've also had sinus like problems that don't respond to the usual treatments. Painting has been a blessing, though even that can be tiring. The itching has been annoying and I have to apply Cetraben morning and evening. My husband thinks I'm preparing to swim the channel ! I'm still on 7mg after a month and two weeks and hesitate to reduce further. I will have some blood tests next week, but it's possible that, if the weakness is due to the adrenals, not much will show up.
I couldn't help noticing that you have had similar symptoms.
Hello blueI just read your comment on itching. I too have bought no end of lotions and potions along with what cream doctors give me, none of which helps. Anyway I thought I would give E45 anti itch cream a try and for me it works a treat! If you do try it, buy the smallest one first as it can get a bit expensive, but for almost instant and long lasting relief it’s worth it. Hopefully it’ll work for you.
I agree that creativity helps. I have bursts of it and the results please me when I can’t do anything. Even if my role is ideas and materials and directing whilst my OH does the implementing, for the house and garden.
After diagnosing me wrongly with a bad foot my rheumi has gone AWOL so I'm back to the doctor again. Interesting that you mention sinus problems, as I seem to need a handkerchief most of the time, sneeze a lot and have a blocked nose at night. I know these are little things, but knowing the cause is helpful. Have started painting seascapes, maybe it's the thought of that helpful, salty sea air 😀
Try a salt water nasal wash. The universe maybe pointing you there.My nose gets totally blocked at night sometimes and I can no longer blow my nose properly. Doctors don’t seem very interested and don’t make the obvious connection between the autoimmune disease, the medication and these symptoms.
I bet there are more of us. These symptoms get you down.
Ah, so there is a connection. 🕵. It is rather annoying. There are probably a lot of us with similar symptoms, that's the joy of this forum as a source of comparison otherwise it would be dismal as the medical profession seem to know so little about polymyalgia, apart from prescribing steroids. Difficult I suppose with a disorder that comes out of nowhere and disappears when it wants to !! I'll try some more Steramar for the sinusy symptoms. Thank you.
I have just realised the “ dog days of summer” which stretch from 3 July to 11 August this year, describe an astronomical phenomenon associated with the heliacal rise of Sirus - the Dog Star. The ancient Greeks associated the season with extreme heat, blight, lethargy and disease. Homer called it an evil portent bringing heat and fevers to suffering humanity.So there you have it. It’s the dog days of summer and it will soon be better.
Nobody seems to be feeling that great currently. 🌟🐕 🙂
You have already had suggestions about the most likley reason for your deathly fatigue. I'm really not sure what your rheumatologist thinks adding methotrexate at this stage would achieve - in my case all it did was add to the fatigue! I assume he thinks it will allow you to get to a lower dose of pred (no guarantees there though) and that is the only thing that will, eventually, improve the fatigue associated with adrenal insufficiency since only being at too low a dose of corticosteroid for the body's daily requirements will encourage the production of cortisol. Either way, you have to weather the period of fatigue - and for some it can mean very great restrictions to their lifestyle.
I was at a much higher dose than you when I agreed to try methotrexate. Immediately I started it my hair started to fall out in clumps but after the second dose the fatigue that is a common feature of all autoimmune disorders increased and by the fourth week I could barely put one foot in front of another. I had to be able to function so I stopped with the agreement of my rheumy. It took several weeks to feel significantly better.
Hello Macadoo - this is just to share experience rather than a suggestion. With the exception of the initial shock of PMR (working diagnosis from March 2020) fatigue has been by far the worst of it. Mine kicked in like a sledgehammer from May 2021, when I hit 7mg. Tentatively, I think I started coming slowly out of it around a year later…so far, so good on that but I’m still afraid I may not have seen the back of it. I have been pointed towards methotrexate by my consultant but declined on the grounds that it’s already incredibly hard to gauge what’s going on with my body and mind when drug doses change without adding something else into the mix. At this point, I’m happy with that decision. I have also resisted the suggestion to increase dose in that, if the fatigue is a function of reducing dose, I don’t want to have to go through that again. I have been reducing very slowly on a three month cycle, with two months stable on one dose then a one month transition down 0.5mg, followed by two months stable before transitions down 0.5 over the next month. This has been working well for me. The only other thing I can share from my experience - which, of course, may be very different from your own - is, lie down to it. Struggling only made it worse. Take the rest you need when you need it. All good wishes 🌟
I think that you were wise not to accept further medication as, unhappily, all types of medicine have their share of side effects. I've been trying to carry on as normal, but this weakness and tiredness is difficult to ignore. Like you, the worst has happened on 7mg. I will endeavour to taper very, very slowly. Thank you for sharing your experiences, it's very helpful.
