Author Topic: Just Started Harvoni and Ribaviran (Read 45991 times)

Long_Haul · « **on:** January 12, 2015, 10:22:29 am »

New to the forums, I am into day 11 of treatment with Harvoni and Ribavirin. My history is as follows. In the mid 60's I was in the Air Force and believe I was exposed to HCV during the infamous Pneumatic inoculations. The "gun" was covered with blood from the 200 plus people that went through the line before me.
Liver enzymes were elevated when my blood was screened during donations to the Red Cross.

My first treatments was Interferon and Ribavirin were in 2000 after having a biopsy that showed cirrhosis 48 weeks later, I was classified as a no-responder(NR). Around 2005 I tried a regimen of Pegasis and Ribavirin with NR after 26 weeks.
Fast forward to 2012 and a triple-combo including Interferon, Ribavirin, and Incivek.
I made it 22 weeks ending up with rash and open sores over about 80% of my body.
I had to stop treatment and miss work for the first time in all my previous treatments. My viral load had been undetectable. the week previous, but 2 weeks later it was 348.

My Gastro Doc has been a great support through all of this ( I just retired from working in the same hospital where he practices.) He recently suggested Harvoni and I was lukewarm to the idea, but after research and reading the awesome posts here, I decided to go for it.

Insurance was not an issue for me, I have BCBS and someone from Accredo called me a week after we decided to do TX. I had to push a little to get status, but after 3 calls, I was approved. Everyone from Express Scripts and Accredo have been great to deal with, which is not what I was prepared for. They have had nurses call and do follow-ups.

I have had minimal side effects when compared to what I endured in the other TX. I drink about 80 ounces of water or more a day to keep the headaches at bay and have had some brain fade and fatigue. I don't take over the counter medicines unless I am desperate. Being retired is a heck of a lot better for doing TX. I rest when I want and my wife has been a real supportive trooper through all of my TX.

I take my Harvoni and Ribavirin in the morning with breakfast and then have a late dinner and take my evening Ribavirin with it.

I was taking a "wait and see" approach when I started this, but after reading your daily posts, my excitement and enthusiasm has been given a turbo boost. Thanks for all of the information, encouragement and support you all give. This is a great community. Let's go "Slay the Dragon" !

AL

kate0b1 · « **Reply #1 on:** January 12, 2015, 07:05:45 pm »

Welcome Al, I am new here also, its a great support team, I did the same triple therapy as you and like you made it to 22 weeks, I did not join a forum then a wished now that i had, it was really hard doing that tx even with great support from my husband. i am finishing my 4th week and get my first labs on friday ( and with a little help from my friends here trying to stay chill about it). This tx is a whole new world and the sides have been minor, occ h/a, occ stomach ache, other than that I feel really well and am sleeping great.

kate

Long_Haul · « **Reply #2 on:** January 12, 2015, 07:56:51 pm »

Hi Kate,
I was so spent after the triple therapy. I am the first recorded case for being severely allergic to Incevek/Teleprevir. I would not wish that experience on my worse enemy. My wife was such a great help with tending my "wounds" and providing plenty of encouragement.

I am sleeping OK, so I can cope better with sides if I get rest. Glad to hear you are doing well. This is such a better TX than we have ever done with much better results. Good luck with results on Friday and remember SVR is the real goal here.

Are you taking Riba as well or going 12 or 24 with just Harvoni?

Let's hope we stay mild with the sides.... ;^)

AL

kate0b1 · « **Reply #3 on:** January 12, 2015, 08:03:05 pm »

Al, I am on just harvoni for 12 weeks (four down 8 to go), I was a hot mess at the end of the 22 weeks, I don't think I could take the riba again, it took months to get my labs stable (longer to grow hair again) cute wig I had though lol

Long_Haul · « **Reply #4 on:** January 13, 2015, 10:18:06 am »

Kate,
I seem to be doing OK with the Riba for now. I did get quite anemic the last time, but they gave me a shot to help the blood count. I was ok after that.

I am a good distance toward being bald, so I don't worry too much about the hair thing. I know it is much more of an issue for women. My wife went through chemo for breast cancer a while back and had a decent wig. We got our diagnosis' the same day, BC for her and HCV for me. Not a good day. The good thing is we are still here kicking butt!

Hope you get your script issue taken care of quickly.

AL

kate0b1 · « **Reply #5 on:** January 13, 2015, 07:18:10 pm »

yikes, that must have been a hellish day, Is your wife doing well now? Yea I'm pretty sure the hair thing is worse for women lol. Breast cancer is a tough road to hoe, I have a good friend that went though it (she is doing well 5 years out).
Ugh, i left a message at my docs this am, my pa is off on Tuesdays, but she will call me tomorrow, I am their first pt on harvioni so I'm kinda rock star there lol (at least this month).

kate

Lynn K · « **Reply #6 on:** January 14, 2015, 12:02:18 am »

Hi Long Haul

Ex Army here. I could blame the air guns, I could blame the tattoo at the GI bar in Germany, or I could blame messing with the needle 3 times in 1979 but my bet is on the last one. Doesn't really matter how we got here we are all here now.

