Author Topic: Harvoni and Me (Read 18348 times)

LightBeingAtLast · « **on:** September 03, 2016, 03:35:36 pm »

Good day to all of you lovely folks. I'm LightBeingAtLast and I began my Harvoni treatment today, Sept 3, 2016 at 7:15 a.m. After some meditation and imagery work I downed my first pill. Our bodies are sacred and for me, some focus on what I am about to undertake seemed very fitting.

I thought I would just use this as a blogspace to write about my experiences daily in hopes of hearing from some of you as to whether or not my experience is a common one and to keep me sane during treatment. First a little about me...
64 wonderful years journey on this beautiful blue planet we call home. Earth.Love it!
I am a healer, wife, mother, grandmother, sister, aunt, cousin, friend. I live in the mountains of northeastern Oregon with my family and awake every morning amazed by the beauty that surrounds me. I love this life journey I am on. I want to continue as long as I can.

Which brings me to HepC. Got infected when I was 18 years old, not sure how. I donated a lot of blood back then...who knows, doesn't matter. I've gone through periods of fatigue over the years that would eventually play themselves out and I'd feel better. Generalized aches and pains, insomnia, brain fog but nothing I couldn't live with. After getting confirmation that I had HepC about 15 years ago, when they finally could differentiate the types, I began seeing a Hepatologist at OHSU, cutting edge care in the Portland area. Two liver biopsies, at about 5 years apart confirmed I was staying at F2, even though my viral load was usually over 20 million. Since I was maintaining on my own, my specialist recommended I wait for some groundbreaking treatments that were between 5-7 years away. So I did. Saw him each year, viral load 12-23 million, keep on doing what I'm doing as it didn't seem to be progressing.

Five and a half years ago I was diagnosed with invasive breast cancer. As breast cancers go it was pretty good. Mastectomy & reconstruction, anti estrogen therapy that caused all kinds of pain, getting so bad I finally decided quality of life was more important than the small change in survival that the drug made. I'm doing great, recent scan...no Cancer. And then for some reason, this year when I did my yearly Fibrosure test the staging of my liver disease changed. Opted to do therapy with Harvoni but my insurance said F3 not sick enough. 3 times they rejected me. A few months later my doc ordered a liver scan and it showed F4....finally my liver is in bad enough shape that they approved Harvoni.
Harvoni and me...began this morning at 7:15 after a banana and an Aussie Biteand two cups of coffee with cream. Since then I've been drinking water non stop. Went to estate sales with a couple of friends and at about 3 hours after taking my first dose began feeling a bit out of sorts. I was aware of feeling my brain...weird, right? Felt like it was tingly or expanding, lightheaded....unusual. And my bowels felt a little anxious if you get my meaning. So I said goodbye to my friends and came home to have an apple and some popcorn and get this posted.

Would love to hear from any of you. I'm a bit concerned about the post treatment stuff I'm seeing on here with all the aches/pain that the medical community is saying is not related.
I have enough arthritis already and the thought of more pain is a bit halting. If you have any tricks or advise I would love to hear from you. I'm an active person, biking, hiking, kayaking lakes, dancing, gym and I'm going to keep doing it as long as this lovely body will stay with me! Blessings to all of you on this stage of your journey. Remember to get/give at least 5 hugs a day. Love is.

Philadelphia · « **Reply #1 on:** September 03, 2016, 10:43:20 pm »

I treated with viekira pak and riba for 24 weeks last year. Got the all clear just before Christmas.

I am 57, working full time as a school principal and enjoying the down time weekends bring me. Was treatment challenging? Sometimes. Am I tired? Sometimes. Do I ache? Sometimes. Do I feel worse now than when I was at my sickest? No way. Would I do it again? Hell yeah.

YMMV, but having HCV is a horrible thing to have hanging over your head and with a liver at F4, your options are limited. Take each day as it comes, try to live outside your head, stay active and find reasons to be joyful. That got me through it.

Lynn K · « **Reply #2 on:** September 04, 2016, 02:12:19 am »

Hi and welcome

Some also experienced what we call a Harvoni high where we felt a bit more energy so I am guessing that for you is that brain expanding sensation you will get use to it in a couple of days I kind of had a feeling of being energized for the first few days.

