Hi all, I've had PMR since last December and been on Pred for about 5 or 6 months now. Started off on 15mg and have been on 9mg for past 8/9 weeks. I still have some pain in neck, arms, backs of legs but nowhere near what it was before and I'm not overly concerned about it. BUT the last few weeks I've been suffering from fatigue (just feel knackered and washed out, cheeks on face feel a bit puffy too but they don't look it and maybe just from putting on weight - must have put on a stone since starting on Pred).
So is it likely to be the PMR causing this fatigue (I sleep OK at night but wake up feeing like I've had no sleep; I remember taking Amitriptyline some years ago and athough it helped me sleep I felt awful during the day and this reminds me of that time) or is it the Pred or a combination of the two?
Thanks Dave
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David_H
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In my experience, yes, the PMR is likely to cause fatigue. I wake up yawning after a perfectly good 7 hours of sleep and have even been known to fall asleep again after breakfast. I sometimes have a nap in the afternoonand feel quite lively all evening. So don't despair. Your fatigue is a normal symptom of PMR. Try to programme rest and the odd forty winks into your daily routine.
Since you have reduced to below 10mg quite fast it could also be your body asking you to slow down a bit as your adrenal glands have to wake up again. It can be at any point below about 10mg and here is the point to go very slowly. You say you are getting some PMR-type symptoms which adds to my suspicions about the speed of reduction.
There is a paper from rheumatologists, and aimed at GPs, who used to work together in Bristol who use 15mg for 6 weeks, 12.5mg for 6 weeks and then keep their patients at 10mg for a year before continuing the reduction 1mg at a time. They find this reduces flares to 1 in 5 instead of the 3 in 5 that is more common with other reduction schemes.
Very very few people manage to eliminate all symptoms at any dose. What you are looking for is the lowest dose that gives the same effect as you achieved with the highest dose at the start. That's why you need to stay on that starting dose for several weeks, to clear out all the existing inflammation - then you reduce slowly to find that lowest dose that keeps you that good. In the first several months it may be around 10mg but at some later stage you may get lower. But it isn't a race - it really is a case of more haste less speed because if you go too fast and let in a flare you will have to go back up. The most common reason for a flare is reducing too far or too fast.
I find the main difference between taking the initial dose to now is not the discomfort but the fatigue which I don't recall getting before. Is this normal course of events and to be expected?
That's what I said before - it is at about 10mg that your body has to start producing its own corticosteroid again and that is why it is a very good idea at this stage to slow the reduction down to let your body catch up. Also, at a higher dose there is a sort of "pred high" for many people that balances out the fatigue of the autoimmune part of PMR - maybe you need to rest a bit more or, what is more likely, is that you are feeling better in yourself and therefore trying to do more.
Thanks. this makes a lot of sense. I do find it difficult to rest.......... there's always something that needs doing and I'm not used to sitting around. Will need to make time. Much appreciate your input
Try doing things for a short time and then rest for a short time - it is surprising how much more you can achieve if you rest at intervals. Or deliberately plan a rest with your feet up after lunch. I know it is difficult - but it does contribute to recovery from PMR. One lady decided after a flare and struggling a lot to become a "Precious Princess" - she has steadily reduced her pred and has been off pred altogether for several months. She is convinced it made the difference.
Some people are off pred in a couple of years - others take far longer. One review reckoned that about 25% take up to 2 years but are at a higher risk of relapse later, 50% take 4-6 years and the other approx. quarter much longer, sometimes needing a low dose of pred for life. German text books state an average of 5 years.
I've had PMR for well over 10 years, have been on pred for nearly 6. I've never been aware it had gone into remission, although in that first 5 years it did improve a bit - or I learnt to manage it better. I've had a couple of major flares - but am now on 4-5mg, am OK at 4 but feel better at 5mg. But I feel well, only very minor problems that I can live with and am really barely aware of. After all, I'm 10 years old than when I last felt really well, I have to expect some creaks!
