48 week triple therapy

[jabbo]

I have had hepatitis c-2 since 1987. I was diagnosed about 1 year ago and am about to start treatments in a couple of weeks. My doc first said that I would be on interferon and ribavirin for 24 weeks. When I saw him again last week, he informed me that I would also be on incivek and extended it to 48 weeks. He said that my cirrhosis was worse than he first thought. My viral load was around 5 million when first diagnosed, I do not know what it is now. I had a thousand thoughts going through my mind and did not ask him to explain why the change. I wondered if anyone here can shed some light on why he changed the treatment and duration for me. Any info and advice will be greatly appreciated. Thanks

[iana5252]

Hi Jabbo,

Welcome to the forums.

You have a higher chance of success with the triple therapy than with interferon and ribavirin alone.

One of our bloggers recently finished the same treatment you are starting. You can hear is first-hand account of treatment here...
http://blogs.hepmag.com/devonnicholson/

Good luck with the therapy and please let us know how it goes.

- Ian

[jabbo]

Thank you  for your reply and support iana, I was wondering if anyone might know the reason for his changing the treatment that much from one week to the next. They did more blood work the week before he changed the meds and timeframe for my treatment.

[lporterrn]

Hi Jabbo,
The best way to find out what your doc had in mind is to ask directly. I can speculate, but sometimes it just comes down to "He or she was in a hurry and misspoke." I suggest you get a clear sense of what the protocol is, and then if your doc veers from that, ask why. Generally, you take all 3 drugs for 12 weeks, then the Incivek is dropped. Typically you treat patients with cirrhosis for 48 weeks. However, 1) you may be discontinued early if you don't respond sufficiently, and 2) some docs like to start the first 4 weeks without the Incivek. It is a medical choice that is reasonable, but not necessarily by the book. Both ways are fine.
This is a huge journey you are undertaking - get support and information and stay in touch. I've been through it 3 times, and I never regretted it - the treatment helps the liver even if you aren't cured. However, I am happy to say that I am tentatively cured. (I have 2 more months to go for final official results)
Lucinda

[jabbo]

Thank you Lucinda and congratulations on your treatment. Your speculation makes sense because the doctor said that my liver is worse than first thought. I  guess that is why he changed the duration from 24 to 48 weeks. Thank you for your reply, any advice that you or anyone else may have for me will be greatly appreciated. I am pretty much on my own with all of this and could use some friends who understand what I am going through.   Thanks again.   Jeff

[lporterrn]

My advice is to get as much info about side effect management as you can. Prepare for this like you are going into a race - the more preparation the better. Be proactive with side effect management. Early intervention is better, but learning what to tolerate and when to call is important. Shameless self-promotion - I wrote a book to help pts through treatment and I have another one coming out in October. You can read a lot for free on Amazon.
It may sound scary, but once you get into it, most people find a way to get through it. Amazingly, most people make it through. I am hoping for the best for you.

[jabbo]

Thank you for the advice.

[jberlin]

Hi, I did not see what genotype you were? That makes a difference too, as I have heard 48 weeks for slow responders and for non geno 1.  If geno 1, and you are UD after 4 weeks and 12 weeks of the Incivek, normal course of treatment is 12 more weeks of dual therapy - and if completed you have about a 92% probability of cure.  It really depends on the speed of response. An extra 24 weeks of Interferon to make damn sure means your liver really is borderline, but in that case I hope you are seeing a Hepatologist and not a GI Doc. I did Incivek triple therapy in 2012 12/12 and as of May considered cured! Make sure you have  partner/buddy/friend with ou for the entire treatment, especially the 1st 12 weeks. My fave Incivek Video: http://www.youtube.com/watch?v=QokLEMqSvXc

[jabbo]

Thanks for the reply Jack. I am genotype 2.  I believe that you are correct about my liver being borderline. My doctor said that they put people on a transplant list at a rating or score of about 14, he said that I was  an 8. Does the scale that he is talking about sound familiar to you?  Congradulations on your results, I hope that 1 year from now I can say the same. Thanks again for the information, I appreciate all I can get.  Jeff

[lporterrn]

Jeff - your genotype is a surprise, esp since your doc suggested 48 weeks. First, even with borderline cirrhosis, 24 weeks is likely all the treatment needed. Second, in December, interferon-free treatment is expected to be approved by the FDA. Looking back at your original post, this may be a great time to gather info, organize it, and have a good sit down with your doc. Or get a second opinion. Or both.
 

[jabbo]

Thank you very much for the info and advice Lucinda. I was also wondering about when the new treatments would be available. My doc just said maybe some time next year  but also thought that I should get treated a.s.a.p.   Jeff

[lporterrn]

Realistically, even if they approved Dec 8th, it might be Jan 1 before people can get the drug. They are much easier than the peg-interferon, but still with side effects and not a walk in the park. Have you actually seen you liver biopsy results? Platelets?

[jabbo]

I have not had a biopsy done on my liver. The doc said from what he could see on the sonogram and from the results of blood work, there was no need to do it.
(that told me that my liver was not in good condition). He said that we needed to get started on the treatments.

[lporterrn]

If cirrhosis is suspected, which in this case it is, it is safer to do noninvasive procedures, such as this. There are other noninvasive tests, but sounds like your doc feels pretty confident with the results. Have you had an upper endoscopy to look for varices? If cirrhosis is suspected, it is a good idea to monitor for varices, and band them when necessary. Hopefully you will be cured in no time.

