Anybody else on tx #2 for geno 1? you guys were right!

Hey gang, just to let you know, i went to see my doc yesterday and you guys were right- i will have to start over with tx for a year since i am geno 1. wah. the good news is that they put me back on the liver foundation which has a waiting list of 80 people. my doc is making me take the 1000 riba, as you all also commented on.
she says we will be much more aggressive with sides theis time so i don't have to lower my dose. interestingly enough, i am on per-intron this time not pegasys and i don't seem to have quite as much of a reaction. i will be taking 150 mcg. so here;s to you all, thanks! i was prepared for the news thatnks to this forum. i will be staying around, if you don't mind, for moral support. so far so good.....
anybody else on tx 2 for geno 1?

[jmjm530]

Yes, you need at least a year to re-treat being a geno 1. Peg Intron is a good choice. Regarding ribavirin, the dose is dependent on your weight. If you're over around 160 pounds, you probably want 1200 mg/day.

Given that you're a stage 0 who has decided to treat again -- my only suggestion is to ask your doctor for a sensitive viral load test at both week 4 and week 12. Heptimax is good at this junction as it goes from 5 IU/ml into the millions.

This will give you an idea how the virus is responding to the drugs. If you stil have detectible virus by TMA (<5 IU/ml) at week 12, I'd give very serious consideration to stopping treatment and waiting for the newer drugs in the pipeline. These drugs are very strong and IMO in your case not worth the exposure unless you're showing a good viral response.

Good luck!

-- Jim

[jmjm530]

Just to clarify "these drugs" in the last sentence of the above post refer to Peg Intron and Ribavirin.

[mikesimon]

I posted this link previously but you may not have seen it. It regards a study of genotype 1s and viral kinetics during TX. The study is comprised of a small cohort but it concludes that a 2 week PCR is the best time to predict SVR for type 1s. I noticed that Jim recommended test times and I thought that if you could get your doctor to see this article he might think it prudent to test at 2 weeks. If I were treating I certainly would.

From the article:

"When the main objective of the treatment is viral eradication, the study of viral kinetics during the first twelve weeks of Peg-IFN alpha-2a plus ribavirin treatment showed that week 2 tend to be the best time point for predicting sustained virological response. The early identification of patients with no SVR may lead for proposing an interruption of therapy for avoiding side effects and additional costs, or an early change of therapy.[24] This observation, after being validated on a larger cohort of genotype 1 patients, should have an impact in clinical routine in order to optimise antiviral therapy[25]."

http://www.medscape.com/viewarticle/528266_1

Medscape requires registration but it's free and easy.
Mike

[mikesimon]

In case you can't get to the article the drop in VL that is predictive of a SVR is more than 1.39 log at the end of week 2.
Mike

[jmjm530]

Mike,

I think the two week is an excellent idea but in addition I'd still get the 4 and 12, since that's where most of the data/studies lie. In the end it depends what type of SVR odds Jerialice is comfortable with, given the stage 0 status. I just picked being non-detectible at week 12 as one reasonable benchmark given the situation. Personally, I'd probably be more cautious and would stop treatment if any virus remained at week 4. Forgot how that compares with the 2 week PCR but maybe the both of them together could give some decent indications.

-- Jim

[susan400]

Me, I'm on treatment #8.  I'm a geno 1A/1B.  Treating this round with daily Infergen 15mcg, 8 Riba's and Procrit.

Susan

[roaming]

My hubby just got his 1st blood results(2 wk.) His hgb went from 15.4 to 12.4. So that probably explains his spinning and tiredness. The week before last wasn't quite so bad. But this last shot. (5) He felt bad from the get go. (thur. night) More fatique and some shortness of breath. He is on a cpap and he woke up last night feeling like the machine was not keeping up with him. And today was feeling some short windedness. I figure this is probably another drop. That does seem to be how it happens right? I feel terrible for him but he really doesn't have a choice because of his stage. But in a sense, this could be a good thing because it indicates that the riba is in his blood. He is on 1400mg. Big guy. Love him. I am concerned of course. He is a 1a w/4,500,000 to start.

[roaming]

Reading what you said about the 2 week test would be great to save from doing useless meds but I don't understand. I have read here people saying that even if you don't svr (which is the goal) you may backup some stages of damage. Is my misunderstanding in using both meds. My husband is a stage 3, grade 3. Of course  we felt there was no choice but to treat. I, of course, wish for svr but from reading here thought that if that is not possible, at least he might reduce damage by a stage or 2. Is this unrealistic?

[jmjm530]

Even though hemoglobin (hgb) 12.4 is not a low absolute number, a three point drop in two weeks -- especially with men -- can account for your husbands tiredness and shortness of breath. Speak to your doctor ASAP about the rescue drug Procrit. Without it, things might start getting worse. Procrit will increase your husband's hgb but it takes 2-4 weeks to start fully working. If his hgb keeps falling, the alternate is reducing the ribavirin, but you want to stay away from that if possible because reduced ribavirin may also reduce his chances for successful treatment.

