New sufferer

My pain started about six weeks ago, which I ignored at first, thinking I had pulled muscles, but then the pain in tops of arms, neck and shoulders got excruciating, made GP appt, GP recognised the symptoms as PMR, which were confirmed by blood tests, put onto pred 15mg, had no effect, returned to GP put up to 20mg, no effect, now onto 30mg, which has lessened pain sometimes, but not gone away totally, I am wondering if I have PMR, or if I am being impatient, as I have seen on the forum that some people have signs of relief within hours. I usually take between 8-9am, but only feel effects after about 3pm. It is certainly life changing and I hate being so dependant for help to do things, I have ordered Kate Gilbert's book which should arrive soon, and I can get more Jen on this illness which I had never heard of.

30 Replies

  • Morning , welcome this illness takes the wind out of you ,most people have never heard of it. The book will help sorry can't advise on dose I have other side GCA. One thing is get family involved if poss make and I mean make them read up . Remember this is a long road, at tortoise pace not a run

  • well I have not heard it take so long for pain to go after taking prd. I started on 20 mg and within 2 days the pain was gone.. so may be it could be another type of painfull complaint, lets see if someone with more, knowledge comes along with more who can help. but all the best xx

  • I was diagnosed last March and had never heard of PMR. So sorry you are now a sufferer. I was given a massive injection first which had no effect and put onto 15 mg of pred. It took about 3 weeks for it to have any effect. I am now on 6mg and am doing well on the go slow method but with each reduction it takes about a week sometimes more teakettle effect. I guess some people are slower to react. Good luck with your journey. Get plenty of rest. I tried to live normally and it didn't work. Relax !!!

  • Hello Peetee and welcome. I have PMR and am presently trying to get my 2nd flare under control. My 1st responded well to 20mg Pred and was located in my hips and lower area, but I ended up on 60 mg to start this time before it responded, which led the doctor to believe that I may have the starts of GCA as well. This time the flare up is in the shoulders and neck area. Once it responded I was able to reduce fairly quickly to 20mg, by 5 mg every 2 weeks, but had to slow down to 1mg every 2 weeks until 15 mg and now 1 mg every 4 to 6 weeks. It is very difficult to adapt to having to slow down and be dependant on others, but it has to be done. Remember that if you try to do more because you feel better, then you will regret it the following day when your body rebels and says you've done too much. Do as little as possible during these early days until the pain is under control. You'll soon figure out what you can or cannot do before having consequences. You will find that this site is a wealth of info and the people on here are friendly and helpful. It isn't an easy road to travel and it takes many months to years to come out of the other side in remission, but it is doable and it makes it so much easier if your family learn about it and understand so that they can support you on your journey.

  • My husband has had PMR for about 2 months with unconfirmed diagnosis of GCA.

    Started on 15mg with fast relief from neck,shoulder,hip pain ,head pain took much longer His pain relief lasted 22hours but he didn't want to take prednisolone 2hours earlier each day as that would increase his mg dose.

    He found taking the prednisolone in 3 doses of 5mg helped him bridge the gap Dr wasn't too happy but couldn't give a logical why not.

    Now on 12 1/2 mg per day will be on this for 4 weeks and we will reduce, with Drs guidance to 12 1/4 mg and see how it goes .

    It seem unusual reading reports from this web site and the symposium review from the Royal College of Physician of Edinburgh that your pain was not relieved in anyway with that amount of steroids and may be worthwhile asking for more tests.

    This can be a very depressing illness so be gently kind to yourself , Ie gentle walks good fresh food occasionall treats.

    Some people say the occasional glass of beer or wine helps!

    Good luck.

  • Hi Peetee,

    Well - I could have written exactly the same post this time last year! Indeed when I look at your name (Peetee), they are my initials too!!

    I went through the same process of thinking I had damaged my shoulders in some way before going to the GP feeling I was falling apart. Started on 20mg, then upped to 30mg after 5 days. I stayed at 30mg for just over 3 weeks by which time the pain was more or less under control. For me the pred lasted barely over 12 to 15 hours. At the beginning I took it at about 3 to 4am, so I could get through the day reasonably ok (it took 3 to 4 hours to kick in).

    I also got Kate Gilbert's book at an early stage, and can thoroughly recommend it.

    Otherwise, I have found this forum to be excellent for building up your knowledge of this affliction. It has enabled me to manage when, and by how much, I taper down on the preds. I got from 30mg to 15mg ( the usual starting dose) in about 6 months, but it has taken me a further 6 months to get down to 8.5mg, which is where I am now, with a few ups and downs at the 10/9mg level.

