PMR? A diagnostic test / solution

Trevor55
Trevor55 Member Posts: 5
edited 2. Apr 2015, 04:28 in Living with Arthritis archive
OK here goes.......Having read many posts I am quite tearful as I realise the extent of pain and frustration out there. I only hope that this post doesn't come across as smug - please read on.

Being too impatient to wait months to see that rheumatologist my GP has referred me to. I decide to self diagnose - risky you might say? I just wasn't ready for the over 90's club just yet! So many illnesses that fit my symptoms. Having narrowed it down, I ask my GP to prescribe Prednisolone. Less than 24 hrs after taking the drug I wake up and discover that I can actually get myself out of bed, OK it wasn't elegant but I didn't care my joints were freeing up. Still very painful yet somehow an epiphany!

I urge others with similar symptoms to use Prednisolone as a diagnostic test, the risks of side effects really aren't that great but the potential rewards are truly wonderful!

More to follow if this is useful to anyone.

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Welcome to Arthritis Care Forums Trevor from the moderation team

    As moderators we are here to help with any problems you may have on the message boards.

    There are lots of lovely people here with a wide range of experiences with arthritis and the problems of living with the condition. Just join in wherever you like you will be made very welcome.

    To be on the safe-side we advise against giving medical advice on the forums, but noted your 'experiment' was done under your GPs supervision.

    I look forward to seeing you posting.

    Best wishes

    Moderator AC
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    Trevor, I'd like to welcome you to the forum but I'm really struggling to believe you're for real.

    You do a DIY diagnosis of PMR - always a tough thing for qualified consultants to diagnose.

    On the basis of this you ask your GP for steroids and he's happy to oblige.

    The pred works so you decide to spread the good news so that we can all take it.

    Well, many of us have done. Pred is an apparently miracle drug for many types of arthritis and for many other diseases too. So what, exactly, has it diagnosed? Unfortunately it also damages bits of us when taken long term.

    Please, please do not assume you have a diagnosis of anything. Keep that rheumatology appointment and take the steroids only as directed by your GP. (Has he done any tests?)
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Prednisalone is indeed a wonderful drug - it masks every symptom without addressing the underlying cause and can lead to more long-term health troubles because it thins every tissue in the body, not just the 'naughty' ones.

    So, you're not ready for the 'over 90s' club just yet? :? The first thought that springs to mind is 'tactless' and the second thought is this: none of us are (especially the very young children but you probably haven't braved that part of the forum, few do) but we have arthritis, in all its various guises, end of. None of us enjoy our circumstances but many of us make the best we can of it, with the informed help of our consultants and doctors. I began my 'over 90s' journey aged 37, I am now 56 and an old -albeit creaky - hand at dealing with this arthritis business.

    I wonder what dose of pred you are taking, when you take it and how long it took your GP to decide that your self-determined course of action was reasonable? I loved pred (I took it between 2007 and 2011) and it does have a role to play in so many medical conditions, but it is not a long-term answer. I clearly remember the 'feeling better' within two hours of my first dose - what's not to like about that? :) It took me a year to come off it, I lost the moon-face and the majority of the weight I gained, and my bone density increased by just under 4% in the following two years. All good results to my way of thinking.

    Your post does not sound smug. Many of us on here are well-aware of pred and what it can do, and I am sure that many of us have had our 'Hallelujah!' moments like yours, but we have also had our struggles with this medication, especially when we have had to come off it. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    I hope I didn't come across as unfriendly last night but I was worried that others, browsing the forums, might decide that this is the way to go and buy pred off the net.

    I think very many of us have experienced that pred high that you seem to be on – the pain is dissolving like magic and you can do things again and, apparently, be your old self. I guess the temptation would be to forget about a formal diagnosis as you already have a solution. This would be very dangerous. In fact your proper diagnosis could be hampered by the pred masking the symptoms.

    Enjoy your brief respite of freedom but always be guided by your GP, stick strictly to the dose prescribed and also inform the pharmacist if you buy any over-the-counter meds as some can interact.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Trevor55
    Trevor55 Member Posts: 5
    edited 30. Nov -1, 00:00
    Thank you all for your replies and advice. This is all very new ground for me so all your help is very welcome.

    You are absolutely right, there is so much mis-diagnosis around even amongst consultants and specialists. My motive is simply this, taking Prednisolone as a means of finding out if it will help is almost a no brainer but not a replacement for professional advice for a complete diagnosis.

    I fully intend to keep my appointment with the Rheumatologist.
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
    Pred is indeed a wonder drug - pain & inflammation disappear like magic when taken - but it comes with a raft of other effects which can be rather nasty when taken long-term. Pred doesn't cure you - nothing cures arthritis,and, on a purely personal level, while I have had many steroid injections, I have always refused the tablets. Someone I know is having dreadful problems trying to wean himself off them - on going now for months.