I started 24 weeks of Harvoni Nov 18th and have been working with my doctor to have Riba added to give me that few extra percentage points of push to hopefully beat the dragon this time especially as I relapsed on Sovaldi Olysio 12 week treatment last summer. This makes try number 5.

Good luck to you and all the others fighting the battle with the dragon

kate0b1 · « **Reply #7 on:** January 14, 2015, 06:14:02 am »

OMG lynn, I'm just realizing you did interferon so many times, I can't even!! once was to much for me, I remember thinking i would never do it again, but i think if it was my only option i guess i would, we talked about the S/O treatment when i relapsed but my doc knew this was just around the corner so he wanted to wait and see and let me get stronger. I can see now why you wanted to add the riba. I would have wanted to also even though I hated it.
kate

Long_Haul · « **Reply #8 on:** January 14, 2015, 04:41:08 pm »

Kate, My wife is fine now, some tough stretches since the first diagnosis, but everything is OK, thank God.

Lynn K, So true, it really doesn't matter how we got it. Beating it is the goal. My Doc called me just before I was to start and told me he wanted to add adding in Riba. His thoughts were that the data was showing the 12 weeks of Harvoni/Ribavirin was as effective as 24 weeks of Harvoni alone. He thought I would object, but having done 3 rounds before with Interferon and Ribavirin I did not bat an eyelash. I want to be done with this. I was not real excited to do TX again, but all of the info and support on this forum has me stoked to get this done.

A big thank you to everyone on this forum, YOU ROCK!

AL

nicole_1234 · « **Reply #9 on:** January 14, 2015, 05:44:26 pm »

Hey guys, am I wrong or didn't I read adding Ribavirin to Harvoni in the trials made no difference in the SVR outcome as the ones who took Harvoni exclusively and thats why they are prescribing it by itself usually?

Long_Haul · « **Reply #10 on:** January 14, 2015, 09:53:56 pm »

For what it's worth, here is the link to the article I read.

http://www.hepmag.com/articles/Harvoni_ribavirin_cirrhosis_2501_26459.shtml

Apparently the looked at it a little closer and changed the opinion.
Let me know what you think.
Enjoy,

AL

50cal111 · « **Reply #11 on:** January 14, 2015, 10:23:55 pm »

I started Dec22,214 ON HARVONI
LIKE YOU, I BEEN IN HE MILITARY 1979-2004 AND THAT GUN THAT WAS USE FOR ALL, DID ME IN.
YOU KNOW THEY (MILITARY) WILL NOT OMIT IT.
BUT MY QUESTION IS WHAT IS THE PROPER FOOD TO EAT THAT WILL NOT HURT TREATMENT OR LIVER, ANYONE PLEASE HELP, I BEEN EATING BAKED CHICKEN AND VEGGIES

Lynn K · « **Reply #12 on:** January 15, 2015, 01:27:17 am »

Hi 50 Cal

Army 76-80 84-88 Germany both times

Try looking up heart smart diet lots of info is available I have been told it is also considered a liver smart diet.

Just a suggestion you really should avoid all caps looks like you are shouting.

Hi Al and Nichole

I also saw a round table discussion between 4 experts who were presenters at the AASLD conference last year in Boston. When they were discussing folks like my self prior non responders with cirrhosis GT1a as far as using riba or not the consensus amongst them was to give those patients all the tools at hand for the best opportunity for a cure. Also the current AASLD recommended treatment for decompensated GT 1 is Harvoni with lowered dose riba for 12 weeks. The trials I have seen are 12 weeks riba and Harvoni being essentially equivalent to 24 weeks of riba.

If I get the riba my treatment will be 9 weeks Harvoni plus 15 weeks Harvoni and Riba. So kind of a hybrid treatment. I don't think I have much more time or opportunity to get rid of hep c if this treatment fails so we are going in with all guns blazing.

Long_Haul · « **Reply #13 on:** January 15, 2015, 08:21:40 pm »

Thanks Lynn, great information!

AL

DREJ · « **Reply #14 on:** January 22, 2015, 01:08:07 am »

Long Haul

Your story sounds alot like mine. Was in Army '73-'77. Not sure if the vaccine gun got me or a kidney surgery I had in '79. Was diagnosed in 2000. Already had cirrhosis. Tried interferon and ribavirin in 03. Pretty rough. Didn't work. Had liver transplant in June '04. Tried pegasys in '05. Still didn't work. In '12 asked for Incevik and was turned down by insurance. In Jan '14, transplanted liver failed. Was lucky and got a second transplant. In Sept '14, requested Sovaldi/Olysio and insurance refused again. In Oct '14 requested Harvoni and insurance turned down again. Wrote them a letter with the reasons why it would be in their best interest to approve Harvoni (cost of a possible third transplant) and they relented. My doc recommended that I also take ribavirin and insurance balked again. Decided to not fight them and paid for ribavirin out of pocket. Today was day 13 for me. Have been having issues with headaches and sleeping, but after what I've been thru so far, seems minor. Go for first blood work tomorrow. Hoping platelets are not too low and anti-rejection meds are still in range. Doc told me they might have to adjust dosage. Hoping for the best.

