Need people to talk too. Been doing this alone. Hep C /Harvoni

[lawrosa]

Hi.

I am on my 6th week of Harvoni. Still not feeling well. Not sure hep C is even my issue, and fear I have some other terminal illness.

Was IV user 25 years ago probably how I got hep C and never knew it until I was tested december 2016. Im 51 yrs now.

I drank all my years. Beer mostly.

What started me were symptoms around Christmas time of severe tiredness. Confusion or foggy head. Queasy feeling that would never go away. Bloated stomach and not really being hungry.

Loose bowels broken up light color. and ringing in the ears that has not gone away.

After I was tested Hep 1A my GI doc did colonoscopy and endoscopy and ultrasound

2 pulyps small on colon  and upper GI was negative and just consistent with acid relux, barrets esophagus.

Ultr came back all normal organ sizes and no acites ( Odd because I was so bloated)

My alt was 48 high / ast 37
fibrosis score .34 f1 f2
.20 A0 a1

hep c quan 2458720

If anyone needs any other #'s let me know as I am new to this and am not sure what everything means.

I have no support and the doctor has been less then helpful and seems like just getting me through treatment..

So im on week 6 of 8 week harvoni and take 20 mg of acid reducer with pill in morning..

Since I am worrying myself to death I may have something else going on with me and not sure what I am experiencing is hep c related or treatment induced.


My worry

still have ringing in ears
Occasionally have bloody nose in morning left side only. Not often but enough to worry me.
Cant sleep at night. Take 10 mg melatonin to help me fall asleep but often not till 5 am. I sleep to 12 or so.
Pimples... Ahh face, back of head, neck,, weird. They dont really get to a head and get hard and lumpy.


Well ill start there, and hopefully I found a place that can help me. A place to talk to people like me..

Thank you for your time..

[lporterrn]

Welcome. I practically felt the weight of your worry. I've been there. I think we all start there. Plus, I'd get ion the internet and was pretty certain I'd be dead in no time.

So, let's start with what I know for me and reading your post.
1) Worry makes everything worse. Learning how to let go of worry is a health habit that if you can develop will serve you well. Much easier said than done. For me, it took years of practice. My motto is, "Get the facts first; then worry." Most of the time the facts don't add up to give me much to worry about.

2) Nothing in your health history sounds any major alarms, at least not yet. Has your doc said anything about cirrhosis? Did your doc do a fibrosis test? Also, I am curious about your platelet count (it's found in the complete blood count or hematology test).

3) Fatigue makes everything worse. Much worse. Given what you said about sleep problems, no wonder you feel bad. I am not saying that is the cause, but it's very hard to feel good with little sleep. Personally, good sleep is the most important thing I do for my health. And I've struggled with sleep issues all my life. I work hard to sleep well.

4) You mentioned the beer - is that past or current history?

5) I suggest getting the bloody nose checked out. Probably nothing, but like I said, get the facts first so you can see if it is worth any concern. You may just need a nasal moisturizer. A doc can tell you. While you are there, mention the pimples an tinnitus. Get everything checked out so you can be reassured. The tinnitus (ringing in the ears) is probably permanent. It just comes with aging - especially if you were exposed to loud sounds in your youth.

6) I assume that you know that because of the polyps and Barrett's you need to have regular scoping. Pain in the neck and ass - literally in this case. (sorry, but humor is my thing). You have a slight risk for cancer but these days if caught early, truly is treatable.

Hope this helps.

[lawrosa]

Welcome. I practically felt the wait of your worry. I've been there. I think we all start there. Plus, I'd get ion the internet and was pretty certain I'd be dead in no time.

So, let's start with what I know for me and reading your post.
1) Worry makes everything worse. Learning how to let go of worry is a health habit that if you can develop will serve you well. Much easier said than done. For me, it took years of practice. My motto is, "Get the facts first; then worry." Most of the time the facts don't add up to give me much to worry about.

2) Nothing in your health history sounds any major alarms, at least not yet. Has your doc said anything about cirrhosis? Did your doc do a fibrosis test? I was tested fibrosis  score .34 f1 f2 and
.20 A0 a1
Also, I am curious about your platelet count (it's found in the complete blood count or hematology test).I dont know where to find this...looking at my first blood test screening lists many items in cbc/diff.

Platlets show 182 ( 140-415 reference) is that it?

3) Fatigue makes everything worse. Much worse. Given what you said about sleep problems, no wonder you feel bad. I am not saying that is the cause, but it's very hard to feel good with little sleep. Personally, good sleep is the most important thing I do for my health. And I've struggled with sleep issues all my life. I work hard to sleep well.

4) You mentioned the beer - is that past or current history? I drank all my life. 12 pack a day more or less. I no longer drink at all .  0 , zilch since new years 2016. So been 5 months. I did quit here and there,
 or just drank on weekends sometimes, but always drank until totally wrecked.

