When to blame PMR ?

Posted , 12 users are following.

I have difficulty in recognising new aches and pains as  PMR related or having some other cause. I have developed over the past few weeks an exceptionally sore back. It started low down my back, almost in my waist, and now has moved to my upper right area. It doesn't respond to Paracetamol but after my morning 6mg Pred dose it does fade to dull. Then it returns with a vengeance in late afternoon and is there until sometime after my Pred and I have moved into the day.

My back rarely gives trouble (although it was one of my symptoms in the months before diagnosis in 2014) and I don't know how to label the pain as one typical to all 70-year-olds, or a PMR symptom that could lead into a full blown flare.

I've been on a roller coaster ride with Pred over the past three-plus years and am thrilled to have reached my current dose. The thought of increasing it and dealing with the resultant increase in the hideous side effects (extreme sweats, hair loss, memory fog, fatigue...) is more than depressing. 

Is that what I have to do or can I doggedly continue with my 6mg and hope that this pain will go away? Or could that lead to a flare? Does PMR get the blame when actually there is another reason for many otherwise unexplained pains?

I don't have access to a rheumatologist, or indeed to anyone with professional medical knowledge of PMR, so I have bumbled along on this journey largely on my own and with the input of this forum. I look forward to members' advice.

0 likes, 22 replies

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  • Posted

    Wow Heather, this could be me talking. I'm down to 5.5mg & also experiencing different pain but in the  front of my upper legs. I have no rheumatologist & my Drs pretty vague so like you bumble along on my own. I'm determined not to up my Preds again. I take Solpadeine at night so at least get a good night's sleep. Have you been doing anything different? I'm wondering if my pain is that I've stopped walking with a stick after nearly a year, so using different muscles. Hang in there, hopefully someone will have an answer.

    • Posted

      So good not be alone on this horrible ride, Marian. Your words are comforting that I am not alone and...we shall persevere!
  • Posted

    I recognise what you mean and I sometimes have difficulty knowing what is aches and pains from what I have done and what is withdrawal. I have just reduced to 2mgs today but at 2.5 I was uncertain if I was having a flare, withdrawal or just general aches and pains. It's a fine line trying to decide. I stuck it out with the 2.5 reduction and eventually realised it wasn't a flare but probably as a result of overdoing it as my reduction coincided with a busy time. Are you perhaps doing too much or even something repetitive which can cause pain? It's difficult to know but perhaps you may be able to work out what is causing the pain. At this time of year we may be doing more gardening or looking after grandchildren. I am trying to pace myself again as I have had a busy spell and the fatigue sometimes catches up. I hope you manage to work out what is causing the pain and find that it may in fact be something other than a flare. I am almost 70 but still expect to feel like I did at 17!! 

     

    • Posted

      Well done Silver on reaching the magic figure of 2mgs. Hopefully can sort out this backache with the therapy Eileen has suggested.
    • Posted

      Thank you, Heather. I hope your backache can be relieved very soon. It's so debilitating as it affects everything we do.

  • Posted

    I was so delighted to read yours and Marion's posts this morning, although I am absolutely not delighted that you are both experiencing these horrendous issues with PMR. It took over a year (the whole of 2016) of sheer agony before I was diagnosed with PMR in Jan 2017 and now I am, for about the third time this year, trying to reduce the Pred from 30 mg per day. I am now down to 22.5mg again,  which I shall reduce to 20mg in a couple of days, for four weeks before having more blood tests to ensure my bloods are still at the right count, the 'auto-immune markers' were originally at 42 as opposed to the normal healthy 5. To control the agonising pain, which is now mainly in my lower back, I take up to 8 Tramadol each day and having recently spoken to my a Brother in Law, who is a retired UK Pharmacist, I am now adding (when necessary) up to 8 Paracetamol every two hours. The side affects of the Pred are absolutely horrendous as you describe. It is very worrying and troubling to read that you have already been struggling with the PMR for over three years! I had read that it could take years to be 'well' again and I do know two older ladies who have each made an apparent complete recovery after 4+ years. I am (that should read Was) a fit and active 71 year old, who now feels as though I've lost my independence and can't raise the energy to do anything other than sit in a chair on many days of the week. It's so good to find this group and know I am not alone, that is thanks to my GP who introduced me to the www.patient.co.uk site on which I access this group. 

     

    • Posted

      If you are still having problems at those higher doses and tramadol and paracetamol help, then I doubt that what you have is PMR, or at least, not "just" PMR. Have you been referred to a rheumatologist?

    • Posted

      Maggie I am appalled to read how much pain medication you are taking in addition to the Pred. Surely you shouldn't be in this amount of pain? Nor taking all those pills? Within hours of starting on my initial 30mgs a day dose in June 2014, I was completely pain free. My personal pain has always been headaches for all my adult life, so I don't count them for not being beaten by the Pred.