Such a long time! So I have to mange this 'exhaustion' for maybe 5 years!?
I read some sufferers are helped by splitting their Pred dosage between morning and evening. Is this a good idea? My GP told me to take all in the morning as if I took them at night I could suffer nightmares.
I don't know about nightmares, that isn't the problem I would have highlighted - taking pred all at once in the morning is meant to reduce the side effects and the amount of adrenal suppression. However I suspect that that is more important for short term use of pred. For some people pred stops them sleeping. But everyone is different, and the only way to find out the best way of taking YOUR pred is to experiment a bit. Maybe 2/3 in the morning, the rest at night is better for you - or half and half, or all at night - try one or other and see.
Dave, tell me about it. I get the same feeling of fatigue, I am not tired wanting to go to sleep but just feel exhausted. It hits me like a thirty ton truck sometimes.
Totally agree with others, think this is your body saying time to steady down on the reduction plan for a while. As everybody says, no point in rushing headlong into reductions come what may if you don't feel okay. Suggest you stay on present level for a few months to let everything settle, it may sound disheartening, but much better than have to increase Pred, that really feels like a retrograde step! When you have stabilised and don't feel so wiped out - some days you still will, afraid it's the nature of the beast - then when you reduce, suggest you do it 1/2mg at a time, and on a slow programme (there are many slightly differing ones) rather than an overnight drop. Some of our bodies are more susceptible to changes than others, so think of the tortoise and the hare! Does it really matter if you're the tortoise, so long as you achieve your aim at the end of the day. Take care.
Hi Dave im on 9 mg pred now and 25mg mtx injection weekly I suffer fatigue all the time .Ive gca/pmr ,type1 diabetic ,addisons ,sticky blood ,and vitiligo.The fatigue is my main problem,my consultant has given me a booklet ..How to manage fatigue ,also support groups ,im in north east one for pmr/gca have access to information on fatigue.I had to be ill health retired as a consequence of illnesses.Im on warfarin ,insulin ,bp tablets ,statins ,amytripeline .aspirin ,aswell as pred and flurocortisone.Im tired just writing these out.Good luck ,I try a swim now and again and find non weight bearing experience good for muscles and joints,
Hi Dave. Like you I started on 15mg pred last Nov/Dec. I have been on 10mg for the last few months but have just reduced to 9.5mg over last two weeks of alternating 10 and 9.5. I notice the thigh and glutes are showing signs again but not too bad and this is the same as when I dropped to 10 from 12.5 so I will persevere. I have noticed the exhaustion more now but I do give in to it if possible and relax as needed. I have been doing a gentle form of tai chi for the last 5 weeks and love it. More importantly, my muscles love it and don't react in any way unlike aqua aerobics, line dancing and long walks. I am prepared to stay on this dose for another 2 months at least before thinking to reduce by another 0.5mg as I am quite OK being the tortoise on this journey as I dread having a flare up. This site is so much help. I'd be lost without it. Good luck on your journey 😊.
Thanks for your reply. It wouldn't be so bad if the fatigue was a 'I feel tired so I'll have a nap' type; it's more a 'I feel totally washed out and don't know what to do about it' type. When it wears off (and it may take a few days) it seems to be quite sudden and I feel normal until the next time which may be the next day
I felt exactly the same at your stage of Pmr....Ok...ish then an awful day or two. Dizzy,more than tired - exhausted, wiped out,no energy. You just have to rest and do nothing until it passes. Pleased to say 3 years and 2 months after my first symptoms ( only 2.5 yrs on pred though) those days for me are now very rare. I have managed to reduce very slowly to 2 mg a day and feel well. Able to do most things I want to now.
Poppetpain. could you please start another threat so that you can tell ne all your thigh/glute symptoms and what you do to alleviate this horrid pain? I would be so grateful for some advice especially the relationship between pred and the onset of the pain. Then could we discuss it?