I maybe had some joints that had been already a little achy bug me a bit more on treatment but nothing intolerable maybe Harvoni maybe not. While some here have had some issues which may or may not be related to their treatment but certainly that had not been what most have experienced.

As you are active I have read that is the best medicine for joints and our bodies in general is just keep moving to that is my suggestion.

Also want to say hi as we are neighbors. I live south of Seattle so just up I-5.

Best of luck on your journey
Lynn

Luna7 · « **Reply #3 on:** September 04, 2016, 11:05:22 am »

Hi Light,

While I do hear of numerous people experiencing greater joint pain during/after treatment with DAA's I try to remind myself that nearly all health conditions are on a continuum regarding severity and most likely my joint pain symptoms won't progress or be on the severe end. I'm not even sure the DAA's caused this for me, but I'm suspicious due to so many people mentioning this particular symptom.

I'm getting ready to go on a strict low-carb and calorie restricted eating plan as I do feel better when adhering to it, and through even more studies of late am convinced it can help many health conditions due to the change in metabolism.

Basically the diet turns our current food pyramid around and advocates a high fat/low-carb diet. There's a wealth of information out there on how to follow the diet via googling Ketogenic diet, Paleo diet, & Low-carb diet.
There are a lot of ongoing clinical trials regarding the keto diet and brain cancer especially.

If you're interested try researching Paul Davies, a Physicist associated with Arizona State University. There's a major project headed by him at the Center For The Convergence Of Physical Science And Cancer Biology funded by the National Cancer Institute that has a lot of background theory on the issue. He posted some of his talks on Youtube as well.
Also, Physicians For Ancestral Health posted many Youtube videos from a retreat/symposium.
Additionally, physicians involved in what is called Functional Medicine are also places to research, and I love their holistic approach to health conditions.

I will post my progress on this diet here on your thread if you don't mind, and hopefully it will help other joint pain sufferers. Maybe others have advice on what helps their joint pain? I'm taking chondroitin and glucosamine now and going for the old-fashioned apple cider vinegar remedy too.

LightBeingAtLast · « **Reply #4 on:** September 04, 2016, 03:35:21 pm »

Day 2. Queasy feeling about 3 hours after taking Harvoni this morning. Feeling bloated. Is this common?

dragonslayer · « **Reply #5 on:** September 04, 2016, 03:44:25 pm »

Quote from: LightBeingAtLast on September 04, 2016, 03:35:21 pm

Day 2. Queasy feeling about 3 hours after taking Harvoni this morning. Feeling bloated. Is this common?

I dont think so. I was feeling queezy and bloated just the other day after breakfast, and I finished treatment over a year ago.

FutureThinker · « **Reply #6 on:** September 04, 2016, 05:25:21 pm »

Hi Light, welcome to the forum and congrats on starting on your path to SVR! I completed my 12 wk course in May and was deemed to have reached my SVR12 just last month.

I found I felt best if my stomach was full -- which did lead to the gaining of ~ 5 # over the 12 week course. Nausea is a side effect listed in the Harvoni literature, which I would say mine was only occasional & mild, at most. You'll likely find that these issues will work themselves out over the next week or so.

Drinking lots of water really made a world of difference for me, which I am sure you've read throughout this forum, as the drug does seem to have a dehydrating effect.

But over all, my ride on the "Harvoni Train" was very uneventful and flew by. I hope your experience goes as smoothly. Keep us posted and keep the faith, FT

brie41 · « **Reply #7 on:** September 06, 2016, 08:07:43 pm »

Hi Lightbeingatlast,

Love the name! I felt medicated the first week or so. But it was off and on. Water is key and I always took my pill right after dinner to avoid any stomach issues. Ginger ale worked for me as a few times I felt sick and it got me through. I have osteoarthritis. Not severe yet, but I have not found that the Harvoni made it any worse. I had a few bouts of severe pain in my neck and thigh while treating but nothing that stayed with me. Some people are feeling worse since treating and so far no one really knows why that is. I will be thinking good thoughts for you! Brie

LightBeingAtLast · « **Reply #8 on:** September 10, 2016, 06:39:07 pm »

Well, week 1 is done, 11 to go! Surprising how well Harvoni and me are getting along. Minimal side effects, I think water really, really helps and I am adhering to the 1/2 your body weight in ounces of water recommendation. First blood work at the end of second week....can't wait to see what has changed. So excited to be treating this at last!

