Novice at PMR

Hi I was diagnosed with PMR by my GP on 21/10/16 confirmed by ESR of 60. I was prescribed Pred 15mg. By 31/10 my ESR was near normal and I had improved somewhat. A GP trainee looked at the protocol for reduction and advised me to reduce the Pred by 2.5mg to 12.5mg in 3 weeks, 10mg then 1mg every 4 weeks. Said to return if I had any problems. I was confident I would be fine by October!! I also have chronic back pain plus bowel and bladder issues which can cloud symptoms somewhat. I returned to a GP trainee on 21/11 with increased pain in hip and pelvis. By then I was taking 8mg of Pred and didn't realize that stress (2 family funerals), Christmas! and this virus going round and exertion were doing nothing to help. My husband and I have a big family and are very involved with them. An X -Ray showed no further deterioration. Told to stay on the same dose of steroids -8mgs and continue to reduce as before. By 29/1/17 felt very rough and 5 days later managed to get an appointment with another trainee. She sought advice did a repeat ESR and raised Pred by 1mg daily to 9mg. It was then that I found your site. A revelation. I returned to GP a week later and after advice she raised the Pred to 15mg. The Senior GP did say that some GPs prefer a 20mg rise. I normally have monthly Physio and do Pilate based exercises daily. I can only do minimal stretching at the moment. After 6 days of 15mg I still feel achy and wiped out plus back pain due to immobility. I am not sleeping at all well. I have a phone appt with GP on Wednesday. Please can you good people advise as I am getting very down about all this. I know I have got to pace myself more but would be glad of your expertise. Thank you

17 Replies

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  • Hi BrenatPMR,

    Welcome, and you've probably worked out by reading posts that your reduction first time around were too quick. Unfortunately many doctors are too optimistic with their reduction plans , and don't factor in additional stress, Christmas etc.

    Hopefully your return to 15mg may sort the problem, but very often people find that after a flare they need to go higher.

    Would suggest 2nd time around you stay at starting dose for at least 4 weeks, it can take at least 2 weeks to work out whether it's working properly or not. Then provided you are symptom free, and if you can get confirmation with blood test, reduce - again at monthly intervals. You may manage 2.5mg a time between 15 (or 20) down to 12.5mg, but as you've had problems you might find that a smaller dose better.

    I know it sounds as if you're going to take forever, but smaller drops are better than going too quickly and missing the level that is just controlling the inflammation. Good advice is not more to drop more than 10% of your existing dose - at 20 that is 2mg, but at 15 it's only 1.5mg. Obviously as you get lower each time the percentage becomes bigger so makes it more difficult not easier to reduce.

    You need to do your bit as well, not too much exercise, Pilates is good, but perhaps not every day, your muscles take longer to recover than pre PMR, so every other day for a while maybe!

    Hopefully your stressful times are over for a while, but winter weather doesn't help, our bodies need to do more to keep us warm, and if the blood isn't getting around your body as well as it should then it takes more out of us.

    Your ESR should return to a more normal range (whatever that might be) when the Pred is working on the inflammation, so your symptoms are really the key, and a raised, or increasing ESR may confirm problems, but it can also be raised by other things, colds, sore throats etc, so don't take it as being the only indication.

    Hope this helps and take care.

  • Thank you DorsetLady for your sound advice. I think I will wait another week to see the GP as planned. I will then try to negotiate re the Pred dose much more slowly following repeat ESR.

  • healthunlocked.com/pmrgcauk...

    This is a slow reduction plan that really does work better than most approaches.

    However - I don't want details if you don't want to share - but have they a reason for your bowel and back issues? Is it definitely PMR? Have you seen a rheumatologist? I think you should - something in the back of mind is saying that axial spondyloarthropathy can be associated with bowel problems, And it is easily confused with PMR by non-specialists. It's just a thought and I may well be barking up the wrong tree. But you DO need a rheumy i think.

  • Thank you. I have no problem sharing as my modesty was taken away years ago with investigations needed. My bowel, back and bladder issues are long term. I have sacral iliac joint pain and low back pain and scans have shown some spondylitis. I attended pain clinic for several years and have had steroid and analgesia injections. I have also seen and have had scans via Orthopaedic Surgeons Bowel irrigation is needed due to muscle dysfunction. Self Catheterization for urethral dysfunction. I think this is due to multiple births (5) and heavy lifting when working before Health and Safety regs. I saw a rheumy 10'years ago following ? GCA. He said I had fibromyalgia for which he prescribed Amitryptyliine. This burnt itself out. I had to stop Amitryptyliine due to palpitations. I have tried to keep mobile by self funding an excellent physiotherapist /Pilates instructor as NHS doesn't have anything else to offer me only Expert Patient Programme. The pain and soreness I have is much worse than the symptoms I had with Fibromyalgia.

