Hi

Hi, I have recently been diagnosed with PMR, I'm only 45 with 2 young kids and am wondering if this is right?? I have constant pain in my legs plus arthritis in my knees and I'm thinking I'm too young for all of this. In the mornings I can hardly walk until I have got myself moving and am suffering from chronic fatigue plus depression. But it is only in my legs! Can it just be like that? They have put me on steroids saying that if it works then that's the diagnosis. The first week worked brilliantly then went down hill but then again I was so busy and constantly in my feet during half term I'm not surprised. I seriously hit a brick wall after that and couldn't function and completely broke down/apart.

They have put me on pred And I can't stop eating and reckon I have put a stone on in 3 weeks!!! I keep getting serious hot flushes and I am still not sleeping well. I don't know what is worse. Last week I stepped them down for the first time (I'm only on a 2 month course) and suffered the "brick wall" again and am absolutely shattered again!!

God my life is so depressing right now. I have looked at some of your posts but ran out of mental energy to read it all. Any help advice or anything would be gratefully received

many thanks xx

37 Replies

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  • You are not going to like what I'm about to write and I really don't want you to think I am being harsh, cruel or unsympathetic - but this is the reality I'm afraid if what you have is PMR.

    There is no reason at all why it shouldn't be PMR as we discuss here - there are about 3 or 4 new members on the forums in the last couple of weeks who are all in their early 40s. PMR is a name given to the symptoms of some underlying disorder - in this case an autoimmune problem that is causing your immune system to attack your body by mistake and cause inflammation.

    When you are given pred to see if it works as a quasi diagnosis and you feel better - then you MUSTN'T then go back to catching up with the things you didn't do before because you felt so poorly. The pred is only dealing with the symptoms to allow you a better quality of life - it has no effect on the underlying disorder and the autoimmune process is still there. You are still ill and have to learn to pace yourself - and rest in between doing things. I know, I know - you are indispensable in the family and you have to do this and do that. This is a whole new normal that you have to learn to adapt to - there are a lot of autoimmune disorders out there and if you have to have one then PMR is probably as good as it gets. It isn't life threatening, it doesn't cause long term severe damage like rheumatoid arthritis and it generally does go into remission sooner or later - though the time is measured in years not months so I'm not sure why you've been told to take pred for a 2 month course.

    You can help the eating and weight gain to some extent by cutting carbs - it has helped quite a few people on the forums. Pred changes the way our bodies process carbs, take them out of the equation and it helps some.

    Here is a link to a post on another forum which has links to reading about PMR - other forums, support group websites, all reliable and approved information in a more potted form than trying to read all the posts on the forum here:

    patient.info/forums/discuss...

    To help get your head round living with chronic illness read this:

    butyoudontlooksick.com/arti...

    When you have read around the thing a bit come back and ask more specific questions. I could write for hours explaining things but you don't want to read it all just now. It will come - but you have a long journey ahead of you and I'm not going to gloss over that. For the moment you have to learn to accept that you are unwell. It will get better - providing you learn to pace yourself and ask for help for the things you can't do. The hot flushes may be the pred - or they may be the PMR. The pred helps with the pain and stiffness - and beyond that you will be able to do something because of that relief to help yourself. But hot flushes and sleeplessness are going to be part of life for a while - you are going to have to learn to manage it all as best you can, and you will. There are a lot of people here who will tell you their stories and their tricks. Not too many of us had to cope with PMR and a young family - but we have other things we have to deal with.

    You'll get there - don't worry.

  • Thank you for your response. It has made me feel so much better and not so alone and completely ignorant. I have a don with Soecial Needs so is draining in it's own right. I have found that with him I viukd only take info on bit by bit (not all at once) and I suppose I am the same with myself. It's great to find someone who can empathise with me and you have given me just enough to digest right now. By thank you

  • If you have the chance to do other reading online, google a blog called Despite Lupus by Sara Gorman. She was diagnosed with lupus (a far nastier and life-threatening autoimmune disorder) just a few weeks after her wedding. Although it is a different disease, the living with it quite similar in many ways, especially the pacing bit, and her descriptions of how she gets round things looking after a home and two small daughters a well as running her business and doing charity work for lupus is very illuminating.

