Harvoni Side effects

[TerryLF]

Trithis, something to think about, and maybe it's nothing. I'm sure you were told to avoid antacids with Harvoni because the change in PH could affect absorption. I just wonder if the acid in vinegar will make a difference with PH going in the opposite direction. It's probably nothing because I wasn't cautioned about acids, just antacids. Anyone on the site have any thoughts on that.

[Katie]

Rex: My hopes are that I'll get back some of my youthful resilience..

Hear, hear, hear! Did I say it loud enough Universe?

;-)

Hi Meg...I'm sorry I didn't answer you question awhile back on fatigue.  Before treatment it was horrible and got so bad the last 3 years or so that I finally retired.  It was like my joints had 100 pound weights in them and everything was a chore.  My productivity was affected and it wasn't fair to the technicians that worked under me and I am really glad I made the move. 

I have always been a worker and refused to let the fatigue stop me but it certainly slowed me down.  I have to tell you, that in spite of it, I painted the siding on my house in 2013 and painted the garage last summer.  I am in the process of remodeling my 2 bedrooms and just have a couple more walls to paint in my bedroom and then am about done....other than organizing all of my STUFF and downsizing so I can feel less burdened and cluttered.  Clutter really bothers me.

Because of my completion of big projects, no one realized how sick I was but couldn't understand why I isolated myself and didn't attend many functions.  I just didn't have it in me.  Hopefully that will improve as isolation isn't good and isn't healthy but I have become so used to it that may be a challenge.  This forum is so good for me because it not only gives me support but communication with folks fighting the same battle!

I love all of you guys.  You are terrific!

Katie

ps:  I feel better on Harvoni than I have in years and hope all the good "side effects" continue once I quit the meds (6 more days)!

[Lynn K]

For those takng omepresol for example PRILOSEC or Nexium

Per the prescribing info sheet for Harvoni page 5 table 3

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

Proton-pump inhibitor doses comparable to omeprazole 20 mg or lower can be administered simultaneously with HARVONI under fasted conditions.

The only way to take omepresol correctly with Harvoni is AT THE SAME TIME on an empty stomach.

Check the table for antacids either 4 hours before or 4 hours after Harvoni ONLY

and for H2 receptor antagonists like Pepcid Tagamet etc those are at the same time and 12 hours apart ONLY


The reason is the Ledipasvir is much less soluble in a less acidic environment so you will not be getting the full benefit of the Ledipasvir as effectively you are reducing your dose Sovaldi does not work as effectively alone.

Ask your doctor's office for guidance on taking acid reducing agents with Harvoni

[Mugwump]

Hello everyone.

My mother was recently diagnosed with Hep C, no clue how she contracted it.  She was given Harvoni for treatment and is experiencing blurry vision.  She hasn't had many other issues but her vision became blurry after her second day on the medication.  Has anyone experienced this?  She called the doctor and was told her blurry vision was not a side effect from the medication and to get her eyes checked. :-/  So, I am turning to the people with real answers.  Can anyone help provide an answer as to if this is a side effect of the Harvoni?  Thank you so much!

Yes there is blurred vision for some of us. I am on week 12 and was having trouble reading even with my glasses on. My blood pressure increased and I am certain that this increase caused some problems. Plus there seemed to be a marked slowing in how fast my eyes focus.

At week twelve it has all cleared, my blood pressure is back down and my eye sight over distance, sense of colors and speed to focus are now better than they were prior to treatment. For a while during treatment I took myself off the road because I knew my eye sight was causing difficulties in perspective!

So the good news is that your Mom should get over the problem. This problem was well know with Solvoldi treatment and so logically Harvoni causes the same problem. Make sure your Mom drinks water and tries to do things that will help with the increased blood pressure. I am sure she is being monitored for anything dangerous so don't worry.

There is increased renal stress during Harvoni treatment and to deal with it you need more fluids to flush the high level of cell exchange from the liver. All these things are discussed on the thread and elsewhere. Yes Harvoni is a powerful drug and needs to be carefully monitored, but as all here who have experienced other treatments for HCV will agree it is a walk in the park.

Give your Mom a kiss from me and everyone here!

Best wishes for an easy and happy treatment for your mom and many more happy years for you and her together!

Eric

[fllazylady]

Katie,
I have noticed great health changes since being on the cure. My nails and hair growing like crazy clear skin feeling stronger more energy. It's amazing how your body can feel when it's healthy I almost forgot what it felt like.
Light n Love
Paulette

[Rexray]

Well, after much pointless trepidation yesterday, I took my first dose at 9:30PM last night.
In bed at midnight and up at 6:30AM today, and I feel great. Oddly enough better than I may have predicted.
Here's Hopin'!

[grodeestok]

Rexray. Good luck with the treatment!  I was apprehensive too about side effects as I travel for a living. Started 5 days ago and so far no negatives at all!

Here's to hoping the same for you!

[deniseb00]

I finished my 12 week Harvoni treatment on Feb 3rd. I was about three weeks into treatment when my daily headaches began, as well as slight nausea.  My headaches would start in late afternoon at that time, and then progressed to them starting earlier and earlier. During this time I had been taking prescription pain meds, as well as advil to get me through, as my doctor asked me to do. Headaches continued to worsen, and even now (almost 2 1/2 weeks out of treatment) I am still getting them, which I don't understand, b/c I'm sure the Harvoni is out of my system. I do have an appt with my PCP next week, thinking that perhaps severe headaches are not the result of treatment but maybe have something else going on. Not time for an eye examine, so I ruled that out.  Has anyone else experienced this? I would appreciate any replies. Thank you so much for taking the time to read this. Love and Good Health to all.

[JoeK9999]

Denise,
I finished 12 weeks of Harvoni on Jan 15.
I didn't get headaches, but had lots of dizziness in the last 2 weeks of Harvoni.
I took me over 4 weeks to get back to normal after EOT.
Hope your headaches resolve soon.

[Mike2]

Just about finished first week on Harvoni played tennis for 2hrs 2 miles on the treadmil. Slight headache other then that I feel like the drug is giving me lots of energy.

[SunIsOut]

Hello Warriors,
It me Paulette. No good news on this end. Spent a week in Hospital battling high BP ever since they put me on Ribavirin to boost the treatment. I'm on week 15 still detectable. After I went on ribavirin my blood pressure was spiking put me in the hospital did stress test Catherization and now they put me back on ribavirin and my blood pressure is going out of control again Doc is changing my blood pressure medicine tomorrow getting a little weary. Has anyone else not cleared yet??
Sending you all Light n Love on your treatment...
Paulette

My doctors have me waiting to start treatment after my visit last Wednesday.  They are worried that the insurance company will not approve the 24 week treatment.  As a result they want to have me take Harvoni with Ribavirin for 12 weeks. They are trying to get this approved at present.

Here is an article on it. http://www.hepmag.com/articles/Harvoni_ribavirin_cirrhosis_2501_26459.shtml 

Did you start Harvoni with Ribavirin?  I do see that Ribavirin does have a known list of side effects and other dangers.

I hope your side effects diminish but wondered how you started the Ribavirin.  Also did you have BP challenges or other diagnosis prior to?  With the exception of this virus I am fit as a fiddle.

[Keanu2015]

Hi Everyone,
  thank you so much for all the helpful info. I have been reading some of the entries here on and off for days leading up to my start with Harvoni. I found myself praying that I would be approved for the 12 weeks of it that my Gastroenterologist ordered. I know some folks are having a lot of trouble getting approved for it. It's a gut wrenching process for sure. I feel so fortunate and blessed. I am praying that everyone will have access to this same life saving opportunity. I took my first pill yesterday at noon. I chose this as my time, because I am currently taking one 1/2 scoop of Ultra nourish from Natural Wellness and 1/2 scoop Ultimate meal from The Ultimate Life, along with Co Q10 and Garlic vitamins at 8 am. I don't know if they would interfere with Harvoni in any way. I'm assuming not as so far no one I have spoken to at support path objects. I don't see warnings about such anywhere in forums either. Anyway, I actually started feeling the pain in my liver subsiding. I was slightly dizzy and foggy yesterday afternoon and evening but was still able to do 30 mins cardio on treadmill around 7pm! A slight amount of pain was coming back around 10am after breakfast today. I took my second pill at noon and here two hours later I am pain free again. Why am I on the treadmill? Well besides being a Marine who, (not so bright sometimes), has set a goal. I strongly believe that cardio and lots of water will compliment the process of viral elimination from my body. I'm hoping to run/walk for 30 mins every other day along with guzzling water every day all day long. Can anyone help me verify if any of these herbal shakes I've described or vitamins aren't wise to take? I'm looking forward to getting to know you folks here. God bless you all.
_{Hep C dx 3/2000 = Likely infected mid 80's
Re-dx 1/16/2015- Hep C 1a - Ast 71 - Alt 126 - Fibrosure 0.90 F-4 Cirrhosis - Necroinflammatory 0.89 severe activity- VL 3,874864}

[Katie]

Hi Keanu and thanks for your service and congratulations on starting the Harvoni miracle cure!

Personally, I stopped my supplements, some of which I've been taking to help my liver and other issues for a decade.  I didn't want to take the chance of something working against the meds.  I do take Vit D every once in awhile as I am on the low normal side and hit rock bottom years ago that caused all sorts of issues.  I also take a Vit B complex in liquid form as needed, but both of these are taken in the morning and I take Harvoni around 9:30 at night. 

Our physicians aren't always familiar with supplements, and they often think they are a waste of money so I don't count on our them to advise me on that.  Many of the supplements I have taken have plants and seeds and roots listed so I am not sure exactly what is in them, but would do research and found some good for the liver and gallbladder function and for the circulatory system.  I will go back to them once treatment is completed, as they really have helped me in the past and I give them some credit for not having cirrhosis develop.

I would check ingredients and not take it if they contain St John's Wart as that has been listed as a supplement that interacts negatively with Harvoni.  I have a great pharmacist that I ask about interactions with the liver and have always consulted him on anything I take, for the past decade.  He has been great at steering me in the right direction with antibiotics, laxatives and supplements so when I go to my doctor I can discuss it with him.  Fortunately I am really healthy (other than joint issues) so I am not on any prescription medication.

