Genotype 3 Treatment

[Marcia2202]

We now know that geno 3 should not be treated like geno 2. Someone (sorry, I cannot remember who) on this forum gave me this valuable information, according to latest studies of:

Columbia University, MD, special research for G3

NOT   UND at       W 4 48 weeks tx
High VL UND     at       W 4        36 weeks tx
Low VL UND at       W 4        24 weeks tx

If anyone has more information and experience treating genotype 3, I would be very thankful to hear about it.

Marcia

[CockSparrow]

I am a G3a non responder and that Tx formular seems about right to me.
The other thing to throw into the mix is Fibrosis.
Maybe treat longer if Stage is F3 or F4
but RVR seems to trump all the other negatives.

CS

[Marcia2202]

Thanks a lot for the input. I hope you will be able to treat again, with success. It is always so heart breaking to hear about non responders. And then there is the fear that one might be one.

Marcia

[CockSparrow]

You will know with a week 4 PCR test whether you are heading down the difficult to treat parth or not. Just make sure you have a 4 week PCR test.
UND @ week 4 = really good SVR odds.

All the Best
CS

[FlGuy]

The 'if not und by 4, do 72' was the simple rule the liverhead gave me.  That went along with all the necessary time planning around pcr's and the prescriptions pre-dated to get them done.  But, with a prior failed tx and early cirrhosis and age (about 56) the formula was adjusted to the 48/72.  But, the criteria you mentioned seems to make sense for a 1st time tx'er who has not demonstrated 'difficult to treat' traits. Having done a prior 24 (G3) week relapsing tx, motivation was high to get to und as soon as possible.  Which is why we were aggressive early in tx (pre-dose riba and double Peg for 4 weeks).  One thing I've wondered about though - whether high or low VL, is if there is a difference assuming und is reached by week 4.  The Columbia folks seem to think yes.

[nygirl7]

I just wanted to say how great I think it is to see such important discussion going on. WE'VE all known that the cookie cutter approach 1 = 48 2 = 24 **** doesn't work but it's nice to see that FINALLY the liverheads are getting the facts too!

I just don't understand why it seems such a hardship for them to tailor treatment to a persons specific numbers.  I would advise any newbie who is in here to really learn these facts and how iMPORTANT being UND at week 4 really really is.  A lot of doctors still don't even know it.

Dr J was the first one I know of who was really onto this bandwagon (but that makes sense).  If anybody needs a second opinion in order to get their doctor to work with extensions.........even if you have to pay out of network to get one of the good guys - DO IT.  I paid $600 (and I'm a broke single mom type) cash and it was worth EVERY SINGLE PENNY and ounce of mac and cheese for dinner that I had to eat ;)  Anything that leads you to achieve SVR is.

Don't worry about having to do "more time" - get the SVR the first time if you can.

[comeagain]

As you maybe remember Im on a study (danish) for relapsers geno 2, 3 and are given weight based riba and pegasus which always is 180mcg.

My first tx i started in september 2006 they didn`t check for baseline vl and first pcr wasn´t made until week 12, and 95 or maybee it was 98% of all geno 2and 3 are UND at week 12.
I was also on the old protocol 800ml riba for everyone and not weightbased peginteferon.

I´m gonna try to get to what I wanna say, I have a  friend geno 3 he started to tx 13weeks ago and is getting a new protocol weightbased riba but not weightbased peginterferon, hes got a 4w pcr.

He had a low baselin vl result 76000iuml (yea they gave him that aswell)
and they want him to extend to 48weeks since he had a borderland vl result week 5( he was sick w4 so he made the test one week later)

Finally this is what I´m wanna say to you!!
I checked up the prices for peginteferon verces pegasys and the price is very much the same due to amount of medecin, but if you on peginteferon and are thin, or like my friend dosen´t get the proper amount there is money to save for the hospital.

I dont dare to recomend what you gonna chose peg or pegasus,
the sx on pegasus is much less for me then on peg.

But I felt so very good post tx how knows how I´m gonna feel after this one?


your friend ca

ps my friend is treating in gothenburg but i think his on the new protocol for 3s probebly pretty much the same world wide

[Marcia2202]

Thanks so much for the input!

Marcia

[Marcia2202]

Thanks!

Yeah the prices, I checked them on sundhed.dk, they have all the meds, side effects and prices noted there. It's quite cool, so easy to access info. I hope they will not try to make me go for a less, because of the costs. I just found out from my GP, that they give you the meds at the hospital, don't even have to involve you insurance or anything. They just plain give the stuff to you. I love it!

According to my weight, I definitely do NOT want weight based. I weigh 56 kg.