  • Hi Nicky, I am so sorry you might have PMR. The trouble is we take a pill and feel fine so assume that we can carry on as normal. PMR is lurking in the background and as soon as you overdo things it leaps out. You need to stop as soon as you feel tired and you should rest, don't be tempted to push yourself. I could eat a horse when I first started pred, in fact I could eat two horses at one sitting. I also went round looking like I had just come out of the shower, I did tell someone once I had just been swimming! I tend to listen to the radio when I cannot sleep. Some people are mad enough to get up and clean the house, not me though! The pred can cause you to feel depressed. Give in to the fatigue, that is something that I still have, although the hot sweats have improved. My PMR started in my shoulders then went to my thighs, I kept being told it was a virus. Have you been diagnosed with arthritis or could it be the PMR do you think?

    Starting to reduce the pred after just three weeks is quite quick. It is suggested you should stay on the dose for six weeks and then reduce when you and your blood markers are stable.

  • Hi thank you for sharing it does make me feel so much better to that I'm not alone. My consultant put me in 3 weeks of steroids but gave me far too many pills to make that possible so am abut confused. I am waiting for another appointment in about a month so steeping down I should be off them by then. Let's see what he says. He did say short burses of steroids is the way forwArd. Have you an opinion on this?

  • If you have PMR you should not be cutting down to zero in two months. Sadly PMR is a long term condition and can last years rather than months, when with any luck it goes into remission sooner rather than later. Sometimes doctors try a one or two week test to see if you respond to pred so they can confirm PMR. After around three weeks on pred the body's adrenal glands give up producing cortisyl as the steroids are doing it for them instead, so they go to sleep until you get down to around 7.5mg when they start to wake up again. Cutting down to zero too fast can cause real problems. Your consultant is talking total rubbish in my opinion if he thinks short bursts of steroids are the way forward. What sort of consultant is he? You start at around 15mg ensure the inflammation is controlled, so you are reasonably pain free, although most people are never completely pain free, and blood markers look good and slowly work down ensuring the inflammation is controlled before cutting down further each time.

  • Thanks for your opinion. Everyone is say the same thing re pred so I think I need to go and see my gp and discuss with them asap. Only have have about 2 weeks left on my supply so my prescription is def what he wanted. God why does it have to be so hard!!!!

    Thanks so much for your time to reply

  • I must admit there do seem to be some incredibly inept medics around, it is like a breath of fresh air when you find a good one. Good luck with your GP.

  • If you are going to have to manage this with your GP (and he can only be better than a rheumy who thinks the way forward with PMR is short bursts of pred!) then take this paper with you and ask them to read it:

    rcpe.ac.uk/sites/default/fi...

    It is by specialists and aimed at GPs to help them manage PMR without recourse to a specialist. Your GP may know this but somehow, I doubt it. Good luck from me too.

    You've already felt what it is like if you try to reduce pred too fast. The underlying autoimmune disorder will go when it is ready, the pred has no effect on that at all, all it is doing is managing the symptoms until the autoimmune bit goes into remission - but when that will be is impossible to say. It might be 18 months or it might be 5 years - or even longer. If you have a short burst of pred, it will all come back once you stop taking it and you will need to start again - that will get you into a yoyo pattern of taking the pred and experience shows that subsequent reductions become increasingly difficult. Top experts in the USA warned against yoyo dosing years ago. Since you have no choice about doing what any of us so, i.e. hang the housework, you will probably need a bit more pred - not less.

    Since you talked about half term I assume you are in the UK - where? Maybe we can point you to a rheumy who has more idea about PMR.

  • Hi thanks for replying. It was a rheumatologist that I saw who decided on a short term burst of pred. Obviously not the right answer according to everyone on here. I live in Kent. I was going to go and see my GP to discuss everything but to be honest she is pretty useless. If you can point me to a good rhuematologist I would be grateful.

