Polymialgia relief

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After taking pred 15 mg for 4 weeks had at last had 3 days of relief from shoulder pain . Went back to doc and blood was a little better so on a reduction program which will start in 2 weeks .Saw physio who taught me some gentle excersise on my back have today been in extreme pain again . Am getting ready for visitors and possibly overdone it but has anyone out there had such slow improvement and then sudden set back .Felt so good those 3 days am sitting in bed 4am with Ice pack on shoulder and have taken a diazipam to try and relax shoulder .Comforting words from someone please 

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14 Replies

  • Posted

    Hi carol, this PMR business is a tricky old condition. It affects suffers differently and also the recovery rate and response  to the drugs effects sufferers differently. When I was diagnosed I was so smug because I responded to the prednisone so well. However, there is no doubt that if I over did things (I run a holiday cottage business and on changeover day if I've worked really hard the pain was unbearable) then I could be in trouble -pain wise for up to a week afterwards. The stiffness never returned but the pain most certainly did. Also I find that if I get a cold or a cold sore then the pain also increases just for a few days and then it goes back to normal. I've now reached 8mg and think I will have to up the dosage again to 9 mg as the pain and stiffness has returned to my neck, shoulder and hips, not badly at all but just enough to know that it's there. Good luck, tina
  • Posted

    Definately sounds to me like you've over done it. It is so hard to remember that the preds will only keep your pain levels bearable if you meet them halfway, rest a lot and pace activities. My pain physio is trying to educate me to take a break BEFORE I start to hurt, as otherwise I am in trouble for the rest of the day! Too much arm movement/lifting and I can't even hold a book to read. Too much bending and my hip is so painful, going up to the loo is difficult. You would think, taking all this into account, pacing myself would be easy but no. I still find myself on relatively painfree days, trying to catch up on stuff thats built up while I've been out of action! I too had a slow reaction at the start of pred and have had many setbacks. It's a steep learning curve when you've always been very active. This forum is a lifeline. Good luck and take care of yourself, Debbie
  • Posted

    Carol, do be very careful with physio at least in these very early stages of the disease.  The manual techniques of physiotherapy are contraindicated in PMR.  Only gentle massage, heat treatment and ultrasound are advised.

    I sought the advice of a physio when I first found difficulty in walking, assuming it was due to a long-standing back problem.  I ended up in a far worse state, bedbound and travelling to rheumy appointments by ambulance and wheelchair. 

    It might be wise for you to return to your GP - you may perhaps need a slightly higher dose.

    Some patients do need a slightly higher starting dose of 20mg to really tackle their pain 

    • Posted

      This is a great forum!  I have a physio appointment tomorrow morning because of my pelvic/girdl pain --- I will tell them ONLY GENTLE MASSAGE, HEAT TREATMENT AND ULTRA SOUND -- NO repetitive movements.  I get them enough with my daily work at home, and I have overdone it because my left shoulder is hurting....probably bursitis. It's a challenge everyday but doable with the right amount of prednisone.
    • Posted

      Erika, yes as I said in my reply to Carol, go easy with the physio.  The muscles will already be inflamed from the PMR and they will complain if they are aggravated further!  I didn't consult a physio after my initial pre-diagnosis experience until on the very low steroid doses when a shoulder and arm were giving me gip.  He found several knots in my shoulder blade area and massaged each one gently in turn followed by heat treatment and some ultrasound.  It needed a few sessions but it proved very successful.  I do hope your physio is as sympathetic tomorrow and relieves your pain......but then don't go overdoing it again will you!
    • Posted

      Mrs. O you are kind to explain, relate and give advise.  I am still so new to PMR and need to learn  to pace myself and not overdo it.  Thank you! Erika
    • Posted

      Erika, it's a hard learning curve in the early days (I know from experience!), especially if you've been used to being very active, but you will find it becomes easier to recognise when to stop before you reach your limits, and certainly never overdo things on a good day because the pain will come back to bite on the next.  I hope you soon have more good days than bad.
    • Posted

      Thank you for you kind encouragement.  I find it such a struggle when I have a difficult time getting out of bed..... it is demoralizing, but this is something I have to learn to deal with.  I am thankful for this forum who have the same or similar experiences, and I can express myself. I need to be patient and understand that I don't have the same strength like I still had last year.  The muscles are inflamed and they have a limit of endurance.  Thank you, Mrs. O, for making me understand this more clearly.  Erika

       

  • Posted

    Did you have a big improvement in MOST of the symptoms within a week of starting the pred? Like at least 50%? 

