I am tapering my steroids at the Consultant’s instruction and I am now at 3.5 mg. I am also on methotrexate for suspected RA.
I am struggling badly with lack of energy. Everything is an effort. Is this normal ? What could I do to alleviate this? Admittedly I am still working but have had to stop recently.
Thanks.
This does tend to be a normal effect at this sort of level of pred - at higher levels your adrenal gland production of the natural corticosteroid cortisol is suppressed by feedback mechanisms and as you reduce the pred dose the body has to readjust for the changing dose and start to produce cortisol again. The primary symptom of secondary adrenal insufficiency is fatigue.
I found that methotrexate caused tremendous fatigue as well as other effects,
Thanks for responding to my question. Is there anything I can take or do to alleviate this or is it a waiting game to see if adrenal glands kick in?
The only trigger for the body to produce its own cortisol is sticking it out with a low enough dose of pred - which can be hard, You are obviously low enough for the body to notice so if it were me I wouldn't worry too much about reducing any further in a hurry and just be patient. Increasing your dose of pred would overcome the fatigue - but you would lose the incentive to the body to indulge in a bit of DIY! Give in and rest - not give in and go to a higher dose!
I am also experiencing tiredness, lack of energy etc. I was on 6mg, reducing to 5.5 slowly but then had a flare with a UTI so increased to 10mg for just over a week and then dropped back to 7.5mg and then 7mg - all seemed well. Had a migraine with aura which knocked me and don't seem to be able to get the same level of energy back that I had before. Some days are better than others. Muscles feel weak rather than sore and brain fog isn't in it. Mine is floating around somewhere. I seemed to be doing well up until 6mg. I intend following DL's reduction plan, i.e. 2 separate days new dose, 5 days old dose in a week and working from there. There are just some days where I feel I shall never be free of this debilitating thing. It seemed so easy to get from 15mg to 7mg and now three flares since. Any advice or knowledge thrown my way will be gratefully received.
Well maybe 6mg was below your optimum dose or just teetering on the edge although you may not have realised it at the time -and you would have flared anyway -with or without UTI.
Not quite sure what dose you are on now-but suggest you stay there and stabilise. If you have flared 3 times at relatively the same level - then that is telling you it’s not enough!
You are not reducing relentlessly to zero, you are trying to find lowest dose that controls symptoms… and if you go below that you will flare. Doesn’t matter how you reduce, overnight or slower taper, if you need X amount of Pred, you need X amount.
Add in adrenals needing to reactivate and it just makes life more difficult…..
Just ease up, temporarily, and get back on track- there really is no rush - and the more you flare, the longer it will take.
You will get through this, probably not as quickly as you would like, but managed sensibly it won’t be so debilitating.
“Slowly, slowly, slowly”… is the mantra!
Thanks, DorsetLady - you are a gem - even if I am feeling frustrated and temporarily 'hard done by' to have to deal with this thing that seems to take so much out of me - especially as the effect was overnight - one day perfectly healthy and fit - next, not!
However, I do now wonder what is going on. When I initially told friends I had polymyalgia rheumatica they looked at me blankly and couldn't get a grip of the idea at all (neither could I). Like most people (me included) they could understand a broken bone, overstrained muscles, and 'real' illnesses like cancer etc. Within the last week two friends have been in touch to ask again what it is I have been suffering from. One in the north east now has three friends who have recently been diagnosed with PMR and one with GCA. Another in Yorkshire has two friends recently diagnosed with PMR. I do just wonder if prolonged high stress levels play far larger a role in the development of this disease than we realise.
Onward and upward - tomorrow I am determined to wake in a much more positive state of mind! Thanks to all of you on this forum - I'd often be lost without you.
By the way, I have sent links to this forum to everyone who has asked for knowledge/advice with a recommendation that they join.
Oh yes - stress is a crucial factor - and longterm stress in particular really hammers the immune system. Stress also contributes to flares. Strangely, UK doctors are very dismissive of stress but the rheumy dept here, doctors and nursing staff, all agree about stress being our enemy.
Thanks PMRpro - I guessed as much. I had been coping with and demands of an elderly relative from a distance for the space of about three years which often meant last minute rushes up and down the country to deal with problems (once because she had forgotten to pay her phone bill!) and, for the last year, travelling up every other and then every weekend, holding down a full-time job, doing housework twice over and cooking twice over. It does take it out of you but at the time I felt duty-bound and the relative refused any other help - nightmare. Now, I find, if faced with any level of stress, everything shuts down, brain fog rolls in and I get ridiculously tired. Useless.
Yes - know that - last week was a bit bumpy and continued this morning! Went into the PO to pay a bill and a "stamp" for a process to get an electronic proof of residence document from the police. Even the procedure at the police the other week was less stressful - new PO staff (we had lovely relatively helpful ones before) and the one I got didn't speak any German - it is a legal requirement here for official stuff, 95% of us are registered as native German speakers - and the forms were in Italian. On my own, in peace and quiet I might have worked out what was what - as it was, I was just about in tears!
