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Hi i have had bullous pemphigoid for a year ...

  • Hi i have had bullous pemphigoid for a year now. I want to try alternative medicine im on 10 mls steroids. Can anyone advise me

    Post created 3 months 2 weeks ago

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  • Hi Erica,

    Hi Erica,
    I have coped with this terrible disease for over 3 years. As well as prednisone have tried methotrexate and Myfortic, both worked for a while, then blisters returned. I am now just on prednisone and am trying honey and unripe bananas, so will keep you informed if I have any luck with this! I think alternatives are a good idea as all these powerfull drugs have horrible side effects.
    Good luck,I hope you feel better soon.
    .

    3 months 2 weeks ago

  • Hi Erika

    Hi Erika
    You have my deepest sympathy going through this for so long. I've had it since March of 2016. To get control initially, I was on a high dose of prednisone and Imutan and then eventually tapering off. At the moment my doctor has me trying Minocycle and a high dose of Niacinamide. I would say it's subdueing it but not real well. If this progresses, my doctor has been researching two different experimental infusion drugs. Unfortunately they have more serious side effects. I don't know the name of the drugs but I see the doctor in early February and I can ask what they are and let you know. This is a terrible disease that makes life uncomfortable at best. So sorry you are dealing with this.

    Karen

    3 months 2 weeks ago

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