I chose to take my meds after breakfast in the morning to avoid sleeping without water intake through the night, just in case that affects the headache probability.

Thanks for all your support!

FutureThinker · « **Reply #9 on:** September 10, 2016, 08:29:23 pm »

Hey Light, so glad to hear week 1 improved and things are going well. Just hang in there, it will fly by before you know it! Sending good, healing thoughts your way, FT

LightBeingAtLast · « **Reply #10 on:** September 12, 2016, 11:37:28 am »

Day 8 was a tough one. Woke up with screaming headache in the top of my brain, nausea, then throwing up. Tried my migraine med but only made the slightest difference. Tried Tylenol but did nothing. Took my morning med several hours late hoping not to throw it back up. It stayed down munching crackers and shops if ginger ale. Finally 3 hours after taking my needs i took 600 mg of ibuprofen and it knocked the headache back to a shadow. In bed till 3pm. Tough day. Can't be sure it was Harvoni since the farmers were field burning Sunday all day and it looked like a war zone here. The smoke completely filled our valley. Wretched. I'm hoping it was three smoke!

This morning I woke with a slight top of the brain headache, took some Tylenol and hopeful I won't have too spend today in bed. The ride continues and still thankful for the possibility of a cure! Enjoy this day.

Anyone else having insomnia? Any suggestions? I have always been a poor sleeper but this past week is a standout in sleeplessness. Thanks!

brie41 · « **Reply #11 on:** September 12, 2016, 03:01:10 pm »

Hi LightBeingAtLast,

All I know is that when I was on Harvoni I had no choice but drink right up to bedtime and made sure I had a bottle by my bed ready to guzzle whenever I woke up. Although I took my med at dinnertime but I was always thirsty. Yes, many trips to the bathroom but I am convinced I would have had headaches if I didn't have enough water. I know I felt sick one night and watched the clock while sipping ginger ale and deep breathing to not vomit. It said if you vomit within 5 hours of taking harvoni you should take another one. I am sure you know this but it was always a bit of a relief for me when it was 11pm and I knew I made it! Sure sounds like it might have been the smoke, I would not have been able to deal with that either. I do hope you don't have any more days like that and the rest of the time goes smoothly for you. I can't offer any advice on sleeping as I have always struggled with it and refuse to take anything for it. Now that I know I am svr I kick around the idea of trying something, anyone have any good suggestions of what to use? Brie

LightBeingAtLast · « **Reply #12 on:** September 12, 2016, 10:25:38 pm »

I have not heard about 5 hour window after taking Harvoni. Thanks for that info. I just delayed taking med but now know I really need to take it o at the same time everyday.

Lynn K · « **Reply #13 on:** September 12, 2016, 10:43:34 pm »

I had not seen anything about 5 hours after vomiting. do you have a link on the brie41? I would ask my doctor or pharmacist or the harvoni nurse help line for information about that

http://www.mysupportpath.com/help-along-the-way

Help Along the Way

Support Path is ready to assist patients along the way toward treatment completion

A 24/7 help line with nurses on call to provide answers and assistance.

Providers and patients can call 1-855-7-MYPATH (1-855-769-7284) for assistance.

LightBeingAtLast · « **Reply #14 on:** September 12, 2016, 11:50:38 pm »

Thanks Lynn k. I'll check with doc and pharmacist. Hopeful I won't need to worry about it again.

LightBeingAtLast · « **Reply #15 on:** September 14, 2016, 11:09:46 pm »

Good evening everyone,
Day 12 of Harvoni treatment. I am having a heck of a time sleeping. Does anyone else have any experience with this? I finally get to sleep only to wake 4-4 1/2 hours later and can't get back to sleep.

I'm feeling noticeably more fatigued today but could just be lack of sleep; although it feels deeper than that. Just wondering what yall think and if you know of any remedy that works.
Sleepy....

Lynn K · « **Reply #16 on:** September 15, 2016, 12:55:16 am »

What time of day are you taking your meds? Some here had extra energy on treatment maybe if you could take your meds earlier in the day?

