Hep C Discussion Forum

Matt Chris · Guru

RE: Beginning Sovaldi (sofosbuvir) & Ribaviron, Genotype 3a

Zlikster · Guru

after (daily) interferon shots, this will be a such an ez tx.

just wondering was there any issues with your insurance? (recommending Interferon+Ribavirin instead Sovaldi+Riba?).

as for Riba sx, be VERY careful with UV sun rays...you can get sunburns really ez while on Riba (3-6month post tx too!). I was taking Riba with food (mid meal), of if i couldn't eat, with somoe olive oil and (organic/domestic) lemon juice. Ginger juice (with honey and lemon) was helping nausea, tho i am not sure was the major of nause coming from interferon or Riba.

cheers

Cinnamon Girl · Guru

Hi again, Mila. I can`t imagine how you coped with a daily interferon injection, no wonder you described it as pure hell!

To answer your question about supplements, the reason to keep them to a minimum while on tx, as Tig said, is because some of them can interfere with blood test results, and that applies especially to herbal supplements. A daily multi-vitamin is fine, but the usual advice is to avoid anything else unless it`s been recommended by your doctor.

As far as food goes, there`s a possibility that you`ll experience some nausea and loss of appetite once your tx has started, in which case it will be a matter of eating whatever you can fancy. This is why some people lose weight while on tx, so it`s important to keep up your intake of good, healthy, nutritious food when possible. Red meat is fine in moderation, and the same goes for pasta, bread, and other carbohydrates, but try to go for slow release whole grain options if you can. I know it`s not easy when you`re suffering from extreme fatigue, so just do your best! Sandy (ucbgal) has made some good suggestions too.

By the way, you`ll find a link to the full prescribing information for Sovaldi at the top of the `Knowledge Base` section.

Keep asking questions, you`ve come to the right place! smile

ucbgal · Senior Member

mila,

the cbcs are complete blood counts. they test for platelets,hemoglobin,red & white blood cells,hematocrit,mch,neutrophils,etc... it all sounds difficult w/ all these terms but after your 1st blood test google the ones you need to familiarize yourself with. soon you'll be a pro at it. procrit is a rescue drug when your hemoglobin gets below a certain #. the stuff works but takes patience. tigs link to the abbreviations will be a lifesaver.

i cannot stress the importance of hydration and healthy nutrition. fortunately i've practiced this my whole life. jill's suggesstions are spot on. processed foods and empty carbs are hard for our livers to handle thus it's best to limit them. there are very healthy carbs out there to choose from. tig mention ensure, i used atkins for the 1st month to get in my fat intake. after that i began making greek yogurt smoothies w/ fresh/frozen veggies,fruits and flax seeds. do keep up w/ your protien levels, it boosts your immune system. i used soy, nuts ,cheeses, plain milk,beans & fish. also many of us on the forum found keeping active/excersising to be energizing for both the body and soul. in doing this you won't wind up w/ muscle atrophy from the weight loss.

keep us posted and rest up before the insomnia kicks in.

sandy,ucbgal

Tig · Admin

Hello again Mila,

First, here's a link to the best abbreviation list we have, thanks to our friend and member Mallani. You'll find he is a treasure trove of information and most helpful!

http://hepcfriends.activeboard.com/t51085702/forum-abbreviations/

I'm so glad to hear you've decided to start treatment! It seems like quite a stretch but it's so doable and we're ready to help you through it. So good luck and plan for success, we'll be cheering for you all the way! We will also look forward to your input and help along the way too. We all start where you are right now and trust me, you'll learn more about HCV and the treatment process here than you thought possible! We then try to share our knowledge and the experiences learned with others. It's a win - win proposition! You've met a super group and everyone wants to help you with this. We do it because we care and because it's the right thing to do (oh, and we like it!)

Generally the best thing to remember is to keep your supplement intake to a minimum. As Jill mentioned a multi vitamin (Centrum is good, I take that) without Iron. That's really all you should take, all you need to take. You don't want to have a build up of extra stuff that can potentially change lab results, not to mention many of them really don't provide much benefit. Whatever you do, always talk to your doctor before taking anything! Some supplements, like St Johns Wort can be very dangerous while on Tx. Be cautious and let your HCV meds do the job! Don't consider any alternative treatments, they simply DO NOT work!