Don

kate0b1 · « **Reply #15 on:** January 22, 2015, 06:11:35 am »

good morning Don and welcome, good for you with your fight, except for the riba, the sides from the harvioni are almost not at all, I am only on the harvioni, but did riba in the past, i was pretty glad i didn't have to this time but i surly would have if my doc wanted it, Lynn k is also on the "hybrid" tx, so there is a lot of support here. best of luck on your journey.
PS just how much is riba if you don't mind sharing? Im curious simply because I'm nosey lol.
kate

Lynn K · « **Reply #16 on:** January 22, 2015, 06:17:56 am »

I am paying $3.33 for a 28 day supply I guess based on my copay would be $10 for 3 months. Have to check my insurers web site to see the cost they are paying.

DREJ · « **Reply #17 on:** January 22, 2015, 08:04:48 am »

Kate0b1

I'm getting it from U of Neb med center pharm. Costs $60.80 for 28 days. From walgreens would have been $3.30 per pill. Taking 3 per day. Thanks for the words of encouragement.

Don

Long_Haul · « **Reply #18 on:** January 22, 2015, 11:45:48 am »

Welcome Drej, Sorry to hear what you have had to endure. Not paying for the Ribavirin seems a bit petty when they approved 94K for the Harvoni. Best of luck and make sure you take in lots of water during the day, for me it almost totally eliminates the headache component of the side effects.

Good luck with your TX and hope you go undetected soon. Keep us posted on what is happening.

Kate, any results yet?

Best wishes,

AL

kate0b1 · « **Reply #19 on:** January 22, 2015, 06:15:25 pm »

@al, lol i just posted them, I forgot to add the boys to the list (sorry)

, just got them today all labs WNL and HCV UND !
@Don, thats not to bad, i would pay that in a heartbeat if thats what needed, i probably spend that much in coffee a month (oops not coffee, i meant water)

kate

Long_Haul · « **Reply #20 on:** January 22, 2015, 07:24:16 pm »

Kate, I saw the other post first, Awesome, you deserve it!

Take care,
AL

Lynn K · « **Reply #21 on:** January 23, 2015, 02:48:49 am »

Hi Don

Are you taking 3 pills 200 mg for 600mg/day total?

I am taking 2 pills both 600 mg for 1200 mg/day

Long_Haul · « **Reply #22 on:** January 23, 2015, 09:33:15 am »

Hi Lynn, I know you weren't asking me the question, but it would be great for me to see what others are doing. I am taking my Riba twice daily, 3 200 MG tabs in the morning at breakfast with my Harvoni and 3 tabs around 7 PM with my dinner.

Anyone else?

AL

Lynn K · « **Reply #23 on:** January 23, 2015, 10:03:21 am »

Hi Al

Kinda surprised they got me the big pills because I am expecting I will have to dose reduce and having the 200er's would sure make that easier

Good luck on treatment

DREJ · « **Reply #24 on:** January 23, 2015, 10:19:33 am »

Lynn K

I am taking 2-200mg in AM w/Harvoni and 1-200mg in evening. Not sure why the difference in doses. Could be status of liver. I was transplanted in Jan. '14 and liver is still in pretty good shape. AST/ALT was in the 40's before I started Harvoni. Direct Billi was .28. Might also have something to do with me having to take anti-rejection meds.

Long Haul

The reason the insurance co. gave me for refusing to pay for the Ribavirin was that it has not been FDA approved as a combo therapy with Harvoni. They can be real buttheads at times.

Kate0b1

As you stated price of the Ribavirin is small in comparison to Harvoni. I expected the insurance co. to reject me again and was preparing to have to pay out of pocket for it. Was going to take out bank loan, start a gofundme campaign and whatever else it took. Was quite happy when I was approved. Wasn't going to let Hep kill another liver.

Don

Lynn K · « **Reply #25 on:** January 23, 2015, 10:24:25 am »

Hi Don

I had seen that in the AASLD guidelines that they were recommending 600mg per day Riba / Harvoni for post transplant patients.

Good luck on treatment !

Amj1951 · « **Reply #26 on:** January 24, 2015, 07:58:43 am »

Hi everyone, I have a question and I hope it doesn't seem silly. I am on the Harvoni 12 week treatment with 1a.... But what I am curious about is why some people are on just the Harvoni and some are on the Harvoni and Ribavirin?

Thanks in advance and I hope everyone having a great day so far!
Meredith

Long_Haul · « **Reply #27 on:** January 24, 2015, 08:26:56 am »

Hi Meredith, I am on Harvoni and Ribavirin. My Doc's rationale was that I have cirrhosis/treatment experienced and I normally would need 24 weeks of treatment. Trials Results have shown that by adding Ribavirin to Harvoni, the same SVR end result can be obtained in just 12 weeks. Cut the cost almost in half. Not everyone tolerates Ribaviirin "sides" well, so you will see a mix of 12 and 24 because of it. I hope that explains it and you have a wonderful day in Dallas, it was 5 below last night here in VT.

