scared to start

[SW]

Hi , I'm new at HCV, I have lots of questions about the peginterferon alfa-2b cure. I've read so many bad things that I got scared about starting the cure. I have ginotype 4 virus overall I'm in perfect shape. So I wonder : Is it worth putting my body through all the horrible side effects that i've read about? I will go for a second opinion and to discuss better the pro and cons in relation of my status, but would like to hear some opinions and suggestions on what I should ask my doctor about.
Also did anyone have long-term side effects?

[Jazzdenova]

Geno 4's have a good chance of clearing . I would do it.

[MissyMouse]

SW,

If I recall  correctly, they treat genotype 4 in a smiliar manner as genotype 1 in that the treatment course if 48 weeks long.  It is further my understanding that there is conflicting data on whether or not 4 is as hard to treat as 1 or as easy as 2 and 3.  The SVR rates for genotype 4 are slightly higher than those of genotype 1.  So ... to me it would make sense to base your decision on whether or not to treat as a genotype 1 would.  Being a genotype 1, I can tell you that people over the age of 40 base their decisions on whether or not liver  damage is minimal, most genotype 1's over the age of 40 opt to hold off an treatment as the treatment can be a bit harsh and new drugs are expected to be comig out in 2010.  Most people do not experience symptoms from their HCV until their liver damage has progressed beyond Stage 2, however, there are some cases where these theory does not hold true.  I know Kira/Cris had minimal damage when she treated but rather prevelant Hep C symptoms, so she opted to treat.  If you are   younger than 40, you will tolerate treatment better.  Another factor that must be considered is whether or not you have any other underlying disorders such as depression, auto-immune disorders (Lupus, Rheumatoid Arthritis, Hypothyroidism,. etc.) as treatment will aggravate these conditions.

Below is a copy of an article I found on genotype 4.    Hopefully we've helped you a bit and not scared the poopy out of you  .  Oh, and I am over the age of  40 (48), I have advanced liver damage, I am 58 weeks into my second round of treatment (I relapsed after the first round of 48 weeks) and I'm still kicking and still functioning.  Yes, there are side effects, and sometimes they can be serious, but most often they are tolerable.

Welcome to the Group SW!

Mouse

Pegylated Interferon plus Ribavirin in the Treatment of Chronic Hepatitis C Genotype 4

By Liz Highleyman
Genotype 4 is the most prevalent form of hepatitis C virus (HCV) in parts of the Middle East and North Africa, including Egypt. Studies have produced conflicting data about whether this genotype is "hard to treat," like genotype 1, or easier to treat, like genotypes 2 and 3.

Genotype 4 has been less widely studied than genotypes 1, 2, and 3, which are more common in North America and Europe, and the optimum duration of interferon-based therapy and predictors of sustained virological response (SVR) have not yet been determined.

As reported in the December 2007 issue of Hepatology, S.M. Kamal and colleagues from Ain Shams University in Cairo, Egypt, conducted a study in which 358 patients with chronic genotype 4 HCV were treated with 1.5 mug/kg/week pegylated interferon alpha-2b (PegIntron) plus 10.6 mg/kg/day oral ribavirin.

Participants were randomly assigned to received treatment either for the standard fixed duration of 48 weeks (control group, n = 50) or for a variable duration based on interim viral load:

• Undetectable HCV RNA at week 4: treated for 24 weeks (Group A, n = 69);

• Undetectable HCV RNA at week 12: treated for 36 weeks (Group B, n = 79);

• Continued detectable HCV RNA at week 12: treated for 48 weeks (Group C, n = 160).
The primary endpoint was SVR, defined as undetectable HCV RNA 24 weeks after completion of treatment.

Results

• SVR rates were as follows:

- Group A (24-week treatment): 86%;

- Group B (36-week treatment): 76%;

- Group C (variable duration 48 weeks): 56%;

- Control group (fixed duration 48 weeks): 58%.
• After controlling for predictors of response, milder liver damage (low baseline histological grade and stage) was associated with SVR (P < 0.029) in all groups.

• Among patients in Group C, older age (P = 0.04), higher baseline body mass index (P = 0.013), and low baseline HCV RNA (P < 0.001) were also associated with SVR.

• The incidence of adverse events and the rate of treatment discontinuation were higher for patients in the variable duration and fixed duration groups treated for 48 weeks.