I seem to be where you are with the fatigue and the hangover feeling, I’m at 6 mg. Plus I feel weak. Can’t sleep so that’s not an option which adds to the dilemma, just really don’t feel like getting up out of a chair. Even the simplest housework is a mighty chore, can barely get the basics done. Had labs done Friday, will see what might show up. I’m doing the dsns, this is my third summer to try 6, I’m hoping I can stick it out. While I have a lot of soreness everywhere, it’s not what I would call a flare—at least not yet. 🤞
HiI have had PMR for 9 years now,have been unable to come off prednisilone, have been down to 2 mgm but then unable to get one foot in front of other !
I am currently on 7 mgms CRP is 9 .
I am told I have Fibromyalgia as well!
The fatigue is off the scale,I need 2 attempts to empty dishwasher.It’s really getting to me and do not know what to do,I do not have a consultant,Idid a few years ago,but he was dismissive at the time and said the PMR had gone and it was Fibromyalgia and didn’t want to see me again,not nice!
Is there any help,something to help the fatigue.
I am able to rest when I want as live alone .
The weight has gone on ,I am so short of breath ,Imust not go on ,but life is miserable.
I worked until I was 74,78 now and it’s been so miserable.
I so want to get off prednisilone but doubt it now after all this time
The first thing they could look at is your adrenal function but in practice it will be meaningless at present since you are on 7mg and that would suppress natural production of cortisol anyway. Shame they hadn't looked when you were down at 2mg - that would have been useful information.
What is the normal range for CRP at your lab? Is tha tin normal range or raised? Does the pain improve with more pred?
Hello PMRpro Isee a consultant for the Pituitary adenoma I have and it was checked when I was on 3 ,it was fine he said but that was pre Covid .It is slightly raised,,I need to look it up but think it’s up 7, it did rise to 37 a few months ago and I took 10 mgms
Do you think I would be better on 10 with the fatigue,does it help a lot? The
let’s me deal with it,have my BT monthly and check my results .
The extra pred might not make a difference to the fatigue - but if it helps the pain then it is unlikely to be fibro causing it, it is an inflammatory cause underlying it. That's why I asked if the CRP of 9 is normal range for your lab - in some labs that would be high, in others it would be within normal range.
Hi,it’s 0-5 at this lab .Prednisilone does not help the pain,I take Codeine phos ,was on Buten 10 but have weaned myself of them,was not sure they were helping my back pain .It’s the ghastly fatigue that effects me most ,just so debilitating Thanks
I just talked with my rheumatologist about this last week....to quote him, "Now you're at 7 and soon 6 mg and those adrenals don't like the idea of having to go back to work every day." They are coming off a three year vacation~!💕😒😒
I wish more doctors were that well informed. I am sick of the blank looks. I have an endocrinologist who will be keen to help this process along ( stimulating my own Adrenal system). I need to be sure that I am ready to let go of the therapeutic, anti inflammatory powers of Pred though. He sees the world quite differently I fear. The total priority will be the production of cortisol. Lord knows if my GCA/LVV is properly in remission. The symptoms are not at all clear cut. He enters the picture, sword at the ready, when I reduce by one more mg. 😬
Exactly, Jane! Getting the adrenals rolling is one thing...but the disease takes priority. I think my guy would only entertain something like that when he was satisfied that being off prednisone did not bring on a flare. He always says, one thing at a time and pred is at the top of the lists.
