New to this site

Hi everyone, I'm new here but have been reading some posts since I was diagnosed with PMR September 2016. My GP diagnosed PMR through symptoms and blood tests. I started on 15mg Predisolone and reduced yesterday from 9mg to 8mg. I had the initial blood test in September and one in December and will have another next week but I have never been referred to any specialists and I am wondering if I ought to be referred to a rheumatologist as many people mention "theirs" on this site???

Thank you for your advice and comments, it's good to hear personal views and what is "normal" for PMR. Good luck to everyone and hope someone somewhere finds us a cure!

34 Replies

  • If you have a good GP, the diagnosis wasn't suspect, you responded well to pred and are able to reduce without too many problems that is fine. There are some rheumies who believe everyone should see a specialist at least once - but since you often wait months for an appointment and then they are as much use as a chocolate fireguard that is a rather debatable point!

  • Hi Marlenec

    I was a reader for a long time & only posted occasionally but l do contribute more these days.

    Many people if they have a clear, straightforward diagnosis, respond well to Prednisolone & have a good GP don't need a referral to a Rheumatologist but some of us who don't respond well or run into issues that need additional input from an expert, hands up that's me & I've had three Rheumatologist's! The First One went on Maternity Leave & the chap covering her was about to Retire, so it wasn't me!

    If you have any questions you're in the right place, l hope you do well on your latest reduction.

    Best Wishes

    Mrs N

  • For PMR it can be managed at primary care level unless something atypical occurs. I saw a rheumatologist at the very beginning because my GP kept saying I had a virus. I was in such pain I paid privately to see someone. He diagnosed the PMR thank goodness.

  • The same for me Piglette - the rheumatologist seemed to take about 2mins to make the diagnosis and it was a massive relief to know what was wrong and come away clutching a packet of Pred (even if I did bump the car on the way home - unable to turn my head enough at the last roundabout..........) Having the Rheumy on board certainly makes it easier to argue the points on dosage/reduction with the GP!

  • I've managed fine without a rheumatologist. Dare I say it: probably a lucky escape. The one I was going to be referred to (I turned down the offer and it would have been a year long wait anyway) would have prescribed alendronic acid.

  • Interesting point Heron - by (mis) quoting my Rheumy, the GP has instantly agreed to arrange a Dexascan! Hopefully, this will avoid the need for AA.........

  • Generally speaking, I don't think there are many people who "need" AA. I'm sure there is a case for some, but most of us are able to rebuild bones ourselves if we give ourselves the materials the bones require!

  • Thank you all for your replies. My main problems now are absolute fatigue and constant painfull ache in shoulders and upper back although I have cervical spondylitis and think maybe Pmr has made this worse. I probably have 2/3 good days a week when I do bits, don't want to cry or scream at someone and feel like such a baby for being like this.

    Can someone please tell me how best to describe PMR to someone when l'm expected to do something I can't. I usually just say it's inflammation in joints and get a reply like "l get some of that". Sorry this is such a moan.

  • Marlene, you are not being a baby, my lovely - this is a horrible illness and it's tough. And you are doing really well - I started on 15 mg last September too - and having been down to 12.5 and 10 I am now back up on 15 - so to be on 9 or 8 is good! Although if, as you say, you are in constant pain maybe you are reducing too quickly? And don't worry about moaning - I would moan all day at the moment if I could! Big hugs xx

  • Thank you SusyTe

    I have now decided to take preds more slowly and alternate 8/9 daily for at least a week to see how that goes.

    It's so good to have you all to chat to, feels like lots of new friends. 😊Xx

  • Hope you have a good day today, Marlene. ❤ xx

  • Have you read PMRpro's post of 2 years ago titled 'Dead Slow and Nearly Stop Reduction Plan'? Click on her 'name' at the top of her first reply to you today, then scroll down to find it. A lot of us are managing very well on this slow tapering of the pred.