Conclusion

Based on these findings, the authors concluded, "In patients with chronic hepatitis C genotype 4 and undetectable HCV RNA at weeks 4 and 12, treatment with [pegylated interferon] alpha-2b and ribavirin for 24 weeks and 36 weeks, respectively, is sufficient."

01/08/08

Reference
SM Kamal, SS El Kamary, MD Shardell, and others. Pegylated interferon alpha-2b plus ribavirin in patients with genotype 4 chronic hepatitis C: The role of rapid and early virologic response. Hepatology 46(6):1732-40. December 2007.

[TED]

  #4 GENOTYPE, GO FOR IT.YOUR CHANCES ARE SUPER TO CLEAR. TREATMENT ISSUES NOT THE SAME FOR EVERBODY?? DON,T FORGET THAT. GOOD LUCK....

[robin]

Hi SW...Missy gave you some excellent information. I did want to add one thing to what she posted. You read about those who have bad side effects. People who do treatment with manageable sides, don't post that information near as frequently as those who have hard side effects. I do think that everyone experiences some side effects, but I also believe that most side effects are managable by most people. Keep your spirits high...robin 

[Pancho and Lefty]

• Among patients in Group C, older age (P = 0.04), higher baseline body mass index (P = 0.013), and low baseline HCV RNA (P < 0.001) were also associated with SVR.

Mouse, am I reading that older and heavier people were more likely to gain SVR?   Didn't know that.

SW,

People who suggest someone treat or not treat know more than I do. I completed tx and am happy I did it. It's not a picnic. . . it seems to be doable for almost everyone.

OZ/Donna is the single person here who posted to the SVR thread and cleared geno 4. I'm sure she'd be willing to share her experiences.

sincere best wishes,

Max

[Longleggsfromwa]

SW: I`m sacared to start too. I start in 2 days. All of the peeps on this site have been a huge help to me and they will be there there for you too. I am looking at this as a another new path I`ll be taking in this life. Full of new adventures and surprises. Hang in there. I feel truley blessed to have even found all of these wonderful people here at this site.Big hugs,
                                                                                                                                                  Pam

[Betty W.]

Pam and SW, This forum is the BEST PLACE in the world to be if you are beginning treatment ! I confess, I have not treated, so far God has blessed me. I am 66 soon to be 67 my biopsy showed 0 so I am playing the waiting game !!!! I have been on here for a year and trust me if you have questions about anything someone has an answer !!! and it is the right answer. These are WONDERFUL friends with lots of compassion and love.
Please do not be afraid, every one is diffrent and as Max said one time," treatment is doable",,,,all you can do is try and take it one hour and ond day at a time. This life is short, just thank God that you are young and are giving it the best shot you have, I believe in a higher power so I will pray for all of you starting !! I will try to encourage you to drink water and be fully hydrated before you begin....
All my love and Prayers....Betty

[Pancho and Lefty]

SW,

Betty wrote a very thoughtful reply. . . I really didn't.

Things that do affect treatment outcomes are:

age (younger the better according to statistics)
genotype of virus (geno 4 does seem to have better outcomes than 1. . . but less good than 2 or 3)
viral load  (viral count less than 400K has best chance to clear)
length of infection (how long have you had it?)
gender (females are said to achieve SVR more often)
IR (insulin resistance has been recognized as major factor affecting treatment outcome)
IMO, overall physical fitness.

If you're in 'perfect shape,' why are you considering tx?

A few people do experience permanent side effects. Those with a genetic predisposition for a disorder seem to be the ones affected. Rheumatoid arthritis comes to mind. A few are aware of tinnitus (ringing in the ears) after tx.
 
There was a great 'questions to ask you liver specialist' link that isn't available right now. I'll post the link to this thread when I get it.

What do your instincts tell you about tx? Do you think it will work for you?

After researching things, I was confident tx would work for me. Because of my fitness level, I was arrogant (at first  ) about not getting any real physical side effects.

Tx does seem to have worked. The virus was undetectable at 4 months post treatment. I did not get any serious physical sides. . . it went much like I predicted.

And I did beat the age related odds. . . had my 60th b-day during tx.

In the end, SOC treatment is rigorous and stressful, but only a few people seem to regret having tried it.