AL

Amj1951 · « **Reply #28 on:** January 24, 2015, 01:19:34 pm »

Quote from: Long_Haul on January 24, 2015, 08:26:56 am

Hi Meredith, I am on Harvoni and Ribavirin. My Doc's rationale was that I have cirrhosis/treatment experienced and I normally would need 24 weeks of treatment. Trials Results have shown that by adding Ribavirin to Harvoni, the same SVR end result can be obtained in just 12 weeks. Cut the cost almost in half. Not everyone tolerates Ribaviirin "sides" well, so you will see a mix of 12 and 24 because of it. I hope that explains it and you have a wonderful day in Dallas, it was 5 below last night here in VT.

AL

Thank you AL. That makes perfect sense! I wasn't sure because I know some who have tried previous treatments are only on the Harvoni and some with the Ribavirin... so was a bit confusing.

Yes, here in Dallas its a beautiful day - 55 and sunny! We are going to go take advantage of it for a while. (Your welcome to keep that 5 degree's there : ) ha!

Enjoy your day!
Meredith

Long_Haul · « **Reply #29 on:** January 24, 2015, 02:00:21 pm »

Meredith, Glad that cleared this up for you.

We could send some of this weather down......... Oh, sorry, you had that a couple of weeks ago.

I was in FLA for a few months and when it dropped down below freezing, I was like a block of ice, even with warm clothes on. Easy to get accustomed to nice warm weather. Enjoy your day as well and a bike ride if you can.

Kate, FEDEX guy in a 4 wheel drive pickup arrived at around 11:15, all is well. I am going to call Monday and order bottle #3 to be delivered as soon as they can and be done with the worry about it.

Do your feet touch the ground yet! I know mine won't if I go UND after next weeks blood test.

AL

Lynn K · « **Reply #30 on:** January 24, 2015, 04:12:41 pm »

Hi Meredith

Yes ditto for me basically the toughest cases get the riba. Like myself as a multiple interferon failure, plus relapsed after being treated with Sov Oly for 12 weeks plus having cirrhosis for 7 years my doctor has also prescribed riba along with Harvoni for 24 weeks to give my my best chance at a cure.

Amj1951 · « **Reply #31 on:** January 24, 2015, 06:59:11 pm »

Hi Lynn, My fingers are crossed it works for you this time! : ) I am hoping for everyone .. me included though this is my first time trying a treatment and knock on wood its been a breeze so far.
Once you clear this if you don't mind me asking... the cirrhosis. Is it expected to get better or at least stabilize?

AL, my parents are in Central Florida and all I hear is how cold its been!! : ) ha! You would think they were in Canada! Its been chilly here, but pretty normal for Texas. I am hoping we might get ONE snow before the end of winter but this year so far its been pretty mild. No real ice which is what we normally get but it did get cold enough that hopefully it killed some of the mosquito's and we wont have the West Nile Virus so bad this summer.

Yes, we went for a bike ride. I got a new 'Cruiser' a couple months ago and love it.
Now I am about to cook a recipe Eric (Mugwump) gave us on another topic. It sounds so good!

Enjoy your evening,
Meredith

Lynn K · « **Reply #32 on:** January 24, 2015, 11:13:24 pm »

Hi Meredith

I guess the belief is the cirrhosis will stop progressing and maybe improve but since I have enough damage that I had esophageal varicies I guess they could still reform so I will still likely need annual upper endoscopies and abdominal ultrasounds and AFP blood tests to monitor for liver cancer and all the regular blood tests every six months.

kate0b1 · « **Reply #33 on:** January 25, 2015, 06:56:56 am »

@AL, im LOLing about the fed ex guy in a 4x4, glad he made it. Are you excited/nervous about your labs? I of course was a wreck and now can start worrying about my june labs (even though i get EOT labs in march). I am also calling tomorrow about my 3rd bottle, i can't even take the stress about them anymore. Also now that it is UND, my good friend Meredith reminded me to get out the new toothbrush lol> Do you have one ready for after next week?

PS i am going to FLA next month and would like some warm weather if anyone has an in with the weather gods.

kate

Amj1951 · « **Reply #34 on:** January 25, 2015, 08:46:06 am »

Quote from: Lynn K on January 24, 2015, 11:13:24 pm

Hi Meredith

I guess the belief is the cirrhosis will stop progressing and maybe improve but since I have enough damage that I had esophageal varicies I guess they could still reform so I will still likely need annual upper endoscopies and abdominal ultrasounds and AFP blood tests to monitor for liver cancer and all the regular blood tests every six months.

Lynn, I feel for you!! I hope it slows down or stops it. I know its different, but my kidney leaks protein and my kidney doctor told me on my last visit, that its a VERY VERY slow thing, but over time studies are showing people who have Hep C and clear it.. that the protein leakage is actually getting better so fingers crossed you'll see some relief.