      I have been up and down like a didgeridoo (?) with my Pred dose, going up to 60mgs just last December when I was diagnosed with GCA (but I wonder about that diagnosis). I dream of 5mgs (or less 😝wink and feel I am on the Holy Grail towards it - as long as a wretched flare doesn't appear.

    • Posted

      Hi Eileen

      Thanks for your reply, I now realise I should have given some more information and not just about the PMR - this was my first post. I have had Osteo Arthritis for about 3 years, mainly in my hand and knees, I have specific medication for this and I have recently 'developed' Sciatica, which is giving me chronic lower back pain that also travels down the front of my left leg, it is at its worst after getting up first thing in the morning. As an aside, the Steroids have given me Cataracts in both eye so I have recently been feeling quite sorry for myself! My New GP told me on my last visit that we need to focus on the results of the blood tests rather than the pain in respect of the PMR, which to be honest I hadn't realised, as the pain is unbearable at times. My new GP does seem to know a lot about PMR and has put me on a plan to reduce the Pred on a slow, slow reduction basis by 2.5mg each time. I really appreciate your comments and this group as there are no support groups in my area and I've been battling along on my own. 

    • Posted

      Hi Heather, thanks very much for your reply. I have explained in more detail to Eileen H (above), some of the other issues I have that contribute to my present condio, I now realise I should have included them in my original post. When I was first diagnosed with PMR after blood tests confirmed the condition the Pred gave me instant relief and I felt 'like myself' again but unfortunately it was quite short lived and bit by bit the various girdle-pains reemerge, hence the Pred rollercoaster started. It must have been dreadful when you were on 60 msg, the side affects must have been terrible. When my eyesight started to bother me a couple of months ago I was concerned that I might be going down the GCA route, so it was to some extent a relief to find out it was 'only' Steroid related Cataracts! Thanks again for your comments. 

    • Posted

      In your case maybe - but for most people the symptoms are king. The pain that goes at the starting dose is the stuff you should generally be able to blame on PMR and look for a similar result as you reduce.

      However - do try to persuade your doctor to let you do 1mg reductions once you are down to about 15mg/day. No reduction step in the taper should be more than 10% to minimise your reactions - it isn't just spreading the step down over time but also the size of the steps that matters.

    • Posted

      Hi Eileen, you are absolutely right, when you are the person that this is happening to, the symptoms are king, despite what the text books might say. I will try to persuade my GP to let me reduce the dosage by 1mg each time once I get down to 15mg per day. What you say makes perfect sense to me, originally I was reducing by 5mg each time, which simply did not work. I really appreciate your comments, it is comforting to know that, unfortunately, there are a lot of us out there with similar experiences - I was beginning to think that I was losing the plot!
    • Posted

      If you struggle earlier then ask to do smaller drops sooner. 1mg every 2 weeks is easier - and still 2mg a month.
  • Posted

    What you describe is typical of myofascial pain syndrome - it leads to the formation of pairs of trigger points on either side of the spine, in the shoulders, about waist level and in the lower back about where the baby's dimples are. They are concentrations of the same inflammatory substances that cause PMR when systemic (all through the body) but they are also to be found in the fascia - the transparent skin covering muscles you see in joints of meat or poultry, and then the fascia is inflamed and painful to touch. They can lead to muscle spasm. It is commonly found alongside PMR.

    That is why it responds some to pred, especially at higher doses and then returns later as you reduce the dose. It is better dealt with directly - manual mobilisation by physiotherapists/massage therapy is one option. You often feel as if you having a flare after as the inflammatory substances are released but once they wash out of the body you improve. I found Bowen therapy helped and I have also had steroid or lignocaine injections which are also helpful. Once they are sorted Pilates or specific physio exercises often improve the tone of the back muscles and reduce the risk of it happening again.

    And yes - PMR often gets the blame when it isn't directly the cause. But MPS is just a slightly different arrangement of the same sort of problems!

    • Posted

      Eileen you are so knowledgeable who needs a rheumatologist ?! You have given me a direction to pursue in terms of massage or manipulation. You may recall I live in Zimbabwe where following your advice a few years ago I found someone calling herself a Bowen therapist, but the therapy was nothing like you described.  I don't think there is another, but I will try regular back massage and see if that helps. The pain is already back (five hours after my Pred but bearable) in tandem with a headache so have taken Paracetamol. But reading what poor Maggie is taking I feel like a charlatan in the pain stakes.

      Thanks so much for taking the time to answer me when we "Forummers" literally queue for your advice.

    • Posted

      If you have a good masseur they may know how to do manual mobilisation of the trigger points. It will probably HURT - at the time at least. But done well it is worth it!

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