Max

PS Willy just bumped the 'questions to ask' thread in the Questions and Answers folder here. It's great info.

[Hank's mom]

SW and Leggs -
Welcome! Whatever you decide, the first step, or this case, shot is the big, scary doozie. I wasn't sure if I would blow up, keel over, or turn into the little girl from the Exorcist! None of the above - but I guess it was nice to be let down from the big baggaboos.

4 does have a chance of clearing, and with your overall health you should be just fine. Yes, some of have or had truly rough times, but as Robin said, txers who have it easy don't really post here or other sites too much. There is no predicting who gets which hand - just keep you eye on the prize and your time will be easier to manage. I'm not usually a goal oriented person, but in this case it really helped me alot.

And, as everyone has already stated - this a great place to come 24/7 and just unload, catch up, make friends with people you never would have met otherwise with whom you have a bond. I look at this forum as the chief good side of hep c/tx - otherwise i would have lived in my little town feeling very lonely indeed.

Susie

[SW]

Thank you! everybody for your kind words of advice, I already feel a little better knowing that I have someone to talk to and to listen to ( especially after hours ) and I look forward to share more stories and experiences with you guys.
Ciao

[willy]

Good morning and welcome to the forum!!

Here is a link to the thread that Max mentioned;

http://www.hcvanonymous.com/SMF/index.php?topic=30.msg73927#new

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

Since you are a genotype 4 you may also be interested in this link.  It is rather long so please visit the link but the summary of results is copied and pasted.  It involves standard treatment but adding Alinia (nitazoxanide) to the standard of care (SOC).

http://www.hivandhepatitis.com/2008icr/easl/docs/050608_b.html

Results

• Among the 96 treatment-naive patients, the SVR rate was 79% in the triple therapy arm, compared with 61% in the nitazoxanide-pegylated interferon dual therapy arm, and 50% in the standard-of-care arm (P = 0.023).

• Among the 24 treatment-experienced patients, the SVR rate was 25% in the triple therapy arm compared with 8% in the nitazoxanide-pegylated interferon arm.

• RVR, EVR, and ETR rates are shown in the table below (see next study description).

• Adverse events were generally similar across all 3 treatment arms.

• The exception was that the rate of anemia was significantly lower in the group that did not receive ribavirin.
-------------------------------------------------------------------------

This was just a small trial but it provided a lot of interest and hope for improving current treatment.  Of course, your milage may vary.

Welcome to our forum,

best,
Willy

[Betty W.]

Mom aka Susie....stated like the REAL CHAMP you are....this is the place for encouragement and to meet wonderful friends !
We have bonded, and most of us feel like family, its "home" to me. You will see as you travel the road !!!

Love and Prayers, Betty

[19Dragon52]

~Welcome SW~

Glad to have you aboard!  It looks like you got a lot of info to your inquiries and I hope that puts you somewhat at ease and helps with your questions on your 2nd opinion. 

I am 2 years SVR (genotype 1a/stage 2; grade 2) and feel worlds better than before I started TX.  I already had Arthritis and RA before TX and those may be the only ailments that seem to be a tad worse at times.  But, age & location could also be a big factor.  I am now 56 years old and living in a very humid area...Niagara Falls, NY.  Just before I started TX I was 53 years old and living in a warm & fairly dry climate...Southern CA.

Whatever You & Your doctors decide, we're here for you.

Love & Support.....

[pete c]

 HI SW  And My little buddy Legs

   Man i sure do understand the feelings you 2  have , There is a wealth of info here, Yet more important is the support &understanding , love and compassion.  We all have been just at the same point you 2 are right now.I,am geno type 3.Have been on Tx for 29 weeks at this point in time,Yes I,am now a teenager only have 19 more to do. As it has been said this stuff affects people differently, For me so far  it has not really been bad at all, I held a job when i first started working in factory, till i was laid off.
I have found for myself Attitude means a lot,Drink lot,s and lots ,lots of water And try and always look at the bright side of things,when possible. The most important thing my doc told me was the i will die with this befor i die from it.I dont want to keep rambling on. There just so much to share. So i will close with  I know in my heart that you both are worth it, Just be true to thins own self. And i will always be here for you. So god Bless and keep you strong in your journey just for today.

                                                  Your
                                             Pa Pal Pete