So did you get your approval for the 12 weeks?  I will be finishing up the 12 weeks with only 5 more days to go.  I am in count down mode and am delighted sometimes, and then anxious sometimes.  I have been feeling so much better with Harvoni that I don't want the improvements to slide backwards!  There was a couple weeks that my fatigue and mood was bad but it is gone again, so there have been ups and downs, but overall it has just been a wonderful blessing, as is this forum.  Glad you found us.

Have a great day and keep the faith!  We are going to celebrate 2015 as a great year leading to a healthy life!

Katie

[Keanu2015]

Hi Katie,
 Thank you so much for your reply! I have been very healthy also with no meds or allergies outside of this awful situation I'm in, as if it's not enough right? I was diagnosed in 2000 with Hep C, (I'm thinking I got it around 85 or 86), and wouldn't even consider the "cure". It seemed too medieval to me. I knew a guy who went through it and he was not recommending it at all. Same as you I had always tried to find the best possible cocktail of supplements to move life ahead. (Currently green powder stuff with lots of plants seeds and roots! along with many vitamins). I read many books and I developed my own little plan with lots of tweaking through the years to try and fight this thing off. I found that if I added more such as ultra thistle or clinical liver supplement and LIV 52 it helped, so I imagined it was buying me more time--perhaps. Lately not a lot of what I was doing helped me much. I've been getting tired and I began experiencing discomfort on good days and some side sticker pain on bad ones, like during a long run. My ultrasound 1/16/15 was unremarkable and normal (Thank God) but my Fibrosure revealed F-4 and A3 inlflammatory -severe activity, so this couldn't have come at a better time for me. My doctor is hard to reach and not very well hands on so far outside of starting the approval process in motion. He said he will see me when I'm finished for a potential colonoscopy.(I put that off when I learned how serious my Hep C had become). I waited almost a month. His secretary let me know my prescrip came in. Yes it came in with 2 refills, so 12 weeks. The nurse at med path suggested I do something precisely as what you just shared. Perhaps spreading the nutritional powder shakes/ vitamins and Harvoni medication out. I think after hearing from you now, I will simply go with the Harvoni alone and a balanced diet moving forward on day 3. I'll put together a post Harvoni herbal health regimine later to try and regenerate my Liver if all goes well.. same. I maintained 2 of my pills as well for cardiovascular health. CoQ10 and garlic -setting the rest aside already. I have to whip this thing, my boys are too young to lose their daddy. Oh my goodness you are so close to there! Prayers your way! Hopefully we can have a huge victory party when it's done... agreed! K

[MEG]

Hi Katie, No worries about answering re; the fatigue. There are so many threads here that I forget where I found and asked what!

Before treatment it was horrible and got so bad the last 3 years or so that I finally retired.  It was like my joints had 100 pound weights in them and everything was a chore.  My productivity was affected and it wasn't fair to the technicians that worked under me and I am really glad I made the move.

You spoke for me...yes, feeling like my joints are 100 pound weights sometimes....Although, over the years, I've had great periods alternating with in-bed periods...When people see me riding my bike, in all the lycra gear ;-) they're shocked. 

But what they don't get is that people like yourself who have remodeled the house, I was living in the mountains last year and shoveled several times a week---we pace ourselves. It's not like a job where we must be "on" for 8-12 hours per day..

I hear you about the isolation. I am fundamentally a very social person. The adjustment was difficult--to say the least. But at one point I became quite inward focused. Worked on "stuff" from my childhood, etc. that needed addressing. And it became very comfortable to just stay in...

I'm now heading in the other direction--- balancing my genuine love for solitude and love for sharing my life with meaningful friendships.    I moved across the country last summer, preHarvoni, and since October with this protracted cold, it's been rough. Not having the network of friends to lean on yet being physically unable to make new connections.

I wish for you a wonderful last 5 days on the H cure!

[MEG]

Re: antacids and acids...

It was heavily stressed to me that these are the major meds/supplements that I need to be careful with. Lynn, as counterintuitive as it sounds, my doc confirmed that taking omeprazole at fasting along with H is the way to go....

Knowing that Sovaldi and Ledispavir love acidic environments, I've been chucking down a tablespoon of apple cider vinegar with my dinner time dose(I take my other meds in the am)....My sense is that it *may* help but it will not harm. Any little thing to max my chances of an SVR....esp since I'm only approved for 8 weeks.

Have a wonderful, healing day everyone. Thanks so much for being here...

[trithis]

TerryNF & nadewit:
I did some research and found that the human stomach runs a pH between 1-5.

Apple cider vinegar is normally 2-3 pH. Most antacids are well above 7 pH.

Optimum absorption of Harvoni looks to be around <2 pH.

I'm planning to take a sip of apple cider vinegar daily and only use a low-dose omeprazole when things get rough.

My best to all of you!

[SunIsOut]

I took my supplements into John Hopkins and they looked them over. They cautioned that the clinical trials and FDA approvals will include test with vitamins and such but there are too many herbs to test and therefore recommended that I not take them.

I will continue with the L-Theanine, Serapeptase, B complex but all others will wait. They want me to come in after 4, 8 and 12 weeks to test and see how the results are coming along and then again test at 24 weeks.

I hope to start on Wednesday assuming the Ribavirin gets delivered.  Also, just in case no one knows, if you go to the Gilead site for Harvoni you can apply for the coupon so your out of pocket does not exceed $5 per refill.  I gave the coupon to the pharmacy and works great.

[Katie]

Good information Sunisout!  I kind of figured that was the case but am happy to see they are being cautious and giving that information.  So many supplements and then so many companies, some good and some not so good.

Congratulations on starting treatment.  Hope all goes well with you!

Katie

[Keanu2015]

Thank you Sun is out and Katie,
 That is precisely the type of info I was looking for as well. Additionally I had a thought earlier after writing my last post to Katie. I realized that the herbal shakes and supplements I was taking such as ultra nourish from naturalwellness.com were to protect my liver and also to flush it with antioxidants. It makes sense to me that it would be natural for these components to also see Harvoni also as an intruder. In which case if those things were actually shielding my liver from foreign chemicals it might fight Harvoni! Yup it's probably best to leave the herbs alone for a while.
Thank you!

Hope you will both find your freedom from this wicked virus!

[nicole_1234]

 yes I quit all of my herbal supplements on the advice of my nurse. They just don't know enough and I truly believe in the medicinal effects of those supplements so I decided to quit in case there was any unknown interactions. I'm going to wait a week after I finished the treatment and then start a nice easy cleanse.

[Keanu2015]

Thank you Nicole!

        The more I here this, the more I feel better about abandoning all that I've known for the past 15 years. Tomorrow morning I"ll wake up a bit lost as to how I'll replace some of my core vitamins that always show as 'complete' on my fitness pal. Not thrilled that I'll have to drink OJ, what with its 14 grams of sugars/ cup to replace what came to me in green powder as one of the many ingredients of the ultimate meal. Your stats look fab! Happy for you!

K

[MEG]

Keanu----thanks so much for mentioning antioxidants while on Harvoni perhaps being counter productive....people on chemo for cancer are told to not take antioxidants for the very same reason. The only one I've been taking is Vit C to fend off this stubborn cold that began last October(!)....

I'm wondering if I should drop it since it's obviously not helping the cold...I have 4 more weeks to go out of 8 weeks. Trying my best to absolutely maximize H's chances of a cure...

Re: the orange juice...I know, it has so much sugar. I've not had a glass in many years. But how about the whole fruit?

[Keanu2015]

Hi Meg,

      The fact that you have a persistent cold got my wheels turning after I read this. I'm having some minor issues today with my lungs (Harvoni day 2) I have to cough once in a while. My throat is slightly sore too. Almost like a slight cold beginning. Perhaps it's not related and only coincidental. To be honest I was considering taking a C tab for this lung thing. I'm not sure now either. Perhaps it's a symptom of this drug and the C was never going to work? Thank you for the advice... I'm going to get the whole fruit Looks like my home is going to be filled with a lot more perishables than I've had in years! thanks for you input on chemo! I never knew that. So maybe it does make sense for us too. Hope you beat this thing! I think we all have a very good chance now. Nice chatting with everyone here today.. Goodnight friends

[Katie]

Meg...that cold has been with you way too long!  Have you had your Vit D level checked recently.  I used to get colds and would have them for months whereas others would get rid of them in less than a week.  I insisted on a Vit D level checked and it came back at 13. (normal range is 25-75 and over 80 is toxic) When the nurse got the results she actually called me to get me on it ASAP.  Since I've been keeping my level in the normal range, I think I've had 2 short lived colds in the past 8 years!  Maybe longer, actually.  Time rushes by.

It would be worth checking out!

Katie

[Katie]

I have a grapefruit almost every morning with whole grain toast.  My body craves it.  Since I take Harvoni a couple hours before bedtime, I figure it is all good.

Hope you are all enjoying your evening and weekend and you both get rid of the bug (if that's what you have Keanu).  Feel better Meg!

Katie

[MEG]

Thanks Katie for your concern..

Ya, several years ago my D level was 20. I've since been taking anywhere from 2K-5K units depending on time of the year. Go up in the winter and down in the summer. My levels have been anywhere from 40s-70s....

I wish that were the problem!

While on Vit D topic. While surfing around tonight, I found this article on how Vit D may help hcv treatment, svr's...Pretty interesting and great results by an Italian hospital with the interferon/riba protocol...I'd not known that Vit D was in the discussion as a helpful agent in actually managing hcv related liver issues and as a treatment adjuvant.  We learn something every day...;-)

http://www.journal-of-hepatology.eu/article/S0168-8278(12)00602-2/fulltext

[Katie]

Interesting.  Thanks Meg and the article explains a lot!  I had a cold that turned into a sinus infection that lasted a year, brought on tinnitus and this was before I was diagnosed with the alien virus Hep C.  A very devastating part of my life, but we survive.  It was actually because of it that I was diagnosed as my liver enzymes came back high.  I was so sick and was on and off antibiotics for that entire year.  I am sure that didn't do me any good...and here it was just Vit D.