It will be interesting to clear this disease and then get a year down the road and see how many improvements we all have. I refuse to believe it will be the opposite!! : )

Meredith

Amj1951 · « **Reply #35 on:** January 25, 2015, 09:00:01 am »

Quote from: kate0b1 on January 25, 2015, 06:56:56 am

@AL, im LOLing about the fed ex guy in a 4x4, glad he made it. Are you excited/nervous about your labs? I of course was a wreck and now can start worrying about my june labs (even though i get EOT labs in march). I am also calling tomorrow about my 3rd bottle, i can't even take the stress about them anymore. Also now that it is UND, my good friend Meredith reminded me to get out the new toothbrush lol> Do you have one ready for after next week?

PS i am going to FLA next month and would like some warm weather if anyone has an in with the weather gods.

kate

Kate, Where are you going in Florida? When are you going? I'm trying to remember if you told me and I missed it. They just said it'll be in the 70's here in Texas. You can always come here instead. (Its just a short 12-15 hour drive depending where you are : ) You can go fishing with us. If the weather holds, we are going to go fly fishing for a couple days at the end of next week. (We can pretend its Spring for a couple of days! : ) I love Spring time. All the tulips and daffodils will come up.. well, that ones the squirrels haven't eaten. That is always attractive.. you have this beautiful row going then there are 2-3 missing.....

And yes get those new toothbrushes!!
Meredith

Long_Haul · « **Reply #36 on:** January 25, 2015, 09:43:44 am »

@Meredith, Sure was brisk at 19 degrees with a stiff breeze off the ocean. I was there for four months and then came back to VT to my friend and then to be wife 39 years ago. Married for 37 now

. and I still remember it well, both the cold and the return

. It felt cold. As a northerner, I acclimated and enjoyed the warm weather and it was a cruel reminder of what winter can be like. I would like to see those flowers now, it's suppose to be a blizzard here starting in the AM. I will have to get the mini-bucket loader(Skid Steer) out tomorrow night to push it all back. Looks like I will have 10' snow bank walls along my driveway again by Tuesday evening.

@Kate: Yes, I was surprised we usually have to clear at least one delivery Van out of the ditch somewhere on the road at least once a month during winter. Am I excited, you bet!. I was briefly UND as was forced to finish early on the Incevek and quickly relapsed within a week. This is round 4, so I have no false expectation about the results, but I do have hope for SVR. If it is UND that would be awesome, some value below 100 would be a success for me this early! I did a two mile walk yesterday and rode my bicycle on the trainer as well. Feeling better and have a lot more energy again. Ribavirin make breathing during exertion a bit of a challenge.
My new mantra is Water, water, breathe, breathe, water, water, breathe......
The days on TX are going faster now, so before you know it I will be at 12 weeks.

Looking forward to being free of HCV!
Good luck to all!
AL

kate0b1 · « **Reply #37 on:** January 25, 2015, 01:26:03 pm »

@merdith, i am going to the disney 1/2 marathon (no I'm not running) lol, and 12 hours plus about 2 days to your house !
@al, i was UND the whole time in triple therapy and relapsed within a month so i know how your feeling but this is so different I know we got this beat this time, tx is going really fast, my 1/2 day is this thursday (42 down and 42 to go). just so your ready make sure you get the new toothbrush before this crappy storm comes, ugh double storms for us this week

kate

Long_Haul · « **Reply #38 on:** January 25, 2015, 04:34:53 pm »

@Kate, I use an electric tooth brush and change the tips often. I will probably get a new one even though I have plenty of spare new tips just to be safe. Even though I have a beard, I have always used disposable razors for trimming and shaping. I have a new bottle of mouthwash and plan to soak my clippers in alcohol for a couple of days and will sterilize further once I do a little more research.

When I was first diagnosed, I was always forthcoming with my children and wife regarding the Hep C. We have always made sure that we took precautions to eliminate exposures and that our children knew how to protect themselves from being infected from blood contact. I was trained as an advanced first aid responder where I worked and was occasionally in close proximity with blood from accidents. We have made it a point to have gloves available at home and on the road and my son and daughter are very careful around blood. Both, even as adults, get tested regularly for HCV Antibodies as well as my wife. All negative so far!

I wish our society was better at teaching the population the perils of blood contamination and how to better protect themselves from it. Seems like a simple enough thing to do, but I don't see any movement to do this. Maybe someday after SVR I can be part of doing that. We shall see.

On a different note, yes, it looks like the whole North East will get a shot starting tomorrow. The mini-bucket loader is all fueled up and a new battery installed. Do you have to travel far to work?

Safe travels everyone, drive a little slower and get there safe,

AL

Amj1951 · « **Reply #39 on:** January 25, 2015, 08:24:32 pm »

AL and Kate and Everyone up north. I feel for you : ) I hope the storm is not as bad as they are talking about on TV. AL what is a mini bucket loader? I guess a good old fashioned snow shovel wont get it this time : )

I wish I could send you some of this beautiful weather we are expecting!!

I agree with you AL on teaching about Hep C. For the first time I am seeing commercials about getting treatment but before that... nothing.