    I guess this reducing of pred accounts now for why I feel so rubbish

  • Oh dear - Kent is NOT renowned for having rheumies who are good at PMR! On the other hand, to have a rheumy who recognises PMR and admits it can happen in under 50s is a very good start. I just can't imagine where he got the idea that PMR can be managed in short bursts. It can't. I wonder if he might be open to the Quick and Kirwan paper - it is worth a try if your GP isn't helpful - all she has to do is follow the concept in the paper so she doesn't need to know a lot to start with and she will learn.

    Yes, it is probably the reduction that has you feeling so bad - what dose did you start on and for how long and then how much did you drop by?

  • Hi, thank you for your reply. I guess from reading what everyone said I am lucky that my rheumy even considered it. Maybe I didn't understand the medication side but def thought he said short bursts. I started on 15mg and have dropped down to 10 at the moment. I was about to drop down to 5 with the view to coming off but I guess reading everyone responses not a good idea. After the first drop down I went rapidly downhill and hit a brick wall (physically not literally lol) but didn't understand why. I am going to see my GP this week to discuss further as I am still awaiting my follow up appointment and don't want to go back to square one.

    Thank you again :)

  • Hi Nicky, Did you drop from 15 to 10 in one step? That is why you feel so awful. The standard would be to make sure the inflammation is under control, where you stay at 15 for about a month, then step down by 1 mg a week, AS LONG AS YOU CONTINUE TO FEEL WELL. A lot of people find a sticking point somewhere in that first five mg or so. (I, for example, was fine until I tried to drop to 9, and now have to go much slower.) You shouldn't drop more than 10% of your dose at a time, and need to stay on the new dose for a little while to make sure the inflammation is still under control. Someone will likely be able to give you the link to the two or three slow reduction programs if they haven't already. It is not a nice disease to have, but you know there is a lot of support and good advice on this forum, so please let us know how you get on!

  • Hi my tablets only come in 5mg so went from 3 to 2 overnight. I now understand why I feel so bad and why I suddenly hit a brickwall and basically lost it. I am not stepping down again but am about to run out (4 days supply left) so am going to see my GP and discuss this with her. Everyone has been so helpful with their advice and help. Thank you

  • Hi I have downloaded the paper now and am going to take it to my GP this week. Thank you for that. I only have 4 days of Pred left so need to do something fast. My tablets are in 5mg doses so went from 15 to 10 overnight. I now see why all of a sudden I felt so bad!!

    I was told to come off it over 4 weeks so was on 15 mg for 10 days and then dropped down!! Obviously the wrong thing to do and bad advice!

  • Could you split one of your 5 mg and take 12.5 tomorrow?

  • good plan :)

  • Perfectly reasonable reduction in anything other than PMR - and if you had been lucky you might have got lower even with PMR. I was also given a 6 week taper - 2 weeks each of 15, 10 and 5mg, stop. I felt brilliant at 15mg, good at 10mg and even pretty good at 5mg. Within 6 hours of missing the first 5mg tablet I was back in bed in tears because I hurt all over and couldn't move again. I didn't get below 10mg again for a very long time.

  • Hi Nicky, just read your post now. The first reply you got from a volunteer was just completely spot on, in my opinion. Take heed that PMR is managed by steroids, rest when you need to and diet. I started with PMR in my arms, shoulders and neck over 2 yrs ago aged 51 and could not turn over in bed without suffering extreme pain or even undo my bra! My blood tests all came back not showing raised inflammatorys so they kept dismissing PMR despite me saying my mum was diagnosed with it at 49! So I was undiagnosed for several months and told it was my age! I changed doctors and the rest is history.

    I was put on a high dose of steroids and almost immediately felt better! However, the euphoria of that feeling doesn't last long. As I reduced the steroid dose very gradually I was ok for about 5 months then it flared up again so had to increase dose. Unfortunately PMR is like this and can feel it's a "yo yo" situation with the steroid dose. My PMR has shifted from upper body to lower body now affecting my legs, knees, hips and heels of all places! So it does move around.

    I would stick at the steroids, rest up when you can and manage carb intake as, I too, have gained 2 stone! try not to despair it is a case of managing your PMR and making sure all your family and friends understand it too! X

  • Hi

    Thanks for your reply. I also have it in my right heel, odd and extremely uncomfortable to walk with. I have been getting on off pain in my upper arms too but the overall feeling is total weakness in muscles coupled with pain.