As for diet, I eat everything. I ate red, white and some pink meat too. What is important is that you eat a nutritious, balanced diet. We have Vegetarians, Vegans and some Carnivores here, ha! But we all do our best to eat the healthiest food our choice of diet provides. There are a number of ways to do that and people here will help you along the way. I can recommend drinks like Ensure, etc., that are very good when your nutritional intake suffers. There's lots of good stuff in there and it really helps at times to have it on hand. You've got to eat right to keep your strength up! You also need to drink water until it flows through you! Try to drink 2-3 liters of good filtered water every day! That's very important!!

There are a few people here that have taken Sovaldi that will talk to you soon. The cost of it has just been released and we've discussed it here in length. Most people are angered by the high costs, but it's so new there aren't many people here that have had to pay for it yet. You're one of our first! Lucky you, really!!

I'll let Sandy discuss those tests with you. She'll check back soon. You can use the search bar to find blood test information. There's a lot of it. CBC is a complete blood count and a test they use to monitor anemia through Tx. There are several you'll become familiar with in short order! You're going to be so wise and knowledgeable when you're successful with Tx, you'll be amazed, lol!

I know this was lengthy but I hope I answered some of your questions! Talk to you soon smile

Tig

Mila · Member

Hi again!

You guys are great!!! Its good to know that there are things you can do to alleviate the side effects and it seems from what Jill said that the SVR is around 90% with 24 weeks. So, okayIm convincedIm going to do it!

Ive never been on a forum before but reached out because Im so brain-foggy and was overwhelmed trying to research all this on my own, especially with only a week to go before treatment begins. Perhaps my experiences will be of help to others, too, so Im both grateful to be here and happy to share.

Tig, I need to get labs done this next week before starting the treatment. After I get the results, Ill find the Introduce Yourself thread and post the results as youve suggested. I dont really understand all the tests nor all the lingo, though, (thanks for explaining SFX!) so I might need some assistance figuring out what would be helpful for you guys to know. I also havent quite figured out how to navigate and find info, so thank you for the link!

Jill, thank you for answering my question about Sovaldi and possible viral mutation AND telling me that what I had was alpha interferon monotherapy. I injected myself EVERY single day. Anyway, I do know never to take a vitamin with iron with Hep C, but you said to keep supplements to a minimum. What should that minimum be? The only thing I occasionally take now is D with Calcium & Magnesium and sAME, but wonder about things like NAC, Alpha Lipoic Acid, CoQ10, EFAs and, of course, Milk Thistle. I should probably take a multivitamin but have trouble tolerating the so-called natural ones. I can handle something like Centrum but have read that they just go right through you. What have people found helpful? I dont believe that I eat enough to get all the proper nutrients from food (nor that you can be sure that food these days even has all the nutrients.)

Diet Bread, pasta and my sweet tooth are my downfallI dont really cook and order out a lot (not fast food) but Im going to try to give this my best shot and eat well. The biggest problem with restaurant food, I think, is how much oil they put on everything. Red meat is out, right? I was reading also that you should avoid high-glycemic foods like white rice, potatoes, certain fruits, etc. True?

Sandy, what treatment are you on and how are you doing? After I begin treatment, my doctor wants me to come in after 2 weeks to test for anemia, and monthly thereafter. What is cbcs and cbs? And what does eot and Procrit mean? Does tx mean treatment? Is there someplace that has a list of all these terms and abbreviations?

So, you say that you exercised up a storm. Back in the 90s I was very athletic, but have increasingly found that exercise made me even more fatigued rather than energized. Heck, any type of exertion is difficult now. I get exhausted just trying to get up to get showered and dressedand, I know this sounds silly to most peoplebut getting up or especially having to go out creates more messes and work like clothes that have to be washed and put away, or dirt tracked in, or a car that needs gas or maintenance, so its easier just to confine myself. Exercising means lots of sweaty clothes and showers and hair washing... Pathetic, huh? However, I started today with a 10 minute non-sweaty walk. Perhaps my ex-athlete self needs to grasp the concept that it isn't "all or nothing," and that just being more active IS "exercise?"

Are there any alternative/complimentary treatments that people have found beneficial?

