Aa
Aa
A
A
A
Close
100019 tn?1335919717

Extend TX - need YOUR thoughts

Hey guys, how's everyone.  Sorry I haven't been able to post much.  Work has been really busy and I'm training someone new.  I don't have internet at home so can't leave msgs from there.

I have an opportunity and need some of your advice and thoughts.  My liver doctor is being sent to IRAQ and will be gone for the next 4 months.

My tx is supposed to end on Sept 15, that will be 48 weeks.  I actually have enough refills on the TX meds and procrit to take me to 60 weeks.

The reason I've always been concerned about relapsing is that I'm overweight and do have NAFLD in addition to the HCV.

How much do you think my odds would increase if I finish out my meds at 60 weeks as opposed to stopping at the 48?  This would be my decision as my doctor wouldn't even know I was still on the meds.  MY GP has been great about following my progress and would be able to step in if any problems came up.
24 Responses
Sort by: Helpful Oldest Newest
Avatar universal
If I had to make a bet I'd bet that 48 weeks is going to be enough. But what do I know? Not much! But I can wish you the best. Good luck. Mike
Helpful - 0
Avatar universal
Its all good brother.

One last ant crack and I will let it die, Do you know how hard it was to give those little sob's a biobsy.

Ok its dead,maybe.
Helpful - 0
Avatar universal
What are the percentages of horrific!!! long term side effects?
Helpful - 0
Avatar universal
Sorry, but tell us again when you tested UND?
These meds are so brutal, dangerous.  Be sure you really need to go on taking them.
Helpful - 0
Avatar universal
Jakish: What are the percentages of horrific!!! long term side effects?
-------------
Hey, go play with your sick ants :)

----------------

Seriously, did you take some time and read through those links I posted earlier? I think you'd have to walk in other people's shoes to say whether something is "horrific" or not. Add up, divide, mutliply what people are saying and I think you'll come up with a significant per cent of people having lingering sides.

NY Girl lost her thyroid - is that "horrific"? Doesn't sound good to me. For now, my QOL sucks and can't do much of what I used to. Is that "horrific". Well, I don't like it as I sit her typing when I would like to be outside working out.

-- Jim
Helpful - 0
116701 tn?1210259164
Someone posted something on one of the treads about research and extended treatments. Jim will probably jump in he is the king of reference for us all. Personally if your counts are good and a doctor is watching over you if is probably acceptable. My eyes are set on 48 weeks win, lose or draw. That's it. Good luck on the decision. Dale
Helpful - 0
Avatar universal
new article related to fatty liver:

Steatosis in Chronic Hepatitis C: Relationship to the Virus and Host Risk Factors
Posted 07/25/2006

Carla AL Matos; Renata M Perez; Mauricio S Pacheco; Claudio G Figueiredo-Mendes; Edmundo Lopes-Neto; Evandro B Oliveira Jr; Valeria P Lanzoni; Antonio EB Silva; Maria LG Ferraz  


Abstract
Background: Steatosis occurs frequently in hepatitis C. However, the mechanisms leading to this lesion are still unknown, and the role of steatosis in the progression of the disease remains controversial. The aim of the present paper was to determine the prevalence of steatosis in hepatitis C and its association with hepatitis C virus (HCV) genotype, viral load and the presence of risk factors for steatosis, and to analyze the association between steatosis and the intensity of liver disease.
Methods: Patients infected with HCV who underwent liver biopsy were included. Patients coinfected with hepatitis B virus and/or human immunodeficiency virus and those previously treated for hepatitis C were excluded. The following risk factors for steatosis were investigated: obesity (body mass index [BMI] > 25 kg/m2), diabetes mellitus, hyperlipidemia, alcoholism, and use of potential steatosis-inducing drugs. Histological analysis evaluated the presence of steatosis, the degree of periportal activity and staging. Patients with and without steatosis were compared regarding demographic, epidemiological, laboratory and histological characteristics. Logistic regression analysis was applied to identify variables that were independently associated with the presence of steatosis.
Results: Ninety patients (55 men, 35 women) with a mean age of 45
Helpful - 0
Avatar universal
Thanks, I'll take better than Serf but certainly no King re reference as there are others much better organized in that respect. How about Knight Templar? They were pretty monastic and that about sums up my life right now :) Regarding extended tx, the big determiner appears to be viral response. All the doctors I consulted with (except my treating doc :) ) said there was no rhyme or reason to extend beyond 48 weeks unless you were a slower responder. I ended up doing 54 weeks at my doc's urging because of age and histology but even my NP was against it. Looking back I don't think I needed the xtra weeks but of course it's all speculation looking back.

