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What to do , can any one tell me what they would do please

Posted , 9 users are following.

carol16456
carol16456

3 weeks ago because my neck and shoulders were not good and my blood counts go up and down between 22 and 40 .I asked a different doctor , as mine was away her advice .

Go back up to 15 mg pred , for 3 days . Then drop to 10 mg and stay at that for 4 week .

The first three days were great , then I went down to 10 mg .Since then my neck and shoulder pain have gone back to bad. . Now i have alwayssuffered from Neuralgia and having a really awful time with that now . My view is that the shoulder pain aggravates the neuralgia .

If any of you were in my shoes would you go back to 15 mg pred for three days then drop slowly as I would by .5 mg every 7 days . I had been on pred starting at 15 mg since November 15 . My Polymialgia trip started then .I had got down to 9.5 before I saw the doctor about the ongoing symptoms . Absolutely in despare, not one doctor advises the same .I see a neurologist in a week , but no doctor will send me to a rhumatolagist . When I ask why I am told the condition will work its self out in two to three years .Come on guys some one cheer me up I know you are good at that Carol

1 like, 50 replies

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  • gillian_25383
    gillian_25383 carol16456

    Posted

    Hi Carol,although a lot of people do not see a rheumatologist I cannot understand why if your symptoms are not responding your GP  will not refer you .I hate to put a dampener on the "it will go in 2 to3years".Hopefully for you it will but personally I have had it on and off for 12 years now.I do see the rheumatologist when GP decides I need to go back-must admit first one I saw who diagnosed me at 45yrs old did say it would come and go with flare ups but I would never get rid of it.Whether because I was so young at diagnosis(they say average age is 72)I do not know .Hope you have luck with getting referred and that you are lucky and it goes completely dormant for you.Good luck
  • constance.de
    constance.de carol16456

    Posted

    Third paragraph!  I'd certainly go back to 15 mgs and then reduce by .5

    None of us like going up, I learnt my lesson the hard way.  I refused to believe I  "needed"  to go up and suffered accordingly.

    Good luck!

    Regards fr C. 💐

  • tina-uk_cwall
    tina-uk_cwall carol16456

    Posted

    Hi carol, 3 days at 15mgs would have not achieved a lot. Up your preds back up to 15mgs for at least 2 weeks, then reduce if you like by .5 every 2 weeks thereafter. Then when you get to 10mgs reduce by the dead slow and almost stop method. Al least by reducing in such small doses you will soon know what level your current maintenance dose is. 

    If during your 2 weeks on whatever dose you are on, and it could even be 15mgs you do not feel as well as you did when you were on that dose originally stay on it a bit longer then reduce. Good luck. Regards, tina

  • david14272
    david14272 carol16456

    Posted

    Morning carol.if it was me i would go back up to 15mg and stay there for a few WEEKS. then req bloods before you even think of reducing.Dont let them rush you into reducing.take care and all the best for your journey.Dave
  • carol16456
    carol16456

    Posted

    Thankyou all for your prompt replies ,does it harm to yo yo on pred . I suppose that is one of my concerns ?
    • constance.de
      constance.de carol16456

      Posted

      I've been yo-yoing for the last year, just  couldn't  find the right dose to keep me relatively pain free, and I'm not dead yet!!!!!!

      C.

    • david14272
      david14272 carol16456

      Posted

      Simpe yes. it will take you longer to get of the pred.slowly does it, less pain & other problems.perhaps one of what i call the T/brigade will post with good info.they certainly helped me with my journey. Good Luck. Dave.
    • lodgerUK_NE
      lodgerUK_NE david14272

      Posted

      david14272, what does T/brigade stand for?   Is it Tortoise?

      I know about Club Zero, I am in it.   Have you read the stuff on that thread.

  • david14272
    david14272 carol16456

    Posted

    TIS I again. just taking a break from abit of pottering in garden hence on laptop.the T/Shirt girls&boys have a slow reduction plan that i followed with great sucsess.perhaps some one will post it for you. just  do not be in a rush,so that in the long run will you will have less problems,well back to my pottering in sun for my Vit D, Dave
    • gillian_25383
      gillian_25383 david14272

      Posted

      Hi David,glad you are getting lots of natural vit D.Rheumatologist just told my level is low and I now need to take daily supplement;so many tablets I would rattle if you tip me upside down😁
    • carol16456
      carol16456 david14272

      Posted

      Thank you David ,decided to go for 15 mg for the time being , and try .5 mg weekly or slower if needed . I am an artist love gardening and so because the neck shoulder pain is such a nuisance I cannot do any of these things at the moment .Have a lovely rummage around in the garden

      Carol

    • ptolemy
      ptolemy gillian_25383

      Posted

      Gillian, if you are on pred you should have been given vit D and calcium supplement with it when you started. Did you have a Dexascan?
    • carol16456
      carol16456 ptolemy

      Posted

      My doctor didn't think a decta scan nesesary. I am 67 . I do not understand the practise reluctance to send me to a rhumatolagist either . I am seeing a rheumatology next Friday if he feels the Pmr is agrivating the neuralgia perhaps he would encourage them .
    • carol16456
      carol16456

      Posted

      Meant to say I am seeing a neurologist next Friday and if he thinks the Pmr is aggravating the neuralgia perhaps he would advise the practise . May help you never know
    • gillian_25383
      gillian_25383 ptolemy

      Posted

      Hi Ptolomey,yes I had a dexa scan 6years ago when on steroids Had to come off because of side effects Just had vit D test done a couple of weeks ago before rheumatologist started me on methotrexate
    • ptolemy
      ptolemy carol16456

      Posted

      Carol, ask the rheumatologist about a Dexascan as a side effect of pred can be bone deteriation so you need to know how you are now. 
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