5) I suggest getting the bloody nose checked out. Probably nothing, but like I said, get the facts first so you can see if it is worth any concern. You may just need a nasal moisturizer. A doc can tell you. While you are there, mention the pimples an tinnitus. Get everything checked out so you can be reassured. The tinnitus (ringing in the ears) is probably permanent. It just comes with aging - especially if you were exposed to loud sounds in your youth.

6) I assume that you know that because of the polyps and Barrett's you need to have regular scoping. Pain in the neck and ass - literally in this case. (sorry, but humor is my thing). You have a slight risk for cancer but these days if caught early, truly is treatable. pulups were removed. small 3 mm. benign?   Ill start here.

And I thank you so much for replying... I feel better just the joy that I can talk to someone..

Hope this helps.

[gnatcatcher]

Hi, Mike --

Your platelets are fine (well within the 140-415 normal range at your lab). Your alt was only a little high and your viral load (hep c quan 2458720) was mild. Your F1-F2 fibrosis score means you have mild fibrosis (F0 is none at all and F4 is cirrhosis), which explains why you need only eight weeks of Harvoni. (As you can see below, I was much worse off before I started treatment, so I needed 12 weeks of Harvoni).

During my Harvoni treatment, my bowels were very light colored. A while after treatment, they started to reflect the wider range of colors of the food I eat.

I had one polyp once, as a result of which I, too, have to get periodic colonoscopies. The important point is that I haven't had any since, in large part because that one polyp was a wake-up call to get my cholesterol within bounds (which I have been able to do with dietary changes). Just as you have been sober for almost a year and a half now (big congratulations!), you can improve other habits.

A lot of people with Hep C have trouble sleeping -- I did. That stayed true while I was on Harvoni, because it gave me heightened, "buzzy" energy, and because Harvoni requires keeping well hydrated, so my sleep was interrupted several times a night by having to pee. Your body also has had to adjust to the change from lots of drinking to none.

Hep C freaks out the immune system because Hep C is a retrovirus (it keeps changing). This can result in feeling weird in a lot of different ways, and those weirdnesses can mimic other known illnesses. These weirdnesses are called EMHs: extra-hepatic manifestations.

Mike, you are smart to come here and share whatever bumps you encounter on the road to becoming cured. Chances are, whatever you experience, someone else has experienced, too. I agree with Lucinda that "Nothing in your health history sounds any major alarms" (including nothing in the additional information that Lucinda asked for). You're getting treated soon enough that Hep C hadn't done anywhere near as much damage to you as it had to me (I'd had it a lot longer when Harvoni came along), yet I got cured and my body has improved a lot. You've got just 2+ weeks to go, then a post-treatment adjustment period, as your immune system gets used to not having a major enemy to fight.

As for the nose bleeds, I'm prone to get them because I've been on a blood thinner (for a different ailment) for many years. As Lucinda suggests, get that checked out for peace of mind. To keep nasal passages moist, a saline nasal spray like Ocean is safe to use often. It's what my ENT doc recommended.

All well wishes,

Gnatty

[lawrosa]

Hi, Mike --

Your platelets are fine (well within the 140-415 normal range at your lab). Your alt was only a little high and your viral load (hep c quan 2458720) was mild. Your F1-F2 fibrosis score means you have mild fibrosis (F0 is none at all and F4 is cirrhosis), which explains why you need only eight weeks of Harvoni. (As you can see below, I was much worse off before I started treatment, so I needed 12 weeks of Harvoni).

During my Harvoni treatment, my bowels were very light colored. A while after treatment, they started to reflect the wider range of colors of the food I eat.

I had one polyp once, as a result of which I, too, have to get periodic colonoscopies. The important point is that I haven't had any since, in large part because that one polyp was a wake-up call to get my cholesterol within bounds (which I have been able to do with dietary changes). My cholesterol total is 180.
 Had it @ 160 15 years ago. Higest I was is 199. My LDL is 108 ( o-99 reference) Just as you have been sober for almost a year and a half now (big congratulations!), Actually its only been 5 months. But thank you you can improve other habits.

A lot of people with Hep C have trouble sleeping -- I did. That stayed true while I was on Harvoni, because it gave me heightened, "buzzy" energy, and because Harvoni requires keeping well hydrated, so my sleep was interrupted several times a night by having to pee. Your body also has had to adjust to the change from lots of drinking to none.

Hep C freaks out the immune system because Hep C is a retrovirus (it keeps changing). This can result in feeling weird in a lot of different ways, and those weirdnesses can mimic other known illnesses. These weirdnesses are called EMHs: extra-hepatic manifestations.