Hi. I have started a new thread "Pain in the butt" and thighs. I don't know that I can advise you per se other than do as others do and swap experiences. It really is a journey of trial and error with the hope that the errors aren't too painful isn't it as we all react to the medicine and PMR differently. My sister in law has RA. If I had that as well as this I don't know how I'd cope....you are very strong and I'm sure your experiences will help others to cope. I am 66 and like you was active doing table tennis, badminton and rambling. It comes as such a shock when you become one of those folk who "can't" do something. I have tried aqua aerobics, line dancing but they were too intense on my muscles. I now do tai chi which is agreeing with me and very enjoyable as long as I don't do too much. It's the holding back on everything that drives me mad!!!! I am thinking of trying Bowen as my sacroiliac joint in my right hip is painful and is giving me a deep ache right down the outside of my right leg to my ankle. It's an old problem which resurfaced after some gardening last week (I didn't hold back enough!!). Look fwd to hearing from you on my other thread. BTW I checked with my Dr re my last flu jab...I didn't have one last year but started with this around the time I would have had it. Take care. Mary😊
I too was diagnosed in early January and am currently working from a start of 15 mg to 10 mg in a couple of weeks. It seems from reading this forum quite a number have started on the PMR route around the same time! Tiredness is an issue for me too. I find that a couple of hours after taking my Pred I have a nap if I am sitting down but not if I keep active. Evenings are another time for napping even with the TV on so I try and keep my hands busy ( knitting etc.) so that when I go to bed I sleep. Unfortunately like you I have put on weight even though I have reduced my intake. I find my back aches much more quickly and I am forced to stop and rest. I am not sure whether this is because I can't exercise like I used to.
So keep positive, you are not alone in this and this forum is a great help. I love Dorset Lady's tortoise and the hare comment. It's how I feel with the extra pounds on. Best wishes.
Hi David, I was diagnosed PMR the same time as you, and got down to 10 mg last week. I started to feel that familiar ache/pain in the back of my thighs (not unbearable by any means), but started to wonder whether at 10mg, I had reached the point where I needed to take more care reducing.
However, because in my case the preds have always taken some 3 to 4 hours to kick in, then lást only for further 10 or 12 hourś, I decided to take 5mg In the morning with breakfast, then 5mg at night before going to bed. This has worked really well for me, and I am back to minimal pain. I am still watchful, and have taken note of all the advice and warnings which have come from your original post..
By the way, the fatigue, and wish/need to sleep is still very much there, and I constantly have to accept the need to rest - difficult though this is. If I don't I pay the price!!!
Cheers Charlie. how long did your GP tell you this could run for? general opion seems to be 2 years if you're lucky but i don't know if this means suffering at a high level (extreme fatigue, etc) for all this time?
Hi Dave. My GP surgery hasn't said much about tiredness; I don't think they quite realise what it is like. In all other respects they are great, and I have been told to expect the PMR to last about 2 years.
It's a long time, but I am hoping I am about a quarter of the way through now!
Thank goodness for this forum; I'd have been at a loss without it.
"I have been told to expect the PMR to last about 2 years."
Hate to be the party pooper - but don't set your heart on it. There have been so many people on all the forums who joined because their doctor told them 2 years and it didn't happen - they thought they had "failed" in some way. Only the very lucky are through this in 2 years. 3 or 4 is far more common and some take even longer. And it takes far longer if you try to rush down your reduction - which leads to flares and repeats. Slow and steady - and don't be forced or enticed to reduce if you don't feel right about it.
I am now 79 and started with PMR in 2000 and it is still with me. Have been on 5mg of Pred in the morning for yonks and get no pains but the fatigue is always there, you just carry on regardless yawning as you go but I do find an after lunch nap is very helpful.
Sorry to be another party pooper, but at least those who get away lightly, can feel privileged. Best wishes to all, Curly.