It would definitely be better for me to do Pegasys, as I would get the 180mcg. I have already made up my mind ages ago, to push the doctors to put me on Pegasys.

Ribavirin I would get 800 mg.  I don't think I can get them to give me more Ribavirin than 800mg. Shouldn't that be enough for me?

My VL is 580.000, according to that and the Columbia University Study, I should be doing 36 weeks, provided I'm UND at 4weeks.

To sum it up:

At least 36 weeks tx, with 180mcg Pegasys and 800 mg Ribavirin.

Please correct me, if it is incorrect.

your friend, Marcia

[Marcia2202]

I forgot to mention, that I haven't had a biopsy, yet. I can't wait to get it done, but it will probably still take a while. I have my first appointment at the hospital on June13th. They will do all the blood tests again and some additional ones I haven't had yet, check my heart, etc. They are keeping me the whole day. And I will finally see the hepatologist. They are not doing the biopsy the same day, though.

I want to be as much informed as I possibly can and I am so glad that all you great people are here, you are such a big help.

Thank you all, Marcia

[meki]

OK - maybe I'm a throwback to the dinosaur era... Or just a medical freak.

I didn't go UND until the middle of my TX.

I'm a 3a.

I only did 24 weeks last shot was end of February - last Riba start of March of 2007. So I'm UND/SVR 14 months so far.

At 4 weeks, my PCR showed viral load had barely moved down and was still detectable.

But at 12 weeks it was UND.

So if what you guys are saying is true --- then I'm one lucky duck.

LOL!

Quack the heck on!

LOL!

No seriously - I'm in total agreement - the more I've learned - the more I've realized that most doctors don't know ANYTHING about this disease, the treatment --- and the side effects from both the disease and the TX.

I also think that if some folks had been allowed to go 48 to 72 instead of 24 alone - that there would be a lot more UND/SVR going on.

And 1a group if not UND at 72 - try for 24 more weeks. I mean WHY the heck not --- IF THEY ARE RESPONDING?

If not responding - then well - I don't know what to say --- but WHY take people OFF TX --- at 72 if they have shown some sort of response?

I think a lot of the issues have to deal with insurance, money and that's the bottom line for most of us.

I think that's sad.

Meki

[CockSparrow]

At 4 weeks, my PCR showed viral load had barely moved down and was still detectable.
But at 12 weeks it was UND.
So if what you guys are saying is true --- then I'm one lucky duck

Yes Meki you are one of the 40% who manage to SVR in spite of a poor early response.
G3s are like that. Turn it around and you tend to cure.

Its the turn it aroun bit thats hard.
CS

[gauf]

You got mail.

[Marcia2202]

So meki's tactics is not something one should count on, right. Meki, you really are one lucky duck. But your tx was hard, wasn't it. Wow, lots of sx. Bozo the scratching dog, etc. I love your stories, they make me crack up, but there was a lot of suffering. You just make it sound so funny.

Marcia

[FlGuy]

The range of dosing for riba is about 13-15 mg per kg of weight.  At 56kg, 800 mg riba puts you about in the middle.  If it were me, I'd be pretty firm if the doc attempted to prescribe less. And, if you have an adequate supply you might consider taking it for a week before you start the Peg. Even if the advantage is small, any edge you can possibly get might be helpful.

[Marcia2202]

Thank you...

I will ask the doctors what they thing about predosing with Riba. It's the hospital who supplies me with the medications, so there is not much I can do on my own. I hope they will be cooperative. Maybe I can convince them to take me as an experiment of the 'new studies'. Never know, they might bite on it, as it is a University hospital.

Marcia

[mar148]

Well I am genotype 3a, and did what was standard protocol of 800 riba and pegasus.  I have done 24 weeks and still clear 8 weeks off treatment. I was under 615 at week four but still detected by Qual. TMA, tests week 8 and subsequent have been clear.  I am waiting and hoping it worked.  Many indicate that relapses usually occur in the first 4-6 weeks and I hope so.  I will keep you posted.

[mar148]

Oh I failed to add I was high viral load (9 million) to start so I went down about 5 logs by week four.  Also, I do agree that your fibrosis level is a consideration in amount and time to treat type 3's.

[mar148]

Oh I failed to add I was high viral load (9 million) to start so I went down about 5 logs by week four.  Also, I do agree that your fibrosis level is a consideration in amount and time to treat type 3's.

[meki]

You know - there has been a discussion that I think warrants merit.

The below is just my opinion on what I've read and kind of put together in my head.

I think Genotype 3a hits harder, faster and does quicker damage - but is "wispy" compared to the hardcore Genotypes 1 and 2.