Knowledge is power.

[LenFreeHepC]

Hi there,

It's my third day on Harvoni. So far so good. I feel maybe just a little nausea, and it takes me longer than usual to fall asleep, but I relate it more to the adrenalin levels, since I'm very excited about all this treatment.

The things is that my virus load is 1M. And according to the recommendations, I am allowed to take the med for 8 weeks only, but my doctor told me first that it's still better to take it for 12 weeks and then she told me actually it's my decision.
This all's been very confusing.
Anyone else here with <6M load? How much time you doctor recommends to take the med in your case?
 

[MEG]

Katie, I'm glad the article helped you too.

How interesting that you bring up sinus infections. I'm now recalling that 21 years ago my symptoms began with constant sinus infections. But my pcp at the time couldn't explain why I suffered the profound fatigue that was getting worse and worse. She actually accused me of being depressed and stressed at my job----I'd confided pre-getting sick, during a physical, that work had been stressful, lots of management/personnel problems, but was getting support from a psychiatrist that I'd been seeing for several years for issues unrelated to work. I emphasized that I truly loved ICU/ER nursing despite the then current stress.  Work was my source of feeling productive and accomplished.  She was convinced that she was right.  She reluctantly sent me for more blood work---this is back in the days when they gave you the lab slip and hand-checked the boxes. The ICU nurse in me took over----"don't know what's going on with this kiddo? Let's do a full-on workup!" I checked off LFT's, Thyroid panel, and ANA(checking for lupus(!) and many others that I cannot remember right now. 

Indeed, my LFT's had doubled, at high normal range(40s) compared to teens/20s when I'd had my physical the year before.

To add insult to her injured ego--- I eventually asked for my medical record copies to self-refer to another pcp.  She had written, "I ordered a CBC and patient checked off a litany(!) of inappropriate tests." 

Meanwhile, my psychiatrist called her(without my asking) to let her know that "this patient does not cope with stress by not working. That working is what keeps her going).  That not being believed was causing her added stress and depression." PCP did.not.appreciate. this.

She reluctantly made Infectious Disease referral, yet set me up so that the ID doc, from the initial hand shake, diminished me. Went into this whole pscychobabble that he was unqualified to indulge in. But to his credit and to cover all bases, he did order the HCV test and voilá!

At the next appt where she reviewed the HCV and LFT's, I recall her not apologizing for the additional agony that she caused by not believing me......As a nurse in the ICU, we apologized to parents when we missed something. When it took us longer than it could if only we'd listened to a mom saying, "I know my child and he looks fine to you but he's not fine."   They appreciated the honesty. 

At the end of the appt when she told me she wanted to see me post hepatologist consult, I told her, "Nah, highly intelligent doctors in this city are a dime a dozen(it was true as this is a top medical institution(s) city, but I now can't believe I said that to her) and I'm going to find one who will not sabotage me."

 Her head drooped down in astonishment/shame. 

I can't believe a discussion of sinus infections triggered this long-buried memory. And I apologize for it's length.

The truth is that she was an anomaly. I always enjoyed  excellent and collaborative relationships with my physician colleagues in the ICU. And with my personal health care providers.  My subsequent PCPs(I moved a few times) believed me and were wonderful in every way. My hepatologist is a rock star in my mind because he's super smart---and incredibly human. Known him for 20 years at this point and he's in charge no matter where I live.  We've shared family photos for years.  I give his baby daughter a Christmas gift, etc., etc. 

Good Sunday morning, Kate.....It's amazing all the stories that hepC has authored....we could probably compile our stories into a book. 

I hope you have a healing Sunday.!

[MEG]

Hi LenFreeHepC,

Welcome. I've only been here a short while and I'm finding this group to be a wonderful support system and people here share generously whatever knowledge they have.

I happen to be on the 8 week regimen but I was not given a choice....I didn't question it until I came here to learn that most here are on 12 weeks and unfortunately, one of the members on 8 weeks was not undetectable at end of treatment(EOT)......

After dissecting the FDA approval document where they describe all the trial results, the numbers look like for those who have viral loads less than 6million that 8 weeks is enough.  That the relapsers had greater than 6 million viral loads. My problem with this is that the number of patients were relatively small to generalize to the several million of us out there with HCV.   I will be pushing my doctor for 12 weeks.

It appears that 1b genotype patients are doing better on 8 weeks but the tougher to treat 1a are more likely to relapse, if they indeed do.

My advice is that if you have a choice, go for the 12 weeks. The side effects are generally minimal and even if they become more intense, they will never be like the interferon/ribavirin side effects. The extra "insurance" is worth it. I wish I had a choice.

What is your genotype?

[LenFreeHepC]

Hi MEG,

thank you so much for your reply.

I'm 1b.

I wish you will succeed to persuade your doctor to approve 12 weeks for you.

I'll tell you what I'm concerned of: long term side effects. This is why I'd rather take it 8 weeks if possible. But you're right: you cannot be sure in this case..

The problem is that on one side it's unbelievable that we finally have such a treatment. On the other hand though, my mind would be easier if this treatment's been proved itself for many years, you know what I mean.

However, I have jumped to have it the moment it was available to me, so I'd rather take some risks but be free of Hep C I believe.

[Keanu2015]

Hello Everyone!

      I would like to start by sharing a bit with Len. Len my HCV RNA (iu) was 3874864 My HCV RNA (log IU/ML) 6.59 I'm still not sure how to read those. I figured I was under 6million but then what is 6.59? Anyway, when my doctor started the request for approval those were the figures. I'm on day 3 also and have experienced precisely the same things as you. I had the adrenaline issues as well! Especially after hearing the day before that it was being shipped to my pharmacy...Barely slept that night. I waited over a month for approval and even with my horrific stats I was still worried about my insurance picking it up. My doctor authorized 12 weeks for the reason that I am F-4 cirrhosis, A3 severe activity. I never knew that I would have such numbers if my eyes and skin weren't turning yellow. I never got to such a point and I look at myself everyday. I constantly looked under my eyes for bad signs. I knew I had this thing for a long time but those figures were a scary wake up call. I'm so glad I am able to have a chance at healing. That was the longest month in my life. I am a 1a btw.

[LenFreeHepC]

Hi Keanu2015!

So we started together:) Hope it goes well for both of us and for everyone here.
No, unfortunately I don't know how to read this, have you tried asking your doctor or google it? maybe someone else in this forum knows?

How long you've been having the disease? I've been having it for 30 years now, and have been lucky to stay with F0-F1 until now..

[Katie]

Hi Keanu,  I posted this to a different thread when Lou asked the same thing about logaarithims.  Hope it is helpful.  So your 3 million would equal a 6 log.    Having the VL in the millions is really normal as it replicates exponentially. 

Katie

Hi Lou,  A logarithim is a short cut for really big numbers.  If the question put to you is "How many numbers do we multiply to get 7.924.270 with a base of 10 (how many 10's)?   You basically count how many 10 places and in the case of millions it is 6, (10 million or more would be 7)  It is the reverse of squaring or cubing....(exponential) a number.

Example How many 2's (base of 2 instead of 10) do we need to get to 8?

2 X 2 X 2 = 8 so the answer is log(2) = 3

Base 10 is usually used in science or medical calculations and it just makes dealing with very large or very small numbers easier to deal with.  Hope that helps.

[MEG]

You're welcome, Len. 1bers definitely do better than 1a's...But I have to keep in perspective that overall 95%+ are cured.

Ya, having years of experience with the medication would be great. The good news is that they do extensive safety testing before it hits the major trials. The technology for the testing has improved vastly in the past 20 years.  And it seems like Harvoni and these other DAA's are made to behave like a laser target for the virus----constructed to attack the exact location that instructs it to replicate itself. Unlike conventional chemo for cancer that indiscriminantly attacks all cells. 

Good luck on your 12 weeks and do keep us posted. Just this morning my doctor's nurse practitioner just sent me an email(I wrote to him this w/e since my doc is on vacation and out of the country) saying that they are seeing 8weekers going undetected and reaching SVR12...it was heartening to hear. Although we both agree that we'd feel better if I was doing 12weeks.

I'm due for my 4 week on-treatment labs this Wed. Praying for undetectable. Even though the success will be when I'm  undetectable 12 weeks post EOT, getting little nuggets of good news is always a spirit-lifter....

Have a wonderful day,

[Keanu2015]

Hi Meg, Len, Katie,
    Thank you for all the great info you shared. I think if you want more (Len and Meg) you should both definitely push your doctors! I don't see a good reason for 8 weeks if you want more, except to pass the insurance company's protocol and they are just trying to save money! 
If the cost for an extra bottle is out of reach there are resources available to help you!
Thank you Katie! I"m going back over what you wrote in a minute I'm lost! lol
Len I think I've had it since 85/86. I think it's great that you stayed F-0 F-1. I have a feeling mine boosted from there to where I am now really fast- since like 2013

[Katie]

Thank you Katie! I"m going back over what you wrote in a minute I'm lost! lol

It's confusing but just think of 10 squared = 100 (log(10) = 2 and 10 cubed = 1000 log (10) = 3 ....etc.  to 1,000,000 = log(10) = 6.

You need a scientific calculator when it doesn't come out even.  I am familiar with it as I got a biology degree and used it all of the time.  I was SO happy when the Texas Instrument science calculator came out and I could put away my slide rule!  HA. Ya, I am old!

Katie

[LenFreeHepC]

MEG, are you in states?
I'm in Canada and my insurance has only approved 80%, but the rest, as I understood from my doctor, was picked by Gilead. Maybe worth asking for yourself.

Keanu,
I really don't know what has influenced this, I've got it in a very young age( maybe my immune system was very strong then, also I'm under 40 now, and relatively slim. But I hope it doesn't matter already for us on Harvoni or going to be soon.

I'll keep you posted, will be glad to hear the good news from all of you. It really helps to be here on this forum!!!

[dennyhil]

Hi Folks,

dennyhil here - so glad I found this forum.  Thank you for allowing me in.

