HealingWell
Search Close Search
☰

New triple-drug treatment for Hep C

Support Forums
>
Hepatitis
✚ New Topic ✚ Reply
12 3
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/23/2012 10:47 PM (GMT 0)
We've had some people posting lately that they are on the new treatment (Incivek, Ribavirin, and Interferon) or have just finished. I'd like to have a thread just for folks on this treatment, so we can keep track of how many are on it and to have all those patients in one thread.

Please just say "I am." If you wish to elaborate as to how it is going, we'd love to know...even when treatment is harsh.

You all are pioneers to those of us waiting to start treatment. I am supposed to start in Feb., but wouldn't be surprised if it's March or later. I'm slightly anemic and was told they want to deal with that first, but nobody has said to use an iron supplement. No point in trying to contact anyone during the holidays, but I will do so afterwards.

Hugs,
Connie
Posted 12/24/2012 3:46 AM (GMT 0)
Connie, very good idea, Chuck will most likely be starting treatment in about 5 months, he to was/is very anemic and his doc has him on 325mg of ferrous sulfate daily, just did bloodwork Friday to see how his anemia is doing.  Will keep you updated.  Good idea about the treatment thread, will be much easier to learn what we are about to go through. Thanks, Pat
Posted 12/24/2012 6:09 AM (GMT 0)
Roxie, why the long wait until treatment begins?

My co-moderator, Carol, is also interested in how people doing the triple treatment react, on behalf of her partner. I really want to see posters who are actually on the treatment now, or whose loved ones are.

Hugs,
Connie
Posted 1/1/2013 4:59 PM (GMT 0)

yeah  

Connie as you know I should be starting in early April, if all goes as planned (like that's ever happened).

I would love to share and learn along with everyone else.

 

Posted 1/11/2013 1:25 AM (GMT 0)
I have just finished 12 wks of three drug combo. Incivek was very hard on me. Just eating 30 g of fat with each dosage every 8 hrs was hard enough, but the rash was worse than poison ivy. I have a blog that I have been chronicling this treatment at:
http://boomerblood.blogspot.com/2012/09/introduction-i-decided-to-create-this.html
Posted 1/11/2013 2:19 AM (GMT 0)
Chris, thanks very much for your input and the link. I will go to it a bit later. Are you continuing with the other two drugs for the next 12+ weeks? What have you done for the rash?

P.S. I read much of your blog and found that your doc wants you to continue the remaining drugs for the full 48 wks. I think that is really more common than finishing completely at 24 wks.

I'm wondering how you felt prior to treatment? Did you have a lot of fatigue or did this hit only on treatment, due to the anemia? I'm so exhausted now and can't really imagine being more fatigued and doing less than I can now. I also live alone, so have no help aside from being taken to the drug and grocery stores and for hair cuts. Since transplant, I've noticed my hair has thinned. I think it's probably from the antirejection med, Prograf.

Hugs,
Connie
Posted 1/22/2013 3:52 AM (GMT 0)
there is a better way
Posted 1/22/2013 4:23 AM (GMT 0)
...and that is
Posted 1/22/2013 5:25 AM (GMT 0)
David, read his previous posts.
Posted 1/22/2013 2:50 PM (GMT 0)
I did and am still not sure what he means.
Posted 1/22/2013 5:02 PM (GMT 0)
That there is another, better treatment in the pipeline. But we knew that. There are several that will be available this year, but they are in Stage III right now. And in my case, the doc said I couldn't afford to wait.
Posted 1/31/2013 5:28 PM (GMT 0)
Hello, folks. My name is Ellie, I'm new to the site, as this is my first post, and I started the triple treatment for genotype 1A on Jan. 10th, 2013. I can, in no way, say that this is easy. I am lucky in that I was diagnosed early, had a low viral load when I began treatment, and I have my family not only supporting me, but helping me as I try to make it through this treatment.

Overall, it sucks. Always feel like garbage. I had slight fatigue, but nothing else upon my diagnosis, but now, I feel pretty terrible a good portion of the time. First week was rough with the nausea, vomitting, fatigue, etc. Second week was much worse, all the first week's symptoms, with the added bonus of much worse depression and anxiety. Near constant panic. I'm also in a methadone treatment program for opiate addiction, so any and all doctors are very weary of giving me benzos, although that has never been a problem for me, addiction-wise. I understand their side, and was very thankful that my Hep C doctor understood and gave me a low dose Ativan, which has made a world of difference.