    If you didn't then your doctor needs to do some more thinking - because without that rapid improvement there has to be some doubt about the PMR diagnosis. There are other arthritises that LOOK like PMR but aren't and which require different treatments. 

    "Went back to doc and blood was a little better" - if the bloods are only "a little better" then there is still inflammation present and it is not yet time to start a reduction. 

    As MrsO has said - be wary of physio. I was sent for physio a couple of years ago in an attempt to get me moving after another problem. Even a couple of reps of the very gentle exercises she tried were too much and the pain got worse rather than better. And I have had PMR for 10 years - I usually know what I can manage and what I can't. It really does sound as if physio is NOT the way to go for you at present. If you have severe shoulder pain, especially if it is one-sided, then it is more like to be bursitis causing it and physio will only make that worse. Cortisone shots would be better.

    The others have all pointed out the fact that PMR comes back to bite if you mistreat it. The pred is managing the symptoms, it is up to you to not increase those symptoms to a degree the pred can't mop up. Your muscles remain intolerant of exercise for a very long time: can do far less to start with, do not tell you you are asking them to do too much at the time and then take a far longer recovery period to be ready to do more. 

     

  • Posted

    Hi Carol,

    This PMR has a habit of lulling you into a false sense of security.You feel so much better so quickly and it's a relief to feel you now know what wrong with you and it's all systems go from now on, back to normal.

    Unfortunately that's rarely the case.

    I started on 20mgs in December 2013 and am only now down to 10 mgs and sometimes that doesn't feel enough.I have had to learn to respond to how I feel every hour of the day and stop what I'm doing and rest.

    Fortunately I'm now retired and can do that most of the time and I feel sorry for those of you who can't do that due to work or family commitments etc.

    I also saw a physiotherapist when my then GP reduced my dosage drastically and my previous shoulder pain from osteoartritis returned with a vengeance.

    He just advised me on some exercises to do at my own pace and that worked for me.

    I now have a GP who likes people with PMR to use their own initiative where their dosage is concerned.

    I'm sorry if this all sounds a bit negative and I feel like I'm bursting your bubble but I'm sure if you follow the excellent advise of Mrs O and Eileen H who are both a fount of useful information you will get to grips with this confusing condition and feel much better soon.Best of Luck. 

    • Posted

      Hopefully my reduction on the steroids will take 2 to 3 years .She wants to get me down to 8 mg as. Soon as bloods and reduction in pain allows
  • Posted

    Am at long last getting some benefit from preds 15mg recent blood test are a little better so going to 14mg in two weeks .Am realising any excess in lifting , artwork sewing etc certainly brings back symptoms .Am starting Accupuncture next week to help with relaxation as know tension in body is not good .Had good results from having acupuncture for neuralgia .Still get it if in cold wind or tense but having had neuralgia for40 years it has helped enormously .So have faith that this is part of the way forward for me with the PMR relief .Doctor hopes to drop me 1mg per 6  weeks until I am maintained at 8 mg .Thanks for all the support it's a great help
    • Posted

      He can't decide he is going to "maintain you at 8mg" - everyone is different both in the way their PMR is and also their response to pred. You have been relatively slow to respond although if you tried to carry on as usual with lifting and so on that could account for that but it may also mean there is a lot going on and you might need a bit more for a while longer. At least he reduces slowly though, that is good.

      But stand your ground - if the pain comes back and he still wants to reduce the dose make sure he realises how you are. Hope the accupuncture helps.

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