I'm 57 yr old man with Hep C.  I went through Interferon / ribaviron treatment in 06 / 07 and it damn near killed me.  I lost my job, and almost lost my marriage.  (My marriage survived and we are OK) - After the treatment my viral load was zero, and I was deemed successful.  2 years later I relapsed.. the viral load returned.

Fast forward 8 years and I've recovered emotionally / financially - I have no symptoms but my doc has been telling me to go to my gastroenterologist and get back into treatment.  That was 1 year ago...   I have done nothing because I live in fear of any treatment after what happened last time.. Now I'm hearing and reading all about this new drug....

The job I have had for the last 7 years has amazing insurance  Providence health care.  My premiums are low, and the coverage is complete.  An example is I've had 2 major surgeries and I've paid zero out of pocket.  I have a friend at work that has exact same coverage as me that has multiple myloma.  He's undergone stem cell transplant and bone marrow, plus everything else that goes with the disease.  same thing - zero out of pocket.

I go in to see my gastroenterologist tomorrow to begin the qualification process for this new drug Harvoni..  I also have begun sessions with a psychologist for additional support.  I have great support of wife and family.  I'm hopeful and excited, and based on what I've read here about success rate and limited side effects, very much "less fearful".

That's my quick story..  I'll be checking in and reporting updates / progress etc.

Lastly I want to give a heartfelt congratulations to those of you that are in the Harvoni program, and to those of you that have successfully completed the Harvoni treatment. You have persevered, and hopefully will have the rest of your life in good health.

To those that can't get the medication due to insurance refusals or other complications, my heart goes out to you..  Please hang in there.. and keep posting.  I have hope that things will change..

I don't know which side of this I'll be on yet - Treatment / insurance refusal / medical complications - I just don't know, but I am diving in, and will post frequently.

Thanks,
  Denny

[MEG]

Hi Len and Keanau, I'm in the states. I'm on Medicare with Blue Cross/Blue Shield managing it. They approved for only 8 weeks and Gilead covered my $6K co-pay.

I will call Gilead first thing tomorrow and tell them my situation.  And the pharmacy who has handled my claim.  Hopefully get the ball rolling before my hepatologist comes back from vacation in 10 days. I have 4 weeks left and boy, the first 4 flew by in the blink of an eye.

[LenFreeHepC]

Hi Denny,

Thank you for your wishes and I join you wishing luck to all those waiting for the approval.

Hope you receive the approval quickly and start the treatment.
Yeah it is supposed to be more successful than interferon. I've never gone through the interferon treatment but was surprised the virus did it's comeback to you after 2 years!! I thought if you're free of it after 1 year you should be good.. wow..
I hope you will share with us the good news very soon!

[LenFreeHepC]

MEG wish you a good luck, pls keep us posted!

[Katie]

Hi Denny and a big welcome to you.  With your great insurance, I bet it goes right through.  We are so lucky this breakthrough came about in time to help all of us. I refused the old treatment as I couldn't take the chance of the side effects as I had to work and the cure rate for GT 1a was so slim, it wasn't worth it.  I was waiting for Harvoni and to my surprise and delight it happened. 

I don't have a clue, where I got the virus or when, but I did get really sick in the late 80's and then after a few months, I felt GREAT, doing fishery field research which included strenuous physical work.  Eventually I ended up in the office training techs and running a project, analyzing data and writing reports.  I swear, sitting behind a desk was the worse thing I could have done.  I got slowly sick to the point where I retired in 2013 and it worked out well as I was ready at that time, but it was so discouraging to retire and feel so lousy!  Then came Harvoni and I am in my 12 week countdown with 4 days left, and I have to tell you, I have felt better this past 11 weeks than I have in years.

I hope your treatment is as good as mine.  My only difficulty was week 9 and 10 where the fatigue and gloom and doom returned and then one morning, I woke up and felt good again.  Just wanted to let you know the effects seem to cycle with ups and downs.  Two others started the same day as I did and our experiences were the same, which I found interesting.

So...good luck to you.  The treatment time flies by and now for me the waiting will soon begin.  That is going to be the most difficult part and hope I am successful with the cure.  I hope EVERYONE is cleared as if it works as well as it is suppose to, This nasty, alien virus will be wiped out!

I'm off to finish painting my bedroom....that's how good I am feeling!

Katie

[Thomas B]

Hello to All!
I am on day 5 with Harvoni. Sides are slight headache and some pain in my liver area with blurred vision. I will do twelve weeks. I have 1a with a viral load of 15 million. I did the Pegasys (peginterferon alfa-2a) in 2001 and lost 50 lbs. and ended in failure. I have been living with hep c for 35 years. My vitamin d is dangerously low. Doc called about it and will start me on it this week. I get a burst of energy about an hour after taking the harvoni that lasts about 6 hours then I go flat. I take it  at 3 pm. I am now having trouble sleeping also. I am very thankful for Harvoni and also for this forum. I have been coming here often prior to starting harvoni and I thank you all for preparing me. I will post any news I have. I pray for us all and for those having trouble getting Harvoni. God bless

[mario555]

Thomas b. Surprising you only got 12 weeks with your viral load and previous fail... I have a similar hep c history and I had 24 weeks prescribed and I am thankful for that. After 14 weeks I am getting similar side effects as the ones I had after 4-5 weeks. It feels like there were "pockets" of viruses that are just being flushed out. Review your history with your doctor and the company's instructions just to make sure you're getting the optimal treatment rather than the cheapest... Good luck!

[Thomas B]

Thanks mario555
I thought the same thing myself. I will discuss it with doc Monday. I should have said some thing at first but I was just over joyed to have been approved. Peace!

[Thomas B]

Hi Folks,

dennyhil here - so glad I found this forum.  Thank you for allowing me in.

I'm 57 yr old man with Hep C.  I went through Interferon / ribaviron treatment in 06 / 07 and it damn near killed me.  I lost my job, and almost lost my marriage.  (My marriage survived and we are OK) - After the treatment my viral load was zero, and I was deemed successful.  2 years later I relapsed.. the viral load returned.

Fast forward 8 years and I've recovered emotionally / financially - I have no symptoms but my doc has been telling me to go to my gastroenterologist and get back into treatment.  That was 1 year ago...   I have done nothing because I live in fear of any treatment after what happened last time.. Now I'm hearing and reading all about this new drug....

The job I have had for the last 7 years has amazing insurance  Providence health care.  My premiums are low, and the coverage is complete.  An example is I've had 2 major surgeries and I've paid zero out of pocket.  I have a friend at work that has exact same coverage as me that has multiple myloma.  He's undergone stem cell transplant and bone marrow, plus everything else that goes with the disease.  same thing - zero out of pocket.

I go in to see my gastroenterologist tomorrow to begin the qualification process for this new drug Harvoni..  I also have begun sessions with a psychologist for additional support.  I have great support of wife and family.  I'm hopeful and excited, and based on what I've read here about success rate and limited side effects, very much "less fearful".

That's my quick story..  I'll be checking in and reporting updates / progress etc.

Lastly I want to give a heartfelt congratulations to those of you that are in the Harvoni program, and to those of you that have successfully completed the Harvoni treatment. You have persevered, and hopefully will have the rest of your life in good health.

To those that can't get the medication due to insurance refusals or other complications, my heart goes out to you..  Please hang in there.. and keep posting.  I have hope that things will change..

I don't know which side of this I'll be on yet - Treatment / insurance refusal / medical complications - I just don't know, but I am diving in, and will post frequently.

Thanks,
  Denny

I am praying for you that you will qualify and get harvoni and be cured. God bless You!

[Keanu2015]

Hi Denny Thomas and Mario,
     Thank you for sharing all of your stories and info. I'm like a sponge trying to pick it all up! Thomas I TOTALLY agree with Mario. From all of the research I have done and it's also based on years of watching for this miracle cure to present itself, I see that the same way... 24. Maybe they want to add Ribavirin to your regimine?
Katie thank you and I think it's awesome that you are going to be painting. I have tried to avoid it like the plague until I'm forced to paint. When I do I wear a mask w carbon filters. My lungs can't handle any fumes. I get sick from them quick. I attribute all of it to my liver problems. Thomas I have seen this happening to quite a few others with the Vitamin D thing. You're not alone. Denny Good luck.. Hope you're approved soon! Meg I'm glad you were able to use the Gilead coupon! I have Humana Medicare advantage. Coupon was shot down. Co pays were $4000.00...PANF picked them up for me! God bless you all.

[575to505]

Hi everyone! I'm new here and new on Harvoni, 10 days to be exact! I take my pill about 9:15 am and I havnt had any side effects! Rather, I've had very minimal ones. I've had 3 slight nose bleeds and that's it. I have heart issues so I'm unable to drink a lot of water. I hope that doesn't hinder getting rid of it.
I eat a lot of fresh and canned fruit. Does anyone know if that will affect negatively? Should I cut back, or cut out completely? What about any other diet changes?
Having no side effects is great but I hope it's working. I guess I'll find out when I take labs at 4 weeks in.
Thanks in advance for your feedback

[SunIsOut]

Hi everyone! I'm new here and new on Harvoni, 10 days to be exact! I take my pill about 9:15 am and I havnt had any side effects! Rather, I've had very minimal ones. I've had 3 slight nose bleeds and that's it. I have heart issues so I'm unable to drink a lot of water. I hope that doesn't hinder getting rid of it.
I eat a lot of fresh and canned fruit. Does anyone know if that will affect negatively? Should I cut back, or cut out completely? What about any other diet changes?
Having no side effects is great but I hope it's working. I guess I'll find out when I take labs at 4 weeks in.
Thanks in advance for your feedback

I met with my team at John Hopkins last Wednesday.  They recommended taking the medication in the morning.  I eat organic yogurt and mix in fresh berries each morning and also have a banana.  I asked about my diet which is organic as much as I can plus meats, fishes, vegetables.  I also eat a sprouted bread from Food for Life http://www.foodforlife.com/product/breads/7-sprouted-grains-bread which has no sugar added.

