PMR in a 45 year old

Hi, I had a sudden onset of pain and stiffness in my legs and arms a month ago combined with night sweats. I have spent the past two weeks in hospital having tests with the outcome that my rheumatologist believes I have PMR. He has put me on 20mg of Pred to which I believe it m responding to. Before I was ill I was a fit guy but I have seen a lot of muscle wastage in my arms and legs over the past few weeks which worries me (although I realise being in bed for a few weeks and the steroids has a big affect). A typical day for me is to wake up with night sweats early morning and have pain in my arms / legs at around 7am. I take my Pred around 8am and then gradually feel better throughout the day until the evening when I feel the steroids are wearing off. There's no pain but a lot more stiffness. I had been mixing stiffness up with pain previously as I thought taking the steroids would eradicate the stiffness too and stop me shuffling about. Should the stiffness ease off eventually as I need to try and build up the muscle mass in my arms and legs? As I'm 45 yrs old I seem to be on the young end of the scale to get PMR. I work in London (but live outside) and keen to get back to work but the muscle stiffness is holding me back. I would really appreciate hearing other people's experiences. Would a slight increase in steroid dosage get rid of the stiffness or is it a case that the stiffness should slowly reduce after a few weeks / months? Also, the nightly sweats I've had daily for the past month have not eased, can I expect these to go anytime soon.

Thanks for your comments!

34 Replies

  • Hi Underlee,

    Sorry to hear you have PMR at such a young age   - yes it is unusual, but certainly not unknown. If you've  read many posts on this forum then you'll already know that. 

    Unfortunately you will get muscle wastage, from being bed bound, and also from the Pred, but so long as you exercise regularly but gently (not to the extent you did before)  you should be able to minimise the effect. Fortunately men do seem to recover better than women, and as there are a few men on this site hopefully they will confirm that and advise you better than I can - female and 20 yrs older! 

    The stiffness should decrease as well as the pain, so maybe you are not on quite enough Pred - the trouble is there are 'sort of' set levels doctors prescribe - and it would make sense that a strapping male requires more than a small female, but not sure than they think about that. As somebody commented in another post when her animals were put on steroids they were weighed to ensure the correct dose - that doesn't seem to happen with humans! 

    I appreciate you want to get back to work, but don't try to do it too quickly, that's when people sometimes come a cropper. PMR is a long term condition, and unfortunately it takes as long as it takes. Friends, family and work colleagues need to know that as well - it's not macho keeping it to yourself and pretending it doesn't exist! You just have to learn to control it - that means getting the inflammation under control, then keeping it under control as you reduce - so not too  fast. And learn to pace yourself, don't try and do everything one day because you feel good, PMR has a habit of biting you back the next day. 

    Sure others will come along with more advice, but what I would say is - once you get to the position where you control the PMR and not the other way round - you will be confident that life's getting back to normal. Good luck and keep us informed of your progress. 

  • Thanks very much for your advice DorsetLady, I'm slowly coming to terms  with the fact that there is no quick fix with this. I'm seeing my consultant on Tuesday so will discuss my dosage with him - I agree with your comments on size as I'm 6'1" and 90kg so I would think I may need slightly more than a smaller lady! I'll get my latest blood results back then as well. My CRP last week was 105 so I'm hoping that will be down too. Fingers crossed!

  • Good, glad to hear you're seeing a consultant so quickly, guess that's probably because you were diagnosed in hospital rather than by GP. Be interesting to see what he says about weight/dosage scenario. 

    Don't let him pressurise you into a quick reduction though. Hopefully your CRP should have decreased significantly, but nevertheless, the way forward is gently! 

    And, even though it's difficult (you're about same age, weight and I guess a professional as my son, and I know how hard he works) you really need to try and reduce your stress levels. 

    I'm a great believer that stress is one of the major causes of PMR or GCA, so you need to do your bit as well as the tablets. 

  • Thanks, I think the auto immune response was triggered by a steroid injection I had in my back a week before (as I had a prolapsed disc), although I can't prove this. I'll let you know how I get on with the consultant. Thanks again for your advice. 

  • Fairly unlikely - pred suppresses the autoimmune system which is why you are now on it for the PMR. But the trauma of the prolapsed disc might not have helped.