Mike, you are smart to come here and share whatever bumps you encounter on the road to becoming cured. Chances are, whatever you experience, someone else has, experienced, too. I agree with Lucinda that "Nothing in your health history sounds any major alarms" (including nothing in the additional information that Lucinda asked for). You're getting treated soon enough that Hep C hadn't done anywhere near as much damage to you as it had to me (I'd had it a lot longer when Harvoni came along), yet I got cured and my body has improved a lot. You've got just two weeks to go, then a post-treatment adjustment period, as your immune system gets used to not having a major enemy to fight.My calculation of contracting hep c was probably 25 to 35 years ago when I used IV drugs.1992 was my last know IV usage.So I probably had it a long time and never knew it. But started not feeling well last year 2016 mid year. So I had the doctor in january test me for everything. I was bloated, foggy, so tired mid day that I could just lie down in the road and sleep.. Hence I stopped drinking immediately..

As for the nose bleeds, I'm prone to get them because I've been on a blood thinner (for a different ailment) for many years. A saline nasal spray like Ocean is safe to use often, inexpensive, and very helpful.The nose bleeds and ringing in the ears worry me. I have never had ringing in the ears until before the symptoms started. Nose blleds are only in morning when I blow my nose after waking. Its only right side nostral.Thanks for replying.. Im so glad Im getting responses.I wish I could type more clearly my thoughts..




All well wishes,

Gnatty

[gnatcatcher]

Your LDL number would be labeled near optimal at my lab. It gets harder to keep cholesterol in range as we get older, so congratulations on keeping the total <200.

Now I'm remembering that the important change I made to prevent polyps was to add more fiber to my diet. I found that there were enough high-fiber foods that I liked to eat anyway, so it was just a matter of finding out which foods were high-fiber, then eating more of the ones I like.

A lot of us here had Hep C for decades without symptoms. Luckily, you had your first symptoms before the Hep C had done anywhere near as much damage to you as it had done to me and some others here, and now you're on your way to a cure.

My nose bleeds have all been on one side. My ENT says the "plumbing" does get old and more prone to springing leaks. As they say, getting old isn't for sissies. You're probably learning how to blow your nose very gently, something you never had to think about before.

I'm hoping one of the people here with tinnitus (ringing in the ears) will join in soon.

[lawrosa]

Ill put my #'s up in my sig. I see thats common here.. I thank you all who replied.

About myself. Im a plumber and stay active. I try to eat right and cut out meat years ago.

Ive been slacking for a while but get into health spurts all my life. I dont eat processed food if I can avoid it. I try to eat things with less then 3 ingredients on the label.

I juice fresh vegys with my omega slow juicer when I can.

Please dont think im nuts but even before my diagnosis, maybe 8 years ago I even followed the gerson therapy for cancer/liver clensing. This includes juicing and coffee enemas to open up the bile ducts to release the toxins from the liver.

When I got diagnosed and in between doctors visits and ran full force and did coffee enemas every night.

I dont know if it contributed to my lower ast alt #'s.

My very first CBC taken on my b day 12/30/16 showed
ast 37
alt 48 ( That was the high one that scared me)

After two months on 2/7/17 I got the thorough liver blood test to prove hep c and geno type 1A.

they were

ast 19
alt 31

I just dont know why I feel unwell with all what I read. comparing to the other level of persons on these sites that are far worse then myself.

Why did I get symptons at all, so suddenly last year?

My fear is as I said I may have another condition and I am only being treated for hep C because thats all this blood work shows.

Not that I want anything more wrong with me. Im just a kind of person that needs to know whats wrong with me as I am usually high energy guy.

 Play golf in morning, change oil and mow lawn later in day, go food shopping, make dinner for kids...lol... I dont remember a day when I slept past 7 am.

Sry if im ranting.. Im just so mad at myself for the life Ive lead of partying, drinking, drugs etc..

51 yrs old and things catch up to you.

[lporterrn]

Ranting is allowed, but you don't sound in a rant yet.

I don't think you are nuts. I believe that something is wrong, and you don't know what it is.  However, compared to many I know (especially hep C patients), you sound pretty healthy and your habits are quite healthy. I keep wondering about the sleep. Sometimes our sleep patterns change with aging. I know for me, that one night of lousy sleep makes me look like I have dementia.  Studies bear this out - sleep deprivation can cause as much impairment as inebriation can.

Consider trying to improve sleep and see if that doesn't take some of the poor health feeling away. May help your digestive track too. It won't hurt to try.

And then there is this age thing. We don't expect our cars to run as well as they did when they were new, but we do expect that from our bodies.

As for the sudden onset of symptoms - that seems to happen around age 50 or 60 for many of us. Our immune systems decline beginning in our 40's and they keep declining. Our immune systems can't keep up with hep C as well, and thus the symptoms.

[gnatcatcher]

What's past is past. Please don't "should" all over yourself (easier said than done). You probably have many years ahead of you in which to live wisely and well.

Drinking coffee has been shown to be good for the liver. My ast and alt were normal until I had had Hep C for 35 years, but then they began a fairly rapid rise. The fact that you felt well until quite recently is not unusual in Heplandia.