The doctors said I did not need to make any dietary changes and to continue to use the healthy choices. I use natures promise on poultry and beef and wild caught or organic fish.

I read the Vitamin D article posted earlier and think it would be good to supplement 2000iu per day.

I am not a doctor but based on what mine told me you are good with your fruit!

I hope to start my treatment this Wednesday once the Ribavirin arrives in the mail. I will be taking one harvoni and one Ribavirin in morning and one more 200mg capsule of Ribavirin in the evening for the 12 week treatment. 

[Katie]

. Does anyone know if that will affect negatively? Should I cut back, or cut out completely? What about any other diet changes?
Having no side effects is great but I hope it's working. I guess I'll find out when I take labs at 4 weeks in.
Thanks in advance for your feedback

Welcome 575..I would be cautious with any herbal supplements you might take.  Some of the combos have many ingredients and they all haven't been tested for interactions with Harvoni, even though they may be good for the liver.  Sunisout, mentioned this if you check her posts.  (I am assuming Sun is a she from her name, but could be wrong on that)  HA!

Congratulations on getting this cure and finding this forum.  It has been a blessing for me!

Katie

[SunIsOut]

Ha Ha. No, I am all man. Sailor, golfer, gardener and live on the waterfront in Southern Maryland! Here is my beloved sailboat and I hope to have many more years on the water with her!

[Keanu2015]

Hi 575,
     I'm inclined to agree with Katie and Sunisout on this one. I'm on day 3 of 12 weeks. No one could really give me definitive answers on my supplements and liver health herbal shakes. One fellow at Gilead said, "look if you're not sure, it's only 12 weeks right?". I actually feel that I learned more from putting my feelers out into this forum. We are a team of intelligent sufferers here who are going whip the crap out of this beast!
As far as your various fruits and things I wouldn't worry as long as you are leaning more towards natural. I would think that canned fruit is ok once in a while, but don't staple them because they're high in added sugar and/or sodium and our struggling livers don't like too much of those. I have the fitness pal app on my smart phone. I watch my sugar, sodium and vitamin levels on there throughout the day. I don't think I will supplement with anything now for 12 weeks including vitamin D. I'll look to Tuna fish, Salmon and sardines along with milk and other sources to meet my goal there. Fitness pal also shows vitamin A and Iron levels along with Fiber, carbs and fats. Fiber is good as I'm sure you're aware for your heart. Vitamin A and Iron you'll want to keep down as they harm the liver when it's in distress. Yogurt is an excellent choice as sunisout mentioned. Try for lower sugar-more probiotics varieties to aid in digestion. Good luck to you!

[Katie]

Ha Ha. No, I am all man. Sailor, golfer, gardener and live on the waterfront in Southern Maryland!

Opps...when I typed her...I went wellllll, that might not be the case!  LOL
Perfect name for someone with your activities.  I live on the coast of SSE Alaska and enjoy the inside waters of the Pacific so much.  Our winter has been much better than yours though.  We haven't had winter.  Really odd.  February has been in the high 40's and low 50's with yesterday almost 60 on my front porch.  I've been enjoying it, but it just feels wrong.

Katie

Beautiful boat!

[Keanu2015]

Nice boat Sunisout! When you said sailor I was wondering if I might have to call you squid. I'm a jarhead lol
Katie, we had a "heat wave" in NE Pa. here today.. It was 38!
Unfortunately looks like the minus digits are coming right back to us tomorrow night. It was great to feel some sun. (Which btw is another good source of Vitamin D! 

[Mugwump]

Hi everyone! I'm new here and new on Harvoni, 10 days to be exact! I take my pill about 9:15 am and I havnt had any side effects! Rather, I've had very minimal ones. I've had 3 slight nose bleeds and that's it. I have heart issues so I'm unable to drink a lot of water. I hope that doesn't hinder getting rid of it.
I eat a lot of fresh and canned fruit. Does anyone know if that will affect negatively? Should I cut back, or cut out completely? What about any other diet changes?
Having no side effects is great but I hope it's working. I guess I'll find out when I take labs at 4 weeks in.
Thanks in advance for your feedback

Even though you really do need more water to help flush the system more than normal during treatment, remember that there can be more fluids in what you eat. For instance if this was the summer season and I was living in Texas, then I might just eat a swack of water melon instead of drinking extra water. So consider eating fruits that contain less sugar and more water if at all possible during treatment.

Watch the sugar content of what you are eating and try to include more things like black beans and other legumes that contain higher levels of soluble fibers. This should help greatly as the liver will be exchanging dead cells and many who have more advanced liver disease like myself have found that during the first 8 weeks of treatment you do pass more urine and can become dehydrated more easily and thus run into troubles with digestion and passing stools.

I even did the old school routine of taking 3 table spoons of olive oil straight to straighten out things. THE RELIEF WAS GOOD 'nough said!

It is important that you have a more acidic stomach for the ingestion of Harvoni because the lediposvir component can be effected by too high a ph level in the stomach and will not be absorbed as well if you take antacid tabs!  In fact they are strongly contraindicated and your physician should be contacted if you need help with severe digestive issues, should you run into them.

A balanced diet is the best approach. Liver friendly foods like coleslaw, tacos with beans,  balanced fruit salads, soups that are lower in sodium, plantain chips fried in olive oil and lightly salted with Greek seasonings. Fruits like blueberries that are higher in antioxidants, I use them in salad dressings made with yogurt and spices. Use apples and pears chopped in small pieces in your salads.

This kind of diet making sure to only consume small portions of meats will be the easiest way to help your liver deal with the treatment.

When I started treatment with stage 4 cirrhosis I was in constant pain in my liver and as the treatment progressed there was increased pain in my kidneys due to the rapid increase in pressure on renal system. The pain was not severe or dangerous, neither was the slight increase in blood pressure.

After 12 weeks of treatment the pain in my liver is gone, the ringing in my ears is backed down, my vision is clearing and I feel almost healthy for the first time in a very long time.

To conclude Harvoni will create some stress on the renal and bowel functions, but nothing that cannot be dealt with by a moderate sensible diet and exercise.

take care and eat healthy

Eric

[nicole_1234]

I'm starting to feel a bit nervous again. It's the last two days of treatment for me and all these things are flying through my head. I never found out what my viral load was at the beginning and my doctor said I don't have cirrhosis so I should do 12 weeks, but we haven't tested for that in years I don't know how she would know. I've never done a biopsy and the last time I had an ultrasound I can't even remember when it was. I'm seeing her tomorrow.  Should I ask her all of these questions and make sure it's conclusive why I've been doing the 12 week program?

I'm 38 years old and have had this for maybe 15 years. I've been especially healthy the last couple years and feel pretty healthy. My stats have always been just slightly elevated.

I also saw they were allowing me online to refill again and secretly thought of continuing for 2 more weeks if they allow the refill, but what if they try to charge me full price later for going over my prescribed amount? I'm trying to tell myself I'm just being silly and I should be glad that I can stop now.

I'm happy to end treatment, but just really hope I did everything right and that it will work. Relapsing the last time after 48 week int/riba was the worst day ever. They told me I was a slow responder and should have continued for 72 weeks, but I just couldn't bear it anymore so I quit and the virus came back two weeks later.

Well I'm trying to look on the bright side even if the virus does come back this time at least I know there's other options besides interferon for 72 weeks and taking Harvoni  really wasn't that bad. It's hard when the mind wanders to these places, trying to be in the moment. What will be will be.

Anyway I know a couple other people here are finishing the same day I am, so cheers to us and I hope we all have the best results a big negative 12 weeks from now!

Nervous and hopeful!
Nicole

[Katie]

Hi Sister!  I am nervous too.  I don't want the good things to back slide like sleeping and dreaming and basically just doing better all the way around without severe fatigue (except for week 9&10).  Since I was still VL 59 @ 4 weeks and so many come back UD at that time I have doubt creep in, even though what I've read seems to say it doesn't matter what your VL is during treatment as the tests can't go to zero and all that matters is 12 and 24 at SVR.  We've been waiting for so long for a cure that I guess it is normal to have doubts, and I know the next 12+ weeks will be hard on me.  Harvoni works differently than the old treatment as it stops it's ability to replicate and it can't survive without replicating.  It is totally different from int/riba

My insurance needed a current VL before they approved so it is strange you didn't have a check.  Are you sure it wasn't part of another blood test?  I would ask for copies of ALL Of your blood work for your records.  I would ask her how she knows you don't have cirrhosis.  You probably don't since you are so healthy but things can change and it would be nice to know where you stand.

I had an ultrasound every year (for the past 9) and they were always "unremarkable" or normal; I never had a biopsy either.  Didn't want them stirring things up in there. HA!  After I got my diagnosis I really protected my liver and took supplements to assist it as much as I could.  I had already stopped drinking cause it made me feel crappy for a day or two, so that is probably why I am as healthy as I am

We are on the home stretch Nicole along with Island Girl and we are going to do fine!  We have each other and we have really been fairly consistent with our side effects and that is comforting.  I have 3 pills left...you only have 2?  Did I miss one?  I don't think I did.  LOL

I am going to try and have the mind set of Don't Worry, Be Happy and besides, I am STILL working on my remodel....I am so slow but it is looking pretty and I'm getting down to the finishing touches.  That will keep me busy.

Any time you need to talk or vent or complain or to celebrate, I am here for you.

We'll be doing the Happy Dance before you know it!!!!

Katie

[Tpropane]

I take my pill at 6 am.I set my iPhone alarm. I take it with a probiotic shot and water that I keep next to my bed. I usually go back to sleep until 7:30 or so. I feel like what ever side effects there might be...I'm far into them or beyond them by bed time. The one thing I don't want to do is lose healing sleep.Starting Week 5 of 24 weeks on Harvoni - I feel so much better. I haven't gotten my 4 week blood-work back yet. (Hopefully tomorrow)  but at 2 weeks I was 174. I kind of feel more energized. I am, however, eating and drinking healthier than I ever have in my life!. I was practically bedridden at the start. But really feeling at the ability to get up and do stuff.I got a new juicer and the tumeric tonic and green juices seem to give me a boost. Coffee with a coconut creamer as I am trying to cut out dairy.My eyes are clearer. My face is less red, my pee isn't brown. Counting small blessings.
Tonight was Oscar Night and to go with another post. I had a glass of champagne. I am drinking lots of water to flush it out. It was stupid and reckless and I wanted more, I could have drunk the whole bottle. I have freaking cirrhosis! I really need to get a grip. So instead of beating myself up over it. I'm going to bed. I'm going to drink a lot of water. And wonder why Gilead isn't advertising at the Oscars or the Grammy's because I'll bet a full third of those people have HCV!

