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Author Topic: Diagnosed Hep C and PBC  (Read 10535 times)

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Offline HepcPbc

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  • Posts: 9
Diagnosed Hep C and PBC
« on: July 06, 2015, 01:34:57 am »
Anyone else with both Hep C and PBC?  I'm trying to find experience, professional Dr for treatment and in the interim, trying to figure out what I need to do and when to do it.  Received extensive tests in UAB, AL and my diagnoses.  Then it was like the Dr and UAB dropped off the face of the earth while I tried to get my prescription, advice, etc.  As a result, I've lost confidence in my Dr and UAB, and now wonder if diagnoses and/or prescription are even correct, and what follow up tests and treatment are needed.  I would like to know what others with Hep C and PBC are doing for treatment.  Would like to create a "cheat sheet" for myself and others that outlines tests, how often, what to look for; medication, how long; list of experienced, professional Drs by location; etc.  Thank you in advance for any help.   

Offline TexasC+

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Re: Diagnosed Hep C and PBC
« Reply #1 on: July 06, 2015, 06:23:49 pm »
Each genotype of hep c has its own treatment rx. What is PBC? primary biliary cirrhosis?
« Last Edit: July 06, 2015, 06:25:35 pm by TexasC+ »
Genotype 3a
diagnosis date 4/29/15
treatment naive
viral load 6 million
unknown date of infection
Sovaldi and ribaviron  24 weeks started 6/1/15
End of treatment date 11/15/2015 VND last 2 labs
3 month follow up 2/22/16 NEGATIVE !! NOT DETECTED

Offline HepcPbc

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Re: Diagnosed Hep C and PBC
« Reply #2 on: July 10, 2015, 12:45:52 am »
TexasC+,
Genotype 1b and prescribed Harvoni, but still waiting for meds.  Diagnosed in USA, but now in Germany and German Dr says Hep C and Autoimmune Hepatitis, but she thinks I do not have PBC (Primary Biliary Cirrhosis((name has changed, but forgot new name)) ) and will know more upon completion of treatment of Hep C.

Offline newguy1

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Re: Diagnosed Hep C and PBC
« Reply #3 on: July 17, 2015, 04:01:38 pm »
Did you get your Harvoni prescription in Germany? I am curious how European countries are dealing with this and seems like in the UK they will only give it out to people with advanced liver damage. What is the German model?

For what it's worth, I live in the US but most likely picked up my HCV in Germany.

Offline HepcPbc

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Re: Diagnosed Hep C and PBC
« Reply #4 on: July 17, 2015, 04:39:23 pm »
Hi, Still waiting on my Harvoni.  It is being ordered thru the US military hospital here in Germany.  Thought that would be easiest for a variety of reasons. BCBS approved 8 weeks of treatment.  Pharmacy said it is probably based on viral load.  German Dr said I should take it for 12-24 weeks and 8 weeks is not enough.  Not sure if viral load had increased when tested by German Dr ?!?  For now, the plan is to begin treatment as soon as medicine arrives and for followup and tests with German Dr.  So have you completed Harvoni treatment?  Oops...I just reread your initial post and see you have a different genotype and different medication with longer duration.  I hope you are doing ok and treatment is progressing with positive results.   :)  (Double oops...I just realized the genotype and treatment was from another poster...sorry...I'm so confused!!)
« Last Edit: July 17, 2015, 05:03:55 pm by HepcPbc »

Offline newguy1

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Re: Diagnosed Hep C and PBC
« Reply #5 on: July 17, 2015, 11:22:10 pm »
Mine is geno 4b, much more common in Europe than the US. Harvoni works for it perfectly but not FDA approved yet. Hence my questions about treatment in Europe.

Offline HepcPbc

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Re: Diagnosed Hep C and PBC
« Reply #6 on: July 18, 2015, 09:02:42 am »
I'm pretty sure the German Dr had talked about prescribing Harvoni, but I told her I wanted to get it through the US military base.  I am also pretty sure this was before she got all of the German testing done (they don't accept the American tests, but wanted copies of everything), so don't know if they prescribe before or after liver damage/cirrhosis.  I know they register me with the city...maybe further, as having an infectious disease. 

Are there any clinical trails that would allow you to take Harvoni?

 


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