    I have printed off your slow reducing plan which I can hopefully negotiate when I see the GP next week.

    Thank you for your support. I really appreciate it.

  • You poor thing. It sounds like you really had to yo yo due to bad advice. I think a rule of thumb is never reduce unless you feel comfortable to do so. Doctors do not have PMR and what they read may be for the average person, but none of us are average! A side effect of pred is insomnia. I used to get to sleep in seconds, it takes hours now.

  • I am so thankful for this forum. I reduced my dose of pred too quickly and had to raise the dose more than I had expected to get relief. I'm NOT doing that again. Advice here from experienced sufferers has made me much more causious and patient. I'm now alternation 9 and 8.5 throughout the week. If I am ok I will try 8.5 next week. If not, it's 9mg for a couple of weeks, then try again. Slow, slow. Since being on steroids for PMR, I have NEVER been pain free, just manageable. Is that the general feeling of success here?

    Jan

  • Whatever degree of pain-free you manage on the starting dose is your reference. But it is also worth investigating whether there are add-ons - myofascial pain syndrome, piriformis syndrome or bursitis somewhere. They all join in happily with PMR but are better dealt with in a more targeted manner. Remove them if you can - and you may manage the rest on a lower dose of oral pred. Back before xmas I was struggling to get below 10mg for more than a few days and my GP did a needling technique on my back as I felt the myofascial pain stuff was returning. Since then I have managed to be comfortable at 8mg, with a few days at a time on 7mg before my thumbs/wrists start to ache. She wants me to have physio and massage - but I have to see a hospital doctor first and then wait. The appointment has take over 3 months - and since I'm non-urgent it'll be months for the physio too. But in the meantime - her needling made a big difference.

  • What is needling?

  • A technique a bit like acupuncture in that is uses needles. In dry needling it is the same sort of needle as acupuncture, in wet needling they use a hypodermic syringe and lignocaine ( a local anaesthetic) or even sometimes just saline (salt solution) and inject it just under the skin. It stimulates the muscles to relax - which is what you want.

  • Thanks, I did look up the ideas you suggested yesterday. One idea is a stretching exercise, using a stretchy band. This is for the bursistis pain in my hip. The other pain I have, ribs and shoulders, seems to me, to be on and off which I think is typical of PMR.

  • So sorry you are having to wait for Physio. I am fortunate in that I have had a private Physiotherapist for three years who treats me holistically. I tried NHS Physio and they are too busy to spend more than 20minutes or less with every patient. My Physio treats me approx monthly and in the time between I have a list of specific exercises targeted at various points along with a cliniband, Heatlamp, Pilates roller and hand held muscle vibrating machine. I can work on SIJ, Piriformas, etc. All this has kept me as mobile as possible until I got this PMR. It is an investment for me.

    I restarted on 15mg Pred 9 days ago. I have still got some aches and pains but in shoulders and hips but hoping it will reduce. I have now got burning pains in my hands and feet, especially at night. Any ideas please.I am going to try taking the Pred at 3 or 4am as I not sleeping till 5 or 6 am and not taking my Pred till after 9am.

    I will be glad of any ideas before I see GP again next week.

    Thank you to all have responded so far.

  • Is the dx of PMR as certain as it can be?

  • Hi - GP examination and bloods taken ESR 60mg. Commenced Pred 15mg and ESR went down to near normal 10 days later which seemed to confirm dx.

  • Fair enough. Then mention the burning hands and feet - they aren't typical of PMR, not sure offhand whether pred can cause it and no time to look just now. Maybe someone else knows.

  • I too have burning hands and soles of feet, especially at night. I also have insomnia most nights until total exhaustion forces my body to sleep, generally after 3+ nights awake. Five hours is outstanding achievement in my experience!

    Currently on 35mgs. Started Prednisolone at 60mgs mid November for GCA.

    I don't have any answers for you but empathise with your symptoms.

  • Thank you. You appear to have done well to get down to 35mg in 3 months.

  • Should have said that one month at 60mgs reduced ESR from 114 to 2! I was astonished at the power of Prednisolone despite its ghastly side effects. Tapering since: 60 - 50 for five weeks (ESR held at 2), 50 - 40 for two weeks, 40 - 35 now for four weeks. Awaiting brick wall collision ..... or not! 😶 Next rheumatologist appt. end March unless disaster strikes. 🙂🙃🙂

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