I won't speak for Mike regarding the two-week test, but my impression was that both Mike and myself were giving advice to a stage 0 who has different options than your husband who is a stage 3.

Still, the week 4 test might be useful to alert the treating doc how well your husband is responding to the meds.

-- Jim

[roaming]

the dr will not give hubby a 4 prc (?)wk because he does not want give the ins. comp any reason to question tx if it is not in their guide lines. It sounds like he wants to wait the longest to give the best chance of the best drop so the ins. comp. can not question the treatment. Otherwise, if you test early and don't get the immediate drop they start questioning treatment.

[jerialice]

thanks for the good words and moral suport. sorry my typing was so lousy this morn, i had the friday night "hangover" man, i took a 4 hour nap today! felt great.
since i am on a "foundation" i am not sure if she'll test me at 4 weeks. she has worked with 1000's of hep c patients and always tests geno 1's at week 12. i expect to be und by week 12.

do you think that will be a good indictor of svr? if und at week 12, how much longer has anyone gone??

i will ask her when i go back next time (month check up) to see if she wants to test then. i sort have the feeling that because of budget, i may have to wait until week 12. so far i feel pretty ok. i am going to be taking peg intron at a higher dose than the pegasys, but she says it's wieght based. i am surprised at the difference in how
i feel on the intron. it seems to agree with me more (if such a thing is possible) ai m hoping that this time around the sx will not be so awful. i really got hit hard after about week 12 last time and never quite came back.... the insert says that sx will normally happen early on- so maybe this time i can be "normal"
you guys are great and even tho i am so blessed to be fairly healthy, i still want to be CLEAR! cause who knows what could happen otherwise?

take care all and we'll keep in touch. you are all so brave....

[can-do-man]

Hello to you, welcome to the funnyfarm, im also so a geno1 as is many others here. Yes a lot do go UD at week 12 but don't be discouraged if you don't. If not UD we hope for a 2 log drop and then clear by week 24. Hope to see you here often, and if you want to know who the crazy ones are just ask me. i keep a list of them.:)

[dyce]

Ha guy, I'm wonderin if ya got me scratched off that list, ya know , since I've proven I'm sane. Yesterday those people took back the prescription straight jacket!! Thats gotta mean sumthin. Wait a minute ,there's a rabbit at the door.

Dyce

[jmjm530]

Very happy your having less sides this time with Peg Intron.

As you may know from my previous posts, I have a different point of view regarding your early test results. If you're unable to get a 4-week test then...

Given the fact that you were relatively healthy pre-treatment and have no liver damage (stage 0) and that you have previously relapsed and therefore already treated for 48 weeks -- I would be looking to be undetectible at week 12 with the most sensitive test available.

If you're not undectible at week 12, that means your chances of clearing the virus are significantly lower, and you will need to extend treatment time beyond 48 weeks to have a decent chance of being cured.

So if you still have virus at week 12 --the question you would want to ask yourself -- is it worth exposing yourself to these drugs for all this time given the fact you're a stage 0?

It's a very personal decision with pros and cons on both sides, but personally I'd probably would stop and wait for better drugs at that junction.

-- Jim

[mikesimon]

Yes, I think it is reasonable to hope for some reversal of liver damage by treating. I hope your husband achieves SVR and improves his liver architecture but if not SVR it is indeed possible that his liver will improve. Mike

[dyce]

Cando's gotta list, he's checkin it twice, he'll let ya know who'se nutty or right,la la la la , oh la la la la ! Welcome my friend !

Dyce

[jerialice]

hi gang! yeah last time i was clear at wek 24. this time i hope to be clear week 12.
and i will print out the data about early testing as a predicator and take to my doc.
she is pretty proactive and specializes in hep c only. thanks for all the links etc.

and susan, good grief girl, you are determined!!! how are you doing this time around? here's a special prayer for you- get well soon.

i am hoping the 12 week will be clear- does it seem 48 weeks will work with that as an indicator?

funny farm is right- i have laughed so hard at some of you guys. a sense of humor is the only way to keep sane in this condition!!!! i never thought iwould but i have joined the prozac generation, it's the only way to fly as most of my sides were mental. anybody else have any panic attacks etc?
yee haw-

[NYgirl]

The general rule of thumb is 36 weeks AFTER Undetectible so with 12 you would be right on target!

I wasn't clear until somewhere between 12 and 24 so...I don't know exactly how many he is going to have me do yet. I haven't worried since I'm only at 30 or so now.

You know upping the Riba can help hit the mark you are looking for this time. Maybe its just the little variation you needed! :)  As long as your attitude stays so great and you are going to fight like crazy I think THAT helps more than anything.  

