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Hello Friends. Pl read my post and throw some light on this whole thing.

Posted by sarada on September 29, 2009 at 5:43am
Hello Friends, I am a new member to this forum. I have been looking for this kind of support forum for vitiligo for long y time and finally come across this one. My husband started getting vitiligo like couple of years ago. It started like where ever he had a cut or wound he didn't get the pigmentation back. He has got a like a big round patch on his thuimb now and some small spots on the other fingures and also got a patch on his chest. He has been using protopic for a while and also started taking ayurvedic pills called "Epderm" (Anybody tried this ayurvedic medicine and got any hope?). So my question is how fast does it spread in two years the patches are slowly getting bigger does it mean that it's going spread and if it spreads how fast does it usually happen? Is there anything we could do to stop that from spreading? Thanks a lot for reading my post and Pl do answer my questions. God bless you all and help you all to find a cure for this monster. Thanks.

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Replies

  • Charles Wright September 30, 2009 at 5:08pm
    The rate of spread is different for each person just like the trigger that causes the onset of vitiligo can be different for many. Some have it start at cuts, or after surgery, and some from stress or genetics. There are many possibilities of what starts it and how much it spreads. As of now there are ways to repigment but none are known to be a cure. So any pigment that he gets back may not last forever. I have tried different treatments in the past and had very good results that didn't last. I believe someone on this site will find either a cure or a long lasting treatment so I read on and you and your husband should do the same. If you find anything please post it. We are normal people who have vitiligo. Both of my grandfathers had vitiligo and as a child and I remember being scared because one would growl at me and say he was a monster. Today the word monster still makes me think of those times and what he must have been going thru. It's only a big deal though if you were referring to someone so don't beat yourself up about it. God bless you too.
    • sarada > Charles Wright October 1, 2009 at 1:13pm
      Thanks Charles
    • Nathan Yeti > Charles Wright October 1, 2009 at 4:56am
      Just to add a point regarding onset of V. For some kids, vaccination can induce V. There is a ton of published research.
      • sarada > Nathan Yeti October 1, 2009 at 1:14pm
        Thanks Nathan
  • amr assaf September 30, 2009 at 2:21pm
    "cure for this monster"... ...lol

    what would a real life threaten disease be named in your books ??

    btw ,you are overreacting and your husband condition will not get any better if he ever heard you labeling his VITILIGO as a monster
  • Nathan Yeti September 29, 2009 at 6:07am
    Our experience is that some kind of additional ointment (a very mild steroid) needs to be applied in parallel to Protopic. There is NO harm in applying a mild steroid. Some doctors are just afraid. Henec, you need an aggressive Dr. Protopic alone may not work in many cases. For example: Protopic 5 days a week, two times a day. and Cutivate on the weekends or Apexicon on weekends....It all depends on the your dermatologist, how aggressive he/she is in treating V. Plus, above all, the body should respond. For some, V can be reversed. We have seen patients, saw pictures. We have first hand experience. So, to summarize, have faith in the medicine and the treatment philosophy of the Derm. I cannot stree the importance of Derm. First, we found a Derm, who is a laid back persona and told us, nothing can be done on the planet earth. He was 100% wrong. atleast, in our case. We have no experience in Ayurvedic medicine. Never tried or went in that direction. Also, this is just observation only. If V comes very quickly, it has the potential for reversal somewhat quickly. If the onset is rather slow over a priod of time, such as 4 or 5 months, reversal is difficult. Hope this helps.....

    To resummarize, Protopic is working for some. We are the LIVE example...I break my head everyday, why this Protopic does NOT work for everyone......

    Take care....
    • sarada > Nathan Yeti September 30, 2009 at 3:51am
      Thanks Nathan.
    • Alex Greiss > Nathan Yeti September 29, 2009 at 4:46pm
      i find the monster comment i little insulting. from what you wrote, it seems like your husbands vitiligo is minimal... what are you so concerned about? if it spreads he may look different... but that's as bad as its gonna get.
      • sarada > Alex Greiss September 30, 2009 at 3:50am
        Sorry Alex if i hurt anybody's feelings. I didn't mean it that way i know about that disease i got lot of people in my family suffering from that. I truly apologize.
        • Alex Greiss > sarada September 30, 2009 at 6:22am
          apology accepted. there's a fine line between suffering from vitiligo and living with vitiligo. I'm one of the guys who live not suffer.

          and its far from a monster

          "Lessons learned from vitiligo can only be learned through having vitiligo" - Ogo :)
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