  • Sorry PMRpro, what's fairly unlikely?  Thanks

  • Sorry - I was replying to your comment immediately before:

    "I think the auto immune response was triggered by a steroid injection"

    The steroid injection is the same stuff you have been given to manage the PMR so unlikely to have caused the problem. On the other hand - the trauma of the prolapsed disc could have been the final straw that upset your immune system and sent it into a tailspin - PMR is the name given to the symptoms of an underlying autoimmune disorder that causes inflammation in blood vessels which interferes with the blood supply to the muscles. 

    But there's a much longer response for you to read!

  • "the nightly sweats I've had daily for the past month have not eased, can I expect these to go anytime soon."

    Not if I'm anything to go by, no! They can be due to both the PMR and the pred so I'm afraid it is likely to be around for a while! I also get the sweats in the early morning - the inflammatory substances that cause the problems are shed every morning at about 4.30am and I find that that is when I wake with a sweat very often. It may improve in time as the existing inflammation throughout the body recedes. In some people it may take more than the typical few days that some of us experienced so be patient.

    The rate of muscle loss when on bed rest is phenomenal and while I don't imagine you just lay in bed and did nothing you won't have been doing much. Years ago a load of Marines participated in a study. They did a fitness assessment on Friday and then spent the weekend on bed rest with no procedures. They repeated the fitness test on the Monday and daily until they were back at the same level. On average it took 6 weeks - and these were very fit healthy men with no medical problems or investigations who just spent 2 days in bed! The steroids shouldn't have done much yet though. It might be worth asking the pharmacist about essential amino acids supplements - to help build the muscle back a bit faster, they are recommended for use in bed-bound patients.

    You could try taking the pred when you wake early - the sooner it is there after the shedding of the new inflammatory substances the better and many people have found that taking the pred early and settling down for another couple of hours helps - the pred is beginning to work by then and has had less to do when the inflammation is less. 

    A study showed the optimum time to take pred to avoid morning stiffness is 2am, the peak pred level in the blood is then reached at about 4am before the inflammatory substances I mentioned earlier. The form of pred I take is taken at night and is then released at 2am. I get up with no sign of morning stiffness and seem generally to have managed with a lower dose for some time - I'm having a flare at the moment though. Before you ask - the pred I take is only available privately in the UK and it costs a lot!

    The received wisdom is that a dose of 15-20mg is adequate to get a result in most patients - I suppose that if you are 90kg and much of that is muscle you might need a bit more for a faster response but it was found in another study that 12.5mg achieved a result within a month in 75% of patients, the smaller they were the faster the response. Be patient. It might help to take 15mg in the morning, as early as possible, and the other 5mg an hour or so before the stiffness starts to return. 

    On the other hand - once you feel better in the morning a warm shower and gentle stretching will get the blood supply going. I had 5 years with no pred - and got moving by doing an aqua class in a warm pool every morning (I worked freelance so it wasn't too much of a problem) and could then just manage a Pilates or Iyengha yoga class. Once you START to move it becomes an improving cycle - you move more, you become less stiff as the blood supply to the muscles improves as you vasodilate. To be honest - a glass of wine had the best effect for me but I'm not recommending that to anyone! 

    However - don't overdo it. Your muscles are intolerant of acute exercise and can neither tell you you are overusing them nor recover as fast as normal. Start small, increase in small stages, rest appropriately and you will probably be able to do a fair bit. But don't be misled - I have got 2/3 of the way down a very short ski run having thought I was fine and could manage "just one more" only to feel as if I had hit a brick wall!

    What do you do? Getting back to work is very dependent on that as well as how you cope with your commute. I could manage to commute now - but I'd still be pretty tired. It's the getting going in the morning that is the biggest problem and too much for many but everyone is different. Is working from home an option?

  • Thanks so much for the info, it's really helpful. I split the Pred into 10mg at 9am and 10mg at 9pm a couple of days ago but find that I didn't sleep very well and had more pain in the morning when I woke up, so I've gone back to taking the full 20mg in the morning. One plus point was I didn't have the night sweats though. I will look at perhaps splitting to a 15mg in the morning and 5mg in the evening and also taking the full 20mg when I wake up early morning. For work I commute for an hour into London so definitely do not feel up to that currently although I can work from home so will be organising an action plan in the next couple of weeks to ease myself in. I'll start to get my muscles moving too - I wasn't sure whether I should stretch and exercise whilst I still had the stiffness so will give it a go. Interesting what you say about the Pred you take at night, I'll speak to my consultant about that on Tuesday. 