Fatigue is extremely common with Hep C, and it is a side effect for Harvoni (during the clinical trials, 16% of people on the eight-week treatment experienced fatigue). During treatment, I had joint pains but I made myself do significant exercise daily, and I think that was very helpful, so I hope you don't let your worrying keep you from exercising. Well-timed exercise should help with the sleep issue, too.

The fact that your viral load was over 2 million and your genotype is known means you definitely have Hep C, so it is good that you are being treated for it. If you do have something else as well, being cured of Hep C will make it easier for docs to figure that out. Everything you have described so far seems to be explained by either Hep C or the normal aging process, but as Lucinda wrote earlier, let your doctors know of the nose bleeds, tinnitus, etc., so that they have a complete picture.

Glad you avoid processed foods as much as possible. You seem to have done a lot of things right -- all the more reason to let the past be past and concentrate on living your best life now.

[andrew j]

Hi Mike,

I have just been thinking about replying to your post - and notice that you are taking '20 mg of acid-reducer' with the Harvoni every morning.

I'm not the most scientific person in the world - but my understanding is that Harvoni likes a slightly acidic environment - and that a certain caution is required if taking it in conjunction with antacids etc.
No doubt everything's fine - but - has your Dr. checked this out with you?

(I looked up a reference: 'Acid-Reducing Medications: Interactions with Harvoni and Epclusa') ...

Best wishes,
A.

[lawrosa]

Yes the harvoni pharmacist @ CVS caremark specialty pharmacy told be to take my omeprazole 20mg with the harvoni in AM during fasting conditions.

I was on 40mg daily but was told that I need to reduce to 20mg when I started taking the harvoni on 4/8 17.

Then a week later my doctor called me and told me the same thing ( They were a bit late with relaying that info. )

And thank god the pharmacy let me now ahead of time. Reason being all online harvoni info I read states to take stomach meds 4 hours later or so. ( I belive thats what I read. Maybe I read 6 or 12, cant remember)

When I questioned they said this is best. For whatever reason acid medication reduces the effect of the harvoni, and what ever trials they did must be the reason to take at same time..

Heartburn I experienced a year before my diagnosis is/was most likely related to my liver/hep c I would think.

But im not sure about that..

And thank you all so far for being so kind to me here on these forums..

Hi Mike,

I have just been thinking about replying to your post - and notice that you are taking '20 mg of acid-reducer' with the Harvoni every morning.

Has your Dr. checked this out with you?

I'm not the most scientific person in the world - but my understanding is that Harvoni likes a slightly acidic environment - and that a certain caution is required if taking it in conjunction with antacids etc.

Hopefully Lucinda or Gnat (or someone else) who knows a bit more about this than I do will chime in soon.

(I looked up a reference: 'Acid-Reducing Medications: Interactions with Harvoni and Epclusa') ...

Best wishes,
A.

[Lynn K]

It all depends on what acid reducing medicine. If you are taking Tums, Rolaids or similar you have to wait 4 hours after taking Harvoni or take no sooner that 4 hours before.

If you are taking an H2 inhibitor like Famotidine, Tagamet etc "H2-receptor antagonists may be administered simultaneously with or 12 hours apart from HARVONI at a dose that does not exceed doses comparable to famotidine 40 mg twice daily."

Prilosec is a PPI or proton pump  inhibitor "Proton-pump inhibitor doses comparable to omeprazole 20 mg or lower can be administered simultaneously with HARVONI under fasted conditions."

See page 12 table 5 of the prescribing information sheet

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

Good luck on treatment

[KimInTheForest]

Welcome Mike! A number of noticed tinnitus on Harvoni treatment. I think in most cases it goes away or reduces after treatment is finished. In my case I have had mild tinnitus (a quiet ringing in my ears) for many years - I think as an electrosensitivity response to my prolonged computer use. At least that is when I am aware of it - when I am at computer. On Harvoni, the tinnitus increased noticeably and throughout day, but then subsided back to my previous level post-treatment.

Good luck on your treatment journey!

kim

[lporterrn]

Hi Mike,
I was reading this thread - I didn't realize that the ringing occurred as a result of the Harvoni - would you please clarify if you had ringing prior to starting Harvoni? I am tracking these lesser-reported sides.
Thanks,
Lucinda

[northfork]

Tinnitus....I has it! Ever since Harvoni  and then the Sof/ Vel/Vox combo. Very bad sometimes. I rub a little frankincense essential oil at my ears below the temples, and that helps a bit.

[lawrosa]

Hi Mike,
I was reading this thread - I didn't realize that the ringing occurred as a result of the Harvoni - would you please clarify if you had ringing prior to starting Harvoni? I am tracking these lesser-reported sides.
Thanks,
Lucinda

Ive never had ringing in the ears. When I got my symptoms and wasnt feeling well it started. Was/is not from the harvoni.

My symptoms came on suddenly of whatever I have.