Sorry to hear about your stressful experience and hope you are a getting back to a more peaceful state. I get into stressful situations a lot with my sister and her offspring. Who are all completely thoughtless and self obsessed. Stress really rocks the boat of those who travel along the path of immune diseases and the drug side effects we have to put up with.
Wow!! And you're not even in Africa! I do sympathise. Been there, done that, lots of times, and it really, really takes its toll.
Just like me, before diagnosis 4 years ago, had a very, very stressful time going up and down the country to help to look after my ailing dad, cooking and cleaning etc , as well as then working full time. What didn't help at the time was dealing with the added stress of an 'over-the-top' sister, which resulted in a big argument and fall-out. I don't think she was handling the situation with dad very well, but we all felt it! I could really have done without her, dealing with dad was enough. I am sure this was partly to blame for my PMR. We lost dad the following year and things are OK again now with her, not brilliant but OK. I have learned that stress is my enemy and try to avoid it at all costs, not easy in this world!
I am under a tremendous amount of stress with trying to care for my mum, it is causing me so much pain and tension I don't know if it's a flare or the tension in neck and shoulders. Seeing Rheumatologist on Tuesday but having to pay again to see hom otherwise no chance of appointments in the UK
Well done on spreading the word….and stress most definitely is a factor -and over the last 2 years it had been almost constant….
We don't know wht causes PMR but stress could well be part of it, or the 'final straw' in a sequence of events. It certainly raises chemical levels like cortisol and that done repeatedly over time can't be good for our bodies. Anecdotally, there seems to be an increase in numbers dx with PMR following Covid jabs and also after getting Covid, maybe even linked to Long Covid. There seems to have been a big increase in numbers joining Facebook forums for PMR who reckon the vaccines caused their PMR. No idea if there is any evidence for this or not.
Yes Tangocharlie. I also believe that the coved vaccine contributed greatly to my PMR and GCA. I also have heard anecdotally of more people who have contracted PMR lately There have been instances of this happening with the flu vaccine but that has been going for so many years that there is plenty of evidence. Unfortunately the covid vaccine is so new that not enough evidence has been collected yet.
Thanks for this help. I did think I should stay at current level and not increase the dose, however tempting that would be.
It IS tempting, for so many reasons - but the wrong thing to do as long as your PMR symptoms aren't getting worse, that signals you are on too little pred for the PMR. It's a balance, and not always easy to find.
As a long time taker of MTX the tiredness the following day is different from the overwhelming fatigue of when l’m on too low a dose of Pred.
I actually am no longer affected by the MTX Tiredness.
I find it’s best to ‘give in’ l also find a nice Coffee (with milk) & a couple of squares of chocolate tend to push my blood sugar up & it can help with the Overwhelming Fatigue.
Now you’re at 3.5mg Pred you need your Adrenals to be helping out but they are inclined to be very lazy about getting into action again!
You really need to go with the flow & rest when necessary - that’s what l do! I’m quite tall so generally l like to lay on the bed with my music, my phone & chill 😉
Thanks. Yes I’m just going to have be patient and take it easy when I need to.
Thanks for that Mrs N. I have Sponyloarthropathy, rediagnosed from PMR. I have been resisting suggestions of Mtx, and one of the reasons was because Pred has at least got rid of the horrendous fatigue, and I dont want it back! So if it's more of a temporary tiredness than constant fatigue I could live with it. I know that everyone's different though, but at least there seems a chance that it might not be as bad as I thought.
Hi Ash
You definitely adjust or get used to it….
I started it in the April & l was always tired the next day but in the July we went on a Cruise, l’d just taken my MTX & we went to dinner, it was a Special Menu (an American Version of Master Chef) as l read the Menu l started to feel a bit queasy 🤢 I’m afraid l had to decline to dine!
I’m not sure if it was due to reaching the full level of MTX in my body that set the nausea off or the thought of Stuffed Pigeon 🤢
Anyhow, l had a tough August & had to have an antiemetic & l virtually lived on Chicken Sandwiches but it just stopped as suddenly as it started!
Re The Tiredness - l always kept the following day ‘free’ so l could rest or do as l pleased & as time went on l gradually ceased to notice it……
When l went to 25mg by Metoject l found l was tired 2days after - Consultant said that was unusual (but hey that’s me) it took a few weeks & it gradually faded…..
I’ve written a fair amount about it in FAQ’s so worth a look
MrsN
Thanks for that Mrs N. I feel a bit better about giving it a go. I had to go to zero pred for bloods, and at the time I was quite happy on 4mg. Since re-starting, even 10mg wasn't doing a proper job. I'm currently suffering quite a bit on 6mg + Hydroxy and dropping down, he says I must get down to 5mg or try another DMARD.
You've really made me laugh about the stuffed pigeon and the cruise. We were on a cruise to celebrate our 25th, and decided to get champagne to share with the others on the table. Due to very choppy seas, only one other person on our table turned up for dinner, so we shared it with him. I think he felt he had to repay that, so he bought us a banana liqueur coffee. My OH took one look at it and I saw his face turn green. I thought Oh no, the embarrassment, and quickly threw a very large serviette across the table to him. Luckily, he managed to control himself and went for a breath of fresh air (and it was very fresh at the time!).
Thanks for all of your great advice, its a comfort.