    I'm waiting for a rheumatology appointment, which will probably come through about a year after I was diagnosed - in May 2016! In the meantime, this forum has been a wonderful source of information and comfort.

    Best wishes.

  • Thank you and yes I am going to do this plan.

  • Ooooh yes, Marlene - that sounds a pretty typical response, even from family members! 'It's an auto-immune condition' often gets them listening more closely - and it isn't 'painful', it's excruciating!

  • Oh yes l shall definitely be saying that in future - many thanks. Best wishes.

  • In that case - if you have cervical spondylitis - is it certain this is PMR and not an extension of the spondylitis? They can appear similar and will both respond to pred but the spondylitis responds better to other medications.

    Don't tell people it is inflammation in joints - it isn't and they'll just think "oh, arthritis" (which they all get wrong too). It is a vasculitis, inflammation in blood vessels, that causes muscle pain as well as synovitis (that's the joint discomfort), and potentially there is a risk of blindness if it progresses (unusual but they don't need to know that).

    The NE of England charity has a DVD as well as a booklet to explain to family and friends just what PMR does to us:

    Look in their shop.

  • Hi

    Yes I believe it's Pmr as I was so stiff and in pain, needed help getting out of car,bed, dressed, a major operation to turn over in bed, although couldn't go back to sleep after 3am.

    I couldn't raise arms above head, awful pain and stiffness in groin, shoulders and arms. My GP diagnosed PMR and confirmed with blood tests. 15mg preds was amazing and still ok till 10 but now l'm on 8/9 feel depressed, flu-like ache, no energy, painful ache in shoulders and upper back.

    I had an X-ray about 35 years ago and diagnosed with cervical spondylitis and prescribed Diclofenac tablets, taken off them a few years ago and given Cocodamol and Emulgel instead.

    Thank you for your concern.

  • You cannot "confirm" PMR with any blood tests - the ESR/CRP may be high but there are a lot of things that will do that. There is no definitive test for most forms of inflammatory arthritis and the ESR/CRP are likely to be high in any of them.

    You say you have night-time pain - when does it start?

  • Before I was diagnosed I woke up with the pain between 2am and 4am, but when I wake up now it's between 3 and 5, and sometimes can sleep till 6 - that gives me 7 hours which is great. However I don't think pain wakes me, it's like an alarm clock in my head saying "come on, come on get up" and there's no way I can go back to sleep. I do realise then that my back and shoulders hurt.

  • Another lady on the forums was initially diagnosed with PMR and later it was decided it had been GCA but like you has struggled once she got below about 10mg. It is a very long story of doctors disagreeing about the diagnosis but she happened to mention being wakened by back pain at night, at similar times to those you describe. Her latest rheumatologist in Leeds (she travelled from Kent to see her) recognised that as a typical sign of ankylosing spondylitis. PMR pain tends to be later, often about 4.30-5am rather than 2-3 am. PMR and AS can present almost identically and it perhaps should be considered whether it should be ruled out for you. I know a few people who were at first told it was PMR but it turned out to be AS on closer investigation. A GP almost certainly would not be aware of the difference.

  • Oh dear this is really worrying. I live in Leeds and have tickets for the PMR roadshow in March, hopefully I'll be able to ask someone then.

    Thank you for pointing this out to me.

  • You could ask your GP for a referral to Prof Sarah Mackie - specify her name.

  • Thank you for all your advice. I have looked up Sarah Mackie - she sounds brilliant but I will have to think about asking for a referral as I do not have much courage.

  • Have you got a partner or children? Take them with you - it really does concentrate their minds when the patient is not alone.

  • Yes I have a supportive partner he will come with me. But not sure what to say to GP.

  • "After much thought I have decided I wish to be referred to a rheumatologist. This one..."

  • Thank you so much. That will be so easy to say and hopefully he will consent.