Today, I begin my fourth week of treatment, with my Peg-Intron injection, followed by puking and sleeping, if I'm lucky. Christ, I hope this works, cause as of right now, EVERYTHING sucks.\

EllieS
Posted 1/31/2013 8:52 PM (GMT 0)
Ellie, welcome to the forum and thanks very much for your input. I'm sorry you are having such a rough time with this treatment. That's what I'm afraid of...that I won't be able to tolerate the side effects. I am still having tests to make sure there are no underlying problems, before starting on treatment.

Please continue to give us updates on your progress. I sincerely hope this treatment works for you!

Hugs,
Connie
Posted 2/4/2013 2:46 PM (GMT 0)
Although Incivek did not work for me, I encourage anyone who has hope to give it a serious chance. I was SVR undetectable at week 12 & 24 (please note these milestones are important & actually represent the testing timing of the high success rates published by drug company trials). If you read the study results you will see the SVR rates published after treatment is discontinued is much lower than 70%-90%. This is not a good enough reason not to try, just to be more realistic. I stopped at 48 weeks, the virus returned immediately.

In retrospect I wish I had been more prepared for treatment, as EllieS appears to be. I wish I had been more assertive about my depression, anxiety & insomnia during treatment. I might have been better able to manage the sides were I more insistant on managing them.

Hang in there EllieS & ask for what you need! Good Luck,
Cary
Posted 2/4/2013 9:15 PM (GMT 0)
Hello all, My name is Mark S. and I just started the three drug treatment a week ago and am already hating life and feel tired sick and in pain... I am absolutely terrified to think that all this could get worse when I start the third drug (in my case is victrellis not incivek). I do have a good support system here at home ( I moved home to my parents house to help them and ended up needing their help) but am worried about my job and trying to go on living some sort of "normal existence". Again I ma scared to death thinking about how this is going to get worse before it gets better...
Posted 2/4/2013 9:51 PM (GMT 0)
Hi, Mark, and welcome to the forum. I appreciate your posting. I've heard others and my transplant coordinator say it's a very rough treatment, but it works. At least for most people. I can't imagine working on treatment, if it's that horrendous.

If you've not been put on an antidepressant, you might ask your doc about that. You may also need an anti-anxiety med. Just try not to project into the future as far as how you are feeling. I've had people say the first two weeks were the roughest. I guess Victrellis has a different protocol than Incivek, as I believe the Incivek begins the first week.

With what I've heard thus far, I'm not sure I'll be able to handle treatment. I live alone and will have no help, although I'm retired and don't have to worry about work.

Just hang in there and see how it goes. At least give it a chance. Or you could wait for newer treatment w/o interferon, which should be available by the end of the year.

Hugs,
Connie
Posted 2/5/2013 6:35 PM (GMT 0)
Hello, everyone. I begin my fifth week of treatment this Thursday, and I gotta say, it's definately getting a bit easier. With the help of a low dose benzo (Ativan, 0.5mg) three times a day, I can say that it is getting a little easier. Thanks to all those that responded to my earlier post.
I go back this week for my first viral load since I started treatment. Fingers crossed, it's lower. My HepC doctor, and the two PA's are confident, I'm not holding my breath. Rather not be disappointed.
To Mark S., I feel your pain, my dear. Not sure about your third drug, but I'm leaning toward saying the time around my second and third Peg-Intron injections has definately been the worst, and a little better after. Unless my last injection just decided not to make me feel like death, and was a total fluke. The muscle and joint pain subsided a day earlier this last injection (#4 for me.), I didn't spend the next two days trying to keep any food down as it stayed on it's own, and I think I'm just trying to put myself in a better mindset mentally now. New anti-depressant and low dose benzo are making things A LOT easier. I fully recommend, unless there's a history of addiction, telling your doctor about any depression and/or anxiety you're having and treat it. I thought I was losing my mind a couple weeks ago. Went to the ER it was so bad. Doing much, much better now. Good luck, Mark S., and don't give up. It should, and will, get easier. :)

Ellie S.
Posted 2/5/2013 6:41 PM (GMT 0)
Ellie, I'm so pleased that you are doing better! This is the kind of input we need on this thread.