    As to advice now, you really will need to take matters gently, and be very patient. If you try to do too much, you will be amazed by how tired you feel. I still take a rest every day after lunch for as long as two hours! That is a side effect of the pred, plus of the pmr.

    That's a long post by my standards. I am NOT medical, but I have just covered how it has been for me, following an identical start as you.

    Good luck, and do keep posting as you come up with any queries on this illness, which I had never heard of before I saw my GP this time last year.

  • Thanks for all your info, here you are a year on, it gives me hope, I will keep you posted

  • Hi peetee,

    My pains started the same as yours, although because of a mis diagnosis went on for much longer before I was finally diagnosed correctly. As you only have upper body pains ( no leg or hip pains) I would question why the doctor diagnosed PMR - from my experience I would think it more likely to be GCA. If so, then the Pred dose will not be enough - which is maybe why you are still in pain by the afternoon. It also means the inflammation is not fully under control, which is not good if it is GCA. If you can, I might be a good idea to speak to your surgery just to ask if you can speak to doctor, asking him/her if it could be GCA rather than PMR.

    Hope you soon feel better.

  • First of all - there are no blood tests that CONFIRM whether it is PMR or something else. The blood tests are for ESR and CRP which are inflammatory markers and in about 80% of patients they are raised in PMR. However - they are non-specific so that means they can be raised due to other things, including other forms of inflammatory arthritis, and you can have PMR and GCA without them being raised, the other 20%.

    One of the diagnostic criteria for PMR is there should be a speedy and fairly dramatic response to a MODERATE dose of pred. This paper, which Ipsy mentioned,

    says that anyone who doesn't have a noticeable improvement with 20mg (so they are what they call atypical) should be referred to a rheumatologist. There are other things that are very very similar in presentation to PMR but which don't respond the same way to this moderate dose of pred. Lots of things will, however, respond to higher doses. Some will respond well to high doses - but are different in cause and course and may require other things. Others will respond to higher doses of pred but would respond far better to something else. There is a graph showing what I mean on page 3 or 4, it is fairly easy to read quite a lot of it. It is aimed at your GP - they may be interested enough to read it if they haven't already seen it.

    You may have shoulder bursitis or myofascial pain syndrome as well as PMR - and they both respond far better to local steroid injections which target the site of the problem far better with a faster result and fewer side effects than is the case with a higher dose of oral pred.

    And of course - if you took your pred and carried on with normal activities the pain probably wouldn't respond as well as it might. Management of PMR has 2 faces: one is the pred to relieve the inflammation that is topped up every morning by inflammatory substances being shed about 4.30am and which is the cause of the pain and stiffness. The other is pacing and resting appropriately - your muscles are still intolerant of acute exercise because of the underlying autoimmune disorder that is the cause of the pain and stiffness.

    The sooner you take your pred in the morning after 4.30am the less work it has to do - and it takes the best part of 2 hours to get from your mouth to your muscles and have an effect. I had a similar problem to you when I was taking Medrol - I took it about 7am when I woke but it didn't do anything until mid-afternoon. The only way it worked at all was taking it at night and I needed 20mg - whether I didn't absorb it properly or something like that I don't know. Prednisolone and prednisone have both been fine and I managed on a far lower dose on either side of the Medol (methyl prednisolone), I went from 20mg medrol doing not much to 15mg prednisone overnight and got the miracle response many people describe.

    With regard to the pacing and resting - read this

    It is an allegory about husbanding resources when you have to live with a chronic illness - as we all do.

    PS - you don't happen to know what other tests your doctor did do you? Did he do vit D and creatine kinase as well?

  • Hi PMRpro

    You give some excellent advice and I always look forward to reading what you have to say.

    Could you tell me ... If you have Pred at 4.30, do you set your alarm and what do you eat just prior to taking the dose ?

    How many mg are you on and do you just take a percentage at 4.30 ?

    Thank you PMRpro and have a good Chrtistmas x

  • A study showed that the best time to take plain white pred tablets to minimise morning stiffness was 2am! That means the blood level is at its maximum when the cytokines are shed in the body. I do know a few people who do/did set an alarm or they are awake about then for a bathroom visit. Others wake early in the morning for the same reason and take it before settling down for another couple of hours in bed before getting up for the day by which time the pred is working. They take a sandwich or a yoghurt and a drink to bed with them to save getting up.