    You have spent a lot of time with me, I am very grateful. A great big thank you. I'll wait till I get My blood results after Monday's tests an let you know if I get referred. Best wishes

  • Not sure if this is the "best" way to describe it, but it is how my rheumi described it to me. She said it is like having a wildfire in your muscles. And as far as how the dosing works......she said you have to initially put out the wildfire before you can move on to tapering to keep the fire out. Made sense to me!!

  • It's the same sort of metaphor we used in the forums several years ago - you use enough to cover up the fire to put it out but if they layer gets too thin the fire may break out again.

    It sounds as if you have a good rheumy with realistic attitudes!

  • Morning Marlenec

    An excellent book written by Kate Gilbert, called PMR/GCA A Survival Guide is invaluable & you can give it to your family to read, I bought my first copy for my Kindle as my eyes were affected, then I got a copy of the book for my son's to read & occasionally I pick it up & flick through it again.

    This forum is a great source of help as is the GCA/PMR Website, l'll add the link as a PS you can then refer your friends to that.

    I wrote a post last year PMR v Cancer in which I described the difference in other people's reactions to both diagnosis's & believe me the difference is stark! And no one sent me flowers or cards when I first had PMR!

    Truly, no one understands PMR fully unless they have or they've had it!

    Very Best Wishes to You 💐

    Mrs N x

    PS ~ as promised

  • Good morning Mrs nails

    Thank you so much for your reply I will orderthe book today. I have to laugh when friends ask if l'm better now! But l've a good afternoon to look foreword to as I go to a ceramics class on Thursdays.

    Best wishes to you.

    Marlene x

  • Yes - that's another common misconception, Marlene from non-sufferers - take a short course of tablets and you're fixed!? If only.......

    We're all in for the long haul, but don't give up!

    Best Wishes

  • Hi Marlene, As Mrs Nails has already mentioned, if you have a good GP and she/he has knowledge of PMR and can act quickly then a Rheumatologist isn't really necessary. I think you have been fortunate with your GP, not many are ! After many months of extreme pain in my neck/shoulders and groin area and various tests my GP still didn't have a clue. She sent me for physio which was nice but did not help, and finally sent me to a rheumatologist. Thank goodness for that, she at once put me on 15mg of Pred and within 48 hours I thought a miracle had happened ! No pain at all and I thought that was it, but of course as we all now know, with PMR it takes a very long time to burn itself out. I have been shocked to read so many posts where they have had PMR for many years and although in most cases it is controlled, it is still there to some degree. In my case my Rheumie reduced my pred very gradually and each time I felt o.k with it. However after 2yrs and right down to 1mg and my blood markers being low she decided I could come off the pred altogether !!!! Wrong decision, I was soon in great pain again and after coming onto this site and hearing what others said about her decision, I went to see my GP (as I did not have a rhuemie appoint until late march) Back on the Pred....but only 5mg and I shall stay with this until I see my rheumy again. There isn't a 'normal' route in my opinion, everyone is different, just be guided by how you feel. Good Luck.......Mazz

  • Hello Marlene,

    We're at similar stages (in time), but I'm still on 12.5mg, having had to go back to start after a flare. I've never seen a rheumatologist, but I have a plan: if/when my GP and I disagree about how slowly I'm now going with my reductions I'll ask for a referral to one who has a good reputation with PMR, so that I'll hopefully be supported in my dead slow approach. On the subject of DEXA scans, I'd also have asked for referral at that point, if I hadn't been able to convince my GP that one was appropriate (initially she was insistent that I should take AA; ultimately my scans demonstrated that I have good bone density, so I was able to make a more informed decision - not to take it). Otherwise, I think it's fine to stick with the primary care level, unless there are unexplained complications, perhaps.

    My lovely friends regularly ask "how are you", and I thank them but tell them they're going to get awfully tired of this by the time I'm well again! It seems really difficult for people to understand that good management of the condition is tricky and it isn't just about getting the right dose to "cure" it. Another thing that I think is hard to understand is the degree of fatigue that is like your whole body is filled with lead - on the outside we can look so normal!

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