[jberlin]

I am surprised by no biopsy, but with new treatments likely only months away, and interferon being the joy that it is, I question deciding to treat now based on a Doctor's informed guess with a sonogram.  Were contrast agents even used?  If not, you need a cell stain done and read.  The new Sofosbuvir looks like a real game changer, but not sure how soon after approval for geno 1 it will be available for geno 2 patients. But the non-interferon treatment of geno 2 looks really promising, and I say again, and agree with Lucinda, that 48 weeks makes no sense with your liver state. Recent article on geno 2: http://www.aidsmap.com/Sofosbuvir-ribavirin-cures-most-genotype-2-hepatitis-C-but-genotype-3-response-is-lower/page/2640586/ "Amongst people with genotype 2, the SVR12 rate was 97%"

[jberlin]

I am guessing you have already started treatment, and if so, let us be here for you! And, if you do not see an early and rapid virologic response, think real hard about continuing.  You should be UD at 4-5 weeks, hen again at 12, and if so, be able to stop at the dual therapy at 24 weeks with a 90+% chance of cure.  24 more weeks of dual therapy has shown a less than 2% improvement of your chances - not worth the torture!  Good luck! Don't miss even one dose of Incivek, every 8 hours! (and watch that video I posted)

[jabbo]

I have not started my treatment yet. I have a weekend planned taking care of an elderly friend in a couple of weeks and thought it would be a good idea to wait till afterwards to start. Thanks for the advice and for the video. I was also wondering how long after starting treatment does it take for the side effect to start ? Do they normally kick in all at once or do they start slowly and get worse? I know everyone is different but what seems to be the norm? Thank you all for your advice.  Jeff

[lporterrn]

Since you are genotype 2, assuming you start before the interferon-free treatments are approved (in December we hope), you will likely receive peginterferon and ribavirin. You may have the flu-like symptoms after the first or 2nd shot - those are short-lived and can be managed with acetaminophen, water, rest. (some people don't have them - for me they lasted about 5 -6 hrs) If your doc has you on a fixed dose of ribavirin, then you may be able to function fairly decently for a month before really starting to notice - everyone is different. I didn't find it getting really hard until my 3rd month. But even then, it was tolerable. Unpleasant, sometimes hard, but tolerable.

[jabbo]

My meds are already on their way. I am going to be on peginterferon, ribavirin, and incivek.

[jberlin]

If this old man can do it, so can you! You will be fine. Have someone to help you stay on the timetable and cheer you on, and keep us informed. Think of every pill and shot as killing Hep C, and time will go quickly.  -jack

[Elijah]

If this old man can do it, so can you! You will be fine. Have someone to help you stay on the timetable and cheer you on, and keep us informed. Think of every pill and shot as killing Hep C, and time will go quickly.  -jack

I am 63 and even though I am not having to deal with what you are Jabbo.I do know you have a great support here and that you need to stay positive.I use that word a lot but its so true when you have to deal with what BS life throws at you.

[jabbo]

Thank you Elijah, I  am pretty much on my own with all of this and  can use as much support as I am able to get.

[Elijah]

Thank you Elijah, I  am pretty much on my own with all of this and  can use as much support as I am able to get.

Your welcome

[jberlin]

So, are you taking your interferon shots on Fridays?  Be strong, take everything as directed, remember that Ibuprofen is your best friend, and shout if you need anything!  You will get the results of your 4 week labs soon, so let us know how you do.  Time will pass quickly, even though it is hard to gauge right now. -jack

[karenhoyt]

Jabbo -
You've gotten some good advice. Now that you're into it... I was in your shoes just a few years ago. I've been SVR for over a year now. You know, the same thing happened to me. I knew that the protease inhibitor would be part of my regime, but hadn't counted on the 48 weeks.
What I found out later was that those with cirrhosis did really well on the triple therapy combo. I was end stage and it was a tough deal. My heart is with you on this and I hope you stay connected with the site. You will need support and it's always here for you.
Karen xoxo

[jabbo]

Thank you Jack and Sharon for your advice and support. Unfortunately, I have not started my meds yet, there is some problem with my insurance. They say that my doctor has not sent the proper P.A. to them yet, the doctor's office says that they have, I have an appointment the 30th with my doc. I hope to get it straightened out then. I am very anxious to get it started and be done with it. Thank you all for your advice, I will keep you updated.  Jeff

[jabbo]

I went back to see the doctor today, he had spoken with my insurance and the reason for the delay was that they did not want to pay for Pegasys. They instead approved Pegintron. Does anyone have an opinion on or experience with this drug?  Jeff

[jberlin]

I think they are essentially the same drug, both peginterferon, but what does your doctor say?  If they are generics, then your insurance company is just trying to save a few bucks, and it should not matter.  I think I did one, then the other with my two treatments, but not sure.  I bet they both deliver the same fun kick!  I found some sites that claim Pegasys is easier to tolerate, perhaps slightly more effective, and other variations:  http://www.hepatitisdoctor.com/pegasys.htm 
http://www.hepmag.com/articles/hiv_pegasys_pegintron_2501_17850.shtml
Let us know what the Doc says. -jack