Author Topic: Harvoni Side effects (Read 2192454 times)

Lukey · « **Reply #600 on:** January 13, 2015, 04:59:56 pm »

Quote from: jayme1017 on January 13, 2015, 09:24:13 am

oh sorry...obviously you would have checked into it
I have wanted to take something for my gaseous stomach lately which started at week 4 (one week ago) but have just avoided taking anything more because I am paranoid than anything else. I was told it was ok to take Tums, GasX, or immodium as long as it was 4 hours apart. I am hoping the gas is due to my improved digestive system now that my liver enzymes are in normal range...

Improved digestive system, that sounds like something I'd love to get, and I probably will sooner or later. I have fought a sluggish GI tract for years. Would love to improve it.

Lynn K · « **Reply #601 on:** January 13, 2015, 10:37:06 pm »

Hi Joek999

I sure hope it works for me the odds were in my favor on Sovaldi Olysio but I guess some aren't as fortunate as others.

With my history and plus the Sovaldi Olysio relapse I am on 24 weeks of Harvoni. After taking to my doctor we are going to add Ribavirin if my insurance will approve. so kind of a hybrid treatment right now 8 weeks of Harvoni done and whenever we can add the Riba all the way to the end of treatment with riba.

If I have the Riba next week that will be 9 weeks of Harvoni and 15 weeks of Harvoni Riba hopefully that will do something good.

Sweetie1 · « **Reply #602 on:** January 14, 2015, 01:12:22 am »

HI, I am starting month 3 on Harvoni. I had some headache/neckaches the first few weeks but these are better. I think the Harvoni may be constipating thus maybe causing the headaches. Cereal at night really helps. I had severe itching and it went away after about 2 weeks on Harvoni (amazing) I get very tired a couple hours after taking it. My nose is very congested though don't know if that is from the weather or the medicine. All in all very little to complain about. My 4 week blood test showed viral load undetectable. Hope it will still be that way 3 months after stoping. Good luck to everyone.

Mugwump · « **Reply #603 on:** January 14, 2015, 01:13:09 am »

Quote from: dragonslayer on January 13, 2015, 03:49:06 pm

Can you please provide evidence for your statement that Harvoni requires extra hydration to work? I see nothing about it in the detailed prescribing document, but maybe I missed something.

The infectious disease specialists that are treating me told me specifically that 2 liters of water per day is the absolute minimum while using Harvoni and they use the physicians info directly available from Gilead. So I will take their word for that.
I do not concern myself if I exceed the 2 liters as long as it does not come from a gallon or two of tea or coffee!

When I first started taking Harvoni it caused me to become dehydrated because I did not follow the recommendations on the first day or two thinking that I was drinking enough liquids with just tea and coffee. It was a mistake as I became quite dry mouthed and anxious because of dehydration and a slight headache and lack of sleep. As soon as I started following the recommendations of the health professionals and drank more water the problems disappeared.

So I will keep hydrating myself carefully as it is working to moderate the known Harvoni side effects of "brain fog", lack of sleep, anxiety. I am not thinking of having a water pack with a tube attached to a back pack water jug and drinking water till my kidneys float off to Texas BUT a sensible increase in water intake seems to be the ticket for me, at least.

Perhaps someone else has different advice from their doctors and specialists but mine all told me to drink more water on this med!

Regards
Eric

Mugwump · « **Reply #604 on:** January 14, 2015, 01:16:13 am »

Quote from: Sweetie1 on January 14, 2015, 01:12:22 am

HI, I am starting month 3 on Harvoni. I had some headache/neckaches the first few weeks but these are better. I think the Harvoni may be constipating thus maybe causing the headaches. Cereal at night really helps. I had severe itching and it went away after about 2 weeks on Harvoni (amazing) I get very tired a couple hours after taking it. My nose is very congested though don't know if that is from the weather or the medicine. All in all very little to complain about. My 4 week blood test showed viral load undetectable. Hope it will still be that way 3 months after stoping. Good luck to everyone.

Hello Sweetie1 and that is fantastic to hear! I too am having about the same experience with this med.

nicole_1234 · « **Reply #605 on:** January 14, 2015, 02:41:28 am »

Paul: I don't think you need water for Harvoni to work, it just dehydrates you so it's benefici to drink lots of water so you feel good, just like they say anytime you are sick.

Katie: I saw you wrote about sugar cravings. I started a diet a few days ago to deal with candida issues called the Body Ecology Diet and they recommended eating probiotic food such as cultured vegetables, kefir (milk, goat milk or my fav young coconut kefir) and apple cider vinegar (which I mix in a glass of water with 4 drops of stevia).

They say these foods relieve sugar cravings and they really did for me. Also if you can find stevia at the health food store it is very sweet and supposedly good for you. I haven't researched outside the book though. But a little goes a long way and you can put a couple drops in your tea or a smoothie and that might help me the craving.

Katie · « **Reply #606 on:** January 14, 2015, 02:55:57 am »

Thanks Nicole. Candida is a difficult thing to deal with. I had a horrible systemic case of it about 10 years ago. I did pH tests and did the lemon fast and then did the probiotics and eventually got rid of it. My acupuncturist/chiropractor was a big help too, so I wish you good luck with that.

I don't need the sweetener in my apple cider vinegar. I just take it straight! Always have loved vinegar and don't mind the little "shudder".. HA!

I have just decided to clear the house of all sweets and just have fresh fruit available. Seems to be OK but I actually get a bit anxious at night wanting sugar. When that happens I just have a small bowl of good cereal with a little bit of banana or blueberries. I am really working at it ( as I grind my teeth) HA!

Mugwump · « **Reply #607 on:** January 14, 2015, 03:42:41 am »

Quote from: Katie on January 14, 2015, 02:55:57 am

I have just decided to clear the house of all sweets and just have fresh fruit available. Seems to be OK but I actually get a bit anxious at night wanting sugar. When that happens I just have a small bowl of good cereal with a little bit of banana or blueberries. I am really working at it ( as I grind my teeth) HA!

I hear you and sugar craving is a curse without a doubt. I purchased an inexpensive nifty cheap digital food scale to use for the duration of this treatment. The experience cooking for seniors with diabetes and other conditions taught me the importance of portion control and dietary balance in relation to levels of activity regardless of food groups.

It is much easier to use sensible portion control and a gentle approach to your dietary needs than to blame yourself for food cravings. Go easy on your hunger and your liver will thank you but do not intentionally starve yourself. I only eat a small portion if I start becoming weak as I have a BMI that is rather high and getting my liver to metabolize body fats is part of the equation for me. This is where drinking more water comes in, it definitely does help those of us who are overweight to adjust to a liver which all of a sudden is doing a more efficient job than it has done while it was heavily infected with HCV and therefore not working as well as it should.

Just my thoughts and an encouragement for those who are on this treatment and need to lose weight to remain healthy. Obviously if someones body mass index indicates malnutrition or is too low then your doctor should help you with dietary suggestions while on Harvoni or a combo therapy for that matter.

Healthy self discipline is not a dirty word even though the fast food industry is loth to endorse the concept! One of the funniest movies I have ever watched was "Supersize Me" http://www.imdb.com/title/tt0390521/

I often wonder why it was not banned in some states. LOL

Cheers and good health to all of us going though this treatment!