One last question: Why wouldn't everybody, especially Genotype 1 patients, immediately begin the Sovaldi/Ribaviron? I do understand that not everybody has insurance (and DON'T get me started on the medical system!!!) My question is in regards to those who do have insurance, though--is it still too cost prohibitive with some people's co-pays? OR, are there actually some medical reasons not to do it?

If there is anybody else on the forum starting Sovaldi/Ribaviron, it would be fantastic if they would also share their experiences. Would we each do so in our own thread, or would we start a combined thread?

Thanks again for all your help and support! I sure hope we ALL can beat this thing.

ucbgal · Senior Member

mila,

welcome this forum has been a life line during my 6 mos. on tx. i don't know much about the new treatment you'll be on. nevertheless i have a few tips about riboviron. do get a baseline of your cbcs prior to meds. i have always had meditteranean anemia/thalessmia minor w/ hemoglobin ranges of 10 to 11 prior to meds. if you already have fatigue to begin w/ go to a hemotologist to examine cause. request weekly cbcs to test levels. when the counts get to low there's blood transfusions & procrit. i'm 19 days eot w/ a proud reading of 9 for hemo & still on procrit.

this is doable alone. for the last 4 mo. of tx i fired nurses aides, was alone, exercised up a storm, kept the faith and did it all. fortunately i live in a large condo building w/ caring neighbors and relied on the kindness of strangers while doing errands alone. put a smile on your face and the world will smile back at you

also i believe there are a few people here on the forum starting the new treatment. best wishes for few sx. finally do read up on the sx & buy all the otc solutions for the sx's you know your prone to and switch to a pharmacy that delivers meds to your home .

sandy,ucbgal

-- Edited by ucbgal on Monday 30th of December 2013 01:50:35 AM

-- Edited by ucbgal on Monday 30th of December 2013 08:05:28 AM

Tig · Admin

Mila,

I wanted you to see this without having to search for it. It's one of our threads that discusses the drug combo you'll be on. It's full of info and personal thoughts from our members. I think you'll find it very interesting! Good reading to you!!

http://hepcfriends.activeboard.com/t53073999/a-journey-through-the-twists-and-turns-of-sofosbuvirgs-5885-/

Tig

Cinnamon Girl · Guru

Hi Mila, welcome!

Yes, you would have been treated with interferon alpha monotherapy in 1995, and you would have needed several injections a week as that was before pegylated interferon was introduced in 2001, which is formulated to last longer in the body. Must have been dreadful!

You should do very well on the the Sovaldi/Riba combo. From the clinical trails data you should have an 87% chance of success as you are treatment experienced, assuming you don`t have cirrhosis. When Gilead extended the length of the clinical trials for genotype 3 to 24 weeks (in the `Valence` trial) that pushed the success rates up quite substantially, which is why this is now the FDA approved duration.

Ribavirin does come with some well known side effects but you should have no problem going though the 24 weeks living on your own, and it will be nothing like what you went through on your previous tx. Permanent or long lasting health issues related to Hep C treatment tend to be more associated with interferon, so I wouldn`t let that worry put you off. And you will quite likely find that your levels of severe fatigue will improve once you`re finished tx and cleared the virus. I`m sure it will be worth doing!

Sovaldi is a NS-5B inhibitor and so is supposed to be highly resistant to viral mutations, but at this point in time it`s difficult to say exactly what your options would be if the treatment failed. On the other hand there are some other excellent drug combos in the pipeline if you have time to wait.

As far as diet is concerned, the best thing is to aim for a healthy diet high in fresh fruit and vegetables, and avoid eating too much processed food products which are likely to contain high concentrations of sugar, salt and fats. Drink adequate fresh water to keep yourself well hydrated, and keep supplements to a minimum. If you take a vitamin and mineral supplement, make sure you chose one free from iron.

Wishing you the best of luck!

Tig · Admin

Hi Mila,

Welcome to the forum! We're glad you found your way here and hope you stay with us as you move forward with treatment. This is a great bunch of people and we're here to answer questions, give you opinions and most of all to offer friendship and support. You'll see that there is likely no kinder a group of people than you will find here!