Make sure that you keep your body really hydrated since you are taking more Riba.  I take either 1,000 or 1,200 a day and I weigh 117 now so it's a LOT for my body to handle and I had the rash really, really bad.  Now I know if I really moisturize all of the time with Gold Bond or something good like that it prevents the dayum bumps from coming. I am so scared I can't imagine what I will look like this summer since we can't go in the sun - I'm thinking...spray on tan will have to help!

Best of luck to you.

[can-do-man]

Nice try on the sane bit. Ain't gonna happen. Not a chance. you are what you is, you can roll the dyce all you want.

[dyce]

Rats, I figured you were't fooled easy! Back to walkin in the riba circles .

Dyce in space

[jerialice]

hi there! well i am 110 and taking 1000, hope that will do the trick. i couldn't handle it last time so was 800, but this time i am mad!!!! and not riba rage, just plain mad. i drink so much water almost a gallon/day plus fresh juice and eat as much as i can. my doc's gonna get me on pcrit asap, so that should help.somtimes i feel like i am on speed, but my bod is retarded!!! bizarre. how are you doing? did you find sx went down any?

[jerialice]

ok i want the list of insane people....

[jerialice]

oh and about the gold bond, i am using clinique body butter.it's a bit pricey, but since i need a small bit of consolation that is my one splurge. it works real good. what are the bumps? i got wierd little pimple things las time..... they hurt!
i am self emloyed (not) so on a serious budget especially since i spent my savings last go around. God will provide that is the one thing i leaned and i'll be ok.

[NYgirl]

I know it sort of seems like bad news but try and remember the good news - you know about the disease and are fighting it the right way and can have good success.

There are LOTS Of Geno 1s in here (I am both 1A and 1B) and I cleared at week 24 (for me that was good with two strains) so it IS possible.

Hang in there and just do what you are told to do but when you have questions...ASK...it can make all the difference.

Best of luck!

[timedog]

Jim,

I just have to ask what your background is. Are you a Dr.? Are you invlovled with hep c research? You seem to have very strong point of views and was interested in how you formed them.

[jmjm530]

I'm a writer -- mostly marketing but some editorial and satire. No formal or intimate medical knowledge other than dating a doctor here and there :)

I tend to immerse myself in anything that interests me -- be it an interest, sport, or in this case fighting hep c. Basically, for the past year on tx, I've been reading pretty much everything I could put my hands on -- including many full-text articles. Also, spoke or corresponded with a number of hepatologists on different issues.  

At some point -- around month 3 I believe -- I felt comfortable enough to call many of the shots in my own treatment and have since worked with my medical team in a partnership relationship.

As far as my strong opinions, I think most of them are fairly mainstream, at least with some of the more agressive hepatologists. The one exception are some of my views on ribavirin which come from studies outside the United States, i.e. Sweeden, but I try and make that clear.

I really don't think hep c treatment as it exists today is rocket science, or even close. From what I've read, there are a lot of folks here who know more about treatment protocols than a number of doctors who treat hep c. That is unfortunate in the sense that if we can put in the homework, so should someone takes in the conficence and makes a living treating sick people. But don't get me started here :)

-- Jim

[timedog]

Jim,

thanks for getting back to me. I think it is important to know what are opitions are and not to put our full trust in anyone person. I do believe there are true experts in the medical field that bring to our treatment a lifetime of study and shall we say a more global perpective.

I guess for me I look to this site for others going through treatment what their issues have been and how they have delt with them not unlike an AA meeting. As I was saying to my Dr. today the internet is both a blessing and a curse. Should I have a problem I would know where to look (here) but I also expect to have problems because of what i read here.

just another point of view

[can-do-man]

other than dating a doctor here and there :)... Plus didn't you stay at a holiday inn express once?

[jerialice]

you might start a new thread! you'll get more responses that a way.
if i know these guys they'll want a lot more info, too!
good luck girl, you'll be ok.....

[Pdilly]

Has anyone here had Hepc for 25 years about.  What are the chances when there are really not to many signs yet?  Just was tested positive and have 2 weeks before the appointment.  Seems like forever.  I am wf over 50.  Some sites make it sound not so good for me.  I am trying to stay more positive.

[jerialice]

you might start a new thread! you'll get more responses that a way.
if i know these uys they'll want a lot more info, too!
good luck girl, you'll be ok.....

[jmjm530]

CDM: Plus didn't you stay at a holiday inn express once?
=========================================================
Actually, yes. But she was only in medical school at the time.

[jmjm530]

Many people treat successfully at your age and older. Being female is actually a plus in terms of being cured.

As Jerialice suggests, more information would be helpful such as genotype, what stage liver damage do you have, viral load, etc. If you don't know the answers, ask your doctor and by all means keep copies of all your bloodwork.

The more educated you are going into your docto's appointment, the more you will get out of it.

-- Jim