Eric

Sweetie1 · « **Reply #608 on:** January 14, 2015, 10:46:30 am »

Hi again, I just wanted to mention that everyone should also get the vaccination for Hepatitis A. It is a 2 dose vaccine a couple months apart. If you have any liver damage and get Hepatitis A it can be bad.
Does anyone else have this terrible congestion of the nose? Even some blood at times?

mario555 · « **Reply #609 on:** January 14, 2015, 11:31:09 am »

No congestion that I have read about. As for the bloody nose it might be related to dry conditions in your house. It's been really cold lately...

Bob V · « **Reply #610 on:** January 14, 2015, 12:22:40 pm »

Good morning everyone, it's still morning here in SoCal

As I posted yesterday I have fatigue everyday. My brother is also on Harvoni, week 6. Pre Harvoni he had generalized pain constantly, since starting Harvoni he is pain free. He was extremely depressed, talking to him now he's a different person.

A 411 on my brother, this is Hep c related
He has issues with high T levels and had been to several docs, got we don't know, nothing we can do, etc. He found a research endocrinologist, this guy spent 1.5hrs with him and went over three years of labs. He told my brother that his labs were not normal because of trending..the docs missed several things. He told my brother that all of this is related to his Hep C and needed to get treated or all of this is for nothing.
This doc knows about Harvoni and put my brother on thyroid med to go with the Harvoni. This might also be a why he's pain free, who knows.

Bob V · « **Reply #611 on:** January 14, 2015, 12:42:39 pm »

Eric
This is great, I'm using it on my FB page.

"It is much easier to use sensible portion control and a gentle approach to your dietary needs than to blame yourself for food cravings."

audreywald · « **Reply #612 on:** January 14, 2015, 03:56:57 pm »

I honestly don't know if I am posting in the right place but I really need some feedback. I am on day 9 with Harvoni. The first week was very mild but I didn't go to the bathroom for 5 days. The nurse said I could try a little Miralax. Well now, to put it nicely, I am having to wear an adult diaper. I get no warning time. and I would rather wear this than constantly be changing and washing sheets and blankets. Also last night I got extreme vertigo and landed on my friends lap. My viral load started at over 15 million and I have had Hep C for around 40 years. Does anyone think that makes a difference as to side effects> Also can't eat but trying to stay hydrated. Has anyone been dealing with anything like this?

elizabethfaraone · « **Reply #613 on:** January 14, 2015, 04:25:58 pm »

Quote from: mario555 on January 05, 2015, 05:56:31 pm

By the way good news ; just got my 4 weeks viral load.... UND.....

elizabethfaraone · « **Reply #614 on:** January 14, 2015, 04:33:20 pm »

Quote from: mario555 on January 05, 2015, 05:54:06 pm

Health care in Canada covers visits to doctors and hospitalization. It doesn't cover medication. We have an overly generous welfare system that will pay medication to welfare recipients and prisoners. If you're not on welfare, you must rely on your own money or private insurance. So, if you need a new liver, they'll do the transplant for free.
In my case, I had planned the medicine expense 2 years ago in case I would not be covered. I was lucky to have my insurer cover 100,000 out of a 160,000 bill. Gilead covered the rest. I have nothing but good things to say about Gilead.
No provinces offer any kind of financial aid. If you're employed and have no insurance or if you're insured with the wrong company, you're screwed.
The state of health care is dependent on governments that change every 4 years. I don't think they give a hoot as to what happens to me.
It is so hard to get financed for medication that we are but a handful of us to be treated with Harvoni. If you are poor, or a bandit, you'll get the medication for free. So, if you can't contribute financially to society, governments will keep you healthy! For the ones paying taxes.... Good luck!

I think it is offensive that you are scapegoating the poor. The poor don't deserve this kind of abuse but they do deserve treatment for their illnesses. By the way, I am poor and you made this comment on my birthday. I deserve to be healthy and to live. It's sounds like you were helped out by charity, so how can you scapegoat anyone for getting assistance in attaining the medicine. How would you like it if you were criticized for getting the charity you are getting from Gilead. If you really thought the poor are better off, you would become poor and start living the life of Riley you believe the poor to be leading. But deep down inside, you know you are wrong about the poor. You just need to kick the dog when you come home from a stressful day.

dragonslayer · « **Reply #615 on:** January 14, 2015, 04:40:53 pm »

Quote from: elizabethfaraone on January 14, 2015, 04:33:20 pm

I think it is offensive that you are scapegoating the poor. The poor don't deserve this kind of abuse but they do deserve treatment for their illnesses. By the way, I am poor and you made this comment on my birthday. I deserve to be healthy and to live. It's sounds like you were helped out by charity, so how can you scapegoat anyone for getting assistance in attaining the medicine. How would you like it if you were criticized for getting the charity you are getting from Gilead. If you really thought the poor are better off, you would become poor and start living the life of Riley you believe the poor to be leading. But deep down inside, you know you are wrong about the poor. You just need to kick the dog when you come home from a stressful day.

According to what Mario says, sounds to me like the poor are more than taken care of, and its the un-poor the government are scapegoating!

Lukey · « **Reply #616 on:** January 14, 2015, 04:47:50 pm »

Quote from: audreywald on January 14, 2015, 03:56:57 pm

I honestly don't know if I am posting in the right place but I really need some feedback. I am on day 9 with Harvoni. The first week was very mild but I didn't go to the bathroom for 5 days. The nurse said I could try a little Miralax. Well now, to put it nicely, I am having to wear an adult diaper. I get no warning time. and I would rather wear this than constantly be changing and washing sheets and blankets. Also last night I got extreme vertigo and landed on my friends lap. My viral load started at over 15 million and I have had Hep C for around 40 years. Does anyone think that makes a difference as to side effects> Also can't eat but trying to stay hydrated. Has anyone been dealing with anything like this?

Do you think you're taking a tad bit too much Miralax? Can't you adjust the dose of it so you won't have to wear a diaper? The nurse said I could take Miralax too but I have not yet resorted to it. I have 1 BM daily, but yesterday I had 2. I have backed off the meat for now and am eating mostly all plant foods. That certainly helps, and so does drinking lots of water. Avoid flour, fried foods, cooked cheese, etc. Get lots of fiber in vegetables and other plant foods. I would have tried that before resorting to a laxative.
I very seldom go a day without having a BM. I make it a point to keep my bowels moving. Anything less than 1 BM a day is what I'd call constipation.

Joe

audreywald · « **Reply #617 on:** January 14, 2015, 04:57:15 pm »

Oh, I quit the miralax a week ago. I guess it's still working though.

Lukey · « **Reply #618 on:** January 14, 2015, 06:03:06 pm »

Quote from: audreywald on January 14, 2015, 04:57:15 pm

Oh, I quit the miralax a week ago. I guess it's still working though.

Hopefully you'll get over that soon. Harvoni is supposed to cause "D" too but it doesn't with me, at least not yet.

Katie · « **Reply #619 on:** January 14, 2015, 06:50:48 pm »

Audrey: How miserable! Maybe you were coming down with an intestinal problem or had a reaction to the Miralax. Seems some are having more issues with constipation than the side effect listed of diarhea. Try to break the cycle and eat! If you are only drinking, especially fruit juices you will continue to be "loose". Oatmeal, brown rice and salads would probably be good, and scrambled eggs for protein. You also can take white rice with 2X the amount of water and make a thick gruel so it is actually partially digested and really easy on your tummy. You can add a little broth or fruit to it an I liked it with just a tad of soy sauce. I had GI issues a few years ago. Bananas are good too and of course probiotics! Take care as it can be dangerous and dehydration can sneak up on you.

Updated as I responded to Lukey instead of Audrey. Sorry about that.