  • It's called Lodotra and costs up to £100 per month if you are on 20mg/day! 30 tablets cost about £25 whatever dose, 5mg, 2mg, 1mg,  ($1770 for 30 tabs in the US I'm told) and you have to combine them to get your dose. I do know a couple of people who pay for them privately. Not available on the NHS but mercifully I don't live in the UK! But if you take the ordinary stuff at 2am it will do the same - you just have to wake up and get back to sleep! I know a few people who take ordinary pred late at night before bed or very early in the morning  - same effect there.

    It's fine to do gentle exercise, just don't overdo it. You might find suggestions here:

    He was a fire fighter and training for a run when he developed PMR at 51 - ending up in a wheelchair but now back to running and you will find his story here:

    as John Robson - he is also that group's press officer and you'll find him under "Our People" on that site.

  • Great, I'll check out the Lodotra and the links. Thanks again for all your advice.

  • By the way - the most recent Guidelines suggest up to 25mg/day starting dose so perhaps your rheumy might add a bit when you see him if he feels it appropriate:

    Recommendation 3 - but they do say use the lowest dose that gets a result and you do sound to have got that. If you start higher you will just have further to reduce - and you don't stay at the starting dose, you will look for the lowest dose that gives you the same result as your starting dose. But quite a lot of people need a couple of weeks or even a bit longer for the best result to appear. Not everyone by any means is totally pain-free and back to normal - though there are rheumies who will try to tell you you should be! We wish!

  • Thanks, I'll definitely mention this to my consultant.

  • PMRpro, I have also noticed that a glass of wine eases my pain considerably but it certainly doesn't help with night sweats! I wouldn't recommend it as a daily regime but the occasional glass gives some relief. 

  • I'll bear that in mind! I've totally changed my diet since I've had PMR and unfortunately alcohol is off the menu for the next few weeks though. 

  • Living in Italy, in a wine region...

    I honestly don't think it made any difference to the sweats at a point when I didn't drink for a few weeks - I have tried omitting a lot of things at one time or another: alcohol, gluten, dairy, most carbs... 

    Low carbs achieved weight loss - 38lbs in total. Nothing else made any difference.

  • Hi

    Sorry you have this illness so young

    I was working when it struck  had 4 months of work then phased return back to work have been back full time since Nov 15.

    It is hard trying to reduce steroids and work I started at 15 Preds and reduced to 10 two weeks ago.

    I am unable to do lots of things that I used to so please be careful listen to your body it really is a question of the mind is willing but the flesh is week.

  • Thanks Rose, after only being on this forum for a short while I've come to realise that listening to your body is a major stepping stone to getting better. I mentioned in previous post that I will try and organise a get back to work plan but it will only start when I feel up to it. I'm quickly learning that I need to walk before I can run (very apt)!

  • Hi

    Hope all goes ok

    My company are very good had full pay for  3 months then half pay

    Phased return over 6 weeks with full pay but I do get very tired and some nights know I need to sleep even if I have to go to bed about 8.00pm that's what I do .

    It does get better hope your friends and family are under standing that helps a lot /


  • I'll check with my work on an illness plan, they've been pretty good so far. I'm very lucky that my wife has been a fantastic support too, so I'm optimistic about getting on top of this.

  • It's good to be optimistic and face up to the challenges - but don't get into a mindset that this is something you can "fight" or "beat". You will have a far happier journey if you accept that PMR and pred are going to be constant companions for the foreseeable future and have a nasty habit of having the final word. Use that energy to adapt life to the best you can - don't waste all that effort!

  • Yes, that makes sense, thanks for the advice. FYI - I took 15mg of Pred at 2am this morning but then had trouble getting to sleep and still had the night sweats about 4am. I took the remaining 5mg about 6.30am, managed to get some more sleep and had no pain when I woke at 8am (although my legs are stiff as ever). I guess it's a case of trying different dosages at different times. Tomorrow i will take the 20mg of Pred as soon as I wake up to see how I fare the rest of the day. most nights when I have to go upstairs to bed at 10pm I seem to have a small attack that lasts 5-10 mins before it settles down. My current thinking is that I may need to increase my dosage to eliminate these attacks and reduce the stiffness overall. 

