Guest guest Posted March 18, 2010 Report Share Posted March 18, 2010 I THINK THAT IS THE CORRECT SPELLING, ANYONE GOT ANY INFO OR ADVICE ON THIS TERRIBLE SKIN CONDITION? A FRIEND OF MINE HAS IT. I GOOGLED IT, GOT SOME INFO ON IT, BUT JUST WONDERED IF ANYONE FIRST HAND HAD ANY IDEAS ON HOW TO GET RELIEF FROM IT. BOBBY a ( Bobby ) Doyle, dob 12/17/29 Brecksville, Ohio, USA DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.017 11/2009 PCR 0.034 #840 Zavie's Zero Club Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2010 Report Share Posted March 18, 2010 Dear Bobby my mother was diagnosed 3 years ago with cll and 1 year later she started to suffer from this terrible desease- boulus phampegoid. her treatment included a combination of streoids- predisone and chemo pills named metatroxat. she had to change the dosage of predisone every month or tow, according to the state of the desease. she started with 50 mg a day and went doen to 15 mg a day. it takes time to get this desease under control and it is a situation where you need to up and down the medication on trial basis. in a research i did i found that 30 % of patients with cll get these skin desease, so there was some connection. best regards Giora [ ] BULOUS PENPHIGOID I THINK THAT IS THE CORRECT SPELLING, ANYONE GOT ANY INFO OR ADVICE ON THIS TERRIBLE SKIN CONDITION? A FRIEND OF MINE HAS IT. I GOOGLED IT, GOT SOME INFO ON IT, BUT JUST WONDERED IF ANYONE FIRST HAND HAD ANY IDEAS ON HOW TO GET RELIEF FROM IT. BOBBY a ( Bobby ) Doyle, dob 12/17/29 Brecksville, Ohio, USA DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.017 11/2009 PCR 0.034 #840 Zavie's Zero Club Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2010 Report Share Posted March 18, 2010 Thank you Giora for your response. My friend said this is much worse than shingles, and she had that right before this new diagnosis.  She has had the prednisone, but not the other, and does not have cml, or cll or anything else that I know of. Good luck to your Mom, this sounds like the rash from hell, Bobby a ( Bobby ) Doyle, dob 12/17/29 Brecksville, Ohio, USA DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.017 11/2009 PCR 0.034 #840 Zavie's Zero Club From: giora <giora1@...> Subject: Re: [ ] BULOUS PENPHIGOID Date: Thursday, March 18, 2010, 3:09 AM  Dear Bobby my mother was diagnosed 3 years ago with cll and 1 year later she started to suffer from this terrible desease- boulus phampegoid. her treatment included a combination of streoids- predisone and chemo pills named metatroxat. she had to change the dosage of predisone every month or tow, according to the state of the desease. she started with 50 mg a day and went doen to 15 mg a day. it takes time to get this desease under control and it is a situation where you need to up and down the medication on trial basis. in a research i did i found that 30 % of patients with cll get these skin desease, so there was some connection. best regards Giora [ ] BULOUS PENPHIGOID I THINK THAT IS THE CORRECT SPELLING, ANYONE GOT ANY INFO OR ADVICE ON THIS TERRIBLE SKIN CONDITION? A FRIEND OF MINE HAS IT. I GOOGLED IT, GOT SOME INFO ON IT, BUT JUST WONDERED IF ANYONE FIRST HAND HAD ANY IDEAS ON HOW TO GET RELIEF FROM IT. BOBBY a ( Bobby ) Doyle, dob 12/17/29 Brecksville, Ohio, USA DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.017 11/2009 PCR 0.034 #840 Zavie's Zero Club Quote Link to comment Share on other sites More sharing options...
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