Katie

Deborah · « **Reply #620 on:** January 14, 2015, 07:04:11 pm »

I started taking Harvoni on December 12 (8 weeks) and started my second bottle this week. Seeing the doctor tomorrow for first labs. The first couple days were a bit odd, because I was stressing about possible side effects, but once I adjusted my food & water intake I was good to go. I need to eat smaller meals, and drink 100% more water than usual (and I already drink a lot of water). If I don't drink enough I quickly start feeling really bad -- nauseated and light headed. The good news is that as soon as I start drinking I feel better. I eat my pill as I'm climbing into bed, around 11:00, and wash it down with a large glass of water. Then as soon as I get up in the morning I start drinking water. I am an insomniac anyway, but most of the time I now sleep really hard and dream a lot. And my energy level is far better than it's been in years! Also, I find my eyes are a bit more light sensitive. For people who are experiencing nausea and light headedness, I would suggest you dramatically increase your water intake. Hydration is SO critical with this drug!

Katie · « **Reply #621 on:** January 14, 2015, 07:22:09 pm »

Deborah! Welcome to the forum. It has been so beneficial to me! I am hitting the half way mark with tonight's pill at 42 days! The weeks are flying by and I am feeling exactly the same as you. Sleeping good after years of being sleep deprived (which all my friend said was "old age") and the horrid fatigue is gone. I may get tired, but it is just tired, not that weak, painful feeling of not wanting to put one foot in front of the other. I am feeling like my "spark" is coming back and my brain is clear and working again and I find JOY in simple things.

Good luck on your blood work and keep us posted. Feeling like you do, you just know the outcome is going to be amazing!!!!

Katie

mookie5150 · « **Reply #622 on:** January 14, 2015, 07:29:14 pm »

Just got back my first blood work after just 3 weeks on Harvoni and my viral load in undetectable! Granted I did have a relatively low viral load to begin with - 200,000 but the virus has taken its toll on my body and liver for decades. My last biopsy had me at fibrosis stage 3 and that was 3 years ago. I feel so blessed and happy that at 56 I now have hope for a healthy and vibrant golden years! Good Luck to all.

kate0b1 · « **Reply #623 on:** January 14, 2015, 07:31:32 pm »

Happy half day katie

kate

kate0b1 · « **Reply #624 on:** January 14, 2015, 07:32:21 pm »

mookie, congrats, I go friday for my 4 week labs.

kate

BattleTheBeast · « **Reply #625 on:** January 14, 2015, 07:49:51 pm »

Mookie,

That's great news! It just makes me so happy when I see how well everyone is doing and the minimal side effects. I mean really, if we eat right and drink tons of water it totally makes a huge difference and that's pretty easy to do. I am so grateful to have these new drugs available and I hope everyone who needs them can get access to them sooner rather than later.

It's no fun getting hit with Hep C and Stage 4 and then realizing this is the reason you haven't felt good for such a long time. What is fun is the fog lifting and the word undetected and knowing that one day soon we will all be rid of this nasty beast.

Hooray for all of us!

Mel

Katie · « **Reply #626 on:** January 14, 2015, 08:19:23 pm »

Mel...I love your posts. They are uplifting for everyone. Thank you!

Kate...Thank you and good luck on your results. I just know they are going to be AWESOME and we will all celebrate and remember you are only 1/3 of the way through, so if you are not UD it isn't the end of the world.

Mookie: YAY...what incredibly wonderful news. It is so wonderful to see everyone coming along so well and just think only 3 months have gone by since Harvoni was available.

Here is to healthy livers detoxifying our bodies and giving us the good health we deserve!

Katie

BattleTheBeast · « **Reply #627 on:** January 14, 2015, 08:33:01 pm »

Hi Katie,

Thanks, I really try to be positive and the days I can't well I just read what everyone else is saying and realize how lucky I am, take a few really deep breaths, try and get a good nights sleep and hope tomorrow is better for me.

Life can be a real roller coaster and some days you just have to hang on and go with it. Took me a really long time to learn to stop fighting and enjoy the ride, there's always something good if you really look hard enough.

For me yesterday stunk (my own fault because I didn't eat right) so I decided to go on Kiva and find someone I could help and so I made a loan to someone in another county who is trying to get their certification to become a primary teacher. http://www.kiva.org/lend/825002 It wasn't a lot of money but hopefully it will help her finish her education and then she can use it to help others. That made me end my yucky day in a good way and today I woke up and was feeling much better. Sometimes we have to lift ourselves!

I appreciate all of you so much, way more than you know. Believe it or not I actually tend to isolate and this forum and all of you brings me back to the real world outside of work.

Hope you all have a great night.

Mel

wa7uib · « **Reply #628 on:** January 15, 2015, 06:40:56 am »

Thank you everyone for all of your post and sharing your experience with the new wonder drug Harvoni. It has been very helpful to me. I am a newbie here and to the harvoni treatment. I am about 2 weeks into it now. Just thought I would let you al know that at first I experienced the fatique, and being sleepy after taking my morning dose of Harvoni. About 12 days into it my fatique went away totally. I never got any headaches. And now I seem to have no side effects at all. I am on only a 8 week regiment at this point. We will see how my bloodwork looks as i progress to see if I need to try to stay on them longer. I also have a chronic skin disorder on my hands called PCT that is usually caused by Hep C. I have noticed that my sores and blisters have regressed to the point of just the old scarring from the sores I had. Havent seen any new ones thusfar. Very happy about that. So let's dont give up hope. Thanks again to all that share their situations here on this forum.

BattleTheBeast · « **Reply #629 on:** January 15, 2015, 07:54:43 am »

Hi Wa7!

Welcome, really appreciate you sharing.

I am so happy your PCT is becoming a thing of the past and that your side effects are getting better. It's a journey we are on and an amazing one at that. Twelve months ago everyone was still on Interferon unless they were lucky enough to get into a clinical trial with the new medications. Twelve months ago maybe 50% of us had the chance to reach SVR24, today it's upwards of 90% for GT1's and its just going to get better. (I am not sure of the other GT stats because I only have enough brain left to understand whats happening with mine right now)

Anyway so glad you found us and we look forward to you sharing your journey and helping us hold each other up through it all.

Mel

HHburme · « **Reply #630 on:** January 15, 2015, 11:00:46 am »

4 week labs are in........UND !!!

BattleTheBeast · « **Reply #631 on:** January 15, 2015, 02:14:51 pm »

Hooray!!!!!!!!!!

JillLynn · « **Reply #632 on:** January 15, 2015, 03:04:03 pm »

Hi Guys! Been a while and I see familiar faces and new ones. Good to see you all!

Just had my 12 week blood test and my liver enzymes are once again normal (thankful) and am waiting on the UNDETECTED 12 week test from Harvoni. I'm feeling very tired but not sure if it's from the Harvoni or the -20 in Duluth on my owl and wildlife viewing trip. It was fantastic being immersed in nature the last 8 days and not thinking about anything other than drinking water and peeing in the road because we have to drink so much water on this stuff and there are no bathrooms. It all worked out beautifully!!

I will believe my Hep C is truly gone once I'm "one year" virus free. Because my 2nd time on treatment which was supposedly so successful came back at the 9 month mark. Of course I'm thinking positive and feeling like its gone....but because of my past history with treatments.......I won't celebrate like I did the last time until 12 months goes by. Then LOOK OUT WORLD I'm going to write it in the sky!!!!