You are the first person I have come across who has had PMR longer than me - I'm on 15 years and counting now. Until this current flare I actually didn't even have much fatigue but the last few weeks with a few add-ons (atrial fibrillation and being given a pacemaker) have really poked the fatigue into life! 5mg is my dream!!
says "... 50% discontinued by 5 years. Only 58% discontinued glucocorticoid use by 10 years after disease onset. At 10 years, however, at least 97% of patients reached a glucocorticoid dose of <5 mg for 6 months."
Which suggests a good 40% still have a need for pred at 10 years, whether that is because of adrenal problems or the PMR remains an unknown and how much longer they need pred is anyone's guess.
`Which suggests a good 40% still have a need for pred at 10 years, whether that is because of adrenal problems or the PMR remains an unknown'
It may be worth bearing in mind that we take the Pred primarily to conquer the pains, but the fatigue is obviously a different manifestation of the disease which may require a higher dose or even a different intervention. Nobody wants to take more Pred than necessary, so we reduce the dose until we can `get along with' the remaining fatigue. Personally I find that riding my bike hard every day is a big help with the fatigue aspect. Yes the riding is tiring but that is OK as it fades and is different to the PMR fatigue which is eased by exercise.
Tiredness in general is odd as we have only the one word to describe what are tow distinct conditions: mental tiredness and physical tiredness. Hunter-gatherers only needed one because the two increased together but these days we can get tired working at a computer or running and the antidote is to exercise if mentally tired and play a game or do some other mental activity if physically tired.
For me at least, the fatigue of PMR seems to be `mental' in that exercise helps to dispel it.
Suppose it depends on the person - computer work doesn't create a tiredness feeling for me (not inside about 8-10 hours at least), and pred at any dose never relieved it. But it doesn't have to be vigorous exercise for me to feel better - just kicking my butt out of the door and a walk is enough. But overcoming that inertia requires a major effort, especially if I am on my own.
` computer work doesn't create a tiredness feeling for me (not inside about 8-10 hours at least), and pred at any dose never relieved it.'
I don't increase or decrease my Pred according to how tired I feel, having fiddled about with it like that eight years ago without success, I gradually reduced by half a mg at a time till I encountered problems (at zero) and then increased until I found my present level of 4mg several years ago. That banishes the pains but it not the feelings of fatigue which I just ignore rather than take more pred.
I am now so used fatigue being part of my life that, apart from frequent yawning despite a daily 30 minute sleep after lunch, most friends are unaware that I have PMR. As regards computer work making me feel tired, I simply stop if that happens and go for a lie down. I am not particularly aware of anything making me feel more tired against what is a general background of fatigue. But having written that, I do feel more energetic in the mornings and notice the fatigue more in the afternoons even after my siesta (e.g. I am feeling tired right now at 1.45, but will shortly be going for a bike ride anyway).
Checking back for dates I came across one of my theoretical musings regarding the PMR joint pains I had back then (when it started I had to struggle out of bed and could only get my socks on by dangling them one at a time at the limit of my reach and bend!). Back then, I thought that the pains might be due to high levels of CO2 in the blood. Rapid movement of the joints would then cause transient pressure reductions in the joints which would bring the CO2 out of solution and cause a momentary bubble which would then collapse and cause cavitation which produces the clicks and pains I experienced back then. I therefore cut out the sugar and alcohol which was presumably feeding the organisms responsible have not had any joint pains for years now. However I do still have the fatigue, so I suppose I had better cut out the after lunch blackcurrant jam on toast and the teatime Alpro yoghurt and see if that completes the job. I will give it a try and report back.
Yes it is a lot of meds but im not on them by choice and my consultants have gave me them, feel like hoying away but my body wouldn't have it.Im presuming that im receiving good advice I have no reason to doubt my consultants I have 3 who communicate with each other I see letters.They say conditions and meds play part in fatigue.!!
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