    The first week of PMR I felt great but that is long gone.

    I am trying to pace myself now and realise that I need to make some lifestyle changes (including being on a permanent diet). I hardly ever ate chocolate but for the last month have totally gorged on it every evening. Definitely one to stop.

    Thank you for taking time to respond to me. Everyone has been very empathetic, understanding where I am at and full of useful advice.

  • Hi there I am 44 was diagnosed in July this year, but I no I have had it since 2012 due to trauma, I am on peds I hate them I carnt cope with the side affects was on 30mg to start then after two week hat to reduce them to 25mg now on 15mg but my leaves have gone up to 32 I am in a lot more pain legs feet knees are really bad, hips neck back fingers I get cramps in my feet and muscle spasms too, the side affects are much improved no hot flushes I couldn't cope with the hot sweats they where unbearable and so embarrassing when your hair is dipping wet and it's pouring down my face. I don't no what is worse I had raised white blood cells so been on antibiotics for seven days have a blood test tomorrow hope it comes back with some good news, I just want you to no that I no just how your feeling I am really low at the moment to, but you are not well and you carnt do the same things as you did, you have to slow down and take your time then you can still do things I do a bit then I rest a bit, make sure people close to you understand the condition it help a lot , I hope this helps a bit.

  • Hi

    Thanks for your response. I was put on 15mg of pred and to drop it down to zero after 6 weeks. The first week I felt great. By the 3rd week after a drop down to 10 I hit a brick wall and basically my body collasped. I couldn't function. I have been told that the fatigue I am suffering is adrenal fatigue so although I need to sleep it doesn't really alleviate the problem.

    I too have had hot flushes (I started thinking omg I am going through the menopause on top of everything else) but then was told that was the steroids. They are not good at all, my make up is slipping off my face, my hair is going frizzy and all around totally unpleasant. What is strange is my feet get really hot ?!?

    I am now realising that I can't fight this and need to slow down. Thank you for your advice regarding this. I definitely need to rest more, stop eating all the chocolate I am gorging on and try and lead a healthier slower pace of life.

    I hope your blood tests came back positive x

  • The fatigue isn't adrenal fatigue, there is no such thing and anyway you are taking enough pred to more than compensate for adrenals not producing their own corticosteroid. It is the autoimmune part of the PMR. Almost all autoimmune disorders have fatigue as part of the symptoms. It is probably one of the most difficult things to manage in any illness if you have to keep doing things and can't just give in - which really you have to at times or you get nowhere. If you plan a rest in the afternoon you will get more out of the evening, probably getting more out of the entire day despite the time taken out for the rest.

    That is the significance of the The Spoon Theory and Despite Lupus links I posted the other day - managing your physical resources is very important.

  • Thx I have been told so many different things it can be a bit overwhelming and confusing, but this forum has really help clarify it all. I have started to be more mindful of how I am keeping my diary and am trying to factor rest time in every afternoon. I didn't sleep well last night at all so will be def resting this afternoon.

  • Whereabouts are you in Kent? My local hospital is Tunbridge Wells and I have been through 2 useless Rheumy's there, then gone to see Professor Dasgupta in Southend and am now seeing a Rheumy in Chertsey! I think that, finally I have seen the right one! I got PMR aged 52( 2012) and was told I was too young and so wasn't properly diagnosed until 2 years later ( January 2014). If you want to know more about the Rheumy's then you can send me a personal message.

    Good Luck with this journey- I have definitely yoyo'ed my doses before I learnt from this forum that trying to do it the Rheumy's way was not helping me one little bit. A very slow Pred. reduction is the only way for me. Having said that, I have a friend who has PMR and she has had a textbook passageway down the doses and is now off Pred. less than 2 years later . I must add that she is really suffering from a lot of stiffness and, just recently, pain, and I am wondering if she might end up going back on the Pred.

  • Hello Nicky

    Yes, you are young for PMR, but it can happen to younger people sometimes. Your diagnosis seems a bit casual: just to see if steroids take the pains away and then calling it PMR doesn't seem very scientific. I assume your rheumatologist has given you proper blood tests too? If this hasn't happened, then you should ask for blood tests straight away to verify the condition properly.

