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PMR OVER IN 3 MONTHS?

Posted , 12 users are following.

diana21296
diana21296

Hi Eileen, I took some mobility equipment back for a friend and there was a volunteer chap there with PMR whom I have seen before.  He said he was on a maintenance dose of 4mg after 4 years.   But he said he knew people with PMR who were off steroids within 3 months.   I said they couldn't have had PMR and he swore they had.   I didn't stay to argue with him as very self opinionated.    Have you every heard of that???

Another volunteer in Oxfam around 80 told me she had been diagnosed by her GP with PMR at some stage and she "had got over it on her own without steroids" looking at me in a very superior way.   All sounds very odd to me.

0 likes, 18 replies

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  • Mrs_Hobbles
    Mrs_Hobbles diana21296

    Posted

    My doctor told me a male patient of hers was perfectly fine and back to work after 6 months and a friend of my dad's said he had PMR but was given an injection into both shoulders and was 'cured'! Hence, neither my doctor or my dad believe that I have PMR for the last two years!! I've argued the point with both of them butnif they're adamant it's true! There is some evidence that men get over it quicker then womem, but 3 months? Don't believe it for a second and dealing with it, without steroids?? Hmmm all a bit fishy I'd say🐠🐡

    • doni89057
      doni89057 Mrs_Hobbles

      Posted

      Personally, I'd find a different doctor if the one I had was as uneducated and ill informed about my condition as yours is. At the very least, send her a copy of the Bristol paper. Your dad, unfortunately, you can't fire, but I feel badly for you that you have to put up with his lack of support. Maybe he'd like a copy of the paper as well.

    • BettyE
      BettyE Mrs_Hobbles

      Posted

      I reckon there are two sorts of people; competitors and co-operators.  Flawed species that we are, it seems that not only do the competitors regard themselves as superior but they  get to run most of the world.

      We are entitled to expect better of our friends and family, I think but attitudes seem to be entrenched shortly after birth. I speak as one involved with very young children!

      Hooray for all of us on here doing our best to help!

    • Harrie4
      Harrie4 BettyE

      Posted

      Ha, BettyE! I categorize folks as ‘connectors’ or ‘squelchers’.  One thing about PMR: you learn to surround yrself with connectors who love life and think both positively and independently. Lots of connectors to be found here.  So that’s a gift.

    • EileenH
      EileenH Harrie4

      Posted

      Oooh - I'm intrigued: what's squelcher like???? 

    • Harrie4
      Harrie4 EileenH

      Posted

      A squelcher is the opposite of a connector. Connectors build relatedness by looking for what we share and building on that. Squelchers tend to be concerned that how their place in a hierarchy (based on difference) might be threatened.  So innovation and creative ideas can be squelched rather than allowed to emerge.  You’ll hear a connector say that they don’t care where a good idea comes from.  It’s  usually rooted in control and is often apparent in the  working relationships we each have with our various practitioners. For example, my GP is a connector;  my rheumatologist: maybe not so much. 
    • BettyE
      BettyE Harrie4

      Posted

      So would you say that connectors are life long learners and squelchers knew everything by the time they left school/ qualified/ graduated?

      The GP who got me through two bouts of PMR is a life long learner. He picked up on everything. When taking my Pred. at night solved my hyper problem he said, " I'll remember that for future reference reference"; When I told him that  the Arthritis research exercises had cured my neck problem, his response was " Show me"

      Apparently not everyone got on with him; perhaps they were the squelchers?

    • Harrie4
      Harrie4 BettyE

      Posted

      There’s also an undercurrent where ‘squelchers’ don’t want anyone to rock the boat: a kind of rigidity. So they ‘squelch’ the disruptive and slightly subversive energy that accompanies daring to ask both ‘why’ and ‘why not’. But as so many of us on this forum know from painful experience, growth and productive change doesn’t just happen : you have to be an active partner in your care and ask just those questions.

      You did hit the nail on the head, Betty: there’s a strong correlation between being a connector and being an avid life long learner....and perhaps with longevity itself....

      (Not to mention the fact that I think connectors have figured out how to have more fun in life — even when they’re saddled with a companion like PMR — than squelchers.)

  • rich38490
    rich38490 diana21296

    Posted

    No one has this at the same degree, nor does anyone "recover" on a patterned schedule. Work with you GP or RA to develop a schedule. Use DSNS for staters. Best wishes.