Carroll57 · « **Reply #40 on:** January 25, 2015, 10:41:24 pm »

Hello, my name is Carroll. In 1987 I had a test for HIV and AIDS. I was informed that I did not have either but they found that I had non A and B Hepatitis. Did not know what they meant but I was informed that it would go away. Ten years later I was informed that I had Hep C. I would get sick constantly with Flu Like Symptoms. I was given Interferon but did not do well. I became impotent, lost twenty pounds and my white blood cells dropped. I was given Interferon and Rib for a while but did not respond. I was told that maybe a cure would happen in the future. I went to the doctor in 2009 and was informed that I had early stage cirrhosis. I knew that it could happen but was taken back a bit. Last year the wonderful staff at Johns Hopkins gave me hope and told me Hep C would be cured soon. I was apprehensive and did not want to get excited about the new drug. Well I have been taking it for twelve weeks and I feel a lot better. They tested my blood and could not find the Hep C virus. I was informed that I have to take the medication for 12 additional weeks because I have Cirrhosis. I have been doing well and I have great expectation about my future. I pray that all of you get better and takes for sharing your life experience.

Long_Haul · « **Reply #41 on:** January 25, 2015, 10:56:07 pm »

@Meredith, Thank you for your concern for us, it is appreciated. However, we do have some here (a lot) that are ecstatic about the storm, you know who you are, skiers and snowboarders!

What is a mini-bucket loader? Are you familiar with something called a BobCat. They are used for landscaping, sometimes as a forklift and for cleaning with a big brush on the front of it. With a bucket installed, it is a great snow mover. A 5'' wide bucket and an experienced operator can make quick work of a 100' long wrap around driveway.
Their defined name is called a skid steer, as they work a the same as a bulldozer, just smaller and more agile.
Here is a WIKI link that explains it well if you are interested. http://en.wikipedia.org/wiki/Skid-steer_loader

A very useful "tool" and a lot of fun to use!

It would be a great impression if we could get a celebrity to pitch a spot for Media as a frank message about being safe around blood. I have a thousand approaches in my head that I think would get the message across.

Welcome Carroll57, glad you are doing well now. I was first told I had non A or B and they were waiting for it to be classified. I am sorry you had to do the Interferon and Ribavirin route. Can you share which therapy you are on and what Genotype HCV you have? Have you had a recent Viral load blood test done?

Best to you and know all of those on this forum are pulling for you to reach Sustained Viral Response(SVR). Best wishes!

For now, I guess I need to get this head into bed and resting on a pillow.
Have a great night, stay warm and safe.

AL

Carroll57 · « **Reply #42 on:** January 25, 2015, 11:01:30 pm »

I am only taking Harvoni. I take it during the evening hours. I will have to find out about the Genotype HCV that I have. I will also have to ask about the viral load blood test. They would always say that my blood work was always close to normal. I have to ask the important questions about the Genotype and the viral load. I will find out and post a reply.

Long_Haul · « **Reply #43 on:** January 25, 2015, 11:10:25 pm »

Carroll, great to get as much information as you can. It is good to know your enemy a it will help with your decision making all of the way to the end of treatment and beyond. Being informed can help keep anxiety down and your spirits up.
Make sure you drink a lot of water like you did in the previous Treatments. It helps with the side effects. I reread your previous post and saw that you were told they couldn't find the virus, so you are what is called UNDETECTED. That is awesome!

Have a great night and hope to hear how you are doing, please keep us posted.

AL

kate0b1 · « **Reply #44 on:** January 26, 2015, 05:52:59 am »

welcome carroll, this is a great place for info and fellow people on the journey. Im glad you are felling well, your half way done!

@al, I HATE SNOW

kate

Amj1951 · « **Reply #45 on:** January 26, 2015, 09:49:31 am »

Carroll57, To repeat everyone else, welcome! : ) This forum has been a blessing as I go thru this journey to get rid of this disease (I'm on Harvoni, 12wks and I am almost at the end of 3 weeks! YAY!). You'll find good, helpful information from real people, make a few friends, maybe a joke or two, a good recipe now and then and like today, I now know what a mini bucket loader is. Thank you AL I suspect Kate wish's she had yours today... though I would probably be one of the ones thrilled because I like skiing but once I am done, I'd want it to go away!

We attempted to learn to snow board a few years ago up in Colorado. My friend did ok.. me... it was like watching a dead tree... I stood.. and fell... over and over till I called UNCLE! It requires a balance that I am apparently NOT graced with.

Its supposed to be 70 and sunny here in Dallas today and by Wednesday it says up to 77. Yes, I will shut up : )

I hope everyone has a great symptom free day today!
Meredith

Amj1951 · « **Reply #46 on:** January 26, 2015, 09:57:16 am »

Quote from: Carroll57 on January 25, 2015, 11:01:30 pm

I am only taking Harvoni. I take it during the evening hours. I will have to find out about the Genotype HCV that I have. I will also have to ask about the viral load blood test. They would always say that my blood work was always close to normal. I have to ask the important questions about the Genotype and the viral load. I will find out and post a reply.

Carroll57, I forgot to ask, you said you take your Harvoni in the evening. Do you sleep through the night? Like ALL night? I take mine in the morning. After the first few days of minor symptoms.. I feel great, full of energy every day, but I do not sleep more than a few hours since being on the Harvoni. I am up daily at like 4-5. This morning I was awake at 3:30. As much as I hate it, I know I can deal with anything for 12 weeks. (I think I am jealous of people who sleep all night : ) The odd thing is no matter how early I wake.. I am not tired during the day.

