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Author Topic: Recently diagnosed - Advice Please  (Read 13953 times)

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Offline Me123

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Recently diagnosed - Advice Please
« on: May 23, 2013, 07:11:39 pm »
First off, thanks for visiting my post.

I recently found out I had Hep C a couple of months ago and I was finally able to meet with a specialist this week. I am a 25 years old male and believe I may have contracted Hep C through a blood transfusion as a preemie. I have no history of drug use, but I did drink alcohol about 1-2x/week for the past 4 years (have not had a drink in 2 months since I found out and do exercise regularly, but have pre-diabetes (diabetes runs on both sides of family)). I have a high viral load of 9.7 mil, mild liver damage, and am genotype 2.

My main concern going into the docs appt. was whether I should begin treatment now or wait until new meds come out. The specialist said I am in good enough shape to wait for the new meds to come out this Fall. He said they will be available by that time, but I am receiving mixed messages via online that it may take longer.

One other caveat, I am currently unemployed and do have insurance under my mom until i'm 26, but with the new meds possibly  coming out later this year or later it may be tough for me to pay for meds if I do not find a job by that time.

With that said, does anyone have any advice or suggestions on what I should do from this point forward?

Thank you very much for your time and help.

Offline jberlin

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  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: Recently diagnosed - Advice Please
« Reply #1 on: May 23, 2013, 07:38:59 pm »
Well, I, for one, am sorry we have to welcome you here to our group - but hope we can help.  Your situation has some ugly nuances with the insurance thing...  But, as Frank just said on a post and I have said a few times, it depends mostly on the condition of your liver, and since you say mild damage, this is a toss-up.   I believe most geno 2s are still on dual therapy for 24 weeks, but I am not sure.  I think at your age, in good health I would get to back to that liver doc, or another, and if he feels you have decent odds with a 24 week regimen - I suggest not f'ing around and just get it over with.  There are no guarantees that the new stuff will be any easier or more effective, even though it looks promising.  Especially if they agree to get you on the triple therapy.  I believe dual therapy is over 80% effective on geno 2, and with Incivek, even better.  Good luck, and keep us informed.

Offline Me123

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Re: Recently diagnosed - Advice Please
« Reply #2 on: May 23, 2013, 09:08:08 pm »
Thank you Jberlin. Appreciate the help. I'll set another appointment soon to speak to a different doctor. I will keep you all posted.

Offline iana5252

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Re: Recently diagnosed - Advice Please
« Reply #3 on: May 24, 2013, 09:40:51 am »
Welcome Me123

Well done on taking the initiative to investigate all of your options.

You should take a look at Devon Nicholson's Hep blog.
http://blogs.hepmag.com/devonnicholson/

He is currently undergoing triple therapy with Incivek for genotype 2. The treatment is considered experimental because triple therapy hasn't been approved for genotype 2 yet. Keep in mind his liver was in worse shape than it sounds like yours is which factored into his decision.

Offline Me123

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Re: Recently diagnosed - Advice Please
« Reply #4 on: May 24, 2013, 03:47:18 pm »
Thanks for the link Iana!!

Offline jberlin

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Re: Recently diagnosed - Advice Please
« Reply #5 on: May 24, 2013, 06:10:14 pm »
Devon's video diary has been excellent.  Search youtube for other hep C videos, with Ana's video diary perhaps being the best.  Devon is dealing with the Canadian health system, so you might find it different in the USA.  I am surprised they have Devon going for as many weeks as they are however, just based on all the material I have read.  But, certainly less info on triple therapy and geno 2 - find an expert.  From studies I have seen if a rapid virologic response is seen, in geno 1 or 2, and is maintained for 12 weeks, then the treatment can and should be completed at 24 weeks, with over a 90% SVR rate. (if completed)  Keep us informed...

Offline Me123

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Re: Recently diagnosed - Advice Please
« Reply #6 on: May 29, 2013, 07:31:09 pm »
So, I received a second opinion from a NP yesterday at a different hospital and she mentioned I am fine to wait as well. I am going to take this weekend to think this through, but as of now I am leaning more towards waiting for the new meds to come out.

If I do decide to wait, does anyone have any advice/know of any websites on healthy diets?

Once again, thank you very much for your time and help.  :)

Offline jberlin

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Re: Recently diagnosed - Advice Please
« Reply #7 on: May 29, 2013, 11:30:07 pm »
There is no proof that anything other than avoiding alcohol and other toxins, including lots of fatty foods, make much difference, but I like this site: 
http://www.liverguru.com/healthy-liver-healthy-foods.html    and certainly none of those recommends can do anything other than be good for you! 

Milk thistle is a supplement to take, with the real benefits in question, but I did for years while I waited for treatment.
http://www.healthguidance.org/entry/15623/1/Milk-Thistle-Benefits-and-Side-Effects.html

The best news this week is the prediction that geno 2 would have new treatment options within a year:
http://hepatitiscnewdrugs.blogspot.com/2013/05/watch-dr-andrew-muir-discuss-latest.html

Stay healthy and keep us informed....

Offline Me123

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Re: Recently diagnosed - Advice Please
« Reply #8 on: May 30, 2013, 08:59:41 am »
Thank you, Jberlin!! You're tons of help!!

I will certainly keep you all updated in what happens over these next few months.

-Lennie

 


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