But that doesn't mean I won't be celebrating every day in the meantime, because every virus free day is truly a gift in my book!

much love and prayers to all! Jill

Katie · « **Reply #633 on:** January 15, 2015, 04:49:50 pm »

Jill Lynn! I am SO happy to read your post and was wondering if you were on you nature jaunt! What a great thing to do to celebrate your end of treatment and you are BRAVE going out in the Minnesota winter. This year has been a bad one. I have family in Minn. on FB and they have kept me informed on weather, as SSE Alaska has had 40-50 degree weather (and LOTS of rain) for all but 2 weeks this year. Really unusual. We are normally milder here on the panhandle since we are coastal and farther south, but this is downright weird. Peeing in the woods is a common practice in Alaska, so you'd fit in well here! HA!

Did you, or are you planning to go to the raptor clinic in St. Paul?

Just to update you, my 4 week test came back with VL at 59 so I am totally excited with that result and so is my doctor. I hit my 1/2 mark last night with my 42nd pill and the time has flown by so I am excited for my 12 week blood work. With so many getting UD at 4 weeks, I sometimes feel a slight worry creep into my thoughts but then go back to my knowledge of the virus and know I am doing great and marvel at the wonders of science and Harvoni.

Good hearing from you!

Katie

mario555 · « **Reply #634 on:** January 15, 2015, 05:11:13 pm »

Congrats! It must be a hell of a relief to be finished! I am at week 10 out of 24 and I just can't see the end!
As for peeing in the trail... If you get lost you can always use the yellow spots to find your way back!! Good use of your newfound health!

kate0b1 · « **Reply #635 on:** January 15, 2015, 06:22:16 pm »

you can't see the pee, it's to watered down lol you will have to use bread crumbs

kate

Mugwump · « **Reply #636 on:** January 15, 2015, 06:27:49 pm »

Quote from: JillLynn on January 15, 2015, 03:04:03 pm

But that doesn't mean I won't be celebrating every day in the meantime, because every virus free day is truly a gift in my book!

much love and prayers to all! Jill

Thanks and ditto on the prayers
Eric

Katie · « **Reply #637 on:** January 15, 2015, 06:30:02 pm »

Welcome newbies! Congratulations on all those with UD results. It warms my heart to see the good results so many are having!

I just wanted to let everyone know I posted a couple things on "On Hepatitis C treatment/ Starting Harvoni" thread to explain, very generally, how a virus works, in case you are interested. It is just my simplistic way of trying to understand this monster and thought it might be beneficial. If it is too much information for you, I certainly understand, but for me, the more I know the better I feel. Some others liked getting the information so I wanted to let you know.

Katie

Katie · « **Reply #638 on:** January 15, 2015, 06:30:45 pm »

LOL...Kate...isn't that the truth!

kate0b1 · « **Reply #639 on:** January 15, 2015, 06:41:14 pm »

PS katie, thanks for the information, you can never know to much. AND I'm so ready for my labs tomorrow i downloaded the app so i will get them as soon as they are in !!
kate

Katie · « **Reply #640 on:** January 15, 2015, 06:47:53 pm »

Kate...I'll be thinking of you and am excited for you too! More Happy Dances!!!! WoooHooo!

nicole_1234 · « **Reply #641 on:** January 15, 2015, 08:21:39 pm »

Wow your stories are so inspiring. So many survivors and fighters!

Katie · « **Reply #642 on:** January 15, 2015, 08:37:37 pm »

Quote from: audreywald on January 14, 2015, 03:56:57 pm

I honestly don't know if I am posting in the right place but I really need some feedback. I am on day 9 with Harvoni. The first week was very mild but I didn't go to the bathroom for 5 days. The nurse said I could try a little Miralax. Well now, to put it nicely, I am having to wear an adult diaper. I get no warning time. and I would rather wear this than constantly be changing and washing sheets and blankets. Also last night I got extreme vertigo and landed on my friends lap. My viral load started at over 15 million and I have had Hep C for around 40 years. Does anyone think that makes a difference as to side effects> Also can't eat but trying to stay hydrated. Has anyone been dealing with anything like this?

I commented for you but addressed it to Lukey instead of you.

please scroll back as I updated it. There may be helpful info for you as I have had GI problems in the past. Hope you are doing better.

Katie

audreywald · « **Reply #643 on:** January 16, 2015, 12:31:03 am »

Quote from: Lynn K on January 01, 2015, 10:00:04 pm

Hi Mario

Sure I understand your thoughts trying to reassure people that treatment is not a big deal and super happy for you that you are feeling great!

You just had me worried when you made the remark about a 1/2 glass of wine. I too looked longingly at having a sip of Champagne but my better half said not gonna happen which is for the best so I toasted the new year with sparking Apple juice.

Ah well it is what we must do if we want to hang around the planet for a while longer.

Best to you and yours Happy New year
Lynn

Deborah · « **Reply #644 on:** January 16, 2015, 12:34:53 am »

I love harvoni!! Just got my 3 week blood results = undetectable! I'm now at week 5 and on the home stretch. Virtually no side effects but elevated BP and constantly drinking water to keep the hydration up and nausea/fogginess down. Great energy and sleeping decent. Walking on air tonight!

audreywald · « **Reply #645 on:** January 16, 2015, 12:45:59 am »

I started Harvoni on January 1st. Seems kind of cool date to start, right? Viral load was over 15 million and have around 3plus cirrhosis. I cannot believe how quickly this all went down. I will be a 24 weeker as I have a lot of cirrhosis, high VL and have probably been sick with this dragon for 40 years. So I think they really rushed it through. I see my doc on Feb 2nd and then I will get my first blood test. Am I expected to have cleared the virus at this time? Does it mean I will not likely clear it at all? For me they said if it gets down to 15 I will be considered cured. My stomach hurts all the time (it has been for quite awhile) and I have very little appetite. I won't lie, reduced appetite always pleases me as I need to lose some weight. I take an anti anxiety pill at night to sleep. Can anyone explain ALT and AST and the other things you guys mentioned, like bilirubin? Like what they are and what they do for the body? BTW, I live in a small town in Arkansas now and see Dr. Matt Garner in Jonesboro. He seems like a fine Dr. to me. Any other Arkansas people out there?

Katie · « **Reply #646 on:** January 16, 2015, 12:47:52 am »

WooooHooo Deborah! What great news. It is a wonderful feeling and almost unbelievable, huh?

HepC has met it's maker. What a blessing and so many people don't understand what a HUGE deal this is. We Do!

Katie

Katie · « **Reply #647 on:** January 16, 2015, 01:07:33 am »

Quote from: audreywald on January 16, 2015, 12:45:59 am

Can anyone explain ALT and AST and the other things you guys mentioned, like bilirubin? Like what they are and what they do for the body?

Hi Audrey,

AST-ALT are enzymes which aid some chemical activities within cells of the muscle, liver and heart. Evidently when there is something wrong with any of them the injured area can release these enzymes into the blood stream, so if they are elevated it indicates something is wrong. It is a signal for the doctor to run additional tests and it is a common sign for Hep C.

Bilirubin is waste from natural breakdown of the red blood cells which happens in the liver and is excreted by the bile ducts and gall bladder. Elevated levels are usually due to liver disease or blocked bile ducts.

There may be more on that but that is what I'velearned since diagnosed with Hep C.

Sorry your stomach is still giving you problems. Be sure to talk to your doctor about it as it could be something unrelated to Hep C. You may need to have some probiotics to help get your natural flora back since the bowel issue and please try the gruel from white rice. You just cook up rice with 2X the water and simmer it until it is like baby food. You can add things to it for flavor such as fruit or broth and I like it with just a little soy sauce. It helped my tummy a few years ago when I had some digestive issues. Bananas are good too.

