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Been diagnosed with genetic neuropathy

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lorna60206
lorna60206

Consultant has advised me to come off prednisolone which I have been on for the last 10+ years, (dosage up to 60mg) I was on 7.5mg for the last 2 years and was advised in June by consultant to taper prednisolone, to date I have managed to come down to 6mg, I don't think I am going to come down further, at present, as I am unable to cope with the side effects so I Just wanted to know has anyone suffered the same side effects as I am having- EXTREME tiredness, sweating, headaches, difficulty walking.  Any advice on what might help (diet, supplements) Thank you

0 likes, 6 replies

6 Replies

  • marey
    marey lorna60206

    Posted

    hi lorna...i'm very relieved for you that your dose of this strong drug is being reduced. do you know how your hormones are? 

    i'm about to embark on a DE-TOX which could help you too. there may still be a place as i can introduce a friend...it would only be $1O FOR YOU ....but there is an issue about getting the supplements...equivalents have to be found in uk.

    i hope i can help you. google detox with dr sara gottfried...she wrote the hormone cure...let me know . love marey x

  • mrsmop
    mrsmop lorna60206

    Posted

    Hi Lorna, there is a lot about steroid tapering on the PMR forum, I'll look for a link.  You have to taper incredibly slowly.
  • mrsmop
    mrsmop lorna60206

    Posted

    https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

    Look down this page, for EileenH@s post, she tells you how to reduce your Pred.

    I'm sure this will help, good luck!

    • mrsmop
      mrsmop

      Posted

      oops!  I meant Eileen's!
    • lorna60206
      lorna60206 mrsmop

      Posted

      Thank you so much mrsmop for that information.  I have been tapering down 1/2mg a month since June I am now on 6mg and finding the extreme tiredness hard to cope with, thinking of going back up to 7.5mg (I had been on this amount for over 2 years) for a month or so and then taper down as per Eileen's information, I'm just wondering how long does it take when off steroids to start to feel normal!!!! Thanks again
    • mrsmop
      mrsmop lorna60206

      Posted

      I remember talking to someone once, who had been on steroids for Crohn's Disease and she said it took her about a year after stopping, before she felt 'normal' again.  I don't know what sort of dose she had been on, or for how long.

      It certainly feels pretty awful dropping from 2 to 1mg!!  Once you have been successful in dropping a stage, you need to stay on that dose for a month, then try the next stage.  It is a very long process.

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