-- Jim
Helpful - 0
116701 tn?1210259164
That's funny Jim I've read four books on Knight Templars in the past three years. None notable or on the best seller's list. I haven't read since I started treatment because of short attention span and blurred vision. I can't wait to start again. No, No my friend for me you have been king and stayed clear of the emotional aspects therefor Mucho respect to you. We need to get you over to the Middle-East. Mrs O was the one looking for the answer on extended treatment. My doctor, like yours simply doesn't want to extend because if a patient fits a certain criteria then certain things are known factors. He is pretty much by the book. I've had some real begging sessions with him lately about the low platelets and leaving me on treatment. Guess I'll know more this evening when I see him. Lot of pressure on kings isn't there? Dale
Helpful - 0
Avatar universal
Didn't mean to come off as a smart a$$, or downplay any ones sides, sometimes you get answers quicker here than elsewhere.

Actually my 2 and 4 year old just woke up so I will have to get back to the ants later.
Helpful - 0
Avatar universal
I've been to Israel, Lebanon, Syria, Iran, Afghanistan etc,  many, many years ago, and it's not surprising they can't get along. H*ll, the individual sects in most of those countries hate each other, so not suprising they can't get along with other countries.  But what places to visit. Wow. Had an Iranian girlfriend for my brief stay and was told I'd get my throat cut if her brother found us holding hands. LOL. Nothing like being young, in love, and with a little element of danger :) Yup, those were the days -- Hep C wasn't "invented" yet, not to mention combo treatment --  and not a care in the world until my Orient Express train wreck, but that's another story :)

-- Jim
Helpful - 0
Avatar universal
Didn't think you came off that way, and frankly I'm a bit on "edge" lately for a number of reasons, so any apologies in tone are mine. Take care of your little flock and then get back to those ants :)

-- Jim
Helpful - 0
Avatar universal
Greetings and please refresh my foggy memory.  Are you on your second tx? Please post your stats and 12 week PCR and when you became undetectable.

As others have said, you have to weigh the risk of damage against the benefit of extending.  I will do my last of 56 shots Friday.  The 8 overtime weeks have been bad, I think in part because mentally I feel like I am making myself do this and MAYBE don't need it.  
kathy
Helpful - 0
Avatar universal
My doctor takes extending so seriously that he is making me have a second opinion by a very well known and respected doctor BEFORE he will approve.

I am a DUAL genotype (1a and also 1b) and I did not reach UND at week 12 (somewhere between 12 and 24) so therefore with me having so MANY things seriously against me I have to extend.

I don't think I would stay on these meds any longer than the 48 weeks if I did not have to - they cause horrific LONG TERM sides and problems (ie: my thyroid being dead) and if I didn't absolutely have to I honestly would not.

They really ARE poison.

Knowing that being overweight is one of the negative predictors for SVR...I think they already built that IN to the 48 weeks don't they?  I've not heard of anyone extending for that reason.

PS I'll probably go for 72 weeks but am completely a different story considering I am quite quite uh thin we'll call it (skeltor to the rescue LOL)
Helpful - 0
Avatar universal
From:Journal of Viral Hepatitis
<A HREF="http://www.medscape.com/viewarticle/525585/">Hepatitis C and Steatosis:A Reappraisal</A>