My cardiologist wants to make some moves to improve the circulation in my legs, my rheumy says 'we'll talk about that once you have been on 3 for a while'. He has mentioned the possibility of endocrinology but that is a 'we'll see down the road.' I'd rather play it one day at a time. 💕💕
I had awful fatigue when I got down to 7mg. I went up and down for a bit then just decided to push through. I cancelled everything for a while just to see if I could do it and I did. However I have had the same problems again going from 2.5 mg to 2 and decided to go back to 3mg for a couple of months to get me through a busy time ahead. I don’t feel great, but definitely a lot better. When winter comes and there is less to do I will try again to come down slowly. I think all these different stages of withdrawal and even a few flares along the way are par for the course. we just have to accept that the PMR is in charge and slowly, but surely not let it beat us. I believe we can take back control of our body (and mind!) by listening to what it is telling us to do.
Hi, I was diagnosed with PMR about 12 months before Covid.I was on 15mg of Prendisilone. I reduced down-to- 5mg just as Covid arrived.I spoke to a doctor at my surgery,not the one who diagnosed my condition.He suggested that I come off the Pred as soon as possible as at the time it was thought that Covid attacked the immune system and that steroids would have an adverse affect should I get Covid.I reduced and came off Pred. I have suffered the affects of PMR for the past two years without medication and put up with it but the feeling of tiredness and depression about having no get up and go is is getting me down. I feel I must relent and try and get a doctors appointment.
Oh you poor thing! I could hardly walk, get out of bed unaided, get in or out of the bath, lift my arms above my head…..I could go on. No wonder you are depressed and full of malaise. Pred is all we have realistically got. In your shoes, I would start again and hope that this awful period has at least reduced your overall steroid burden. It is not just the pain and disability Pred deals with, the inflammation is actively harmful and could lead to GCA and risks to your eyesight and heart function. You need to be seen and medically assessed and treated.
Yes you must - untreated PMR may lead to GCA -and you certainly don’t want that to happen. It’s not relenting, it’s acting sensibly. …and please let us know how you get on.
I have read all this post avidly as it’s exactly the situation I find myself in. I was diagnosed May 21 and have reduced to 7mg, I can have days when I could sleep all day practically , the rest of the time I ache, I’m now not sure if the ache is PMR or just pred related, as it’s worse than before I had any diagnosis. I’ve now decided to just do a very slow taper and get off pred.if I can, this forum is a godsend as there is so little information out there, I’ve not had any blood tests for 6 months, ought I to be asking for them?
Sorry you’re having such a bad time. Symptoms are the most important thing, but yes, I’d say get a blood test, so at least you have a baseline as to where you are now.
And do reduce very slowly, otherwise you risk a flare, which would only lead to you having to increase the dose again - the last thing you want!!
could be illness or adrenals now you are down into the territory where they need to start working again. A blood test might help you decide if the illness, assuming you are one of those with raised markers when PMR not under control. If so, then you may need slightly more Pred...However if fatigue is adrenal related trying to reduce too quickly is a no, no, so a slow taper as you suggest is the only way forward...lots of rest... and patience.
But you do need to find out what is causing it, unfortunately nothing on profile to give indication of long you've been diagnosed or taken to get to 7mg...so only guessing on cause ..a bit more info might help up to give a more informed answer...
Thank you ! Diagnosed June 2021, started on 15, I’ve reduced very slowly from 10, to 9 stuck on that for a while, then 8, 7.5, to 7 over about 3 months, so I am taking it slow , I’m going to ask for blood tests and stay on 7 for another 4 weeks before I hopefully try a slow taper ( new dose 1 day etc) as that seems to make sense to me. You are all so supportive on here, And the positive I take from it all is I know I’m not the only one! Thank you
Hello! This is macadoo. I'm going for blood work tomorrow...then to rheumy next week. Thank you for your thoughts and the links...VERY helpful. I'll keep you updated on my progress...may be helpful for others with similar chronic fatigue.
I have been on prednisolone since just after the first Covid vaccine and like yourself am on 7mg. I had tapered down to 6mg, but felt unwell and depressed so upped the dose to 6.5mg. I felt unwell again and was advised by Dorset Lady and almost simultaneously by my doctor, to increase to 7mg. Have been feeling tired and weak for a while, so am having blood tests tomorrow. Hoping also to have saline and adrenaline levels checked as advised on here. My experiences seem to be a bit like yours.
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