quick history

[sandy37132]

k, diagnosised with Hepc 10yrs ago, had it for over 30yrs before it was found , blood trans in the 70s,  Am genotype 2a
did peg treatment but didnt take. all clinical trials in area are for genotype1.  Now the hep enceph hear there something to help that.  am at stage 2=3.  Dr offered a treatment for the hep(grr dont remember name) but with SSD and Carefirst out off pocket would be $1,000 a month.  So theres the low down any info or anyone with similair problems let me know....I thankyou all for your continued support

[sandy37132]

Was told to look you up.  All all the info I have received here, boy do I have a ton of questions for hep doc.  And I dont want to hear the prases like we will do this and we will do that, will make him into medical terms.  Worked in hosp. all my life should think he would explain with some medical terms.  Some times I think these hep docs think all their patients are dumb. clinical trials here, only geno type 1.  Would it be worth the trouble to do the interfon/riba again.  Dr never told me about HVC/RNA results.  dod you have esop varies also?

[orphanedhawk]

Hi.
I had genotype two and ESLD, end stage liver disease.
The new tx ( treatment)  in clinical trials is doing especially well for genotype 2s. My understanding is those meds are only available for trial settings, for free, so I don't know what other meds your doctor could be talking about putting you on.

I did treatment, relapsed, had a transplant and did treatment ( pegasys
( interferon) and riba) again and it worked. When I asked my very experienced hepatologist about the triple treatment, he said it doesn't work any better for genotype 2 than standard treatment.

You should be seeing a hepatologist~ liver specialist, who is experienced with hep C treatment and transplants. There's a list recommended from our members on my profile page.

If you have encephalopathy already, then there is little chance treatment, other than with the new meds in trial, will help you.

   Hopefully, Hector will see this and reply as he is more knowledgeable than I.

Best of luck,
OH

[ceanothus]

I probably can't help as much as I'd like because I don't know as much about genotype 2. I'm also still a little confused. I thought you were saying your fibrosis was stage 2/3, but then I don't think that's possible with all the signs of decompensated cirrhosis that you have. I don't think one can have varices and HE without having stage 4 fibrosis (cirrhosis). It finally occurred to me that maybe when you said stage 2/3 you meant the HE was at stage 2/3. Is that what you meant? Anyway, treating HCV is tricky when one has decompensated cirrhosis, and it really has to be done carefully and followed watchfully by a liver transplant specialist, in case the tx causes the liver to fail worse than it already is. You might want to try messaging Orphaned Hawk with questions. She's not as active on the forum lately but is still a good resource if you can reach her (her page is at http://www.medhelp.org/personal_pages/user/163305). She had genotype 2, had ESLD and HE, had a liver transplant, and then successfully treated the HCV, so she's already been through everything you are dealing with. I sending you my best wishes!

P.s. did you ask your hepatologist about whether it was okay to take a magnesium supplement in the evening to try to alleviate the RLS? I'm just curious. My doc was okay with it, but my cirrhosis is well-compensated.

[sandy37132]

ok, trying to remember, not sure about the rna level.  A good question for the doc.  I am on lactulose 30ml a day and propanodal (esphogenial varies)  My orignal question about enceph, pins and jerks, told RLS from HepCnot the enceph.  Thats about all I remember.  Liver functions still high.

[sandy37132]

last biopsy was 7 yrs ago  dr who found the hepC was by my RA dr who found my sjgrons syndrome.  He referred me to my now Hep dr and also Neuro to address the enceph.

[ceanothus]

Welcome to the forum! I had some difficulty following your post but mostly because it was too brief. Give us a more complete story if you can. I'm not as knowledgeable about genotype 2, but many here are, and you will certainly get some help if the story is clear enough. Best wishes!

[sandy37132]

Interferon & ribinfaron, pegasus treatment,  no change of liver functions

[Idyllic]

When you say "peg treatment but didnt take"

Partial responder: Person who had a ≥ 2 log drop in HCV RNA after 12 weeks therapy but never undetectable subsequently.

Null responder: Person who had < 2 log drop in HCV RNA after 12 weeks of previous interferon-based therapy
.
Also when was your last biopsy or whatever procedure used to stage your fibrosis?   Are you being followed by a doctor who diagnosed your HE?

Lastly what meds did your doctor suggest? It would help to know since there are some great new meds for your genotype but I was unaware they are already available and on the market.

Knowing these few things might aid the more experienced members taper a response based on your particulars.