LightBeingAtLast · « **Reply #17 on:** September 15, 2016, 10:57:30 am »

8:30 in the morning.

dragonslayer · « **Reply #18 on:** September 15, 2016, 02:34:04 pm »

Quote from: LightBeingAtLast on September 14, 2016, 11:09:46 pm

Good evening everyone,
Day 12 of Harvoni treatment. I am having a heck of a time sleeping. Does anyone else have any experience with this? I finally get to sleep only to wake 4-4 1/2 hours later and can't get back to sleep.

I'm feeling noticeably more fatigued today but could just be lack of sleep; although it feels deeper than that. Just wondering what yall think and if you know of any remedy that works.
Sleepy....

Hi Light... I have a similar type of insomnia issue. I had it before treatment, during treatment, and post treatment... The one thing that usually works for me is diphenhydramine which is generic benadryl. I usually get a longer, deeper sleep when I take it. Much less tendency to awaken after 3 or 4 hrs of sleeping and then not being able to return to sleep. For me it generally lets me sleep longer than ambien, or anything else Ive tried, and if I do awaken early, it generally lets me get back to sleep more effectively. This kind of insomnia can be very life impactful leaving you devoid of energy much of the time.. It also affects your thought processes and if it goes on night after night, can make you feel a little nuts and depressed... But then you somehow get a decent night's sleep and you feel all better again.. At least that's how it is with me. I took my Harvoni in the morning with breakfast and I took Diphenhydramine many nights during treatment.. I didnt find any drug interactions with Harvoni in my research. So, best of luck to getting better sleep, and feeling better!

LightBeingAtLast · « **Reply #19 on:** September 18, 2016, 12:25:35 pm »

First bloodwork done on Friday at the two week mark. It is all so normal! Hooray. It has been 30+ years since I have had a blood test that showed normal alt and ast numbers. I am humbled and grateful. VL test not ordered til end of 12 week treatment. Would I be out of line to request one at the end of 4 weeks?

Drinking lots of water as that seems to keep the slight headache I'm prone to away.
Thanks for all of your support!

andrew j · « **Reply #20 on:** September 18, 2016, 07:06:38 pm »

I don't think you'd be out of line, Light.

I got one then because of a bit of a misunderstanding, but I have to say I was glad to have had the opportunity.
The tests are expensive, apparently - but I think you need to know what's going on somewhere along the line.
The 4 week test is particularly worthwhile in this respect.
It helps you gauge where you are (of course).

The more you know, the more secure you'll feel.

Lynn K · « **Reply #21 on:** September 18, 2016, 09:45:44 pm »

If you were talking about on treatment viral load testing while it is gratifying to see a not detected while on treatment is essentially meaningless really the only test that matters is the 12 week post treatment viral load test.

There have been a few here who were weakly detected while still on treatment and even at end of treatment but later went on to become not detected.

I think a better choice really is to just wait till at least four weeks post treatment to get a test but of course it's up to you and your doctor

FutureThinker · « **Reply #22 on:** September 18, 2016, 10:03:34 pm »

Hey Light -- I totally understand why you'd like to see, in writing, what your VL is at this point. But w/ your AST/ALT now normal for the first time in years, this tells you the drug is working (!!!!). Your practitioner has chosen to do it at 2 weeks vs. 4, and the results are showing all is going as it should. It's a personal decision, but take some comfort in the great liver enzyme numbers -- and congrats!

I was still detected (30) at my 4 wk test, which was disconcerting, even though I knew the real test for a cure is at 12 weeks EOT. I was then undetected at 8 weeks, and have been every test since, so............ I really think there will be some new guidelines presented at the AASLD meeting in November on recommended frequency of labs.

It's a personal decision; hope this helps! FT

LightBeingAtLast · « **Reply #23 on:** September 19, 2016, 10:21:38 am »

Thanks so much. It does help hearing from y'all who have gone before me.
Will ask my doc about a 4 or 6 week test. 6 would be halfway. Seems reasonable to me. I know they are expensive tests but seems like useful info when using such an expensive resource as it's Harvoni. One would think Gilead would want to know enough to pay for it! Ha!

Lynn K · « **Reply #24 on:** September 19, 2016, 10:42:56 am »

Really most people will test not detected on treatment that is why they are moving away from on treatment testing that and all it does if you test weakly detected it could make you worry unnecessarily and if not detected that was the expected result.

The only thing on treatment testing will confirm is patient compliance.