Response to Antiviral Treatment

An impaired therapeutic effect of antiviral treatment has been consistently observed in patients with HCV and steatosis.[2,53,54] It has been speculated that this phenomenon is linked to steatosis and might be differentiated from those which are linked to obesity.[7] However, there is such a close association between steatosis and obesity, even in genotype 3 infection,[36] that studies addressing steatosis in HCV-positive subjects with a normal BMI are needed. Indeed, a logistic regression model provided an odds ratio (OR) of the weight effect of 0.90 per each 10 Kg weight increase (95% CI 0.79-1.04).[55] In the largest multi-centre study published so far, the impact of steatosis on the response rate to antiviral treatment was substantial in that the OR for SVR was 0.48 (CI 0.35-0.66).[22] These data have also been confirmed by other authors.[53] By studying 28 patients with genotype 1 and 34 with genotype 3 HCV, these authors found that in patients with HCV genotype 1, there was no change in hepatic steatosis after treatment, irrespective of the treatment response. Among those infected with genotype 3, SVR significantly reduced steatosis (P < 0.001), but there was no change in steatosis among those without a SVR. By logistic regression analysis, SVR was the only variable predictive of improvement in hepatic steatosis (OR = 36, 95% CI = 2.7-481, P = 0.007). Cast
Helpful - 0
96938 tn?1189799858
Not sure if I have any input to your consideration to extending. But, for you to even consider it tells me that you must be feeling better than you were a few weeks ago - and that in itself is good.  With the unobstructed view that hindsight gives me, I would have gone with und plus 36 weeks.  As it was, I was clear at 12 and stopped at 24 (3a).  The rest is that clear view backwards.
Take care Val, I hope you are feeling better.
Helpful - 0
Avatar universal
there are no true percentages, so no real answer to your question. But, if you want to play with math, read the inserts' list of side effects, adverse events, etc and whatever percentage is there, could give a guess as to how many would retain the sides. If, for example, 30% got depression, then, if everyone did not experience relief of that symptom, it would be 30% with depression as a post tx effect. It might seem like 100% by what you read in boards sometimes, but it does not add up when compared to the trials percentages.  I don't see why these subjects would minimize or lie about how they feel. read some of the trials and their conclusions and look for their reported percentages also.

Mrs O, if you are feeling strong enough to continue, cleared the virus early and want to improve histology and increase your chances for SVR go for it. you can always stop anytime after the 48 wks. any extra time, can be called the 'mop up' stage, like Ina said.
good luck
Helpful - 0
Avatar universal
I don't remember saying anyone here was a liar,if it came across that way I apologize.
Helpful - 0
Avatar universal
??
Helpful - 0
100019 tn?1335919717
WOW!  Great responses.  Sorry about not posting stats.

1b - 1,200,000 starting vl

UND at 12 and 24 weeks.  

Week 42 Labs (got today)

AST/ALT normal for the first time during TX.

HGB was 12.5 dropped to 10.7, but was off procrit for three weeks, started again this week.

Feeling MUCH better than previously.  Back at work full time as of last week.  Much more energy and general good feeling the last month.

Have lost 45 lbs and am making changes in diet during TX to help the overweight and NAFLD.

Great info from everyone.  I believe I will withhold decision till the 48 and just take it from there.  I like the idea of maybe doing it week to week after that.  If I start feeling lousy again I can always stop.

At least now I know I'll make it the 48.  UND at 12 plus 36 does make it 48.  

Thanks so much for the responses!!!
Helpful - 0
132578 tn?1189755837
?? me too.
Helpful - 0
Avatar universal
Maybe I need to take a month off, I think I am seeing things that are not there, and getting overly defensive.

By By
Helpful - 0
Avatar universal
I can understand why you thought the way you did, just another misunderstanding here. Happens all the time with so much going on in a single thread and people paraphrasing this and that. Please stay. We can not only use your sense of humor but I think you can use the support we offer for the ants under your treatment. Unfortunately, you inadvertently stepped into a landmine with this particular topic and it's certainly not your fault.

Let's get those ants SVR.

-- Jim

Helpful - 0
Avatar universal
I agree with NY Girl. Overweight is not in itself a reason for extending. Did you clear by week 12? If so, standard protocol is to treat 48 weeks. If you want to go beyond that, I suggest you consult with either your doctor or another doctor in his absence to evaluate whether the risks of extending merit any incremental (if that) rewards regarding a better shot at SVR.

-- Jim
Helpful - 0
Have an Answer?

You are reading content posted in the Hepatitis C Community

Top Hepatitis Answerers
317787 tn?1473358451
DC
683231 tn?1467323017
Auburn, WA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Answer a few simple questions about your Hep C treatment journey.

Those who qualify may receive up to $100 for their time.
Explore More In Our Hep C Learning Center
image description
Learn about this treatable virus.
image description
Getting tested for this viral infection.
image description
3 key steps to getting on treatment.
image description
4 steps to getting on therapy.
image description
What you need to know about Hep C drugs.
image description
How the drugs might affect you.
image description
These tips may up your chances of a cure.
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.