Been diagnosed with genetic neuropathy

Posted , 3 users are following.

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

Report / Delete

6 Replies

  • 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

    Report / Delete Reply
  • 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.
    Report / Delete Reply
  • 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!

    Report / Delete Reply
    • 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
      Report / Delete Reply
    • 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.

      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up