Author Topic: Hep c genotype 3. sovaldi and ribavirin (Read 17777 times)

Fightinghepc · « **on:** July 29, 2015, 10:41:12 am »

Hello,

I received my sovaldi a week ago, I am still waiting on my ribavirin.
An organization is helping me with my meds because I don't have insurance.I am very blessed and thankful for this organization, my doctor, and everyone that has helped me along the way.
Do to the fact that I don't have insurance I can't really afford to go to the hospital so I'm willing to fight with everything to defeat anything that stays on the way of having a smooth and encouraging treatment.

-I'm eating healthy.
-Started running 1-2 miles each day.
-I stopped using drugs and alcohol about 10 months now

-mentally and emotionally I am ready

I do have one question. I'm trying to decide wether

Fightinghepc · « **Reply #1 on:** July 29, 2015, 10:46:58 am »

..... Whether or not I should take my meds in the morning or at night. I wonder if the meds would work better if I take them in the morning but I haven't had a clear answer.

I am writing on here to find people that are on the same or similar journey so we can encourage each other and having that emotional support from someone that is going through the same walk is a blessing to my life

sickpuppy · « **Reply #2 on:** July 29, 2015, 10:54:39 am »

I think you know about this already, but please make sure you do go to an emergency outpatient or something like that if, inside your treatment, you faint or are extremely dizzy.

Ribavirin causes a decrease in hemoglobin, which you are aware of, and in most people, it's a decrease of about 3 points on average. Considering the normal hemoglobin is 13-16, you can take that decrease without any dangerous side effects.

However, some people respond more violently to the Ribavirin and their hemoglobin just drops like a rock and fails to stabilize and they get to low levels such as 8 or even lower.

You risk a heart attack at 5 hemoglobin. 7 or 8 if you already have pre-existing cardiac issues.

You should do a check-up at Week 4, pay for it if you must, but check your levels.

I take 1200mg of Ribavirin twice per day. 600mg in the morning and 600mg in the evening. They are about 9 hours apart. I take it with high fat food.

As for Sovaldi, it doesn't matter when you take it as long as it's at the same time every day.

Fightinghepc · « **Reply #3 on:** July 29, 2015, 11:37:06 am »

Thanks for the feed back.
Yeah if I have to go to the hospital I will, I am just trying to stay positive and being optimistic.
I have check up with the doctor and blood work every 4 weeks.

Fightinghepc · « **Reply #4 on:** July 29, 2015, 11:39:00 am »

I'm going to do more research on Hemoglobin.
Is there something I can do to help with my hemoglobin levels?

KimInTheForest · « **Reply #5 on:** July 29, 2015, 11:44:45 am »

Quote from: Fightinghepc on July 29, 2015, 11:37:06 am

Thanks for the feed back.
Yeah if I have to go to the hospital I will, I am just trying to stay positive and being optimistic.
I have check up with the doctor and blood work every 4 weeks.

It is very rare that anybody has to go to hospital because of side effects from these new all-oral treatments. Even with ribavirin involved, most people are tolerating the all-oral Hep C drugs quite well, and side effects are not severe.

It sounds like you are doing all the right things FightingHepC in terms of diet and lifestyle and exercise and positive attitude. That will see you through!

Re: your question about mornings or evenings… I just finished 12 weeks of Harvoni+ Ribavirin. (Harvoni is Sovaldi with a second drug added, ledipasvir - so my treatment was similar to yours.) In my case BOTH the harvoni and ribavirin would give me insomnia if I took them in the evenings. So I took my harvoni and 3 ribavirin at 9 am, and my second 2 ribavirin at 4 pm each day, and that worked fine.

Good luck on your treatment and welcome to the journey!

kim

KimInTheForest · « **Reply #6 on:** July 29, 2015, 11:50:13 am »

Quote from: Fightinghepc on July 29, 2015, 11:39:00 am

I'm going to do more research on Hemoglobin.
Is there something I can do to help with my hemoglobin levels?

The one thing you DON'T want to do is take iron supplements or start increasing your dietary iron. Some people make that mistake, thinking that any type of anemia is due to iron deficiency. But only iron-deficient anemia is due to iron deficiency. If you increase your iron, while on ribavirin, you could end up in an iron overload position, which can be damaging to liver.

There are at least 3 research studies suggesting that antioxidants help protect red blood cells from ribavirin-induced anemia. And there is some evidence suggesting that some of the B vitamins (especially B12) are helpful in building new red blood cells. So I did my best to eat blueberries and other high-antioxidant fruits and veggies, plus I took a high potency B-complex vitamin daily. I don't know if it made a difference. But I felt I was doing something positive to help my body. And the psychological factor is important in all this.

best,
kim

Fightinghepc · « **Reply #7 on:** July 29, 2015, 01:21:53 pm »

Thanks Kim.
Your comments are very encouraging and will keep your info in mind as I go on this journey!

