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joan83529 joan83529

Shoulder pain back

Hi. Would appreciate some advice please. Am 69, have taken medication for high blood pressure for years and Was diagnosed with pmr Jan/Feb 2017 . Started 15mg pred and all shoulder ,leg pain gone within days .Have managed to reduce down to 8mg twice since then but have been advised by doc to up dose to 12mg to combat odd feelings in my head, not severe pain just discomfort maybe exascerbated by fear of GCA. However for last couple of weeks have pain in left shoulder and arm and weariness/discomfort in thighs. Am currently using your dead slow stop method of reduction for first time and am between 10 and 11mg. I remember this was how my pmr started, thought it was pulled muscle till it spread so think this is a flair. I’m sure I’ve read on this forum that I can up the dose for a short time to zap the flair without having to reduce slowly again and that way I would return to 10/11mg. Questions is do I go back to 15mg and if so , for how long. 

   Further question, doc has suggested I go on a statin to reduce my cholesterol level  but again am sure I’ve read about statins and muscle pain . Any advice or information would be appreciated .

Thank you.

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  • EileenH EileenH joan83529

    If you are having a flare then just adding 5mg to where you are for a few days should get you back to a non-flare pain state. However - if the flare is due to you having reduced too far you shouldn't go back to the dose where the flare appeared but the dose above that., so in your case not less than 11mg. It may even be you need a bit more - 11.5mg for example. So the doctor's suggestion of 12mg is a good one - and stay there for a month or two before even thinking of another attempt to reduce. 

    Personally I have a total aversion to statins - I don't believe the cholesterol story as it has been disseminated. I took a statin for a week - and was almost in a wheelchair so, never again if I can help it. Unfortunately it seems my cardiologist is now set on me starting one. I shall avoid her for a while! After all, when it happened 5 years ago she was the doctor who told me it was fine not to - and nothing has changed since then. Or maybe she has only just noticed I have had PMR for 14 years!

    • joan83529 joan83529 EileenH

      Thank you Eileen. Will follow your advice re Pred . Am certainly not keen to start statins  and can remember conversation with previous doc about good and bad cholesterol when he raised issue years ago  so am determined to get some weight off  and improve my diet before I take any more medication . I used to poke fun at my mothers pot of pills but now I find I’m turning into her , not without a fight though !!!

    • EileenH EileenH joan83529

      The rheumy handed me the printed list the other day - 8 different things already. I'm darned if I'm adding the statin and bisphosphonate that have been mentioned recently! Not until they can prove to me they will make a difference. One of the risk factors for falls in the elderly is more than 3 medications!!!!

    • margaret22251 margaret22251 EileenH

      Hi Eileen , I have been getting for the past week slight pain at the front and back of both ears. Also slight aching on and off at my right temple, today as I was eating my lunch I got a pain in my left ear.

      at the moment I am on 6mg of pred, going from seven two months ago.

      i saw my rhemy three months ago, he wanted me t.o reduce quickly to four when I next see him.

      of course I did not I am using the dsns method.

      my question is do I see a doctor or is this normal.

      i have been through something like this befor two years ago and after been in hospital overnight was told it was nothing to worry about.

      hope you are well regards mad mags.🤔

       

  • mary19068 mary19068 joan83529

    Hi joan83529

    I have been prescribed 4 different statins and each one caused me joint pain. Needless to say i won't take anymore. However, i was told by a friend of a friend that half a teaspoonful of apple cider vinegar with filtered water each day will help lower cholesterol...my cholesterol was 6.9 and doctor wanted it to be 4.0. I started the apple cider vinegar and made no other changes in my diet and my cholesterol was down to 5.9 six months ago. I'm due for another diabetes glucose and cholesterol test soon and am very imterested to see what my cholesterol level is now. Still taking a glass of filtered water and apple cider vinegar each day, it also balances body alkalinity/acid which helps reduce inflammation.....

  • alley2 alley2 joan83529

    Hi all sorry Joan for starting a discussion on your page couldn't work out how to start a new one.

    I've had GCA for 18 months got down to 8mg of pred felt okay for maybe a week had a lot of stress the body decided that it was going to play up with all sorts of pain went up to 15mg pred that was good sort of sorted the pain out  for the last 4 months now on 12mg pred  holding good at first doc thought PMR and couple of months after now Fibromalga he says I have all 3 has anyone been in this possition I'm 55 and getting sick of being sick.

    • Mrs Hobbles Mrs Hobbles alley2

      Yes Alley2, I do! Fibromylgia pain is completely different to PMR as PMR us in specific areas whereas Fibro can be everywhere. I've found at high doses pred does dull fibro pain but not at lower doses.

    • EileenH EileenH alley2

      If pred relieves the pain it is ISN'T fibromyalgia.  Fibro isn't inflammatory and therefore doesn't respond to pred.

      But yes - PMR and GCA are really the same disease, just affecting different bits, and PMR is a symptom of GCA in many patients, about half I think will show signs of PMR at some point. But it is also possible to have fibro too. Though sometimes the "fibro" may have been confused with myofascial pain syndrome which is more common in patients with PMR and also causes trigger points to develop. Sometimes it responds to higher doses of pred but then returns as the dose is reduced as the trigger points are concentrations of the same inflammatory substances that cause PMR when they are systemic. Manual mobilisation therapies such as therapeutic massage can help. There are other techniques that help too. I got a lot of help from Bowen therapy.

       

    • EileenH EileenH alley2

      To start your own discussion - scroll to the bottom of the page and on the bottom left corner you'll see a black box saying "Start your own discussion" - just click on it.

    • alley2 alley2 EileenH

      Hi Eileen yep I feel I can get to Ten pred slowly I’m on Targin and this helps with the pain I can get around and do things without it I doubt I could.  I’m pretty well in tune with my body more than ever still got the diabeties I got my weight down to where I started and when I got to 15pred got the munchies again down to 11 today hunger urge for munchies slowly going thankyou for your answers they are reassuring 

    • EileenH EileenH Mrs Hobbles

      Your PMR pain may in specific areas - but I can assure you that my PMR pain was pretty much all over! But then, I suppose it had plenty of time to build up. It all went with pred so it wasn't fibro.

    • Anhaga Anhaga Mrs Hobbles

      I agree with PMRpro on that one - by the time I was diagnosed I had "pain all over" which is what "polymyalgia" means!  I might have had less trouble getting a diagnosis from the useless GP I saw first because she wanted me to be specific about where I felt the pain and by then I wasn't even thinking clearly enough to be able to tell her how it had started.  in my case the start wasn't overnight but a gradual build-up over quite a long period of time.

    • alley2 alley2 ptolemy

      Hi my legs constant pain really bad at night Targin was the only thing that stopped it. Yes these sort of drugs are addictive if they are going to help me sleep and have some sort of life I don't care I will deal with that when it comes and my pain is all over head down some days Targin helps me.

       

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