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Duration of PMR before it burns itself out

Posted , 16 users are following.

jeannae68307
jeannae68307

My rheumatologist at the University said last week that the vast majority of his patients have PMR for about 9 months.  I have had it 33 months.  All the posts I am reading seem to indicate that it generally lasts longer than 9 months.  Can anyone tell me what their rheumatologist say to expect for time until it burns itself out?  And, has diet or anything other than steroids helped expedite the timeframe?

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  • pam7653
    pam7653 jeannae68307

    Posted

    My Rhumy told me 3-6 years, up to a lifetime. I'm starting year 5. I have about two flares a year. I am stable at 5 mg of Prednizone but need to now take it up to 20 mg instead of 10 or 15mg like before to get relief now.

    • jeannae68307
      jeannae68307 pam7653

      Posted

      I'm so sorry you've had to up your dose.  It's tough.  But at least we have this forum where we find support and can help one another.  I hope things get better quickly for you.

    • nellie14381
      nellie14381 pam7653

      Posted

      I was very bad for first 3 months, a little bit better for next 3 months, was diagnosted in 9 months, was one month on prednison, and had to quit due to stomac issues, then started taking intiflammtory supplement based on Turmeric and chinese herb and progrssevely got better, not good, but much better, and then my doctor decided it's not a PMR but Fibromyalgia. I was taking Tramadol 50 mg for pain, and was taking just one per day and that kept me going.I'm in much worse shape that I was 4 years before when I was doing yoga, many things I cannot do now - bent my knees, sitdown on the floor, my arms/shoulder kind lost streng as  they were the worst affected by PMR, I'm stiff, but I'm now back working on my fitness level - started walking, stretching. My family doctor told PMR can go away in some people without medication, and I'm not sure if I'm one of them as I do not take prednison. If I would continue be sick as I was in first 3 months, I would probably need to stay on prednisone or other medication. since lately any medications side effects worse then original probel, I'm trying stay away as much as possible from taking medication.

  • Nefret
    Nefret jeannae68307

    Posted

    As far as I am aware all current medical guidelines give a minimum of 2 years, but only 25% of patients achieve this.  The average at the moment seems to be around 5-6 years.

    I don't know where your Rheumy gets his numbers from, and I'd hate to be one of his patients.  Can't even imagine what he would do with me being 16 years in!

    There are no rules about diet, but given that most patients put on weight as a side effect then a low-carb diet probably helps.  Otherwise something like a Mediterranean diet would be the way to go.

     

    • jeannae68307
      jeannae68307 Nefret

      Posted

      Thanks.  I have no idea where he gets his numbers.  He is an assistant professor at the University.  At least he listens and doesn't give me a lot of push back.  Although I don't want anyone to have PMR 16 years, it does give me hope for a future.  I lost my dad to sepsis after two years on pred for PMR.   I've had sepsis too so I was scared.  Your story gives me hope and I appreciate your sharing.  Thanks.

    • donna25417
      donna25417 Nefret

      Posted

      I did change my diet for 30 days to see if it would help my PMR I ate no dairy no sugar no grains no alcohol and I did see an improvement and lost 12 pounds feel good.  am now down to 7mg pred. and very little pain. Will take that for now as I know may  have flair ups at any time. 
    • amkoffee
      amkoffee Nefret

      Posted

      I would have to argue with you. I don't think a diet would have any influence on the length of time the disease lasts. We all take prednisone but it does nothing more then treat the symptoms. It also will not shorten the duration of the disease.

    • EileenH
      EileenH amkoffee

      Posted

      I didn't think that was what Nefret said - she suggested the low carb to help avoid weight gain/lose weight, which it indubitably does for a lot of people. The Medditerranean diet includes a lot of antiinflammatory foods - a low carb Mediterranean diet has been shown to help a lot of a/i conditions. No, it doesn't cure them but every little helps.

  • daniel08939
    daniel08939 jeannae68307

    Posted

    My rheumatoligist told me 2 - 4 years. I had it almost three years. Nothing but prednisone worked for me. I went three years after it burned out with no symptoms and no prednisone. Five months ago I have it again.
    • jeannae68307
      jeannae68307 daniel08939

      Posted

      Wow.  I'm so sorry that it's back.  At least we know it went into remission once and can do so again.  I hope you go into remission quickly.  Thanks for the quick response.

  • donna25417
    donna25417 jeannae68307

    Posted

    Hi I was diagnosed last August with PMR so nine months now,  I am down to 7mg prendisone a day and feeling very little pain now , I did change my diet not eating as much sugar or dairy which what I have read feeds Inflamation. There are many people on this who have had PMR for 2-3 years I am still hoping I am one of the lucky ones hope to be off the prendisone by August so far no flair ups on my tapering . Hope all the best for you Jeannae 
    • jeannae68307
      jeannae68307 donna25417

      Posted

      Thanks, Donna.  I hope you are lucky too and that by August you will be pain free and steroid free.
    • Anhaga
      Anhaga donna25417

      Posted

      You may be lucky, but be aware that the reason you feel little or no pain now is because you are on pred which is working effectively for you.  I usually feel pretty good whenever I'm stable on a lower dose, although the lower I get the harder each taper becomes.  I got to 7 mg from 15 in about six or seven months.  But about sixteen months later I'm still on pred, 2 mg now, with a rather tentative effort underway to go to 1.5.  Also reckoning in the undiagnosed fourteen months nearly two years treated well into third year.  I no longer calculate when I'll be at zero pred, but instead just keep chipping away to get get lower, no matter how long each step takes.  Funniiy the other day I felt so extremely well I fleetingly wondered whether PMR had left me.  But three days later I know it hasn't.  

    • donna25417
      donna25417 Anhaga

      Posted

      Hi thanks yes wishful thinking it could be gone in one year I just take one day at a time from reading all the comments on this forum things can change very quickly . Taper going ok so far but am aware flair ups could happen at any level going down to 6mg tomorrow see how that goes, 

      take care and thanks again. 

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