I think 1 is a hardy, strong strain that does not need to destroy everything in it's path - so does not take over the host in an effort to gain ground.

2 is hardy - but has flaws in it - it gets hold - but seems to be broken much easier than 1.

3 seems to wriggle in fast and hard - doing hardcore damage, seeking it's way in to the host but it seems to dissipate faster than the other 2.

Not so in those who have somehow managed to grab a variant of 3a that seems to have mutated a little bit --- to what I kind of call 3b (like CockSparrow's).

Now - maybe I'm way off --- but those are the kind of things I've been watching in the writing everyone has done.

I'm no biologist - I'm just putting together pieces of conversations... I may be right --- but probably not... Just observations I'm making --- OK?

Part of that observation is that it seems that 1a 1b 2a all seem to have long times living with the virus in their systems without much noticeable effects...

But 3a's they seem to get damage or symptoms faster than the other 2 genotypes. It seems (maybe only in my mind) that 3a's start feeling unwell - very quickly --- I was getting sick within 7 years of last known HCV clearance for me.

There are 1a's who have had HCV for 20 or 30 years.

In that amount of time - I would have been dead.

So --- whatcha think of my musings?

Meki

[meki]

"biologist"

Snicker --- egads... OK - I'm no scientist - doctor - anything that requires MEDICAL to it... LOL!

[mar148]

I have probably had hep c for 20 or 30 years, which is a guess, with stage 1 liver damage.  In all my research about type 3 I have heard that fatty liver can be common but no acceleration of fibrosis.  Type 3 can be easy to treat, but variables like fibrosis level...  can make it difficult. I don't think there are strict variables but with type 3 race, weight, fibrosis level and viral load can impact treatment strategy.  Again I think the 4 week viral load is important to doctors today.  I have grilled my doctors and some of the information stated her about rules to extend type 3 due to viral load.... is not accepted by qualified hep doctors at this point.  I do think the 4 week viral load test is very commonly used at this point.

[mar148]

I have probably had hep c for 20 or 30 years, which is a guess, with stage 1 liver damage.  In all my research about type 3 I have heard that fatty liver can be common but no acceleration of fibrosis.  Type 3 can be easy to treat, but variables like fibrosis level...  can make it difficult. I don't think there are strict variables but with type 3 race, weight, fibrosis level and viral load can impact treatment strategy.  Again I think the 4 week viral load is important to doctors today.  I have grilled my doctors and some of the information stated her about rules to extend type 3 due to viral load.... is not accepted by qualified hep doctors at this point.  I do think the 4 week viral load test is very commonly used at this point.

[Marcia2202]

Thanks for your input. Just wanted to ask, did the 800 mg Riba correspond to your weight, or was is more or less. I am asking it this way, as it might not be appropiate to ask straight out how much you weigh.

Marcia

[Marcia2202]

I agree that there is something fishy about geno 3. Unfortunately I do not know my subtype.

I have read that geno 3 is prone to having NASH, actually 71%. Not so nice. ;-(

I have been wondering why I have had such aversion to fats for so many years, and wonder if there is any correlation. I get really sick, if I have heated butter on food. Once I had it in a restaurant. They had put it on the rice. It made me so sick, I head cold sweat outbursts and was sick for a whole week.

Lets see about your theory that 3 does quicker damage, when I get my biopsy. I hope you are wrong about that one, as I might have had this since 26 years or so. According to that, my liver should be in a pretty bad state. But then again, I haven't touched any pot for 20yrs, alcohol and cigarettes for 10 years. And I have been vegetarian and partial health freak since year 2000. I hope all that counts towards damage control.

Since my daughter has it, I assume she got it since birth. I think there is a greater possibility she got it that way, than using one of my razors. I hardly ever cut myself, and always use them under the shower, so no blood left on them. We always had each our own razors, but it could be she might have used mine at some time. The chances of her having contracted it from a razor of mine that she used after I had cut myself and she also cut herself are much smaller than her having contracted it at birth.

What I'm getting at is, that according to that I must have at least had it for 18 1/2 years. I wish I had kept all the Rhogam vials. Maybe one would be able to check them. I really started having heavy symptoms only a few months ago. But looking back, menstruation problems started in 2004, my hormone levels are all fine, so pre-menopause is ruled out. So I don't know how all this it justifies your theory about feeling symptoms earlier than the other genos. But definitely I do have symptoms of fatigue, joint aches, messed up periods, muscle aches and brain fog. All this has gotten better, since I eliminated all toxins and dairy products from my diet and my skin.

Marcia