1.Very tired mid day where i was so fatigued I could fall asleep standing up. urge to lay down and sleep.
2. Queasy feeling 24/7
3. Brain fog. sense of life being unreal. A heaviness in my head.
4. ringing of the ears very pronounced..
5. Bloated gut.

Stopped alcohol but before harvoni,

1. Pimples that stay raised and get hard crust like and hurt. Never come to a head really. Very very slow to go away. One may go away but others appear and continue the same pattern.

1. Back of neck hair line major area 3 or so.
temple hair line. one
Nose, forehead. one and one
Chin one.

They just appear radomly and slowly go away. they never heal fast, just a thick, flakey skin grows over and i pick it off. But then I dab them with rubbing alcohol. Thats how I get them to finally disapate after a few weeks, but then others just show up in a new spot and the process starts all over.

Ive never really had acne before.

[lawrosa]

I just want to tell a quick story also that ties this all together.

4 years ago my wife who works in the medical field turned yellow. Jaundice. She immediately got blood work done at the hospital.

1700 ast and alt. bilirubin a 5. The test came back hep c too.

At that time it was up to her to follow through with GI doctor and so on. It was on her to research her illness as I new nothing about it. But we were juicing then and two weeks of that and coffee enemas daily and after another blood test all levels were down.  ( We never got that second test and just went by what the doctor told her at the time) The doctor was amazed that levels went down so fast.

What I know now,

So she never follow through on going to GI doctor and never got advanced hep C testing.

So she/we went thinking she has hep C and there is no cure anyway.

Come 2016 when I got sick I immediately went to doctor and got tested because I assume I had it and I got it from her.

I take things to the extreme. Test cam back I was hep c. I had the test to make sure and find the genotype.

I read and read and read. Schedules colonoscopy and endoscopy. Read there was a cure. Discussed things with my GI and primary. Quit drinking. ( I dont use sugar or salt. Never had all my life. I drink coffee black and dont eat cake or have a sweet tooth.

With that said I for certain though I had cirrhosis and was dieing. Cancer, etc... you name it.

Now with both of with hep C we both will die and what will happen to the children. My youngest is 9. Oldest 25. Two grand children..

So with my new found knowledge I set her up appointments with my doctors to start the process of digging deeper. After all she is younger and didn't drink like me. She should be the one to live and carry on with the kids and family.. LOL

So she gets the accurate test in February and guess what. She dont have hep C..

Yup cam back neg..

She has some hereditary dilatory duct thing going on, and all that happened were here bile ducts got clogged.

The GI doc dont believe the coffee enemas opened up her bile ducts.

Many doctors do not believe in liver cleansing in this manner.

But to end my story here, this is what brought me to getting tested for hep C. As I never been sick in my life.

My symptoms were the same she had when she turned yellow..

I never turned yellow. All my blood tests were normal except I was hep c positive and my alt # was a 48..

So this is where I am at...

Do I feel normal? NO...  Is it the hep C? IDK. Is it the harvoni? IDK..

So what to do... I assume get off harvoni when my TX is complete, get new blood test, see results and wait a few months to see how I feel.

If still feel like not myself then pursue other avenues..

Its 11 pm here. I drove 8 hours today picking up a new camper in PA. It was a 6am - 6 pm day. Am I tired. Kind of but I cant sleep. Ill probably be up to about 3 or 4.

Ill take my 10 mg of melatonin at 12am. 

?? Hey wait. could the melatonin be causing my pimples? I was taking that when I first got sick as I couldn't sleep. Ive been taking it for about 5 months now...

Ill have to read some on the internet..

OK enough of my rambling on.. My spelling is atrocious too...lol..

Thanks for being here for me guys and gals..

[lawrosa]

Duplicate

[andrew j]

Deleted

[lawrosa]

There's no point in discontinuing the Harvoni now - six-plus weeks into an 8 week treatment.
... At least see if you can clear now.
The other probs will probably ease off.

I meant finish my TX, not to discontinue it... he he..  $33000 a bottle Im taking every last pill....

[andrew j]

R-i-g-h-t!

[lporterrn]

Waiting and seeing is a strategy that makes sense Mike. And thank for clarifying - yes, some people do react too Harvoni the way you described. So, I would assume that is the cause for your recent complaints.
As for the pimples, have you seen a dermatologist? Although it seems logical to use alcohol to dry out skin eruptions, it is probably not the best solution. Skin needs moisture in order to heal, so those old time remedies such as alcohol and hydrogen peroxide can make things worse.   

[andrew j]

Mike,

I did a quick search and found that - yes - others have reported probs with acne and pimples etc. while taking Harvoni.
Most of the references are here (e.g. 'Harvoni and Side-Effects - Living with hepatitis - Hepatitis Forums').
Have a look.

... Did I see 'sage water' somewhere as a Tx? ... not sure.
Gently with that skin, anyway, as Lucinda says.

Are you drinking plenty of water?