That is quite common - doctors take it into their head to make a patient take much less pred or even stop altogether for some test or other - and it is very difficult to get things under control again. Mind you - was it for a synacthen test? You don't need to stop it altogether, experienced doctors can interpret it without stopping the pred.
That's interesting PMRpro. Do you think if I went back to a higher dose for a while it would sort itself out eventually? He did let me have 4 weeks at 10mg, and in the end I wasn't too bad at that dose, but things weren't as well under control as they had been previously. He had already warned me in the past that sometimes peoples' bodies just get used to Pred and they begin to need a higher dose, so I just thought that it was down to that and therefore not likely to ever go back to how it had been. The last converation we had, he said that it would be a choice between living with how I felt at 5mg (as long as my ESR wasn't unacceptably high), or trying MTX/Sulfasalazine. To answer your question, no it wasn't for a synacthen test. It was too see what, if anything, the Hdroxy was doing.
I'd be really unhappy to be experimented on like that. There is only one very strange study supporting hydroxy - I admit that there is one person on the forum who can't take pred and has done well on hydroxy but there really isn't good evidence for its general use. But to force you off rather than going through a gentle taper was asking for trouble - many of us would have predicted what's happened.
As for would more work better - maybe, but you have to try to find out.
I completely came off Pred in December because, when he rediagnosed as Spondyloarthropathy, he thought that I might have had enough to reset my immune system . That didn't work, so was prescribed Hydroxy. At the end of three months, when maybe I was feeling slightly less fatigued, but otherwise not great, he decided to up the Hydroxy to 300 mg, but let me go back on to 5mg pred to keep me going in the meantime. I was given a month to drop down to zero for the bloods. I started to drop before that because I was feeling OK. After the bloods he decided to keep on with the Hydroxy but also 3 or 4mg Pred for 6 months . I was happy with that because I didn't want to take MTX.
We are all in a really large boat and thank heaven we can share our experiences!!! I'd be lost without all of you and worse!! my attitude would not be as healthy. Even if you feel like yesterday's news,....when it is a shared experience and 'normal' ...wow, what a relief. xoxo💕
I have just reduced to 3.5 and instantly I felt excruciating weakness in all my muscles especially my legs, and I am quite an active person, but not these last few days. However, I am conducting an experiment!!! Ever since reading and researching like crazy about GCA and the immune system I decided to take a daily cold-water swim which is easy for me as I have a small unheated backyard pool and in Australia it is mid-winter and damn freezing ! Anyway, for the past week coinciding with reducing from 4 to 3.5mg it has been raining and howling winds so........NO swimming. And the coincidence has been aching and weak muscles etc. Yesterday I started my cold-water swimming again and for 2 days now I have been free from the muscle aching etc. Everything I have read about cold water swimming (or showering) says that it helps the immune system to re-set itself if it has gone awol, and after 65mg Pred for 2 months it has definitely gone awol ! One thing is for sure I will definitely continue with the cold-water treatment and hope it continues to have a positive impact on my adrenals and immune system. I read Wim Hofs book and that was a game changer for me.
Hi, I’m interested in what you say here because I have just started open water swimming with a group of friends at Winchelsea Beach in East Sussex. I expected to be in trouble with aching shoulders and muscles not used to this sort of exercise (lots of treading water and nattering) but I feel great. I’m not very fit and did struggle with my breathing but I really am amazed that my body didn’t complain more.
After watching Wim Hofs processes on the Tv show “feel the freeze” I had taken to finishing my shower with an increasing period of cold water and controlled breathing but have stopped doing it due to drought conditions in the South East.
that sounds great...real cold water swimming. I hope you can keep doing it. Even if you don't actually swim its the immersion into the cold water that is the thing. X
Exactly the same problem here! 3.5mg and deathly fatigue is constantly lurking. Sometimes I feel better for a day or two and then wham the fatigue overwhelms me. I do a short walk (or two) everyday and I have kept work going (sometimes now only 4 hours in a day...but I try to catch up by working 7 days a week ), My short walk is only about 0.5km. The muscle myopathy is still problematic. I will stay with 3.5mg until I feel a bit better (months rather than weeks). It is really a low dose so no rush to decrease. This part of the journey ain't easy. GOOD LUCK!
Your fatigue and malaise could well be due to any or all of a combination of factors: not being on enough Pred now to control inflammation from PMR, reaching a level of Pred where your adrenal glandss are now trying to splutter into action again, the Methotrexate (I had to abandon it as it made me so wiped out) or some other thing going on/comorbidity. It needs further investigations in all these areas to tray and unravel what's going on. If it's that you need more steroids maybe blood tests would help, or temprarily increasing the Pred to see if it helps. If it's adrenals you need tests for that. Keep pushing the docs for help and answers
I am on both pred and MTX and each time I drop from 5mg to 4.5mg the fatigue kicks in. Today is my third try. I do get achier also but Tylenol seems to help. The fatigue is really hard. I see my rheumatologist in 9 days so am going to stay at 4.5 til then.
Odd turnaround of energy symptoms.
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When will energy return?
After PMR---energy and strength
PMR? and lack of energy