[Tpropane]

ISLAND GIRL - before you miss one pill. You need the status of your liver. You are non naive. And therefore hit your doctor over the head with a club before you take the last pill. Confirm via, ultrasound, fibroscan or last case biopsy the status of your liver. You may need 24 weeks....OR NOT. Not would be great. But you need to know. WTF? Be your own advocate!!!
I went from nothing. To cirrhosis in 3 years. My doctor and I (I take full responsibility) sat back and did nothing after boceprovir failed. I think failing on boceprovir caused the rapid liver damage. But that is mere speculation. 0-60 like a Ferrarri.

[SunIsOut]

My insurance declined the Ribavirin with Harvoni so I start tomorrow morning. Looking forward to getting this behind me!

[Islandgirl]

Good morning!

Katie & Nicole, yes, I'm nervous too   I have 3 pills left and will take the last one when my phone alarm goes off at 6:00 PM on Wednesday, the 25th!!!!!  Yes, that waiting period we're facing is gonna be tough!  Yes, we're gonna make it and have our Happy Dance

Tpropane, I really appreciate your concern and comments.  I may not have put my past history/tests/etc all on line, but all needed tests have been done - including a past liver biopsy which showed stage 1 fibrosis (portal fibrosis) NO cirrhosis; no architectural distortion.  I've also had annual ultrasounds that have always been unremarkable or normal.  My insurance did require an updated viral load (like Katie's) and it was "less than 5 million".  I'm "treatment Naive" - Since I have 1b genotype I never took any of the previous treatments as the chance of success did not outweigh the risk.  I've managed with milk thistle and other healthy lifestyle methods until my GI and I decided the right med had finally arrived.  My insurance approved the 12 wk Harvoni, which my doc requested and I agreed with - with my  history and pretreatment tests results I doubt 24 wks would have been approved or needed. 

You're a sweetheart to worry about it - sorry I didn't put the rest of my history down for you to view.  I did receive the coveted "Not Detected" (UND) on both my HCV RNA PCR Quant and HCV RNA PCR Quant Log at my 4 wk lab results.  ALT 18 & AST 34 - remarkably improved over past tests!

It sounds like you're taking very good care of yourself, we'll look forward to hearing your 4 wk results soon.  Tell us about the tumeric tonic...  Holding positive thought for you as you move toward our shared goal!  hugs,  ....Islandgirl

PS to SunIsOut (love your boat pic)  Hooray!  Hope the fair wind sends you right to "undetected"   Good sailing  ...Islandgirl

[MEG]

Hi Nicole, Katie, Islandgirl and Tpropane...I read your posts and I got so emotional for you all......I can't imagine what it must feel like to be taking the last pill of this medication that you've been waiting for for so many years...

Just know that I am sending you light and prayers for a lifetime SVR.  You're such an inspiration. Hugs.

[MEG]

SunisOut, Congratulations on your first dosing. Woo-hoooo. Keep us posted.

[Islandgirl]

Thanks, MEG!  Wishing you smooth sailing too.  It seems almost impossible that I am almost at the end of my 12 wks, an "unreal" feeling - can't tell you how many times I've rechecked the date vs pills left in the bottle lol  Seemed like it would never get here, now it seems almost too fast.  In a good way   I'll be looking forward to your progress too and sending that light and prayers for a lifetime SVR to you (all of you) too!  ....Islandgirl

[MEG]

Thanks Islandgirl.! Here's to healed bodies, minds and spirits ------------and new beginnings!

[hope4cure]

With only 3 weeks left of treatment, I have come down with a pretty strong cold and chest congestion, which is pretty common this time of year. Last week I had an appointment with my doctor to go over my week 4 lab results which came back great, but I told her I was scarred to take anything for my cold. She says to start taking Advil right away. These medications do not interact with Harvoni. Combine this cold with my fatigue, it's been a rough last few days.

She also told me a lot of her patients are saying they don't want to take anything for the fear of somehow messing up the Harvoni medication. She assured me it was OK to take the much needed Advil and I have started to do so (though still at least 4 hours after or before taking the Harvoni, just my paranoia) though she did say it does not matter how close together I take each pill.

She also asked about any side effects and was surprised to hear of the fatigue I am experiencing. She says I am her only patient of about 75 people that have this. She has about 3 patients who reports head aches. That's only about 6% of people with side effects

It really does look like anyone who experiences side effects are the minority, which I think is a good thing for anyone who may be scarred to take Harvoni. I know everyone will react different to it, and people on this post do have some tough side effects, but don't let that deter you because I think many more people do not have any side effects at all and that seems like a good risk to take especially with up to a 97% cure rate.

Just my opinion at least from someone who is on Harvoni and does have a side effect from it.

[Kathy C]

I am now on day 6 with Harvoni
  I too am thankful to be approved for this medicine.
I am taking my Harvoni pill at 7 pm every night. Yesterday I noticed a couple of cold sores on my upper lip, I do not know if it is a side effect of the drug ( I used to get cold sores on my lips but haven't for several years up until now.) I also have had diarrhea a few times, don't know if this is a side effect of Harvoni or if I have picked up a bug.
I have probably have had Hep-C since 1971 when I had a blood transfusion when I had my son, but did not find out that I had Hep-C until 1996 when my liver  blood work work showed higher levels than normal.
This is my third attempt to rid my blood of the virus, the first time was in 1996 and 1998 I was in a double sided trial, it did end up that I got the hep c medicine that was later approved by the The FDA.
Also my second time with a Hep-C treatments was last fall, it was on Solvidi and ribavarin and peginterferon injejections. After 6 weeks I was so sick, constant vomiting and diarrhea and terrible nausa for 1 whole month, I lost 14 lbs and finally my Infectious Disease Dr had to take me off the treatment.
Now I am taking Harvoni .treatment for 12 weeks, I hope and pray that this treatment does work in me
. I am scared but excited at the same time.

I pray for all the people with Hep -C that they will be able to rid themselves of this terrible disease.  God Bless.    KathyC

[Rexray]

...I have a good feeling this will be your time to cure Kathy.
Harvoni at 97-99% cure rate is a pretty good indicator.
Keep us posted.
Sorry to hear you went through all that previous Hell.
I have a lady friend that went thru trials 2 years ago and it was the worst experience of her life.
Though she is a different genotype, my medical papers indicate that there should be similar meds coming out soon for the other genos.
Go reserach!

[Mugwump]

I'm starting to feel a bit nervous again. It's the last two days of treatment for me and all these things are flying through my head. I never found out what my viral load was at the beginning and my doctor said I don't have cirrhosis so I should do 12 weeks, but we haven't tested for that in years I don't know how she would know. I've never done a biopsy and the last time I had an ultrasound I can't even remember when it was. I'm seeing her tomorrow.  Should I ask her all of these questions and make sure it's conclusive why I've been doing the 12 week program?

Nervous and hopeful!
Nicole

Nicole, Katie, Here is a really big hug.

Sometimes it does seem as if someone is rolling dice and yes sometimes snake eyes happens. But  96% is still the best shot we have every had and you won't get them kind of odds in Vegas!

Even if I am in the small group who do come up snake eyes I will not mope and fret this time, there is too much to do in the time I have left on this planet regardless and I will do it. I want to leave here having left something, even if slight,  important for future generations. One cannot do more than this IMO.

Rant begins here;

For one I am doing a raindance for the west coast of North America and encourage others in this endeavor. If we have another dry summer season here things could get very bad for the remaining native salmon stocks on Vancouver Island, the lower mainland, Washington State, Oregon and California. So a summer rain dance is called for.

Oh and I will shoot my truck and remove the license plate and walk everywhere I go or only take the dreaded and maligned BC public transport system. A system that gets bad press especially from our overlord car sales oriented upper political management system of government.
Yes, Milo Minderbinder is still alive and well pulling the strings here in BC from his yacht outside Vancouver.

end of rant

We all need a good laugh and this is what I am working on. It is rather esoteric but that is my nature, trouble is Mozart already has Emanuel Schikaneder so I have had to do the libretto myself.

If anyone here has experience writing for the musical stage please shoot me a PM

Eric

 

[nicole_1234]

Island Girl I believe Tpropane may have confused my post with your name. Rest assured I saw my doctor today and found out my starting viral load was 620,000 and she is sure I don't have cirrhosis because my blood work was very good before treatment. I think it's just my last minute nerves about everything going well and feeling as scared to stop treatment as I was to start it. Sometimes confronting fears and expectations are the hardest things to do.

2 more pills and then my doctor has allowed me to do a 4 week blood work. She could not confirm that SVR 4 means a 98% chance of cure as some have written here, but will call Gilead to confirm. To me it's just one more hurdle to be sure I have beaten this thing, and I think if it will come back in 4 weeks I'd rather know then, than wait a whole 12 to find out.

[Lynn K]

Hi Nichole

Did you have a fibro sure test that is the only blood test that can attempt to determine cirrhosis other than that it is a fibro scan or a biopsy to determine cirrhosis as fat as I have heard.

My ALT and AST have been just very slightly above normal for years the only test I have that is low because of cirrhosis is my platelet count of 90 and when I first was diagnosed with cirrhosis even my platelet count was in normal range.

Not saying you could have cirrhosis just wondering how your doctor could say you do not based on only blood tests.

[Katie]

Nicole, you aren't alone in your fears, believe me.  Your VL is so low, I am sure you will be fine.  My first test almost 10 years ago was over 4 Million, and couple years later it jumped up to 16 Million and then came back down to 5-3 Million and at beginning of treatment was the lowest at 2.6 Million. 