    I cheat - I don't live in the UK and here in Italy my GP prescribes Lodotra for me - mainly because I had a lot of severe side-effects with the standard corticosteroid here, methyl prednisolone, and it is the only other option. Lodotra (Rayos in the US) was developed on the basis of that study to use in RA to avoid morning stiffness - it has a special coating which takes 4 hours to break down all at once and you take it at 10pm before bed. No alarm needed! The studies claim that it is so efficient that you can get away with a lower dose and the side effects should be less - no idea if that is why but I do very well on 5mg taken all at once and have no morning stiffness or side effects I'm aware of. However - I do know that the antiinflammatory effect for me lasts a good 36 hours which is probably the maximum. I used to take double the dose on alternate days, a recognised way of taking pred to minimise side effects, and it worked well for me. It isn't usually advised for PMR though as it doesn't seem to work well. Absolutely not to be used in GCA by the way.

  • Thank you so much for the info, I will read via the link. I am due to see my GP again next Wednesday, so will be armed with more questions.

  • Hi Peetee

    I had similar symptoms at the start of October, plus pains in my lower back, hips and pelvis and ...

    Couldn't lift my arms any higher than my shoulders to wash hair etc ...

    The first GP I saw didn't recognise PMR but thankfully GP with a second opinion DID !!!

    However, due to the first GP I was a whole month on no meds at all.

    Agony and despair for several weeks ...

    After second opinion and diagnosis, then prescribed and taking 15mg Pred, within a day or two I noticed an amazing difference. Have now been on 15mg since Nov 3rd.

    After Christmas I have been asked to reduce to 12.5mg daily and am wondering if this will be too great a drop. On this website I have read it should be a smaller drop !

    I too took my Pred early morning as advised and like you was hours before I felt any difference so ... I then started taking my Pred before retiring to bed (after a very small bowl of porridge) around 10.30.

    I now wake each morning feeling good !!! Pred has worked whilst sleeping.

    I hope my words have been of help, and wish you a happy Christmas Peetee X

  • Try it at 2.5mg - lots of people are OK - but if you have problems why not ask the GP to let you try doing it 1mg at a time. 1mg every 2 weeks is the same as 2mg per month - and usually is less of a problem getting used to the new dose.

  • Hello again PMRpro

    If your reply "Try at 2.5mg - " was for me ...

    I guess you meant 12.5mg ?

    What you say sounds good and I am due to see GP 1 week after reducing from 15mg to 12.5mg so will give her feedback on results.

    I now have repeat prescriptions for both 5mg and 2.5mg, but feel I need to request repeat for 1mg too, to enable me to take smaller steps and/or alternate etc.

    I have been so well informed on here ... Thank you so much.

  • Well yes - but it was try a drop of 2.5mg and if it didn't work ask to try doing it 1mg at a time.

    Out of interest - are the 2.5mg tablets also plain white uncoated tablets rather than the enteric coated red 5mg/brown 2.5mg pills? I always wonder when people speak about 2.5mg tablets - I've never come across them.

  • Hi again and thanks ...

    Haven't popped them out yet until after Christmas but I will let you know ASAP ;-)

    Have fun over the festive weekend X

  • Thank you all for your responses, it really helps to get the voice of experience, where better?

  • I was diagnosed in Sept. 2014 & started on 20 mg, which helped a little, but not totally. I got in to see a rheumatologist within a week (VERY lucky on that count). He didn't think I was feeling enough better, so he upped my dosage to 30Mg & gave me a steroid injection. I immediately felt a lot better, but when the injection wore off, I slid downhill again. He upped my dosage to 40 mg and that did it. I stayed on that 3 wks & tapered to 30mg, stayed there a month, then 20mg for a month, then 17.5 mg, then 15. It wasn't until I got down to trying to taper from 8 to 7 that I had some problems with the PMR trying to flare. So, there are those of us who don't respond to the typical pred dose. Don't give up! The worst part of having to go on a higher pred dose, was all the prednisone side effects. They can be very unpleasant too, but at least they get better as you go to a lower dose. Good luck and hang in there!

  • Thank you Sue, I am learning so much on this forum, I don't know how I would have coped, not having heard of this illness before, I don't feel on my own.

  • I had never heard of PMR before I got it either, and I spent 8 months with all these weird things happening to my body & since they moved around it was tough to get diagnosed. I too, was so thankful to find this forum, so I didn't feel alone. Just finding out that the strange things that are happening to your body don't sound strange at all to the people here, is very comforting. Keep reading as many posts as you can here, because you'll learn so much, and just having people to talk to who understand helps immensely in dealing with your own struggles.

  • Poor you. It isn't much fun, is it? When I started, 40mg was my original dose.

    It worked like magic. I was quickly reduced to 35mg and so on in bands of 5mg every few months, over a 2.5 year period. I've never had any further pain and am now, 2.5 years later, stuck on 5mg per day and waiting for the rheumy to bring it down to 4mg - perhaps.