(P.S. I have deleted above!) ...

[lawrosa]

Yeah I try to drink a lot of water..

Its not easy when you feel bloated...

[Mimi]

hi. i have had hep c for 23 years, diagnosed 10 yrs ago but my liver function was good so doctors didn't want to put me through the interferon treatment and suggested i wait. the last 2 years i started feeling worse although my tests showed good liver function still... i was constantly bloated, uncomfortable when sitting,like i had an melon stuck under my right ribs....., always tired, bad heartburn, brain fog, my hearing went bad.... finally started the viekira pak with ribavirin treatment 5 weeks ago. i was denied harvoni...too expensive. i also have a feeling theres something seriously wrong with me but..... think its mostly anxiety which gets quite bad with hep c. i read that as the liver is responsible for getting rid of toxins and hep c impairs it from happening well, some of the toxins travel to the brain causing brain fog, memory problems and anxiety. treatment affects the mood so anxiety can get worse. i started seeing a counselor as i want to get better physically and mentally in one go
just try to take one day at a time and you will get there!
my viral load dropped from 114,000 before treatment to 12 after just 2 weeks of the treatment!
wish you the best of luck and you are not alone! pm me any time

[merril]

Hi, glad you found this site. I contacted Hep C in the 80's, working in hospital. Failed Interferon and Ribovirn in 99. Never had sx with the Hepatitis. Pcp nagged me into seeing specialist again. Viral load in the 600,000 range, normal liver ultrasound. Actually was surprised when my Medicare plan approved Harvoni. Am at the end of week six of twelve week treatment plan. First two weeks felt terrible, had a rash week two that faded over about ten days. Now biggest problem is insomnia. Specialist said normal reaction to Harvoni, pcp gave me low dose Vistaril for sleep, it is generic, not narcotic, not addictive, helps a lot. I do have some low energy, lack of motivation. That is normal for this drug, I just make myself get up and out. This is a strong medicine and I think can cause some side effects, also your immune system is trying to stabilize and sort of reboot. Try to stay well hydrated, take a vitamin or drink orange juice,, keep Vitamin C level up, use Aveeno all natural creme on your skin. I am at halfway mark, 6 weeks down, 6 to go and determined to ride this train to the end. Hang in there, you can do this and getting rid of the virus is worth it. Harvoni is easy when you compare it to the old treatments, like spending a year on IM Interferon. Write any time and have an occasional treat, a new book, a couple of big doughnuts, whatever is a treat for you. Best Wishes

[lawrosa]

Well I feel the need to come here that I took my last pill on the 2nd of june..

Im not feeling well.

Nausea some. Lower energy it seems. Heartburn is worse then it has been.

I feel like I did before harvoni..

Im going to take my blood test tomorrow as they did not tell me how long after I was done with harvoni to get tested. I have had the script for a wile and was just waiting..

I assume I should start a new post in that other forum for post harvoni?

I guess I have a lot of reading to do, but just dont feel up to it..

I see the doctor on the 12th..

Anything I should specifically ask>?

Im on unemployment now because my company shut down. But how is one supposed to work feeling like this?

I probably cant even get disability cause there is nothing wrong with me if my blood test comes back im hep C free..

Uggg now the worries that something else is wrong with me..

Im sad...worried....

[KimInTheForest]

Hi Mike. When you see your Dr on the 12th, ask for a CBC (Complete Blood Count - i.e., red cells, white, cells, platelets, etc.) You might also ask to be tested for Epstein-barr virus. There has been some discussion of Hep C clearance reactivating EBV in some people. That would make you feel like crap.

But also, you only finished treatment 2 days ago. Some of us felt very bad post-treatment for many months (or longer). So you haven't really given your body a chance to bounce back from the drugs yet and find its new balance post-drugs and post-HCV. I hope this turns around for you soon.

kim

[andrew j]

Yes - and just to reiterate (if you don't know already):

It's been the practice until recently to run a full liver panel (including a test for viral load) both at the end of Tx - and then again at 12 weeks post-treatment.
This second test determines whether or not you have cleared the virus.

Hopefully the blood test you are about to do now requests the above (among other things) - so you have some indication of what's going on right now ... and you have further teats scheduled for 12 weeks from now.
(Or maybe your Dr will order those when you see him).

I'm sorry you're not feeling so good.

Following on from Kim - yes - get as thoroughly checked out as you can.

Best wishes,
A.

[lporterrn]

I strongly encourage you to talk to your doc about the heartburn. I think we underestimate the havoc this can play in our lives; it can make us feel unwell and interfere with sleep which adds to our feeling like crap. It might not be the Harvoni that is causing you to feel so bad but the heartburn which was affected by the Harvoni (either directly or as a result of not taking heartburn meds).

[lawrosa]

Thanks for the replys..

I take heart burn meds as stated. The 20 mg with harvoni worked well.  I dont know why. My normal dose was 40 mg..

