What is current treatment for Geno1's

[Butterfly59]

I am a nurse that got diagnosed in 99 through a blood donation. I went to Emory , got as much info as I could. Biopsy ect. 6 years ago I did the interferon and Rib Rx, it only increased my viral load which was what they called extremly high, I don't remember the exact numbers, but they pulled me off Rx .

Now I have gone for regular yearly physical because I had been feeling so fatiqued,  so much more tan usual as you guys know, my liver enzymes wher both in the 351 area, so now I am getting new viral loads , ultra sounds, I go in 2 weeks to my liver dr. Then I am sure they will do anther biopsy, but I am sure he will ask what my feelings are on doing treatment again, I hear there is a new added in with what I had done in the past, I don't ever touch a drop of alcohol, I do not smoke. But I remember how bad I felt and I just work a few art time hours and that kills me, I am divorced ,when I got the letter about my hep c, my husband got tested he did not have it, and eventually we got divorced. So money wise I can ardly make it now.  
Can anyone let me knw about trails or new drugs? Should I try or not, my dr before did not seem to encouraging about trying Rx a few years ago, so?
Thanks for any reply

[alagirl]

Ummm.... well.  lol.  You get what you are given.  I doubt anyone chooses to be a geno 1, that's for sure.  I think it's largely regional.  Particular genotypes tend to cluster a bit in particular geographic locations.  Therefore, if you live in an area where more people are infected with geno 1, you are more likely to be exposed to (and therefore infected with) that genotype.

[faith228]

Geno1 how does one get geno1 ?

[Advocate1955]

I would definitely encourage you to stay the path of learning more information via bloodwork and liver biopsy (and whatever other diagnostics your doctor recommends).  At this point, when and how to treat depends a great deal on the stage of your liver damage.  Since you are a null responder to SOC (Interferon and Ribavirin), you and your doctor may decided that your odds are not good on triple therapies (Telaprevir and Victrellis).  While the new drugs may help you get your viral count down or to UND, when those new drugs are stopped, your body would have to continue to respond to Interferon and Ribavirin in order to get rid of the remaining virus in order for you to get to SVR (Sustained Viral Response).  Since you didn't respond at all before, there is probably a strong likelihood that your virus will bounce back after the new drugs are stopped.  Depending upon the stage of your liver damage, you and your doctor might decided it would be best to find a good clinical trial or wait for the new Interferon free treatments.  My husband's doctor feels that they will be available in about 2 years, not 6, but no one really knows until they are actually approved.  Hopefully you will have time to wait.
Keep us posted and let us know what you decide.
Advocate1955

[meandog1]

im close to ur age and was exposed while serving as a special forces medic during desert storm. treatment stinks, side effects are terrible, cost is stupid even with insurance. you still gotta try, its better than doing nothing. fyi i worked 50 to 60 hrs a wk on meds. i thought, god please take me more than a few times. i think making yourself do it helps get u through it. you gotta be like the lady with the cold on tv and give it your war face. lmao

[willbb]

Hello again.  If in fact you were a "null responder" your previous treatment the chances your doctor mentioned would be correct from trial results.

so does he know the stage from ultrasound or blood work?
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U/S is not  good at determining amount of fibrosis and neither are the basic LFT's (Alt ,Ast,ggt etc),.A biopsy is still the gold standard for this ,however the blood test "fibrosure" may assist in diagnosis ,if you had it.

If your  'AFP '(tumor marker was elevated possibly this is why they ordered the CT..however slight elevation of this marker is quite common with HCV and the odds of having HCC are very low ,especially if not chirrotic.

The blood work you speak of to see how you will react to INF. is probably the IL28B gene test and this is good information to have for re-treatment purposes.


but we kinda thought the new non interferon Rx that is in 2nd clinical trails might be the best option , but will be 6 years or so,
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This surely may be an option and the general wisdom is it may not be quite that long ,however nobody knows for sure .

I do believe another biopsy would be valuable and if you are still St2 then waiting until there is something better certainly is an option ,however if there is currently more advanced damage then you may want to discuss treating with one of the current protease Inhibitors(after all your tests are done) as 45 % is better than doing nothing or as we suggested above entering a trial may be an option .

Please let us know how you are doing and welcome to the group..
Will

[Butterfly59]

Yes, sorry I am geno1, 52, I went to the Doc today, he told me the same you guys did about the 2 new drugs could be used with original Rx, but still only 45% chance of working, but a this was what he suggested.
1) I was Stage 1 on biopsy on 2003, now he says I am stage 2, but we have not done  new biopsy, so does he know the stage from ultrasound or blood work?
2) a target blood test for tumors was elevated so I go for CT with and without contrast to check further
3) more blood work to see how I will react to interferon now.
4) come back in 6 months unless needed earlier give it some thought if I wanted to presue it he would treat me, but we kinda thought the new non interferon Rx that is in 2nd clinical trails might be the best option , but will be 6 years or so,
I kind of think I need to see a liver specialist, he is digestive Doc, so maybe another opinion would be good, he did not order a biopsy,
Thanks so much for information and support ,

[willbb]

oh..typing slow ..cando  covered it

[willbb]

Hi there...Yes it sounds like another biopsy would be helpful to ascertain where you are at in terms of  possibly giving treatment another go around.
Bocep above correctly mentioned the 2 drugs now on the market ,however either one of these is still used with the combo Peg/Riba.and have differing degrees of success depending on your previous treatment response.(not so great with prev. nulls)

You didn't mention your geno type ,as these new drugs are only used for type 1 and if type 2 or 3 just the combo is still in effect.

The therapy is very expensive,as you may know and if your are not adequately covered by insurance then yes entering a trial is an option.

Failing getting accepted for a trial  or there not being one avail. all the drug manufactures have assistance programs which are predicted on certain conditions.(Iwill list the numbers if you ask for them)

I have linked below  the trials..in the search area try entering the area of the largest center you live near and possibly something will be avail
Best to you.
Will

http://clinicaltrials.gov/

[can-do-man]

From what you said you was a null responder to SOC, if thats the case and depending on your liver damage you might want to ask about the all oral treatment that is now in trials. While Victrelis and Incivek is good new drugs they are not so great with non-responders. Best to you.

[BoceprevirGal]

Well, last May the FDA approved these two new drugs, called Protease Inhibitors, by the names of Teleprivir and Boceprevir. They are added to the Inf shot and Riba pills.
    The thing is, I think they may be using a newer Interferon now, mine is called Pegasys, so maybe this kind of Interferon wont make you feel as sick.
   My enzymes also became very elevated last year, for some reason, maybe my age, I am approaching 50 yrs, or the fact that I went into menopause. My enzymes were 400/500, where as they used to only twice as high as the normal range, like, 60/80.
   These Protease Inhibitors do work, on people who failed treatment, that was  the one you described (standard)~ But the sx are pretty serious, for some people, and I dont feel that great, I'm on week 11. The "triple-treatment" causes anemia in many people, which makes it hard to climb stairs, etc.
   The Teleprivir can cause a rash and anal problems (burning or worse) as a side effect, and the Boceprevir causes my mouth to taste bad, but I can still work part time~  good luck