    Pred can have nasty side effects so be prepared for them. Everyone is different and you may not get them, but don't be surprised if strange new things happen to you and cause problems. Just be alert to whatever happens and report to your doctor if you're worried, uncomfortable or anything else.

    Keep reading this site. It's very informative. And join your local PMR group if you have one near you. A good way of discovering all sorts of things.

    Merry Christmas


  • Thanks for the response, this website has really opened my eyes. From knowing nothing about the existence of this illness, within a few weeks I have such good information about it, and still lots to learn. I will definitely look to see if there USA local group. Merry Christmas

  • I too started a year ago on 30mg, partly by accident - I misheard the Doctor and thought she said 10mg 3 times a day!! Anyway it was as if someone had thrown a switch and I was back to normal - it was as if someone had thrown a switch. I then had to wean myself of the dosage and am still struggling to get down. I have been told that Pred take 5 hours to be absorbed into the system which would account for you taking at 8-9 but not feeling the benefits until 3pm. Hope 2016 is a better year for all of us!!

  • So true!

  • Hello Peetee

    If it helps: my experience of (initially un-diagnosed) PMR 12 months ago was very similar to yours: several weeks of all-over, excruciating pain and stiffness which I just put down to having over-done it physically (and combined with / after a bout of bacterial Pneumonia which, fortunately, I recovered from fully).

    When my GP eventually 'joined-up the dots', he put me on a 'tapering' 30mgpd Prednisolone and I had a miraculous 'recovery' from the symptoms within a few hours of the first dose.  His interpretation of tapering, however, was very different to what I later discovered is best practice.  Mmmm...

    As for the effects of the preds: like you, I take them in the morning but they don't seem to take effect until later in the day.  So, mornings are slow and stiff :-(.   But, as PMRpro (an authority on the topic) says, individuals' differing absorption rates depend on many things.  I recommend that you dip into her threads / the other authoritative research about this, to learn more.

    Yes, this really is a life changing illness, but which is insidious by nature.  Although it seems to hit you like a train 'out of the blue': there is a body of anecdotal evidence that there are many causal factors that contribute to it retrospectively.  One of them is long-term Stress, and its cumulative impact on the body's auto-immune system.  Food for thought, and reflection?    

    Kate Gilbert's book is really useful in examining the bigger picture of PMR/GCA, and how to survive it. You'll find it re-assuring if nothing else. 

    Best wishes and keep your chin-up on the Journey :-)

    Mark B

  • Thanks Mark, I am convinced that my GP is trying to get me to reduce the press too quickly.  I was reducing by 1mg per month for the first three months then the GP suggested 3mgs per month for the past two months, and I have not felt well for the last month, so I am going to go back to a much slower reduction, and will let my GP know what I am planning.  Thank you for the info and your kind words 

  • Yes, Peetee  It seems  that some GP's / family doctors have only a vague understanding of both PMR and the appropriate (and safest, given possible complications) treatment options for it. 

    From my experience with PMR, it seems like bit of a lottery in terms of whose advice you can trust, and why.  No wonder many who are relatively new to this health condition are so confused about who to listen to!

    But, at least, this forum provides a resource of peer-experiences, professional expertise and emotional support when the going is / gets tough.  Here, we have an invaluable source of expertise and experience in equal measure. 

    My only thoughts are that, for many (especially newly diagnosed) PMR sufferers, the seeming 'needle in a haystack' process of how to navigate the forum, knowing who best to take advice from, and where the authoritative sources of advice lay, can be a frustrating process which requires some considerable research time and effort.  This was my experience initially.  I'm getting the hang of it: but only after 12 months of trawling through hundreds of posts, and a myriad of responses to them. 

    The great irony in this is that, when 'one-wing down' physiologically and emotionally with PMR, and despite the apparent availability of such information, we don't always have the mental energy and focus to access the information that will help us when we want and need it most.  Mmmm... this take me back 12 months to when I joined the forum.

    This is no criticism of this great forum and / or the many dedicated contributors to it: maybe just an observation about the effectiveness of, and accessibility to the information-sharing process: especially for those who are new to PMR / GCA and are understandably scared about, and confused about to ?!

    These are only my thoughts: and, as always, I'm open to constructive and respectful responses of any kind.  

    MB :-)

  • My GP told me some time ago that pred's take 5 hours to become effective. I enquired of other sufferers at this time and with the advice I received now take my first "dose" of the day when I wake in the night ~4.00 or 5.00. This seems to work well. I then have the 2nd dose with my breakfast and if necessary a third with lunch then nothing. It seems to work for me.

  • My GP told me that Prednisolone take ~5 hours to become effective which is why I now take my tablets to bed with me and normally take them when I wake in the night for other reasons around 2-3 am.

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