Now that I am off harvoni the 20 mg is not cutting it..

I dont know why after 8 weeks on harvoni with no heartburn while im on 20mg, all of the sudden a day after harvoni heartburn increased. Not drastic but I know its there..

Ill use up all my 20 mg and go back on my 40 mg.

I gave blood today for the full liver count thing so we will see...

[lawrosa]

Im trying to find side effects post harvoni..

OMG found this... This is horrible...

https://www.change.org/p/dr-janet-woodcock-the-fda-must-disclose-all-potential-side-effects-of-harvoni-hepatitis-c-medication?source_location=minibar

I should stop going on the internet...lol


Man nights are worse with my ringing ears.. Slept 10 hours last night. Reducing my melatonin dose to 5 mg as I dont want to take any sleep aids.( was taking 10mg)

Just feeling funky.. Sense of worry and being not well..Insomnia feeling I guess.

Its hard to explain..

What the hell is the doctor going to do when I see her. Take my $50 co pay and tell me Im fine???

Sheesh...

Afraid..

Scared

Feel hopeless.

Im just talking out loud my feelings at the moment. Dont mind me..

[Lynn K]

Hi sorry to hear of your problems hope you get to feeling better soon.

Just one comment on your link that is a petition posted by Katrina Williams to Change dot org everything there is her personal opinion and what ever search she may have conduction. She is another patient like us and not a medical person.

The purpose of change dot org per their web page is:

"On Change.org, people everywhere are starting campaigns, mobilizing supporters, and working with decision makers to drive solutions."

So basically it is an open forum for anyone to start a petition for any reason

So bottom line take with a grain of salt. This information is not a study or any official channel just one persons opinion. Not to invalidate her opinion just to remind that there are many opinions to be found on the internet and she did not provide any data to back her statements.

[lawrosa]

Thanks for that Lynn.  Just reading the comments on that link I posted were shocking to me and questioning my decision...

Too late know though as my treatment is over...

I just want to feel like myself again... Its been so long I dont know what normal is anymore.. ( And it hasnt been that long) lol..

Its only been about 6-7 months that I haven't felt myself..

[andrew j]

... As long as you don't feel appreciably worse than you did before Tx.
Some people do, or have, unfortunately ... Not many, but a few.

For now, let's just keep everything crossed, and hope that you clear.

(Your symptoms appear to be classic Hep C symptoms.
I'm not a Dr of course, but ...

I felt 'not myself', like you, for twenty years.
That was before I became full-blown symptomatic, which lasted another twenty years!
So yeah - I do know what you mean?!).

Hang in there.

[dragonslayer]

Hi sorry to hear of your problems hope you get to feeling better soon.

Just one comment on your link that is a petition posted by Katrina Williams to Change dot org everything there is her personal opinion and what ever search she may have conduction. She is another patient like us and not a medical person.

The purpose of change dot org per their web page is:

"On Change.org, people everywhere are starting campaigns, mobilizing supporters, and working with decision makers to drive solutions."

So basically it is an open forum for anyone to start a petition for any reason

So bottom line take with a grain of salt. This information is not a study or any official channel just one persons opinion. Not to invalidate her opinion just to remind that there are many opinions to be found on the internet and she did not provide any data to back her statements.

That linked site is a total crock.   If some of these people had their way, Harvoni would have been kept off the market.. Hey, Great.  For the vast majority of us who had a good experience and outcome with this drug, that site is anathema.   

[Lynn K]

Hi Paul

Change dot org is a good site in itself at least it used to be just this person is using it for her own agenda.

Just looked up a little history about the site

"Change.org was founded by Stanford classmates Ben Rattray, Change’s CEO, and Mark Dimas, the company’s Chief Technology Officer in 2007. The original goal of the website was to connect users with the activist causes they care about the most and encourage them to donate to nonprofit organizations focusing on those issues using a social networking platform. Topics focused on social change, such as ending global warming and whaling. Change.org collected one percent of every dollar given through the site.

Change.org changed its model in late 2008, according to The Chronicle of Philanthropy. The Chronicle described the second-generation Change.org as “a network of blogs that discuss social issues.” In a feature on social change activism published shortly after the 2008 presidential election, Canada’s Globe and Mail newspaper described the site as “as aggregate site pointing interested parties toward groups involved in issues such as climate change, homelessness, immigration and gay rights.”

The site capitalized on President Barack Obama’s slogan of “Change” to build its name after his election in 2008. Change.org let members vote on their top–10 priorities for the new administration. The resulting list was effectively a left-wing wish list. According to the Myrtle Beach Sun-News, the top priorities ranged from the liberal but possible, like “[Grant] citizenship to young illegal immigrants who graduate from college or serve in the military,” to the outlandish, like “create a federal Department of Peace and Non-Violence.”

