4 week vl results

Hi, my 4 week results are in. I started at 995,000 iu and am down to 21,287. I was shooting for a 2 log drop didn't quite hit that but I was pretty close. Not like there's anything I can do control it anywayright? I'm happy with the results since I was a non responder the last time. The np said that it's encouraging preliminary results. She said as long as I keep a 2log drop by 12 weeks we will keep going. I'm pretty happy right now and I thought I'd share.
P.s. I'm doing infergen and I'm a 1a

[nygirl7]

Well you are a responder now great news! Hopefully you will be UND at week 12 and it will not matter about any long drops at all :)

I did not clear by week 12 (but I did by week 24) and I had to extend to week 72. But I was doing regular old interferon and not infergen. I have to say you sound very good for someone on infergen, I am glad that you are tolerating it well!

We had another member in here who was a previous tx failure and she did 72 weeks of infergen and is SVR today.  It wasn't easy but she hung with it somehow (I never understand how she had it so hard) but now ........ she's happy and healthy and has a great life.  You can't beat that with a stick!

Congrats on the response.

[bowyer2002]

Congrats on the good news!

[portann]

Congrats on hanging in there with infergen and I look forward to you posting your twelve week UND!


Tough stuff, that infergen, so give yourself a great, big hug and know that you can beat this, one step at a time.

Best to you,

Susan

[spectda]

Hi-
a lot of work on that infergen I hear, you must be tough! How much riba are you taking compared to weight, and what is your hgb level at. If you are not getting a decent drop in hgb, I would consider talking to your doc about increasing your riba to cover all the angles.
Very best of luck to you,
Dave

[pennylanem]

Thanks for all the good wishes. Surprisingly it feels easier than the weekly peg-intron did 8 years ago (so far).
Dave, I am 145 and taking 1000 mg. My HGB started at 14 and it's now 12.7, so it's still in range. Is this good enough you think? What range should I be looking for? I started out at 800 mg because apparently I was on the border of the weight limit. I asked for an dose increase and got 200 mg more.

[pcds]

When I started tx I was given 1000 riba at 125 lbs.  I was still detec at 12 wks so I stopped treatment.  My doc gave me a 5% chance at SVR if I continued.  Not good odds.  Waiting for the new stuff.  These meds can be harsh on your entire body system.  The less it is subjected to it the better, and better odds are needed for geno 1.  You really should be undect at week 12.  You are doing well with your viral load drop.  Good luck!
Judy

[billm57]

undetectable at 12 weeks is not a requirement - and not being undetectable by then is NOT a reason to stop treatment - the guidelines are a mininum 2 log (100 fold ) drop at week 12 - if you achieve this you are considered a slow responder and 72 weeks of treatment is recommended - if you dont achieve the 2log drop by then - treatment is usually stopped

[pcds]

Current most doctors who understand hepc will stop tx if still detec at 12 wks. Why risk not getting SVR and doing 72 weeks of harm to your body with poor odds of a cure?  It's not like there aren't better options on the horizon.  

[billm57]

thats not according to the guidelines and protocol of treatment - your dr is misinformed - its possible for a slow responder to clear even with only 48 weeks of tx - and the odds go up significantly with 72 weeks - there may be better options ahead for first timers but not non responders - its another year of tx -  so thats 2 years total and the new therapies still use peg / riba  - with 72 weeks its only 18 months - you kinda shot down your own arguement

[pcds]

you may clear, but are you going to relapse after 48 or 72 weeks?  That's the problem.  In my opinion this treatment is not worth the high probability of relapse with so much damage to the body.  If odds were 80-90% success with extended tx, then there is a decision.  If no other treatment was available, which has been the case for many, many years, then maybe the risk is worth taking.  No need to take that risk anymore.  That's the good news.   I'm not arguing only stating facts.

[billm57]

its a personal choice - and neither you or i know the outcome - your facts dont agree with professional medical opinion - there is no high probability of relapse after svr - its only a few % that do -and there is no 80-90% success with anything involving type 1 - theres risks with everything ok - nuff said

[RCM829]

Congrats...infergen seems to be working for you! I'm real happy for you.

pcds:
"My doc gave me a 5% chance of SVR" if still detectable at 12 weeks.
I've never heard this one before - do you or your doctor have any pertinent data to support this? Thanks.

[spectda]

Hopefully someone with more experience with riba dosage will comment. At this point you are far from anemic and perhaps you should take more. Sometimes people start high and when they start to show a good response based on hgb drop they adjust the medication if necessary. To me this makes a lot more sense then assuming everyone of the same weight absorbs riba the same. How long have you been at the 1000 mg level?