I'm sorry you're having to deal with this at all, but you're treating at a great time in the treatment picture. The new drugs, like Sovaldi (Sofosbuvir) are offering excellent rates of success and you're right, rates in the 90 percentile are being reported in GT 3 patients. Those are darn good odds considering what they were when you and I did interferon mono therapy back in the mid 90's! The side effects (SFX) from Sovaldi are relatively mild according to reports and we've got members here that will introduce themselves that have completed trials with it or are currently in a phase 3 trial. I'm sure their info will be quite helpful for you. The SFX from Ribavirin are well known and can present the self in a number of ways. I found that I experienced some anemia, skin rashes, mild to severe headaches and sun sensitivity. Others may share additional SFX but the thing to remember is they are very tolerable and easily controlled if they are troublesome. We can suggest some great ways to get past those problems and hope you'll let us know and help if those problems occur. You can be comforted knowing that a lot of those nasty SFX from interferon won't be a problem this time. That stuff is responsible for many unpleasantries and thankfully you don't have to deal with it again! YEAH!!!!

There are always new drugs in the pipeline and you'll hear about them from others here and you can use our search function at the top of the page. We've got tons of great info on so many things, I really recommend you spend time searching these pages, they're loaded!! But you're fortunate to be on one of the best dual combos available for GT 3. I would be very happy to have that opportunity were I in your shoes. It's a very positive chance for you to reach SVR!

As you move forward with treatment, we'll have lots of opportunities to discuss diet and exercise routines. There are some great ideas on these pages and we've got people that are very educated on supplements and dietary suggestions. Once we get past the introductions and preliminaries, you'll get the chance to discuss those ideas in depth. Why don't you take a few moments and go to the "Introduce Yourself" thread and let us know a little bit about yourself and some history. Things like lab tests, biopsy results and treatment histories really help us to respond to your questions. If you'd like you can add a few items, like I have at the bottom of my posts. You can add that in your Profile section under "Signature" .

I look forward to talking in the future! Take care and stay in touch!!

Best, Tig

Mila · Member

Hi, everybody! I'm new. I was diagnosed with Genotype 3a in 1994 and have always had just slightly elevated labs...but occasionally even normal. However, extreme fatigue and other symptoms are what led to my diagnosis. In 1995 I went through a year of pure hell of daily Interferon injections; even the doctor was impressed that I didn't quit . Was that called interferon A? I regret going through that for a 17% chance as, despite the doctors claim, I believe it caused permanent side effects such as neuralgias, more fatigue, and brain fog.

Anyway, my current doctor had his office call me the week sofosbuvir was approved but I'm waiting to start until after Jan 1, for insurance reasons. The Ribaviron I'll be on is called Ribapak.

My doctor's office automatically set me up with a particular pharmacy where I have been assigned to a "Case Manager." My Case Manager let it slip that their pharmaceutical rep for Sovaldi is MY doctor's brother when he bragged that he'd just been out to lunch with both of them together. I have trouble trusting doctors and pharmaceutical companies so, of course, my first thought was that these two must be in cahoots to make money. Perhaps there is nothing wrong with them jumping on the opportunity...BUT it puts red flags up for me. I will say that they were able to get my insurance company's 3rd party reviewer to approve it in record time, so perhaps there is also some benefit to what at first appears to be a nepotistic conflict of interest.

So, I'd REALLY like to hear from patients!

I read conflicting reports of the SVR for Genotype 3 with the Sovaldi/Riboviron ranging from about 61% (or even lower) to almost 90%. My doctor said 85% when I saw him some months ago...

Genotype 3 requires 24 weeks of treatment and I'm extremely concerned about the Ribaviron because I already have extreme fatigue and headaches. Fortunately, I don't work, but I live alone and know nobody in this city so a friend drives down to help me out every 3 weeks. Is this something I can do on my own?

Has anybody felt as if they suffer from permanent affects they attribute to Ribaviron?

I've been trying to research Sovaldi + Ribaviron and have learned that there are new drugs in the pipeline that won't require Ribaviron AND will be more successful with genotype 3. Daclatasvir was one of them. Does anybody know anything about this?

Another question I REALLY wonder about is, if sofosbuvir/ribaviron doesn't work for me would the virus then become less responsive to a future treatment with sofosbuvir + daclatasvir (or whatever?)

I'd also love to hear suggestions about diet recommendations and supplements--and I currently get zero exercise so should probably start walking or something.

Here's a link I found with info re SVR, and links to other info: http://www.natap.org/2013/AASLD/AASLD_92.htm

Thanks in advance for any info or advice, and also any personal experiences with ribaviron!

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