So instead of slowly increasing as you would think, it bounced all over the place.  95% of the time my ALT/AST were in normal range, so I am sure my supplement regime with Omega 3s, Milk Thistle and lecithin granules really helped getting it under control.  I have felt like I was on a roller coaster ride but the last couple years I felt so terrible so am very grateful and optimistic that this is it.  I get those thoughts of doubt with anxiety as I don't want to go back to that, but I just remind myself of the statistics and the knowledge I have gained and know whatever the outcome the future looks so bright compared to just 2 years ago.  All is good.

I have a VL test at EOT and then wait for 12 weeks.  That's when my nerves will need support and I need to fill my time with gardening and nuturing and maybe even some fishing time.     Fishing doesn't count against your time on earth you know!  That's what my grandpa told me and he lived to see 100 yrs so I believe it.      

Our HAPPY DANCE is coming.  We just have to be patient and be good to ourselves.

Back to painting......

Katie

To Island Girl too.  Love you both and you are my Sisters in battle!  Awesome warriors!

[Katie]

Nicole, Katie, Here is a really big hug.

Sometimes it does seem as if someone is rolling dice and yes sometimes snake eyes happens. But  96% is still the best shot we have every had and you won't get them kind of odds in Vegas!

Even if I am in the small group who do come up snake eyes I will not mope and fret this time, there is too much to do in the time I have left on this planet regardless and I will do it. I want to leave here having left something, even if slight,  important for future generations. One cannot do more than this IMO.

Thanks for the hug and encouragement Eric.  Your positive attitude helps all of us and I send a hug back, but be careful because I have been painting again.  Almost done but I tend to get almost as much on me as the walls.

Katie

[nicole_1234]

Yes thank you katie and Eric for the encouragement, it really helps.  Eric I feel the same as you, I will live to the fullest potential no matter what. I feel better today. (although bad headache because I didn't sleep well). But emotionally better.

Lynn, they just got fibroscan at my hospital and haven't used it yet. I cannot be 100% sure you are right without the biopsy, but my doctor has never seen cirrhosis with someone like me with high platelets and overall good stats. Judging my overall health, AST/ALT, etc I'd say she's using her experience and common sense to determine this.

I know some will say I should be more diligent, and that I could be one of the few people who show absolutely no sign but based on my age and how long I've had it and stats I'm going to trust my doctor on this one.

My father died liver failure due to Hep C and alcoholism so I take this seriously. I just had a moment of panic, but I am confident I am doing the right thing by believing my doctor and going for the 12 weeks.

[dennyhil]

Hi Folks,

Just got back from my consultation to qualify for Harvoni.  This is my 2nd of many posts.

Its comforting somewhat going back in after devastating relapse and the doc knows, the nurses know me..  Anyway - long story short.  My doc is "highly confident" that he can qualify me for Harvoni.

I was F3 10 years ago.  He's saying I'm now F4 Cirrhosis(unspecified) and he gives me 90% chance of being cured with Harvoni Ribaviron combo.

Anyway.. I'm off and running - he says it will take a month or 2 to qualify..

[nicole_1234]

Good luck Dennyhill, I hope you will get it:)

I just did a Google search to see any new stats on Harvoni and its kind of depressing. If you look at news results it's all about stocks and how much money it's making (billions). Nothing about lives it's helping or real people who can't get access because of the cost.

[Keanu2015]

Hi Denny,

        It took me a little over a month to get approved. I'm F-4 also but treatment naive. I'm on day 4 of 12 weeks. My Harvoni was covered by my ins. - Humana Medicare Advantage and co pay was covered by PANF.

I agree Nicole, right now that's all you're seeing. The economics on this is easier to predict and evaluate based on decisions being made by the large corporations. You and I and everyone else on here are Harvoni's first giant group of medical statistics that will be big time news as 2015 gets into the later months. Hopefully they will be opening the champagne bottles when the cure rates are off the charts amazing!!

[dennyhil]

Thank you Keanu and Nicole..

Very interesting the investing side of this thing.. Believe it or not, it was an investing newsletter where I first heard of this.   My doctor today was very upbeat and positive about this drug.  I said "I'm here to talk to you about the miracle drug"  He just smiled and said "Indeed it is a miraculous drug". 

Think about a lifetime Gastroenterologist that has been trying to help people battle this disease for ...How many years?  I first met him 10 years ago and this is what he was doing.  He tried to help me then with the best method available..  Of course I relapsed.  How many relapses has this man seen?  How much pain and heartache?  How many deaths?  How much loss of hope?   Now he can administer cures.  He had a big smile on his face talking about this drug..

Then we had the talk about insurance companies and the battle for approval.  He's in the trenches fighting for us, he received a grant to help him prove that Harvoni will be long term cost effective..  It was encouraging knowing that guys like this are in the trenches going to war everyday to help people get the medication that they need to prolong lives, live healthy.  He did say it was a battle getting approval, but he was confident that I'll get approved.  Hope has returned..

[SunIsOut]

Thank you Keanu and Nicole..

Very interesting the investing side of this thing.. Believe it or not, it was an investing newsletter where I first heard of this.   My doctor today was very upbeat and positive about this drug.  I said "I'm here to talk to you about the miracle drug"  He just smiled and said "Indeed it is a miraculous drug". 

Think about a lifetime Gastroenterologist that has been trying to help people battle this disease for ...How many years?  I first met him 10 years ago and this is what he was doing.  He tried to help me then with the best method available..  Of course I relapsed.  How many relapses has this man seen?  How much pain and heartache?  How many deaths?  How much loss of hope?   Now he can administer cures.  He had a big smile on his face talking about this drug..

Then we had the talk about insurance companies and the battle for approval.  He's in the trenches fighting for us, he received a grant to help him prove that Harvoni will be long term cost effective..  It was encouraging knowing that guys like this are in the trenches going to war everyday to help people get the medication that they need to prolong lives, live healthy.  He did say it was a battle getting approval, but he was confident that I'll get approved.  Hope has returned..

Nice observation Denny!  Easy to overlook the care provider perspective and I do bet that they have a renewed swagger in facing a patient and saying "We can take care of this for you now".  It is good for everyone. 

In terms of the economics it is a market driven economy.  You have almost zero major bio firms working on new antibiotics as there is no supporting market for it. Kind of sad but this is where our government does or could play a role.  Sometimes the needs of the people are beyond a single company and Nuclear Power is one example where we are so far behind the French it is not even funny. It will take our government to subsidize these type of causes.

Thanks for posting. 

[Katie]

Hi Denny.  I have a wonderful doctor as well and he has been dealing with this virus since it was discovered and is also a great advocate for patients and SO excited about Harvoni and the results we are all expecting.  He didn't even wait for a denial from my insurance but wrote a letter and got me the 12 weeks without an argument.  When I was diagnosed, almost 10 years ago (and who knows how long I had it or where it came from), it was very grim and he gave me all the facts and didn't push me to try the treatment.  Just made me aware of it.  After our discussion I said no thanks, and I think he was actually relieved since the "cure rate" was so low for GT1.

Hope your approval comes through quickly and you are on the road to eliminating this alien virus and get your health and vigor back with all of us.

Welcome to our forum.  It is a blessing.

Katie

[Lynn K]

Hi Nichole

I was not suggesting you have cirrhosis just was concerned about the limited testing but as you have had hep c for much less time then me and your platelets are good it is less likely you have progressed that far.

Like I said my ALT and AST have been only slightly elevated for years. January 2014 before doing any recent treatment my ALT was 78 and my AST was 54 just above normal and yet I had cirrhosis for 6 years when that test was done while my platelet count at that time was 99.

Good that you have a doctor you feel confident in that is most important.

Anyway hope you are successful on treatment and everyone else too for that matter and we can all put hep c behind us!

[nadewitt]

Hi everyone. Three weeks ago I had been denied treatment twice, had appealed 12 times. Finally the insurance told my doctor that no matter what they sent in, there was no way I was getting this medicine. I work for a city that is self insured and just has the insurance company manage our benefits so I tried going through our insurance representative. They were told I could only get Sovaldi. Since I failed with incivek-interferon-ribaviron I really didn't want to go that route again. My HR department filed an exception and I was approved for the Harvoni. Two days later my insurance company announced that Harvoni was it's drug of choice and my copay dropped from $40 to $25. Two days after that Gilead sent me a letter saying they would foot the bill for my treatment because I have cirrhosis and have failed treatment twice and couldn't get treatment! Can't take advantage of that now since my insurance will cover it.
I envy all of you who have good, caring doctors. My first 2 experiences were with a doctor who let his nurse take care of me. Most of the time they got me mixed up with other patients. I had to get help with the side effects from my primary physician since when I called about the horrible nausea I was told to drink soda and eat crackers. They ordered labs but ignored the results. My hemoglobin kept dropping and they just ignored it. I was continuing to work and I got so bad my supervisor got me an appointment with a hematologist. My last appointment with the liver doctor I told him I was going that same day to see the other doctor. He stormed out of the office. I went to the other doctor and he hospitalized me and ordered transfusions. I had finished the Incivek but was supposed to continue the ribaviron and interferon for several more months. While in the hospital they wouldn't let me take the medication so when I got out I called the liver doctor to see what I should do. I was told I was no longer welcome in their clinic so my treatment ended. I had been UD but the virus came back with a vengeance. I watched the different companies with their trials of new drugs and decided to jump in again with the Harvoni. I had to find another doctor and there was only one other clinic in my city. The doctor is not caring or supportive. I have to leave messages when I have questions and most of the time I don't get an answer. That is why I was so glad to find this web site. Well, sorry for venting. I am now on day 10 with treatment and besides the constant headache and acid reflux (I've had to start sleeping sitting up) I am doing fine. Thank you to all of you for posting about your experiences.

[mario555]

Sorry to hear about all your problems and happy to hear you are on your way to a cure!
I can definitely relate to your story with your he pathologist, I had a similar support.... I became real good buddy with his secretary/nurse. Just keep taking the pills, the side effects will rapidly recede. Drink water, it's your best ally!