Thank you to everyone that is willing to help and encourage others. You guys are all awesome

Fightinghepc · « **Reply #8 on:** August 06, 2015, 08:58:34 pm »

I get my ribavirin on Friday and hopefully start treatment on Saturday. The doc told me people like to start on a Sunday or Monday but I am just ready to get started and smash hep c

. I am mentally ready. A few months ago I was scared but not I am focused and determined. I am thankful for all the support on and off this web. Keep strong everyone

KimInTheForest · « **Reply #9 on:** August 06, 2015, 11:11:39 pm »

I say go for it as soon as you have your drugs. The sooner you start, the sooner you'll be done.

kim

TexasC+ · « **Reply #10 on:** August 07, 2015, 09:00:46 pm »

Week 11 of riba and sovaldi. Have 24 weeks total to do.
Drink LOTS of water, stay active, eat right.
Think of being hep c free. The course of treatment will end and you will be able to live without Hep c.
Some days are better then others. Side effects are greatly reduced when I drink a ton of water.
Sending you lots of positive energy and prayers.

Fightinghepc · « **Reply #11 on:** August 07, 2015, 09:41:11 pm »

I plan on starting tomorrow:)
Thanks for all the positive energy everyone .

Fightinghepc · « **Reply #12 on:** August 07, 2015, 09:43:03 pm »

Week 11. That's awesome!!!! I'll be there soon

I usually drink a few cups of water when I wake up, drink 2 gallons of water at work. And after work I'm always thirsty.
I wonder if I'll need more water when I start treatment.

I have one concern. I have to take drug test once or twice a week and I have to limit my water intake 3 hours before I take the test or else it could be diluted. If it's diluted I go to jail 48 hours :/.. I don't think I'll be able to go three hours without drinking water at work during treatment. I plan on talking to my boss to see if he would let me get off early the days I have drug test. Hopefully he lets me.
From your guys experience how do you feel if you go 3 hours without drinking water? Any advice would be appreciated.

TexasC+ · « **Reply #13 on:** August 08, 2015, 09:15:14 am »

Get a letter from your doc about the water intake and give it to your agency that requires the drug test. Blood draw for drug test does not dilute. If you have a dilute test then offer to do a blood test. you may have to pay for the test BUT it is worth it. If you have to water restrict before it then just catch up after. Also get a letter /order should they hold you, you MUST have your meds.
I work a very busy job and sometimes I don't get to drink for a few hours. So long as I hit the water hard when I can I am okay.

Fightinghepc · « **Reply #14 on:** August 12, 2015, 08:21:07 pm »

Thanks, I am on day two and so far I feel great

I went a couple hours without water today because of work and it wasn't too bad so I think I'll be able to do just fine when I have to take a drop.
Day two already

)
This is awesome!!!!! I am very happy and very thankful

cazbyrd · « **Reply #15 on:** August 12, 2015, 08:59:45 pm »

Hi there...glad you've joined us Fightinghepc...I'm ending my 6th week tomorrow...water is super important which I found last week after getting my blood tests and seeing that my Hgb had dropped to 9.9...not only did my Dr drop my Riba dose from 1000mg to 800mg but he told me to double the amount of water I was drinking...I did and immediately felt a little bit better...not so tired & the brain fog I was experiencing every so often seemed to subside...its only been a day and 1/2 without the extra Riba so I know that's not he reason but doubling up on my water a week ago is the one thing that has helped me...when you have to do with out the water before you drop just make sure that you drink up whenever you get the chance...I know you'll be just fine...its nice to see others on the same treatment...Stay positive...

janca · « **Reply #16 on:** August 18, 2015, 11:01:30 pm »

Hi everyone
I also have type 3 hepatitis. I received a new liver almost two years ago. I am located in Canada and I was waiting for new drug approval but unfortunately only Harvoni was approved for any sort of coverage here. As soon as that happened I started looking for other channels to get the drugs I needed to go for a cure and ended up doing a huge fundraiser and go fund me campaign. Due to the generosity of family and friends I raised the funds needed and arranged through grey areas to have someone bring the drugs I needed to Canada from India, the people in India were awesome!
I have been on my drugs for one week now. I am drinking lots of water and trying to eat healthy. My side effects so far seem to be, no appetite, feeling physically exhausted all the time, and I often get a slight headache. I have ensure(meal replacement) as sometimes food just turns my stomach looking at it. If anyone has any tips that would be great.