  • Possibly - but the dose you are at is just a starting dose, you are unlikely to be allowed to stay at even 20mg, you will reduce to the lowest dose that manages things acceptably. You may not get rid of the sweats for a long time - they are part of the underlying autoimmune disease and the pred does nothing for that, it is only managing the symptoms for you until the activity of the autoimmune bit burns out, fully or partially.

    By the way - are you on plain white pred tablets or have you been given enteric coated pills which are red for 5mg and brown for 2.5mg?

  • I'm on the white tablets (5mg)

  • That shouldn't affect how long it takes to work then - but some people don't absorb it as well as others. Everyone is different - I know, it's boring, but it's true.

  • Ah ok, I'll try a few combinations over the next few days to see which works best for me.

  • Hi. You have my sympathy! I am a 75 year old relatively fit male, still playing squash weekly, and taking plenty of other exercise. I weigh I at about 75 kg.

    Was diagnosed with pmr in dec2014. Was started at 20mg pred daily, but was increased to 30mg by my GP for almost exactly the same reasons as you describe. I got similar advice from this forum - from the same people as have replied to you so far. I have generally followed the advice and it has been excellent. I couldn't have distinguished between pain and stiffness as they both hurt!

    So far, I have tapered down to 7.5mg, but not without a few hiccups down the way at the 10mg mark. Whatever else you do, try to take it easy and try not to get too stressed. Rest is very important.

    Good luck.

    Finally, I recommend you get a copy of Kate Gilbert's book. PMR & GCA - a survival guide. It's available through Amazon, and is very helpful.

  • Thanks very much Charlie, very interesting to hear. How long were you on the 30mg dose and did your stiffness improve?

  • For 3 weeks, and yes it did improve. I then tapered to 25mg for 2 weeks, an d then 20 for 2 weeks.

    There seems to be no pattern to pmr though, and everyone is different.

  • Thanks Charlie

  • I've had PMR for about 8 months and started at 12.5 mg of prednisone and am currently at 5 mg. It's well known that prednisone at night can affect sleep in many people, myself included. I found that splitting my prednisone doses has worked best for me for pain management, taking my first dose in the morning with breakfast and the second dose no later than 5PM. As long as I did this, I had no sleep problems. Of course we are all different, so you have to do what your body tells you. 

     I have been able to reduce my prednisone by 1 mg. every 3-6 weeks. Your body will tell you if you've reduced too quickly, and if that happens, just go back to your previous dose and try again in a few weeks. Certainly, listen to your doctor, but my rheumatologist just gave me some guidelines to follow for reducing my dosage and left it up to me to adjust when I felt ready. I also have osteoporosis so getting off prednisone as quickly as possible is a priority for me.  I see my rheumatologist in a few days and I think that my tapering going forward will be at a little slower pace.

  • Thanks for the info Garo. I've been on Pred for a week and a half now and I'm still trying to work out if I have enough of a dosage. I took 15mg at 2am this morning and 5 mg at 6am and unfortunately haven't been feeling  great today  (lot of stiffness in my legs and a little in my arms this afternoon), so I'm going to discuss further with my consultant tomorrow. 

  • Hello Underlee, you've been given lots of good info and suggestions even though you wish as we all do that we didn't have to be here. :-(

    I just wanted to address a question in your first post about when would the stiffness go.  For me this was the worst.   I couldn't get out of a bed in the morning,  a chair after sitting a while or out of a car after a drive without help.  It was like s rigor mortis had set in.  After two doses of 10 mg Prednisone it was like a miracle.   I tapered slowly and was doing very well after two years and no flares on 6 mg when unfortunately I got hit with GCA.......that's another story.  I wish you the best of luck on your journey. 

  • Hi animi, yes the stiffness is the same for me although I still have it after the Pred, it's just the pain that goes. I guess I'm still in a acute flare up phase. Sorry to hear about your GCA but thanks for getting in touch.

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