Many are UD at 4 weeks but I came in at 59 and feel great about it. As long as the viral load drops at a fast rate, you are responding and more than likely will be cured...in fact 98% likely. Some aren't UD until their 12th week so don't get discouraged!

Hope you feel better!

Katie

Lynn K · « **Reply #648 on:** January 16, 2015, 01:11:34 am »

One more thing on bilirubin elevated levels fo bilirubin is what caused people with severe liver damage to turn yellow.

Jaundice is yellowing of the skin and eyes. This condition forms when there is too much bilirubin in your system. Bilirubin is a yellow pigment that is formed by the breakdown of dead red blood cells in the liver. Normally, the liver gets rid of bilirubin along with old red blood cells.

Katie · « **Reply #649 on:** January 16, 2015, 01:17:33 am »

Absolutely Lynn. Thanks for adding that.

mario555 · « **Reply #650 on:** January 16, 2015, 08:56:22 am »

And a tiny addition about the 4 weeks test into your treatment. 4 weeks tests are not indicative for a cure! It is more a check up to make sure the product works! Even if you have let say 100 for your VL, it means millions of viruses have died. The product killed everything except 100 swift ones! In the following weeks those viruses will also die.
Higher up in these posts, there was a discussion about statistics. It was explained that if you don't get cured, you'd be a wonder of nature! The 2-3% not cured include the ones that didn't finish the treatment, the ones that got lost in follow up, the ones who didn't take the medication properly, etc... Being on 24 weeks will ensure all the little screw-ups you might do in treatment will be lost on the shear number of pills taken (168 pills!). Harvoni punches through everything if taken long enough! Don't worry, be happy! You have a miracle pill that will do the trick! I'm starting my tenth week out of 24 and whatever side effects I've had is now my 'normal state' and with the help of this group, I'll finish the full treatment!
As for stomach issues, be careful not to eat crap, you will have stomach troubles if you do!
Finally as the weeks of treatment pass, I have noticed that your nutrition will improve naturally. You'll hesitate in eating crappy food and it will come naturally! I am 5 pounds lighter and I had none to lose! Good luck to all!

PressBella · « **Reply #651 on:** January 16, 2015, 10:26:30 am »

Hi, I've only been on my Harvoni treatment for a 2 days, but I've noticed tha I'm very irratable and a little anxious. has anyone been feeling these side effects?

nicole_1234 · « **Reply #652 on:** January 16, 2015, 10:54:03 am »

Yes PressBella, but for me they subsided after a few weeks. I'm on week 6 and it's really quite easy now. My remaining side effect is a little fatigue sometimes and a slight headache when I wake up but it goes away with a glass of water.

If you scroll through my posts you see I was very anxious and even took Ativan for a couple weeks. To me, I believe it was just the medicine demolishing the Hep C.

PressBella · « **Reply #653 on:** January 16, 2015, 11:07:25 am »

Thank you so much. My husband is in Afghanistan and its a little frightful with this anxiety and dealing with it alone.

mario555 · « **Reply #654 on:** January 16, 2015, 11:32:16 am »

You are not alone! We are a bunch of battle weary soldiers! You'll get high class support with the group! As for the anxiety, I did have some during the first few weeks but I took a couple of valium here and there and it did the trick!

PressBella · « **Reply #655 on:** January 16, 2015, 11:37:22 am »

Yes, this group is so helpful. I don't feel alone with dealing with this right now. Just knowing I have the group helps alleviate a lot of stress.

JillLynn · « **Reply #656 on:** January 16, 2015, 11:50:29 am »

Hi Katie! the wx concerns me too...especially for the wildlife. Hi Kate.....haha about the bread crumbs....and so true about non-yellow pee!

Now that I'm home I'm not doing in the road or paths anymore Mario....back to civilization for the moment! AND 20 in Detroit has never felt better

Still waiting for my 12 week viral load results. I didn't know harvoni caused :diarrhea: my friend and I thought it was from my vegan lifestyle going a bit awry in Duluth....good to know it was from the Harvoni. Getting a little better everyday.

Boy when I think back on the harvoni journey I'm just amazed at this new treatment. If I hadn't started zoloft (antidepressant) one month prior to learning I was going to kick my hep C's butt, I'd have had NO side effects. Those 2 drugs did NOT mix well at all. So if you are on an antidepressant this could be making you feel nauseas and abdominally sick....it sure did me and also increased my liver enzymes. Once I weaned off....no more problems at all.

2015 is our year friends! For those of you doing treatment for the first time, I'm thrilled you have such better chances than us old timers did in the past at curing this. It's a remarkable time really!

love, hugs and positive thoughts to you all!

Mugwump · « **Reply #657 on:** January 17, 2015, 05:51:02 am »

Quote from: Katie on January 16, 2015, 01:07:33 am

Hi Audrey,

AST-ALT are enzymes which aid some chemical activities within cells of the muscle, liver and heart. Evidently when there is something wrong with any of them the injured area can release these enzymes into the blood stream, so if they are elevated it indicates something is wrong. It is a signal for the doctor to run additional tests and it is a common sign for Hep C.

Bilirubin is waste from natural breakdown of the red blood cells which happens in the liver and is excreted by the bile ducts and gall bladder. Elevated levels are usually due to liver disease or blocked bile ducts.

There may be more on that but that is what I'velearned since diagnosed with Hep C.

Yes bilirubin is naturally produced by the liver for the purposes of digesting food and contains a balanced quantity of hydrochloric acid necessary for digestion. Essentially the liver is also a wonderful recycling plant as well as a chemical factory that needs to be free from impediments like HCV that kill off too many cells and people! Again it is a question of how well the functions are balanced, while the human might need sleep the liver never does, it works and functions 24/7.

So if during Harvoni treatment you are inconvenienced by having to discharge urine which is part of the way the body disposes of excess bilirubin then this is a very small price to pay indeed for the chance to kill off HCV in your system!

Quote

Sorry your stomach is still giving you problems. Be sure to talk to your doctor about it as it could be something unrelated to Hep C. You may need to have some probiotics to help get your natural flora back since the bowel issue and please try the gruel from white rice. You just cook up rice with 2X the water and simmer it until it is like baby food. You can add things to it for flavor such as fruit or broth and I like it with just a little soy sauce. It helped my tummy a few years ago when I had some digestive issues. Bananas are good too.

Many are UD at 4 weeks but I came in at 59 and feel great about it. As long as the viral load drops at a fast rate, you are responding and more than likely will be cured...in fact 98% likely. Some aren't UD until their 12th week so don't get discouraged!

Hope you feel better!

Katie

Thanks for the detailed description of the bio-chemical mechanisms at work.

I hope you don't mind what I have added in as a comment because the suppositions I have added are pure logic at least in my mind. I do not at all mind if others who are trained in logic and bio-science interject by correcting any false assumptions that I may have made.

GREAT POST KATIE!

Eric

BG42 · « **Reply #658 on:** January 18, 2015, 07:37:54 am »

Looks like just two days ago, AETNA and Gilead reached an agreement to discount pricing of Harvoni. This comes out now, while Aetna is working to pre-certify me for Harvoni!

http://news.aetna.com/aetna-gilead-agree-discount-pricing-hepatitis-c-drugs/

I feel like we are right there at the very beginnings of seeing millions of people cured from this disease!