    PMR can make you depressed and a lot of other side effects can come too, weight gain being a very frequent one. If you read this site regularly, you'll find that sufferers have all sorts of unpleasant things happening to them, which GPs don't always recognise or assist you with. My own GP did little to assist me in the early days and it was seven months before I got a proper diagnosis - by which time all my joints were giving me colossal pain and movement was greatly affected.

    You can find out your local PMR Group through this site and talk to other local sufferers, which is always useful. In my experience, you have to be prepared to do quite a lot of the work yourself before you get a proper diagnosis.

    Good luck!

    Greenheath

  • Just wanted to say - there are no tests to verify PMR or GCA. That is the fundamental problem. It is a clinical diagnosis based on the symptoms you present with - and to some extent also the response to pred. PMR is typical in responding well to a moderate dose of pred - nothing else is known to improve so dramatically in a majority of patients.

  • Hi yes they did blood tests when I was at the hospital. Everyone has been so helpful and given great advice, thank you too.

    I suppose now I have to make my GP work for her money. At least now I know so much more and can go in educated and not be brushed off. I will look for my local group thank you for your advice and help

  • Hi Nicky. I was diagnosed with pmr & gca at 49. Also have son with special needs so I know how difficult it can be. I feel anxiety & depression are all part of the illness and steroids. However once I accepted the diagnosis and started to find rest time for me things settled down. I could not sleep also first few months which is also the steroids. You must find time for yourself to rest. Things will get better for you. Lots of good practical on this site re living with pmr. Much better than any GP Rheumatologist or Neurologist.

  • Hi

    You are right I need to accept this diagnosis and take steps to change my lifestyle and definitely rest more. thanks for your reply

  • Hi Nicky,

    I'm 49, diagnosed in January with GCA, do think I may have PMR too, and the dr and I reckon may have Chronic Fatigue too. She did say there's no test, but I believe there is and am going to look into it more, but at the moment am going down on steroids slowly as my GCA head getting better, but still feeling yukky. Do have diabetes as well, had to go on tabs cos the pred knocks blood levels up, so that didnt help. I do understand how you feeling and as other members have said, try to rest if poss. Yes, difficult with 2 little uns and everything else etc going on, but easy to do too much, then feel completely knocked out as you've said. I'm not much help probably, other members comments much helpful, but I just wanted you to know that you're not alone. Keep us informed, take it easy :-)))) x

  • Hi thank you for replying. I'm afraid I can't offer you any advice as I'm still learning myself. But I am overwhelmed by the kind and helpful comments everyone has including yours.

    I am trying to slow down and diet has sort of started today lol.

    Take care too

  • Arh sorry, no wasn't trying to bombard you for answers, just wanted you to know you not alone. Glad you trying to slow down (don't talk to me about diets....) LOL! Take it easy :-))))

  • I don't have any trouble with the weight, rather the opposite, but I am concerned about the possibility of developing diabetes to go along with the other "benefits" of pred. My suggestion to those who have trouble with weight gain is to eat an awful lot of salad with different kinds of leafy greens. Make the salad look really beautiful with different coloured vegetables and make sure the dressing is simple (olive oil and balsamic vinegar?). The sheer effort of chowing down on massive quantities of greenery will exhaust the desire to eat more, plus the food really will satiate the appetite. Maybe it's because it takes forever to get through a big bowlful, whatever, it helps! Plus there is the real benefit of consuming healthy amounts of all those micronutrients that keep us healthy. I even read a suggestion that a meal be finished off with a salad rather than a sweet. I don't know that I would go that far; there is something to be said for just a single square of the best dark chocolate melting slowly on the tongue....

  • Hi I find muller light yogurts are good, one even takes of chocolate Orange :). I'm trying to minimise my carbs so that's a good stArt but fot the first time in my life I am craving chocolate!!! I understand chromine helps with cravings do am going to investigate that

  • Interesting. Chromium should be available in whole unprocessed foods of many kinds.

  • Have also discovered this evening that options hot chocolate seems to be satisfying my chocolate craving :) (so far!)

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