Meredith

Carroll57 · « **Reply #47 on:** January 26, 2015, 03:00:56 pm »

I sleep well. I even get in the bed early. I can deal with twenty four weeks of treatment. After thirty years of being sick.

Trenz · « **Reply #48 on:** January 26, 2015, 10:33:37 pm »

Hello Everybody. It seems I have a lot in common with most of you. I'm also not sure how I contracted Hep C and agree it doesn't matter. I have it and I can't go back and undo whatever I did to get it. I've accepted it and I've got to deal with it.

I have the same thought about Alcoholism. Not sure why I have that disease either, but after many years of denial, I finally accepted it and on Feb 10th it will be three years since I had a drink.

I was in the Air Force from 1977-2003. That might have something to do with why I have both of these diseases!! I got the gun during pre enlistment physical and during basic training. And I never missed a happy hour.

After donating blood, I was notified by letter from Red Cross in 1990 that I had non A- non B hepatitis and to see my primary care physician. She said stay tuned, there was no treatment and no information.

Fast forward to 2003 and I was rushed to the hosp because of terrible pain in my abdomen. Turned out it was a gangrenous gallbladder that they removed but they also found I had cirrhosis of the liver.

I did the interferon and ribavirin in 2004. I stopped after seven weeks because I couldn't tolerate the side effects and my viral load was actually going up. I'm geno 1A

Last year I did Sovaldi, interferon and ribavirin for 12 weeks and was undetectable at the end!!. 90 days later it was back.

If insurance approves it, my doc wants me to do Harvoni and ribavirin for 24 weeks. Maybe the third try will be the charm. I hope we all slay the dragon!

Lynn K · « **Reply #49 on:** January 26, 2015, 11:35:23 pm »

Hi Trenz

Wow I thought I was the only one who had their viral load increase while on treatment.

I was in the Army 76-80 and 84-88 but I am pretty sure I know how I got hep C.

Same story I donated blood in 1990 and they said thanks for your donation but don't donate anymore, You have hep c but nothing to worry about see your doctor.

I did the 3 shots a week of just interferon back in maybe 1995 and two tries with interferon and riba. They wouldn't let me do Telaprevir interferon and riba as I had cirrhosis by then. I have had cirrhosis for over 7 years now.

I relapsed after 12 weeks of Sovaldi Olysio at 12 weeks post treatment.

I am taking Harvoni and Riba. I started the Riba later so I will be doing 9 weeks of just Harvoni followed by 15 weeks of Harvoni and Riba. This is my 5th attempt to treat.

Good luck getting your meds approved you should be able to. Insurance has been a pain but don't give up if they turn you down initially. Seems like they have been turning everyone down at first. I hope your insurance is one of the better ones to work with.

Trenz · « **Reply #50 on:** January 27, 2015, 12:08:27 am »

Thanks Lynn. My insurance is with John Hopkins Family Health Plan. Actually, they have been great. After just spending about $200K last year on drugs and then another $50K when I was in the hosp with hepatic encephalopathy in Nov , I think they want to make sure there is a high probability that the Harvoni will work. I'm scheduled for a liver ultrasound next week to confirm the cirrhosis is at stage III. We shall see what happens after that.

Amj1951 · « **Reply #51 on:** January 27, 2015, 07:24:57 am »

Trenz, Congratulations on your sobriety!! That is huge! Its going to go a long way in helping you once you once you clear this nasty disease! You will find a lot of support here.

Good Morning Lynn, everyone else, I hope your all having a great start to your day!!

Meredith

fllazylady · « **Reply #52 on:** January 28, 2015, 10:27:37 pm »

Long_Haul
Mayo Clinic called they are adding Ribaviren to my Harvoni I am still detected with virus after four months of treatment. Did you have any of the side effects with Ribaviren? I had no sides with Harvoni so far. I'm pretty bummed out by my labs today. Under 15% but still detectable..Did you start with Harvoni. How long have you been on treatment? Sorry for all the ?? I'm frustrated with my results..
Paulette

badbradley · « **Reply #53 on:** January 29, 2015, 08:01:59 pm »

Hello fllazylady,
I searched back some and discovered that you are in fact just finishing week 12 of 24wks of Harvoni correct? I remember that you started the same day that I finished my treatment on Nov. 10th. That is good news in that it gives you 12 more weeks rather than 8 more wks of treatment to knock this thing out. The added Riba is great news, more ammunition!! There are a couple of others here that have the same addition of Riba after 8 or more wks on Harvoni. LynnK is one I don't remember the other.
12 more weeks to win this battle. You will slay this dragon! Best to you.
Brad

fllazylady · « **Reply #54 on:** January 29, 2015, 08:22:53 pm »

So Brad are you clear the virus now? How are you doing?