Yorocco25 · « **Reply #659 on:** January 18, 2015, 11:10:18 am »

Hello everyone! Tonight will be 13 for me. The last 2 nights I have had really bad shivers. Similar to those of the interferon/riba tx. Has anyone else had these side effects?

dragonslayer · « **Reply #660 on:** January 18, 2015, 05:33:37 pm »

Quote from: ranjankoyn on January 07, 2015, 08:11:30 pm

I just got my six week draw last week it showed <15 still detected

I'm a little confused.. Isnt a quant rna reading of <15 usually considered UNdetected?

BattleTheBeast · « **Reply #661 on:** January 18, 2015, 06:21:33 pm »

Hi Yorocco, BG and Pressbella,

So happy that you found us! I am even happier that you are on your way or soon to be on your way to SVR with Harvoni (our magic little orange pill).

We are all so lucky to have these new treatment options available to us and it's so great we have these amazing new drugs that give us more than a 90% chance of obtaining SVR.

Drink lots of water, eat as healthy as you can, exercise when you feel up to it, don't take any other medications or vitamins without checking with your doctor. Post your questions and your successes, hold each other up on the bad days and just know you aren't alone on this journey. There are tons of great articles and stories on the Home Link that can also help you along the way http://www.hepmag.com/

Looking forward to seeing all the SVR's in 2015!

Mel

Here's the link to check drug interactions: http://www.hep-druginteractions.org/interactions.aspx

Lynn K · « **Reply #662 on:** January 18, 2015, 08:42:56 pm »

Hi Dragonslayer

My lab report has this note about results

HCV RNA BY RT-PCR, QUANT - Details
HCV QNT TEST INFO See Notes See Below
The quantitative range of the assay is 15 IU/mL to 100 million IU/mL
using COBAS(R) TaqMan(R) HCV test, v 2.0. The limit of detection (LOD)
and lower limit of quantification (LLOQ) for this assay is 15 IU/mL.
Results less than the quantitative range of the assay will be reported
as "HCV RNA detected, less than 15 IU/mL"

Basically too few to count but still detected

dragonslayer · « **Reply #663 on:** January 18, 2015, 10:17:57 pm »

Quote from: Lynn K on January 18, 2015, 08:42:56 pm

Hi Dragonslayer

My lab report has this note about results

HCV RNA BY RT-PCR, QUANT - Details
HCV QNT TEST INFO See Notes See Below
The quantitative range of the assay is 15 IU/mL to 100 million IU/mL
using COBAS(R) TaqMan(R) HCV test, v 2.0. The limit of detection (LOD)
and lower limit of quantification (LLOQ) for this assay is 15 IU/mL.
Results less than the quantitative range of the assay will be reported
as "HCV RNA detected, less than 15 IU/mL"

Basically too few to count but still detected

Thanks Lynn,
So, when its considered Undetected, I presume the count is also < 15IU/ml, only it reads UNdetected? I was confused because, if 15iu/ml is the bottom limit of detection, then I would have thought if you measure less than that, youd be considered undetected.. Weird.. Im having an EOT viral load blood draw on Wed, and thought if I measured < 15, Id be ok.. But I guess Id better be hoping for that AND UNdetected as well, as Ive just learned they are NOT the same.! Or if youre undetected, does the report dispense with the '<15iu/ml' note, and simply report, 'UNdetected'? thanks for the info...

Lynn K · « **Reply #664 on:** January 18, 2015, 10:28:54 pm »

I guess qualitatively the virus can be detected but quantitatively they can out count them because it is below the tests ability to determine.

So quantitative think quantity. For qualitative think quality.

Or said otherwise they can detected the presence of the virus but because there are so few they cannot tell how many in a given volume of blood 3, 5 maybe 14 IU/mL but less than 15 IU/mL

When it is considered undetected is when the test cannot detect the presence of the virus at all. Which because of the limits of testing and my experience having relapsed after being a UND at 4 weeks Sol Oly this still may not mean there is not one single virus particle present again just below the tests threshold to detect.

Hope that helps

Lynn K · « **Reply #665 on:** January 18, 2015, 10:36:34 pm »

This is what my last result said

HCV RNA RT-PCR, QT See Notes IU/mL See Below
HCV Not Detected

dragonslayer · « **Reply #666 on:** January 18, 2015, 10:44:58 pm »

Wow Lynn.. thats a great explanation.. So what we all hope for is 'Not Detected', not, '<15IU/ml'. Nothing with this disease appears simple or straight forward! I know there is a rna Qualitative test, as well as the Quantitative test.. And Ive read that the Qual test is more sensitive and can detect below 15, but wont come up with an actual number... And that the Quant test can only measure down to 15... There's the rub. I had assumed that, if you had less than 15IU/ml, youd be considered, by that Quant test, to be undetectable, since by definition, it cant read any lower. But I guess I would have been wrong!

Lynn K · « **Reply #667 on:** January 18, 2015, 10:48:36 pm »

I only know what my test and the notes say as reporters by lab corp other labs may report their results differently which of course only adds to our confusion

Katie · « **Reply #668 on:** January 18, 2015, 10:50:35 pm »

Hi Lynn and Dragon,After reading your posts I checked my reports and the sensitivity varies.
My most current one listed < than 12 and indicates the virus is detected but is not quantifiable.

In 2013 it is < 43 (different lab)

2012 same lab and same limit of <43 but they ran a more sensitive test which doesn't give the viral load and it is <5. They ran this by mistake as it is for those on treatment whose level has dropped down and is called a quantitative TMA.

In 2009 the range was less than 49.

My fist quatitative RNA PCA was listed as ultra sensitive and the lower limit was 10.

So there is differences in their limits and probably depends somewhat on the lab used. Since my labs are sent out, in 2006, it was Oregon and more recently Peace Health in Vancouver, Washington and a couple from Quest Diagnostics.

It gets confusing but I am sure their techniques are constantly improving.

Lynn: Your post with the explanation is good and don't know why I posted this but it does show there are test with different limits out there.

Katie

Lynn K · « **Reply #669 on:** January 18, 2015, 10:53:39 pm »

Yes a good example of other labs but yours did say less than 12 detected so like I was saying detected but not quantifiable exactly as your most current report says

dragonslayer · « **Reply #670 on:** January 18, 2015, 10:55:02 pm »

Thank you Katie for chiming in. Maybe the mods will post a definitive explanation of how to interpret the various Quantitative and Qualitative lab results all of us are seeing.. Lynn, your postings and examples were really helpful. Thanks.

Katie · « **Reply #671 on:** January 18, 2015, 10:55:28 pm »

My last VL was 59 so I have never been under the limit.

Katie · « **Reply #672 on:** January 18, 2015, 11:00:54 pm »

Quote from: Lynn K on January 18, 2015, 10:53:39 pm

Yes a good example of other labs but yours did say less than 12 detected so like I was saying detected but not quantifiable exactly as your most current report says

Definitely Lynn and that's why it is so important to continue treatment as those little buggers can be hiding out and start replicating again. Sure hope my 12 week EOT comes back UD but I'll feel better when I am 6 months completed and still UD.

Lynn K · « **Reply #673 on:** January 19, 2015, 01:53:54 am »

Hi Katie

From everything I have seen once you become UND on treatment you will stay that way. At least in the trials there were no breakthrough failures only relapse failures.

So onward to SVR 12 for us all

Katie · « **Reply #674 on:** January 19, 2015, 02:16:52 am »

Thanks for that Lynn. I must have misunderstood. I thought if the detectable limit on the test was 15 or 12 or 5, or whatever, that was considered undetectable for that test however since it couldn't test to zero, you may have a relapse where it started to replicate again and that's why they do a check well after the 12 weeks.