KimInTheForest · « **Reply #17 on:** August 19, 2015, 01:24:22 am »

Quote from: janca on August 18, 2015, 11:01:30 pm

Hi everyone
I also have type 3 hepatitis. I received a new liver almost two years ago. I am located in Canada and I was waiting for new drug approval but unfortunately only Harvoni was approved for any sort of coverage here. As soon as that happened I started looking for other channels to get the drugs I needed to go for a cure and ended up doing a huge fundraiser and go fund me campaign. Due to the generosity of family and friends I raised the funds needed and arranged through grey areas to have someone bring the drugs I needed to Canada from India, the people in India were awesome!
I have been on my drugs for one week now. I am drinking lots of water and trying to eat healthy. My side effects so far seem to be, no appetite, feeling physically exhausted all the time, and I often get a slight headache. I have ensure(meal replacement) as sometimes food just turns my stomach looking at it. If anyone has any tips that would be great.

Welcome to the forums and the treatment journey, Janca!

I too am/was Geno 3 in Canada, and I hear ya on the problem of limited access to the new drugs here for us. I was treatment naive. And in my province as a Geno 3, I would have had to take interferon first before being eligible for all-oral treatment. I have said no to interferon for 20 years, so it made no sense to say yes now when the all-oral cure is finally here. I found a clinical trial for Harvoni+ribarvirin for Geno 3s, and got my drugs that way. Am now 3 weeks post-treatment.

Amazing what you did with fundraising and then finding someone to bring you the drugs from India. Good for you!

Appetite suppression was a big problem for me too throughout treatment. Skinny to begin with and now much skinnier. I just did my best to eat whatever I could whenever I could get it down. I would often rely on smoothies if I couldn't get other food down. banana, yogurt, ground flax seed, berries - even veggies like carrot, kale, cooked beet - all good in smoothies.

Anemia tends to be the big issue with ribavirin, although not everyone is affected by it. I was. It is not an anemia you can take iron for. (Iron supplements may actually hurt you in that situation.) There is some research suggesting that antioxidants can help to counteract it. And also I think a B-complex vitamin could help. I did my best to eat blueberries, blackberries, carrots, tomatoes and other high antioxidant foods during treatment. And I tried to take a B-complex vitamin daily. Forgot most of the time.

Best of luck and do keep us posted on your progress!

kim

KimInTheForest · « **Reply #18 on:** August 19, 2015, 01:36:43 am »

Quote from: Fightinghepc on August 12, 2015, 08:21:07 pm

Thanks, I am on day two and so far I feel great I went a couple hours without water today because of work and it wasn't too bad so I think I'll be able to do just fine when I have to take a drop.
Day two already )
This is awesome!!!!! I am very happy and very thankful

I meant to say earlier: CONGRATS FightingHepC on starting treatment! How are you doing now? You must be at least 10 days in. Hope it is going well for you so far.

kim

Bree · « **Reply #19 on:** August 19, 2015, 02:02:58 am »

Fightinghepc and Janca,

Wishing you both the best of everything with your treatment and beyond:) Bree

Fightinghepc · « **Reply #20 on:** August 19, 2015, 03:43:42 pm »

I'm on day 8

))).
It's going great!!
I've just felt like crap when I have to take a drop. I went two and a half hours with no water and I was getting dizzy, I was feeling weird. Right now I'm waiting to take a drop again and feel so weird!!
But I gotta do whatever it takes so I think I can do it , I'll just chug some serious water when I get out

Other than that it has been good, I sleep okay, eat healthy, exercise and overall I'd say I feel 95%
Thanks everyone for support and positive vibes

Fightinghepc · « **Reply #21 on:** August 19, 2015, 03:47:27 pm »

Hi janca, stay positive , and be strong!!
I'm happy for you that people around you are helping you out!
Drink lots of water! It helps me.
Keep us posted

Lynn K · « **Reply #22 on:** August 19, 2015, 05:43:34 pm »

Hi all you GT 3 folks especially those who have not yet started treatment.

New options are now available. Well kind of new press release was July 24, 2015

http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm455888.htm

FDA approves new treatment for chronic hepatitis C genotype 3 infections

The U.S. Food and Drug Administration today approved Daklinza (daclatasvir) for use with sofosbuvir to treat hepatitis C virus (HCV) genotype 3 infections. Daklinza is the first drug that has demonstrated safety and efficacy to treat genotype 3 HCV infections without the need for co-administration of interferon or ribavirin, two FDA-approved drugs also used to treat HCV infection.

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Author Topic: Hep c genotype 3. sovaldi and ribavirin (Read 17777 times)