In 2010, Change.org adopted its current petition model, and expanded in 2011 by acquiring PetitionOnline.com. A 2011 feature on the company in The Bay Citizen reported that Change.org became profitable in late 2010 to early 2011, transitioning from its original nonprofit model.

While the company was founded to promote social change and had a stated policy that it accepts “sponsored campaigns from organizations fighting for the public good and the common values we hold dear—fairness, equality, and justice," the organization has long-claimed it has no ideological leaning."

[dragonslayer]

The mission statement, such as it is, sounds good.. But people have to remember that what they read there is totally unvetted; people can spout off about whatever it is that's stuck in their craw without any thought as to the veracity of what they write.  Im not saying that people purposely post untruths, although it certainly happens.   Whats written there really shouldnt be used by people as proof of anything..   

[Lynn K]

Yes exactly anyone can post a petition at change dot org the original idea was as a way to communicate with the policy makers to petition for social change.

This is one persons opinion on the subject of Harvoni which she posted as a petition for others to sign to communicate with the FDA about their concerns. But just the opinion of this one individual is represented by her petition

[CHepCFree]

Interesting that over 600 people have signed the petition in Change.org.  It seems not only Katrina has concerns but hundreds more.   

[northfork]

I can tell you from personal experience that anyone getting a placebo in a blind study will eventually get the drug once the placebo course is done. So her claim that "very few got the actual drug" is false. I was in a Gilead study for Vosevi and got the placebo for 12 weeks and then the drug for 12 weeks.

[Lynn K]

Well 600 out of tens of thousands yeah

But my point was not a scientific source but an individual who started the petition

[northfork]

I think what she said was that though 1500 + people were in the study, only half got the drug. They all got the drug eventually if they wanted it, is my point.

[Lynn K]

I think we are in the same page northfork was more speaking to CHepCFree

I also have heard for ill patients participating in trials that they will be offered the real meds after the placebo process.

I was in a couple of trials but there were no placebo arms in the ones I participated in.

Really with three rounds of interferon, 2 of those with ribavirin, an experimental med, 12 weeks of Sovaldi/Olysio, and finally 24 weeks of Harvoni/15 weeks ribavirin I have no third eye and no glowing in the dark nichts, nada, nothing to report.

For being 59 years old and with cirrhosis for now for 9.5 years I feel pretty darned good.

[northfork]

   

[jpoul68]

I began treatment with Harvoni almost two months ago for my chronic HCV. I have roughly a week left of treatment to go.

I've been living with chronic HCV for over 30 years due to a tainted blood transfusion in the early eighties stemming from a motorcycle accident.

Prior to treatment, I had between moderate and severe liver fibrosis from the virus, making treatment a priority.

I was told that treating would be a "breeze" and not hard on my body. This gave me hope that I wouldn't experience sides. Within a few days of starting treatment however, I started to have daily migraines, severe insomnia, nausea, depression, disorganized thoughts, confusion, and wide spread muscle spasms and nerve pain.

What complicated matters was the disbelief of my GI that this was from the medication as well as his lack of support because of initial clinical trial data from the start up phases. And to add insult to injury, the doctor has been unwilling to prescribe anything for symptom relief due to medications being categorized as CNS depressants and controlled, although there isn't a history of abuse. I'm unable to take sedating tricyclic anti-depressants due to having hypertension. In other words, I'm being allowed to suffer without the support from my doctor to get through this.

I'm the kind of person that's willing to try and will give a course of meds my best shot, but when I experience adverse side effects, I'm not listened to or believed, although I'm cooperative. This makes me feel foolish, violated and stigmatized for having done nothing wrong.

I'm angry and hurt to say the least, for I don't know how to find a caring physician that will take the time to listen and give me credit for knowing my health and body.

I'm glad that this medication helps some, but what about those for whom it doesn't? What is our recourse? I'm also bleeding from both openings, which hasn't been experienced before.

You aren't alone. And by the way, labs show no more virus, but I feel worse now than before treatment. The nerve pain is so bad, I scream!

[lawrosa]

JP if your bleeding you need to get the GI doc to do colon and endoscope. See if portal hypertension may be part of the issue...

Let us know how your doing...

[Lynn K]

As far as headaches, mild headaches are common so I assume you may be having the extream version of this common side.

Most have suggested making sure you are drinking adequate fluids generally the amount we should be drinking anyway the old eight each 8 oz glasses daily or possibly a bit more

If you are a little shy on your fluid intake this may help.

Wishing you improving health and a lessening of symptoms. I agree Mike L you should discuss your bleeding with your liver specialist that can be a serious symptom of liver disease.

You said you have moderate to severe liver fibrosis do you mean F3 to F4?

Those like myself with F4 liver cirrhosis are a little different than other patients and have to be very careful with any and all medications.

Have you been diagnosed with cirrhosis? Would you know if you have an enlarged spleen or a low platelet count? Having a platelet count below normal can be a first sign of cirrhosis.

Again best of luck
Lynn