I would hate to think I was cured and then have it pop back up again so it is a very important distinction.

I thought I read that on a Hepatitis site but am not going to hunt it down at this point. Guess I've been giving out wrong info and I hate doing that.
SVR!12 HoooRAH!

Thanks,

Katie

Lynn K · « **Reply #675 on:** January 19, 2015, 02:43:20 am »

Hi Katie

I showed as HCV not detected last year on Sovaldi Olysio at week 4, not "HCV RNA detected, less than 15 IU/mL". Same result at EOT, HCV not detected which was 12 weeks after I started so in June. But when we did the SVR 12 test in September I was found to have relapsed and my viral load was essentially the same as before treatment 6 months earlier.
My results from 9/3
HCV RNA RT-PCR, QT 2422260

HCV LOG 10 6.384

Needles to say I was very, very disappointed so it is important to me that people understand that EOT is not the end of waiting to be sure. Only at 12 weeks post can you say you are SVR and cured

Sweetie1 · « **Reply #676 on:** January 19, 2015, 07:31:41 am »

Hi Everyone,

Day 68 of Harvoni out of 12 weeks! I don't really feel anymore side effects. The strange thing is I have always needed to sleep 8-12 hours and now I am going to sleep at midnight and waking up at 7 or 7:30 am. It's pretty amazing. Blood tests at week 4 showed virus undetectable. I am wondering if this new sleep pattern is a result of the virus going away. I hope it is gone and stays gone!

JoeK9999 · « **Reply #677 on:** January 19, 2015, 08:15:12 am »

One point to make that is that any VL test on Harvoni treatment is irrelevant as others have quoted their doctors as saying. The only reason they were done on the clinical trials was to evaluate Harvoni. We are not on trials. This is the real thing. When I spoke to Gilead, they simply said treatment lengths do not change and is not based on tests results while on treatment, and to get a 12 week post treatment test to find out my status. INT/RIB protocols were different and test based treatments.

You are either on the 8,12,or 24 treatment plan based
on your variables. The treatment plan is not going to change. You finish your treatment and wait for 12 weeks, 24 weeks and 48 weeks for VL test.
Same as you take your 7,10 or 14 days of antibiotics for an infection and either cured or not. If not you take a different antibiotic.

You can have a 4 week UND and a 6 week Detected and an 8 week UND again.
Is anyone having a weekly test? I don't think so. Based on the trials everyone is UND at EOT so why bother getting a test at the last day of Harvoni? I prefer to quit worrying, get my 3,6,and 12 week tests after EOT showing UND. And if I turn out to become one of the slim minority that didn't make it, a new treatment is around the corner. I did my job by finishing my 12 weeks and now I live life again and take a test in 11 more weeks. Good luck to all!

dragonslayer · « **Reply #678 on:** January 19, 2015, 09:26:00 am »

>> I prefer to quit worrying, get my 3,6,and 12 week tests after EOT showing UND.<<

Joe, do you mean 3, 6, and 12 MONTH? I scheduled an EOT test for this week as my last day of my 8 wk treatment is tomorrow. I realize that in the trials, everyone was UND at EOT.. However, I believe that trial conditions and results can be somewhat different from real world results.. The sample is smaller, conditions more highly controlled, and in general, I dont see any harm in getting an EOT test if for no other reason then to be able to ascertain, if, by some unfortunate set of circumstances, the 12 wk SVR test turns out to not be UND, youd know if it was an on treatment failure, rare as that would be, or a relapse.

JoeK9999 · « **Reply #679 on:** January 19, 2015, 09:59:17 am »

Yes I meant months. Everyone is entitled to get whatever tests they want.
To me EOT test means nothing. That's for me.

I read a story of someone who did S/O for 12 weeks,was still detected at <15 at the 12 week mark, and by 12 and 24 weeks after EOT was undetected, so that implies that their immune system was able to clear the rest. Think about the anxiety they went through for months.

And other stories of people who on S/O were UND at 4, 8 and 12 weeks on treatment and then relapsed.
You are right, we haven't seen the real world results from Harvoni.
Like you, I plan on being cured from Harvoni. All I can believe until I see some more stats are that relapses on Harvoni occur from either re-infecting yourself through another infected person's blood or a severe immune disorder that can't fight hard enough. We did our job and took the medicine as prescribed and can only wait now.
We will see true real world results in the coming year and hopefully we won't be paying attention to them because we became worry free.
I feel very confident about SVR based on the ION1 thru 3 trials that were done.
The best of luck to you with your virus free life!

hope4cure · « **Reply #680 on:** January 19, 2015, 02:39:14 pm »

Hello All,

Just found this website and want to share my experience so far.

Started Harvoni on 1/16.
Side effects: feeling very tired about 6 or 7 hours after taking the pill. I have had to take a nap each day (only 3 days so far) for about 1 to 2 hours. It is still early on so it could change.

No other side effects felt

I am under 40, geno type 1, liver stage 0 and my count is under 6 million so my Doc says I only need to take it for 8 weeks.

I probably have had hep c for all of my life (blood transfusion at birth.) Found out I had it about 1 1/2 years ago.

The notion of only the very sick getting this medication does not seem to apply.

HHburme · « **Reply #681 on:** January 19, 2015, 03:02:16 pm »

hope4cure welcome to the group. So glad to hear you are on your way to getting cured with harvoni. Day 38 for me, had some SE first 10 days and then really nothing to speak of. Lots of good info here....hang around.
JoeK...thanks for your comments. I think like you, that what really counts is SVR12.

Wilson · « **Reply #682 on:** January 19, 2015, 05:15:51 pm »

4 days on Harvoni. Feel normal. Amazed my insurance is paying for 12 weeks. My doc says I only need 8 weeks. She was amazed that my insurance paid as well. Liver biopsy was 1-2, no fibrosis. Only found out in 2013. Never drank. Also found out I have hemachromitosis (iron overload genetic disorder). Had elevated liver function test for decades. No one ever bothered to check out the elevated results. Once I started to have blood taken off, my Liver function and enzymes returned to near normal. I will keep reading the great stuff people are posting. I am taking my pill at 6:00 pm. Heard I can sleep through possible side effects. Only 52 days to go then wait 12 weeks to ensure I'm clear. My ferritin level is in access of doctor recommendation. Does anyone know if having a unit of blood taken off for my iron overload defect?

BattleTheBeast · « **Reply #683 on:** January 19, 2015, 05:23:04 pm »

Hi Wilson,

Welcome, glad you found all of us! Sounds like you are on your way with the Orange Magic Pill

I don't know anything about your condition but I am sure someone on here will be able to answer you question.

Take care and keep posting how you are doing!

Mel

Wilson · « **Reply #684 on:** January 19, 2015, 05:34:04 pm »

My viral load has never exceeded 2m. My doctor said your viral load does not mean anything. I am going to take a three day weekend for the next seven weeks to use my vacation time that I was saving for treatment. Now that I am on harvoni I feel like this is great time to enjoy myself.

Katie · « **Reply #685 on:** January 19, 2015, 05:52:31 pm »

Hi Hope and Wilson! Welcome aboard!

Hey Wilson, I had a doctor tell me that too, that the viral load in the blood wasn't concerning but what was happening in the liver, obviously. I have read that a higher VL shown by the test is concerning both for treatment and for possible liver damage, which makes sense too as if it is high in your blood then it could be working over time in the liver.