As to the cost of the test I have heard it costs around $400 and takes a week or so to get results back.

But if you want to take the viral load test while on treatment of course that is between you and your doctor.

FutureThinker · « **Reply #25 on:** September 19, 2016, 12:06:08 pm »

I really do believe there will be new guidelines recommended at The Liver Meeting in 2 months on lab frequency, so let's see what comes out of that conference.

Just keep in mind the current guidelines for "cure" are if one stays virus free for 3 months after treatment. So, the recommended frequency may well decrease to exactly what your doctor is doing: 2 or 4 wks into treatment, then 12 weeks, then 3 months post-treatment. But see what he/she says! You certainly have the right to ask.

I am really looking forward to new data from this meeting this year, as so many of us have graduated and there is so much more information about HCV treatment now. FT

LightBeingAtLast · « **Reply #26 on:** September 25, 2016, 11:09:05 am »

Oops. I'm on week 3 not 4. Hmmm....

LightBeingAtLast · « **Reply #27 on:** September 25, 2016, 11:10:56 am »

Future Thinker, what meeting are you referring to?

FutureThinker · « **Reply #28 on:** September 26, 2016, 01:47:21 pm »

The AASLD meeting, referred to as "The Liver Meeting" held here in the US every fall. Check out their website hcvguidelines.org for accurate and up-to-date info on HCV treatment. FT

LightBeingAtLast · « **Reply #29 on:** September 27, 2016, 09:50:01 am »

Thanks! I'll keep an eye on that and their website.

brie41 · « **Reply #30 on:** September 27, 2016, 05:45:58 pm »

Hi Lynn,

I just read your post. I found the information about vomiting after taking Harvoni in the Harvoni pamphlet. I think I googled it as well. I am just the paranoid type so that is why I looked it up! Brie

morab · « **Reply #31 on:** September 27, 2016, 06:42:08 pm »

Quote from: dragonslayer on September 04, 2016, 03:44:25 pm

I dont think so. I was feeling queezy and bloated just the other day after breakfast, and I finished treatment over a year ago.

Lightbeing
I was bloated during the full 12 weeks of treatment. It did not go away until 4 weeks after treatment. I found eating smaller amounts of food at a time, eating several times a day in smaller quantities helped with the bloating.
morab

Lynn K · « **Reply #32 on:** September 27, 2016, 11:33:34 pm »

Ok yeah I do see on page 5 table 2 from the Harvoni Prescribing information sheet it does list nausea as a side effect however this was only experienced by 6% who took Harvoni for 8 weeks, 7% in the 12 week clinical trial group, and 9% in the 24 week clinical trial group

So 90% or better did not report experiencing nausea

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

Expect good things

amy1662 · « **Reply #33 on:** September 30, 2016, 10:01:15 pm »

I was treated with Harvoni for 12 weeks when the drug first came out and have been Hep C free since. The most I ever had during treatment was just a slight headache and felt slightly tired in the beginning of treatment but that was it. I did feel a little more energetic as my treatment progressed which I felt was related to my improving condition. It has been a couple years since I finished treatment and I must say life is good. No more Hep C no lingering medication side affects. Hang in there to all who are being treated there is a light at the end of the tunnel. I wish you all a healthy future.

Lynn K · « **Reply #34 on:** September 30, 2016, 11:18:47 pm »

Just had my every 6 months blood work.

My Platelet count is still low at 102 but my AFP (tumor marker) is in normal range for the first time in at least 10 years that I have records for!

June 06 19.1 H
Feb 08 32.4 H (right after I was diagnosed with cirrhosis)
Now 8.8 NORMAL
Range per my lab is 0.0 to 15 ng/mL

Yay!!!!!

dragonslayer · « **Reply #35 on:** October 01, 2016, 09:47:07 am »

YIPPPPEEEEEEEEEEEEEEE!!!!!!!!!!!

andrew j · « **Reply #36 on:** October 01, 2016, 07:28:45 pm »

Yes, Lynn.
Congratulations!!!

... Must be a relief, eh?

Lots of love,
Andrew.

FutureThinker · « **Reply #37 on:** October 04, 2016, 12:26:57 pm »

Lynn, HAPPY DANCIN' TIME FOR YOU!!!! What excellent news!!! Many congrats, FT

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