  • EileenH
    EileenH diana21296

    Posted

    The underlying cause of PMR does burn out on its own and something under 20% of patients are off pred in under 2 years. It is very difficult to tell exactly WHEN it burned out when you are on pred and having to reduce slowly to regain adrenal function. PMR is always described as a self-limiting condition - i.e. it will go away on its own even without any intervention. The only reason for the pred is to make your life worth living in the meantime - there is no real need for it except that long term inflammation coursing through your body does cause other problems. People who have shorter episodes possibly never go to the doctor anyway, accepting it is part of aging as I was assured by my GP, are almost certainly told it is "a virus" and are felt to be at a higher risk of a relapse at some later point.

    If they were off steroids in 3 months - then it most likely wasn't the PMR we talk about here. PMR isn't the disease, it is the external expression of some underlying condition and there are many. The most likely candidate for a 3 month duration would be either a reactive form of PMR (some thought there is one, and why not) or of an inflammatory arthritis. They may be caused by a virus or chemical exposure for example, cause a short-lived flu-like illness and then you recover - and the symptoms go away. There is also RS3PE syndrome - very similar to PMR in many respects, responds to pred and it can disappear too. And most GPs have never heard of it! 

    Since there is no definitive test for PMR how could he be so sure it was the PMR we talk about? Doctors can't be, I doubt he had any special knowledge - if he does it would be helpful if he shared. As for being "superior" about having dealt with PMR without pred the lady should  consider herself lucky she didn't have it as badly as many do and that it didn't proceed to GCA. I lived with PMR/no pred for 5 years - I don't consider myself superior for having done so, more stupid for not looking harder sooner. I've no desire to go back there, ever. 

    • doni89057
      doni89057 EileenH

      Posted

      Well said, as always. One thing that people often forget (or don't know) is that PMR is now referred to as a "syndrome" rather than a disease. So, as Eileen states, an expression of some underlying condition. It is very possible, even likely, that in actuality we are dealing with more than one disease, or rather a collection of different diseases, that make up this "syndrome". So the disease that is causing my symptoms may very well be completely different than what is causing yours. We just don't know yet. A friend of mine who is a neurologist (and who is also the angel who helped me and my doctors see that my problem wasn't related to a messed up spine but was indeed an AI issue) told me that the neurology community believes that there are many as-of-yet-undiscovered viruses and bacteria that may well be causing some of the problems they see, and that it's hard to treat what you don't know. You can only treat symptoms. That's what we are doing in most cases with PMR. All that said...PMR gone in 3 months? Pretty skeptical, although anything is possible. Most likely a wrong diagnosis, and we all know there's plenty of those out there!  As for someone who feels superior for having survived it without steroids, that person is either misdiagnosed, very lucky or very stupid. Like many of you, I endured 2 months of agony and inability to function before I went on Pred. I have a known very high pain tolerance, and I simply couldn't, COULDN'T, get out of bed, use the toilet, walk to my door to let my dogs out without excruciating pain to the point of tears and the simple task taking 30 minutes. You all know what I am referring to. My ex stopped by several times to help me and later told me that he thought I had bone cancer and wasn't telling him. So anyone who is getting through it without steroids is either an idiot or they don't have what I have. And any doctor who thinks that amount of discomfort is a part of normal aging is not listening to their patient. sad

    • EileenH
      EileenH doni89057

      Posted

      Thank you for explaining what I didn't feel I had time for this morning. I reckon there are at least 4 different versions of the PMR we talk about - and that is ignoring all the other things like cancers and inflammatory arthritides that can cause polymyalgic symptoms.

      Many painful muscles - that's all it means...

  • ptolemy
    ptolemy diana21296

    Posted

    The fact he gave the impression he knew more than one person who had got off steroids in three months is suspicious. Since getting PMR I have met people also with it, but to find two people even who had got off pred within three months is highly unlikely. Why was he still on it for four years? You do come across people who say they got over it without steroids, it does seem some people put up with an awful lot of pain, if they didn’t it seems unlikely they had PMR either. 
    • diana21296
      diana21296 ptolemy

      Posted

      Agreed...I explained the DSNS method so that perhaps he could reduce a bit lower, but he said this method was far too slow for him....Hence over a year ago when I saw him he was on 3.5mg with stiffness every morning, and now he's stuck on 4mg and still has lots of stiffness!    No use trying to help that type and he was extremely overweight.

    • ptolemy
      ptolemy diana21296

      Posted

      What an idiot, he would have been better off not bothering with pred if he were in such pain anyway. 
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