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Darier's disease and PA

Posted , 4 users are following.

steve43628
steve43628

Hello all.I just joined this site today.I saw my rheumatologist last week in Epping.He mentioned I might have PA.Gave me a steroid injection.I am at Guys and St Thomas London Bridge tomorrow and have just seen a post about a new drug for PA called IXEKIZUMAD.Hope I can get on the trials so I can post my findings on here.I have suffered from dariers all my life since puberty.It is similar to psoriasis,but rarer,I treat it without any drugs these days.I use cider vinegar,and oregano,vitamin e,vitamin b1 seems to have helped my cholestorol too.One of the side effects from taking those damned pills called acitretin,or when I first started Tigason Cod liver oil.Mostly it's what I don't take in MY diet that makes the difference for me.I try to not eat yeast,although I love wine,ciders etc.I try not to eat bread with yeast and wheat in.No citrus if possible.sugar I keep low too.It's certainly helped me with the itching side.

1 like, 18 replies

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  • hope4cure
    hope4cure steve43628

    Posted

    Hi Steve,

    Sounds like you have managed Dariers disease very well over the years. It's very hard to deal with all the time . I have psoriasis and PsA. I truly hope you can get into the trials for the new bio drug. There are many bio drugs already approved just wondering if you have tried any of them. Some block the lL-23 pathway and others like this trial your trying to get in blocks the lL-17 .

    Good Luck and hang in there. 

    • steve43628
      steve43628 hope4cure

      Posted

      I've ended up trying to deal with dariers disease hollisticly as much as I can Hope4cure.Yes.Very hard to deal with for all of us sad Support is so important. Seeing them at Guys today I mentioned the drug,but they said it was specifically aimed at people with psoriasis,so it will have to be one of you brave people to carry the torch there.I had loads of blood taken to test for Vasculitis this time.3 Hospital visits since 26th August to Harlow for hand operation. Epping for rheumatology and PA tests so more blood tests and steroid injection and London today.It wears you down.Osteoporosis has seen to me into double figures on major ops too.I feel for everyone here because we all sure go through the mill!! sad thanks on your good luck and hang in there BTW. Means a lot smile
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