I try not to think about that so much and just concentrate on how wonderful I feel. I am on day 47 and on the 12 week treatment with 1a. My 4 week test came back at 59 down from close to 3 million but 5 years ago it spiked to 16 million. It is working and I feel better than I have in years! My liver is able to do it's job and detoxify my system and I feel 10 years younger. I'll take that.

Good wishes to both of you and congratulations for getting on the Harvoni miracle cure!

Katie

Katie · « **Reply #686 on:** January 19, 2015, 05:59:30 pm »

Quote from: Lynn K on January 19, 2015, 02:43:20 am

Hi Katie

I showed as HCV not detected last year on Sovaldi Olysio at week 4, not "HCV RNA detected, less than 15 IU/mL". Same result at EOT, HCV not detected which was 12 weeks after I started so in June. But when we did the SVR 12 test in September I was found to have relapsed and my viral load was essentially the same as before treatment 6 months earlier.
My results from 9/3
HCV RNA RT-PCR, QT 2422260

HCV LOG 10 6.384

Needles to say I was very, very disappointed so it is important to me that people understand that EOT is not the end of waiting to be sure. Only at 12 weeks post can you say you are SVR and cured

Lynn, I'm so sorry you had to go through that, but fortunately Harvoni is here for you now. Did the doctor explain how it could be UD for that long and then come back? That's why, in my mind, I am putting 6 months as my time to feel confident. I know that is more than probably needed, but since I worked with bacterial viruses in college, I just don't trust those nasty sci fi parasites at all.

I'm rooting for you and everyone on this forum

Katie

Beautiful day here, 52 degrees and blue sky. This is such a weird winter in SSE Alaska!

Lynn K · « **Reply #687 on:** January 20, 2015, 01:48:12 am »

Katie

HCV not detected does not mean they are all gone just lower than the ability of the test to detect the presence of the virus. For me the surprise was that the virus as back at 2 million plus just 12 weeks after stopping treatment. I did not think it would rebound that quickly.

Hi JoeK999
I am planning on asking my doctor to forget about the EOT test and instead test at 4 weeks post.. I agree with you the EOT test is pointless since everyone who clears the virus stays that way while on treatment.

I have read that if you make it to 4 weeks your chances are good at 12 weeks. Would rather have an early warning of relapse if it goes down that way or preferably an early sign of hope for SVR 12.

Katie · « **Reply #688 on:** January 20, 2015, 02:03:06 am »

Thanks Lynn, so then what I was trying to say before, but evidently not good enough was right there with you. Guess I just am too literal and that sometimes is a problem for me. So ya, I am staying with my 6 months before I relax. HA! I'll just remember UD may not be UD at VL = 0 until you give it time after treatment.

Virus replication is exponential and can go so fast it is scary. The virus my lab work used could replicate millions of cells in a single host cell, I don't know about our monster virus, but all virus replication climbs very quickly and is one reason 1a & b were so difficult to treat...the rate of replication..

Good luck tomorrow, and I hope it is smooth sailing for you or at least easily tolerable.

Katie

Lynn K · « **Reply #689 on:** January 20, 2015, 02:07:10 am »

yeah obviously if they were truly gone they could not come back unless I have zombie hep c virus that came back from the grave

That is a joke by the way

Or aliens or zombie aliens either way we will kilz dem allz deder den dornailz!

Katie · « **Reply #690 on:** January 20, 2015, 02:22:10 am »

Lynn...you got that right.

HA!

Sleep well!

Katie

kate0b1 · « **Reply #691 on:** January 20, 2015, 05:58:53 am »

@lynn, so funny having zombie virus's, I'm not counting any chickens before 12 weeks post. Relapse day was almost worse than the day i found out i had it. I will dutifully go and get my labs as ordered (i already have my scrips until june) but the only one i really care about it that one.

kate

Amj1951 · « **Reply #692 on:** January 20, 2015, 07:00:54 am »

Hello all, reading through the side effects is interesting. I had insomnia the first 3 days, Ive had a couple of minor headaches, I wondered if I was getting the bug from chills, but it all stopped and today I take my 14th pill and I continue to feel great. I feel I have so much energy its crazy!! I have had some forgetfulness but I THINK its getting better.. though I may have forgot if I forgot : )

My only complaint is sleep. I have a hard time going to sleep but once I do I sleep but I am waking up so early, but if this is the worst part of the pill for me, then I can gladly do this for 10 more weeks. I am on the 12 week treatment.

I DO believe there is a lot to be said for the water. The more water, the less side effects.

My questions.. as I read about others side effects. The ones who feel nauseas or fatigued. Are you on other medication or supplements too or do you only take the Harvoni? Do you have other problems other than the Hep C? I take one other pill, Losartan tctz to help control the protein in my kidney, but I feel nothing from it.

I just did a blood test and a 24 hour urine for my kidney doctor so it'll be interesting to see how the Harvoni is affecting me and working this early. I don't know if he'll do a VL test. I mentioned it but who knows. If not, then in two weeks my Liver Doctor will do it.

I am excited for all who have shown they are clear of the virus and for all of us who WILL clear it soon!
Meredith

hope4cure · « **Reply #693 on:** January 20, 2015, 11:21:36 am »

Amj1951 - I am not taking anything else, nor did I before starting Harvoni. Yesterday was my 1st day back to work while taking the medicine and 4th day on it and I did find myself getting tired around the same time, but I think being at work doing something helped me not get as tired, though I probably would have fallen a sleep if I was at home.

I may ask my doctor if I can change the time I take the medicine from morning to night. I am just worried I would forget to take it at night. I am finding myself feeling paranoid that I forgot to take it just 5 or so minutes after I took the dang pill. Today I just counted how many pills I have left and checked on my calendar to make sure it matches. That actually made me feel much better.

Good luck to everyone and never give up hope.

Bob V · « **Reply #694 on:** January 20, 2015, 12:29:02 pm »

Hi everyone,

I just got my 5 week lab results, VL under 15. This is great news but if I was totally honest I was hoping for UD. Still I'll take it.
-------------------------
Dx hep non AB 1972, Hep C 1991
GT 1A
VL 3.7m
Liver B 1992, unremarkable
Liver ultrasound 2014, normal
Treatment Interferon 90's x2 failed
Started Harvoni 12/08/2014

Bob V · « **Reply #695 on:** January 20, 2015, 01:08:18 pm »

Hope4cure
When I take my pill I write the dose # on a calendar or I would second guess myself too.

HHburme · « **Reply #696 on:** January 20, 2015, 01:33:59 pm »

BobV...I do the same thing. I also turn the presription bottle upside down so I know that I took the pill.
Today, I find a shipment of harvoni sitting on the front porch. Anyone could have come by and taken. This is the 3rd shipment and the first two required a signature. Wow !!

Lynn K · « **Reply #697 on:** January 20, 2015, 01:41:27 pm »

Amj951

Just was until today only taking Harvoni and Spironolactone a diuretic due to edema.

I do feel like I have been more tired but I work second shift so my hours are messed up anyway.

I just took my first Ribavirin this morning so we will see how that goes as far as sides.

Good luck on treatment

anniemybaby · « **Reply #698 on:** January 20, 2015, 04:49:14 pm »

I'm on my second day of harvoni my viral load is low so I'm on an 8 wk treatment I m nervous and scared I just feel so infected I even hate working im a cna in healthcare and I'm guessing that's where i got infected with hep c

Bob V · « **Reply #699 on:** January 20, 2015, 05:29:54 pm »

Lynn K,
Sending good vibes

Annie
I hear you. I'm nervous and scared too, it should get better with time. You'll get some good support on this forum. Good luck.

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