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Author Topic: Hepatitis C and Porphyria Cutanea Tarda  (Read 11736 times)

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Offline littlekansas

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  • Posts: 8
Hepatitis C and Porphyria Cutanea Tarda
« on: December 06, 2014, 12:58:22 pm »
Hello, I  have PCT. The dermatologist took one look at my face and said it was from liver diseases as Hep C. without me telling her that I had been diagnosed 3 days prior with it. My face looks terrible and I have hair growing on my forehead and both sides. I also have horrible painful blisters all over my hands. 3 more just this morning (no sun either)...my hands hurt so bad and I can barely stand it....cant get into Dr for Hep C till January and I have no insurance....Very scared...Is anyone else going thru this?

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Hepatitis C and Porphyria Cutanea Tarda
« Reply #1 on: December 06, 2014, 04:52:35 pm »
I know there are other people on this forum with PCT. I am wondering if you can get insurance - the PCT means you are a high priority for treatment. Don't know if you live in a state that is on the exchange, but if so, this is the enrollment period. http://www.hepmag.com/articles/open_enrollment_2502_26355.shtml
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline littlekansas

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Re: Hepatitis C and Porphyria Cutanea Tarda
« Reply #2 on: December 08, 2014, 10:55:37 am »
Thank you,
I live in Kansas and trying to get insurance now. I have geno 1a with viral load over 3 million. 3 more blisters this morning and they burn inside my skin..may go to ER today

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Hepatitis C and Porphyria Cutanea Tarda
« Reply #3 on: December 08, 2014, 12:54:40 pm »
With a viral load of 3 million, you probably will only need 8 weeks of treatment, which the insurance company would like!
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline littlekansas

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  • Posts: 8
Re: Hepatitis C and Porphyria Cutanea Tarda
« Reply #4 on: December 08, 2014, 01:40:04 pm »
Well that is good I guess...I have been reading that people are pretty sick while taking this. My Son gets married next June, so I hope Im better before that!

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Hepatitis C and Porphyria Cutanea Tarda
« Reply #5 on: December 08, 2014, 05:11:18 pm »
Oh my, not at all. The new treatment has hardly any side effects. You can read about other people's experience on the Forum. Be sure to look at those who are taking Harvoni and not S+O
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Mike

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  • Posts: 999
Re: Hepatitis C and Porphyria Cutanea Tarda
« Reply #6 on: December 08, 2014, 05:33:11 pm »
Hi  Littlekansas,

The Harvoni is quick and well tolerated. Not at all like the old days of Interferon and Ribavirin combinations. In fact, you should be able to handle a wedding while on treatment with no difficulties.

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline workingonit

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  • Posts: 7
Re: Hepatitis C and Porphyria Cutanea Tarda
« Reply #7 on: December 24, 2014, 07:47:03 am »
Hi littleKansas,
I have most likely had HCV for over 40years. I also developed Porphyria cutanea tarda. I had blisters on my hands. I have done three different treatments for hep c as they were available that did not work long term. I went to a hematologist for the porphyria. The treatment for it was phlebotomies(blood letting) to get my iron down.
It's much like giving blood except they throw it away. LOL. It works. Its been a few years since I had to have one. I am currently on week four of Harvoni treatment. I get checked Monday the 29th of December. The Harvoni is a breeze for me so far. I can work on it with no problem, no real side effects. Unlike the different interferon/riboviran treatments. See a Hemo doc and they will get the porphyria under control. Good luck!

 


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