Long_Haul · « **Reply #55 on:** January 29, 2015, 08:26:38 pm »

Hi Paulette, did you get my PM?
AL

badbradley · « **Reply #56 on:** January 29, 2015, 08:31:35 pm »

Quote from: fllazylady on January 29, 2015, 08:22:53 pm

So Brad are you clear the virus now? How are you doing?

I go for the SVR12 test Feb. 3, should have results about a week after. I was undetected at the end of treatment. I haven't had any further tests since that time so this is for all the marbles. Yes, I'm getting a little nervous about it!
Brad

fllazylady · « **Reply #57 on:** January 29, 2015, 08:52:53 pm »

I will keep you in my prayers..what happens if you don't clear the virus is there any more treatment afterwards? Did your doctor have any input as to why the treatment didn't work for you? What stage was your HCV?
Paulette

badbradley · « **Reply #58 on:** January 29, 2015, 09:14:50 pm »

If I don't clear the virus I will Re-power, keep my immune system as strong as possible in preparation for plan B. I will continue eating healthy and I will know that on my down days I will have a soft place to land with the support and compassion found on this forum! TOGETHER WE ARE STRONG! When one falls, we help them back up and if I fall, I will not stay down!
Thanks for the prayers and I am praying for you too! Keep coming back here because it's a pretty cool place to be!
Brad

Long_Haul · « **Reply #59 on:** January 29, 2015, 10:34:33 pm »

Brad, Sending positive thoughts and a hope none of the thoughts of a new TX is needed. Stay positive and watch for good results,

Best wishes,

AL

Lynn K · « **Reply #60 on:** January 30, 2015, 03:49:19 am »

Just got my 1 week on Ribavirin results looking for changes in hemoglobin:

1/13/15 before Riba
HGB 11.1 - 15.9 g/dL 13.7

1/27/15 after 1 week
HGB 11.1 - 15.9 g/dL 11.9

So still in normal range

Mugwump · « **Reply #61 on:** January 30, 2015, 04:27:22 am »

Quote from: Lynn K on January 30, 2015, 03:49:19 am

Just got my 1 week on Ribavirin results looking for changes in hemoglobin:

1/13/15 before Riba
HGB 11.1 - 15.9 g/dL 13.7

1/27/15 after 1 week
HGB 11.1 - 15.9 g/dL 11.9

So still in normal range

Great! When I did peg/rib it didn't bring down my HGB until after about 7 months and my doc had to reduce the med. You should do just fine on the short course.

I hope I will not have to boost Harvoni with Ribaviron after 12 weeks on Harvoni but we will see.

HCV genotype 1a is going to be beaten even if Harvoni is not the final answer I am sure that soon there will be long term meds based upon the components in Solvaldi that deliver viral inhibitors directly to the liver that could keep the virus in check long term the same as drugs for the treatment of HIV are starting to do. The genius Michael Sofia from New Jersey showed the way and without a doubt he deserves a Nobel Prize.

We have all endured much and hopefully in the very near future others will not have to go through the nightmare we have experienced after being diagnosed with this disease.

Keep up the fight HCV is down for the count and even if it gets up and rears its ugly head I know we will kick it down again!

Eric

Lynn K · « **Reply #62 on:** January 30, 2015, 04:33:17 am »

Thanks Eric

I just hope my cirrhosis can hold off long enough if I fail treatment number 5 for the next greatest.

I am worried about running out of time with this 7 year old rock that once was a liver

fllazylady · « **Reply #63 on:** January 30, 2015, 08:46:03 am »

We will be survivors my friend..I'm going on 28 years..we will be free of HepC I'm sure of it..we need to see it in our mind and truly believe that we are worthy..
Sending you Light n Love from Florida...
Paulette

Lynn K · « **Reply #64 on:** January 30, 2015, 03:34:25 pm »

Hi Paulette

I guess I got hep c in 78-79 time frame. So about 37 years infected and have known since 1990 so 25 years of living with this thing. And then the cirrhosis diagnosis in Jan 08. It has been a long road.

Thanks for your encouraging words may we all be able to escape from this illness in 2015

kate0b1 · « **Reply #65 on:** January 30, 2015, 05:34:50 pm »

@lynn, those are great labs! my H&H dropped like a rock by week two, i think that a big reason i felt so awful (oh am maybe interferon lol). keep up what ever your doing to keep it up.
kate

Lynn K · « **Reply #66 on:** January 30, 2015, 10:13:10 pm »

Hi Kate

That was only week one but at least still in normal range. We will see what week 2 brings.

kate0b1 · « **Reply #67 on:** January 31, 2015, 06:20:59 am »

lynn, how often will they do labs? I cringe every time i think about those meds, your a brave girl in my mind. I am in awe of anyone who did the old stuff more than once. I guess i would do it again if my doc said that was my option, but jeez it was rough. (i just donated my wig BTW).
anyway so two weeks down and ten to go right? do i have my weeks right?
kate

Lynn K · « **Reply #68 on:** January 31, 2015, 06:25:58 am »

11 weeks down and 13 to go on Harvoni and 2 weeks of riba down 13 to go

I will be doing a CBC weekly at least initially for the riba and was already doing general labs for the Harvoni monthly for the Harvoni

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