- Dave

[spectda]

pennylanem, give it hell. You are using the stronger inf. Make sure your riba dose is high enough. If you haven't already decided to treat for 72 weeks, you probably should. I really hope it happens for you this time. Since you are stage 3 it makes sense to try, if it does not work, don't get discouraged. The new drugs will be out in about a year. When was your biopsy that determined stage 3?

Very best to you, beat this dam thing!
Dave

[portann]

Penny has only had her four week PCR so far.

[spectda]

Don't previous non responders generally treat longer or do they base tx on current response?
Penny I hope I didn't sound discouraging, just making suggestions that seem Like they would give you the best chance of success. Did you treat with peginton only eight years ago or peg and riba. Isn't that about the time riba started being used, if you didn't use riba the ballgame is now very different. Also your body condition and chemistry might be more conducive to svr nogoid luck, I am no expert only offering suggestions. - Dave.

[spectda]

Nogoid luck meant good luck.

[Trish77]

"thats not according to the guidelines and protocol of treatment - your dr is misinformed - its possible for a slow responder to clear even with only 48 weeks of tx - and the odds go up significantly with 72 weeks - there may be better options ahead for first timers but not non responders - its another year of tx -  so thats 2 years total and the new therapies still use peg / riba  - with 72 weeks its only 18 months - you kinda shot down your own arguement"

There are some solid hepatologists who disagree with your position on this.  While it's possible for a slow responder to clear with 48 weeks of treatment, the odds drop considerably and it's more likely to SVR by extending to 72 weeks of treatment if you don't clear at 12 weeks completely.  So a number of docs are currently saying to their patients that it's not worth extending the 72 weeks when the PI's are not far off and when the situation is not critical and requiring immediate attention.   So for many people, they're starting out with SOC - inf/riba - and if they get good results such as an RVR or the EVR with a 12 week UND for geno 1, then worth continuing to do the 48 and if not, the decision is often made to stop then and wait on the PI's.

I disagree with you that these new drugs have benefit only to first-timers - I don't know where you got that.  There are many non-responders and relapsers waiting for the extra firepower the PI's will add  by including them with SOC - inf/riba.   We had a guy on here who had treated 7-8 times before and finally SVR'd by being in a Telaprevir trial.  He's not the only one.  These new PI"s are promising to everyone.

[stalion]

hi i am a first treater, i am in my 17 week of tx, i went from 1,156,203u/ml to 2,304u/ml in my 12th week, they also told me on this site i probably only had a 5% chance, they might be right, they might be wrong. my doctor is waiting for the 24week vl. i hope then i will be undetectable. all we have right now is hope! my wish for you and myself we are in the 5%. good luck stalion

[pennylanem]

Dave, I was planning on doing 72 weeks. Those were my thoughts all along. The NP thinks I should do 44 to 48 weeks after I go UND. I was thinking maybe longer but we'll see.
As for the riba, I had 800 mg for the first 2 weeks, had good blood counts then was increased to 1000mg for the last 3 weeks. The NP gave me a bottle of 200mg riba. She hasn't switched the prescription. I was thinking of once she put in the order for the 1000mgs to increase it myself by 200 mg. I may just ask her to increase it to 1200.
The stage 3 biopsy was from May of this year, so very recent. I wanted to treat now because I seem to be progressing faster lately. I went from a 2 to a 3 in 4.5 years. I didn't want to risk waiting even one year and progressing to 4. I'm 35 and have to be here for my children!

[spectda]

You have a great attitude, You seem like you are doing everything you can. lets hope for some great results.

By the way, will your doc give you procrit and neupogen if necessary rather then dose reduction?

keep it the good work,
be well,
Dave

[billm57]

and there are some leading researchers who do agree - theres no guarantees - for a dr to take someone off treatment while the patient is responding to guidelines is negligence - they have no crystal ball - i know type 1 patients with double digit svr that cleared with 48 weeks - if the patient who is responding wants to give up - thats their decision - not a drs --- again you misinterpreted what i posted - i did not say the new drugs benefit onlt first timers - but they have the greatest potential for benefit like higher svr rates and shorter tx times - nonresponders will still have to do a year while first timers might only do 3 months

[pennylanem]

Stalion, Hope you have great results!

Dave, I talked to the NP in detail about what she will and will not do regarding rescue meds. She was really impressed I was so informed and I was asking such "advanced" questions. I didn't give away my secret ;-). She said they are pretty aggressive and will let PLTs drop to about 30 or so before stopping. That, severe depression or anything truly life threatening will prompt them to pull me off treatment. I am determined to do anything humanly possible to get rid of this, I'm glad my dr is on board with this...

pcds, I am already a 3 so I may give it a shot and continue even if I don't clear completely by week 12. I don't think I have the luxury of time to wait for next year without doing anything. I seem to be progressing faster after 25 years of no real damage. In the last 10 years I went from a 1 to a 3.