    Prednisalone is a temporary measure, but not the answer.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    It took me eleven months in total to stop the pred - having read on here the struggles others were having I opted to reduce by one or point-five of a milligram every three weeks. It worked for me but it took a deal of time.

    Trevor, I do not doubt that you are in some degree of trouble but I truly feel that pred is not the answer. It 'works' for many diseases so in no way does it narrow things down to one or two specific conditions. You didn't give us any background so we have to take your post at face value, the impression being that you have self-diagnosed and have a 'co-operative' GP. GPs know a little about a lot whereas rheumatologists know a lot about a little and that matters. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • frogmorton
    frogmorton Member Posts: 29,332
    edited 30. Nov -1, 00:00
    Hello Trevor and welcome to the forums :D . My Rheumatologist did something similar to me in the early days, with a depot steroid injection to 'prove' that steroids helped and, to confirm his suspicion of an inflammatory arthritis.

    My youngest is fighting Acute Lymphoblastic Leukaemia at the moment and a large part of her treatment consists of dexamethasone (a steroid) to maximise the effects of the chemotherapy drugs. The treatment is 2 and a half years for girls and 3 and a half for boys.

    I like her steroid weeks because she eats like crazy and it's helping those leukaemia cells get zapped, but don't like them because there is a lad we know, ( also has ALL and is 20 maybe??), who is awaiting a hip replacement due, he is told, to having had so many steroids.

    I believe dexamethasone is MUCH stronger than prednisone though and if it's necessary I know Drs do keep a special eye on patients who need to steroids over long periods of time.

    Good luck with your rheumatology appointment. Do let us know how you get on.

    Love

    Toni xx
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    I'm so glad you'll be keeping the rheumatology appointment :D

    Unfortunately, in Arthritis World, pain moves at a far greater rate than appointments. We have to learn to slow down a bit in many ways and it's not easy.

    I'm pleased you're 'for real' :wink: but sorry you had to find us.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    How are you getting on, Trevor? Well, I hope.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I echo that enquiry. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Trevor55
    Trevor55 Member Posts: 5
    edited 30. Nov -1, 00:00
    Absent without excuse so apologies for not responding sooner.

    Prepared for my Rheumy assessment like it was an exam, well you only get half an hour and I wasn't about to waste time given the waiting time to get the appointment. Young, smart and knowledgeable (no not me) so confidence in my consultant growing by the minute. PMR all the way until I said that I had stiff joints in my hands. I have since researched this and there are so many examples of PMR'ers out there with same/similar symptoms......so could he be wrong?

    Now on a Pred titration - start point 20 mg/day now on 15 and will be on 10 mg/day 4 weeks from now. Currently mobility & strength improving on a daily basis, no pain to speak of other than the odd twinge but still have slightly stiff hands which are taking longer to restore. However, played guitar for the first time and I cried with joy!

    Is this the miracle of pred disguising it all? Is there something more sinister lurking below the surface? If so what could it be - I would welcome your comments.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's nice to hear from you again - the pred reduction plan sounds like a good one and I hope you can reduce without too much physical cost to yourself. We are practising arthritics on here, not practising rheumatologists so cannot speculate about what might or might not be going on with you. We are given the 'umbrella' labels of RA etc. but everyone is affected differently by their version of the disease - there are so many possibilities I suspect that only time will tell.

    When are you due to see him again? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Trevor55
    Trevor55 Member Posts: 5
    edited 30. Nov -1, 00:00
    Thank you for your well considered reply. I am sure that you are right but what are the likely possible alternatives that I may have? I see my Rheumy in 7 weeks after seeing the nurse for more bloods in 3 wks.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Honestly mate? Who knows? There are 304 forms of auto-immune arthritis so take your pick! Steroids help so many conditions, not just arthritis; I know you want an answer but sometimes they are slow in coming: it took five years for me to gain the label 'unspecified auto-immune inflammatory arthritis' then four years after came the great shift to psoriatic arthritis. The change of label meant nothing because the medications stayed the same.

    These are complex and contradictory conditions - one man's RA may be very different to another's in how they are affected, its rate of degeneration, progression and severity. In all my years on here I can only remember one person who had his RA controlled by the smallest amount of methotrexate per week. The rest of us autos on here are the die-hard-not-responding-too-well to the meds people. :wink: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • LemonMerigue
    LemonMerigue Member Posts: 62
    edited 30. Nov -1, 00:00
    I must be the only person I know of that had no success with pred. It made me extremely depressed (suicidal thoughts, crying over spilt milk - literally), I gained 2 stone and to add insult to injury, it didn't help my joints in any way. I was only on the pred for a couple of months and I had to fight my Dr's to take me off it. They seemed baffled it didn't work and implored me to continue taking it but it did nothing so I decided to just stop taking it.

    I think you need to keep on at your doctors instead of trying to self diagnose. Like DD has pointed out, theres 304 variations of this terrible condition. You will drive yourself crazy trying to conclude anything yourself. By all means do research and learn more about it but leave the diagnosing to the hcps.