Hugs,
Connie
Posted 2/5/2013 8:13 PM (GMT 0)
Well thank you all for the replies to my first post. They were very kind! To continue to chronicle whats happening with me, I completely embarrassed myself today in front of my bosses... I was about to start a conversation about how I was feeling and considering taking a week or two off for the side effects to work themselves out a bit, when I suddenly burst in to tears and started apologizing all over my self for feeling like crap and feeling like I am not contributing enough around work... Wow how embarrassing!!!! He told me just to go home and we'll talk tomorrow... I don't know of that's a good thing or a bad thing. Either way, I'll let y'all know.

To Ellie, Thank you for sharing that things will get better... I am so scared to think about trying to survive this for up to a year with these side effects... There is a history of addiction with me but never with benzos. I may consider asking about them if the anxiety doesn't improve a bit. As for antidepressants, I am already on what is considered to be the max dose for Effexor Xr (300 mg Daily) and also take Risperdol. Not sure what else they can give me for the depression and with the history I have of drug use, I am scared to feel like I am just asking for drugs... Kind of a tricky situation. Either way I really appreciate your input and every one on here for at least making me feel like I'm not alone.
Posted 2/5/2013 9:23 PM (GMT 0)
Chef, I can relate. While I didn't have a scene in front of my boss, I did tell a few nurses where I worked about my HCV diagnosis. They literally stepped back, as though they could catch it in the air. I had several such reactions. I got to where I could only work P/T. When offered a F/T position, I had to turn it down, knowing that I wouldn't be able to handle it with the fatigue I had.

In the past, I've also had problems with getting certain medications due to a remote drug history. The longer I've been clean and sober (26 1/2 yrs. now), the doctors have relaxed. But my PCP won't prescribe sleep meds such as Ambien or strong narcotics.

When you have that talk tomorrow, just let it be known that you are going through a rough patch medically, but hope to be doing better soon. If your boss keeps you on, do the best you can. If it becomes too much, apply for disability benefits.

Hugs,
Connie
Posted 2/5/2013 9:48 PM (GMT 0)
If you have been at your job for a year, you need to apply for Family Medical Leave. That will help protect your job. It will also allow you take time time off periodically if you are having a erally bad day. I work in management and closely with HR, I deal with team members with FML on a daily basis. I highly recommend you get the paperwork filled out. I am not sure if it is different everywhere, but here you just have to make sure the paperwork is filled out every 3 months to renew the FML. It is called intermittent FML.
Posted 2/5/2013 10:45 PM (GMT 0)
If you are reticent about treatment, it's probably not going to work out. I've done the 2 part cocktail twice and in both cases, decided I'd die before quitting. The side effects suck, but letting Hep C run wild, will result in the disease taking (over) your life. Going through 6 months or a year of hell is better than a lifetime of dying a little bit at a time. When I first found out I had the virus, my health wasn't too bad, but knowing that the disease was inside me, made me determined to rid myself of it.
Posted 2/5/2013 11:10 PM (GMT 0)
Syxx, thanks for that important suggestion.

Hugs,
Connie
Posted 2/9/2013 9:34 PM (GMT 0)
 hey connie and all,  i came across an article in wsj and press release 2 months ago, on gilead filing for approval to fda mid 2013. and ready for tx end of 2013. the txs involved are gs7977+rib for genos 2 and 3 for 12 weeks and 24. for genos 1 and 4 will be gs 7977+ rib+ interferon. all oral tx for genos 1 and 4 will follow in 2014, available 6 mos after file date. speculation on a possible cure for all, with gs7977+bristol meyers daclatasvir was nixed by gilead, because of having to split profits with bms.  so we wait. petitions are floating around internet asking gilead to do the right thing.  gilead is one year ahead of all the other competitors.   barry
Posted 2/9/2013 10:00 PM (GMT 0)
Gary, thanks very much for that info!

Hugs,
Connie
✚ New Topic ✚ Reply
123