[Draga]

Day 5 of Harvoni and the fatigue can be intense at times but after a year of fatigue I'm kinda used to it. No other side effects to speak of but only 5 days into a 12 week program. Wish all of you the best,,,

[nicole_1234]

Nadewitt, what a battle you've been through! Happy you were able to get Harvoni finally and wishing you the best for recovery and the road to being finally cured!

[Keanu2015]

Hi Nadewit,

      My goodness you've been through a lot! Well thank goodness you got the Harvoni and made it here onto this forum! We are happy to hear from you. My doctor just wants to see me when it's all over too that's why I'm here. I'm on Day 5 of 12 weeks. I've learned a lot here already and looking into all of my options for proper medical care. If I need to go to a bigger city for a Dr. who will take me through this thing following the correct protocol then so be it. My doc seemed more interested in pushing me to a colonoscopy than reviewing my blood work at proper intervals! I told him I know I'm 50 but that can wait! Btw Day 5 is much better than day 4 was Hope everyone is doing well today!

[Rexray]

If there is not already a thread on the ins and outs of getting through the Harvoni appeals, maybe there should be one

Here's basically whats happened in my case.
I was with United Health Care until October 2014, right on the cusp of Harvoni coming out on the market. UHC is on-board with Harvoni.

I had an appointment with my UCLA Hep Specialist in November to get the prescription.
Then my company's contract was taken over by another company, so my health care changed to Premera Blue Shield.

The UCLA doctor prescribed it and of course, Premera denied it, basically because the Express Scripts deal came along for AbbVie in the interim.
( http://www.reuters.com/article/2014/12/22/us-express-scripts-abbvie-hepatitisc-idUSKBN0K007620141222 )

After the first denial, my doctor sent his case studies along with my personal HepC status and within a few weeks I was approved by Premera.
I got the complete appeal and approval in the mail.
I have to say it is very comprehensive on both sides.

So, from what I know, your doctor needs some very specific reasons, as well as the HepC/Harvoni vs AbbVie medical research to back the appeal.

Also, my doctor uses Quality Specialty Pharmacy (http://www.qualityspecialtypharmacy.com) who have been very conscientious in communicating with me through this process.

My advise, for what it's worth, is to find a doctor that is well involved/informed with HepC studies and knows the options before you get the prescription submitted to your healthcare provider.

In my case, I just lucked out having seen this particular doctor some years back who has kept me updated on the options. As I said earlie, he happens to be one of the top Harvoni trials doctors. I am welcome to share the details if you PM me.

It's all a money game. Good news is that Gilead is coming around to challenge the market to give us some hope.

(http://www.fiercepharmamarketing.com/story/how-big-are-gileads-hep-c-drug-discounts-enough-spook-investors/2015-02-04)

Big bonus, in the end my co-pay is zero thanks to how my pharmacy handled it.
Man this is going to be a good year!!! 

[Mm]

I'm pleased to report that my severe headaches, which began during my second month of treatment with Harvoni,  have almost gone away. From week 5 -7 they went from mild headaches to strong nonstop, non responding daily headaches. My physician prescribed a small course of pain medication to break the cycle. It took a few days, but it worked. I'm just abou to start my last 4 weeks, of a 12 week course of Harvoni and the headaches, if any at all, are mild and tolerable without medication.

Type 1a
Detected 1990
moderate fibrosis
Non responder to Interferon 1992
Viral load 5,900,00  / undetected 8 weeks
Mm

Keep Fighting The Good Fight.  We will win this battle with the beast!

[SunIsOut]

Wow these doctor stories are something else! I am at John Hopkins Hospital and they have an online system where I can email doctors and nurses. They are super responsive and send me my appointments in the mail and I can read my labs from them as well. I wrote last night about the Vit D and they said I could take the recommend dosage,  they would add it to the labs and that I am very healthy.

I wish all the doctors were like this and these folks are really good.

I took my first dose this morning.  No headache but man did I start getting stomach nausea. I took it at 8:00am with yogurt and strawberries and slept till noon.

Our bodies are all so different.

[Karen1124]

I keep reading about everyone eating fruit and yogurt and sugary stuff my doctor said only 20 grams of sugar per day is allowed is that because I have cirrhosis he said sugar is metabolized exactly like alcohol anyone got any feedback on that?

[SunIsOut]

I keep reading about everyone eating fruit and yogurt and sugary stuff my doctor said only 20 grams of sugar per day is allowed is that because I have cirrhosis he said sugar is metabolized exactly like alcohol anyone got any feedback on that?

I was not advised to change my diet at all but to just keep eating healthy. I limit processed foods and no fast foods.  I prepare 90% of my meals from home except when I travel.

[Katie]

That's a scary thought as I have had a real sweet tooth on treatment and admit that I have indulged a bit.  Remember the Chocolate cheesecake I said I was going to make?  I did and it was delicious.  I shared it with the carpenters when they were working, but I ate my share.  Gosh it was good!

Katie

Actually it was chocolate raspberry!  My own raspberry jam!

[SunIsOut]

I keep reading about everyone eating fruit and yogurt and sugary stuff my doctor said only 20 grams of sugar per day is allowed is that because I have cirrhosis he said sugar is metabolized exactly like alcohol anyone got any feedback on that?

You sure do learn a lot on this forum.  Seems 100 years ago we average 15 grams of sugar a day and now 155 grams due to sodas( I do not have them) and other processed foods.  I did read up on this and Karen you are right about sugar contribution to fatty liver and non alcoholic cirrhosis.  Big eye opener for me.  I did see that there is a natural sweetener called Stevia from a plant that has 0 calorie, 0 sugar (glucose) and has been submitted to the FDA as a substitute for fructose type sweeteners that are the toxic ones.  Carghill and Merisant are two companies with FDA approvals pending.

Here is more on Stevia

http://articles.mercola.com/sites/articles/archive/2008/12/16/stevia-the-holy-grail-of-sweeteners.aspx

Thanks for posting Karen.  Definitely got my attention.

[Katie]

Thanks Sun the sailor!  I guess I had better pay more attention and will read your article.  I don't eat a lot of sugar but do quite a bit of fruit and absolutely no soda or processed food, but I do make some low sugar oatmeal cookies with lots of different dried fruit, coconut(organic not sweetened) and nuts, so the dried fruit adds sugar too.  I figured it was a healthy alternative for desserts or ice cream.  May have to rethink that.

Thanks!

Katie

[Karen1124]

Hi Katie and Sun is out,
I was drinking smoothies and all organic and eating all organic food  vegetables and meat. the doctor that did my biopsy send me to the hep C doctor. He first asked how I ate I told him then he told me about this was in July 2014 he said that it would be coming out in October or November and then he's going to a convention December!he said that this treatment should be perfect for me and that I needed to get prepared and change my lifestyle the first thing he said was that fruit has sugar and that to limit my sugar 20 grams a or less per day.and that I needed to walk or exercise everyday and 2 or 3 days a week resistance exercise.he said if I do what he tells me that my numbers in December would be almost normal.and they were they went down from ast being 235 ASL being 168 to ast 42 and ASL 64 and better than that I felt better since the month after I knock the sugar out and started exercising then I have felt in years!

[MEG]

Hi all..

@nadewitt, my goodness. You are one strong person. I'm so sorry you went thru such horrors with your doctors. But I'm also happy that you're on the Harvoni and on your way to saying good bye to HCV and the healing that will ensue.

@Sun---indeed, I also feel lucky. My hepatologist and his staff are wonderful. They answer emails within the hour or by the end of the day, at the latest.

Mm...omg, you had to endure all those headaches. It's amazing how we all react differently. Here's to a smoother ride to the finish for you!

[Katie]

Karen, that is good to know.  My ALT/AST numbers have almost always been normal for 9 years since diagnosed and were perfect before that.  Every once in awhile they would go just above normal range, like in the 50's-60's and it was usually when I was fighting a cold or flu.  Mine were normal when I started treatment.  And you are right about fruit...sugar is sugar, it's just with whole fruit there are many benefits so I certainly am not going to cut them out.  I have a grapefruit usually for breakfast and sometimes an apple, orange or banana and often my wild frozen berries for an afternoon break.  In the summer I really like getting hydrated with the melons and peaches.  I think the key is, moderation in all we eat and do.

2 pills left...tonight's and tomorrow and then it's blood work time.  WOW that went by fast and to say the least, I am nervous.  Since on treatment I have remodeled my 2 back rooms doing all the painting, and trim myself.  Just a bit more to do an I can start organizing.  I go at it slow, but it is progress and I will be SO happy to straighten up my house.  It's like a war zone and a bit overwhelming.  If it hadn't been for that, I would have probably put it off until later, but at least it kept me moving!

Hope all is going well with you and thank for the information! 

Katie

[MEG]

@Karen, Katie, Sun,

Re: sugar. Ya, back in the day, 20 years ago when my initial symptoms were sinusitis(Katie and I talked about this a little bit over the w/e), I went to see a nurse practitioner who told me to cut out all sugars because of its inflammation effects and that it may feed whatever organism is causing the fevers/fatigue/sinusitis.  I'd also read about Candida and I began cutting back even further.

Over the years the data about insulin resistance and sugar started coming out---giving me another reason to stay low sugar.

Indeed, they are finding that raw sugar and high glycemic fruits like bananas, grapes, contributes to the inflammation in the liver(that's already there fighting the hepC) and even can contribute to athersclerosis. Ouch...

Except for special occasions, I don't have raw sugar and just one piece of fruit per day. But, but....I just cannot, will not give up the sugar in my one mug of decaf coffee!!

I've resorted to Xylitol. It has a better glycemic index and tastes just like sugar. 

I tried Stevia. I can't find a formula that doesn't have a bitter after-taste. Some people don't find it bitter....

Agave syrup? A no-no.....the natural health marketers really hood-winked us on that one. Like high fructose corn syrup, it is metabolized primarily in the liver and is actually worse than raw sugar for those of us with liver issues...

Katie, your cookies sound wonderful. Yummm.