Hep C Discussion Forum

Shemp · Senior Member

RE: Hi all. My name is Joe - Had HepC for 40 years - will be starting treatment soon

Hoodietree · Senior Member

Joe, you have my sincerest sympathy. Hugs to you. After all you went through with the car accident and recovery from that, dear God, You have really suffered and I will pray for you right now.

I am sincerely hopeful and optimistic that you and your doctors will find a way to get this cure into your poor battered body. Epclusa is only 1 pill a day perhaps you can be eligible for Epclusa? Since you were not on Mavyret for very long, you could still be considered treatment naïve which might make you eligible for it. Canuck and others know a lot more than me and I think it was Canuck who suggested possibly Vosevi would be right for you. Please ask your doctor to consider these options for you.

Stay strong and be well. Youve been through hell, you poor guy, your day will come I promise! You will be strong and victorious!! The sun will shine for you my friend

5-1-18 · Guru

oh dear, joe how sad that tx made you so sick.

i hope they can come up with another plan. ..maybe having one pill a day for longer? i don't know what they do in this case.

your family must have been so scared.

please let us know how it goes for you... you are such a trooper to try to take that stuff when it made you sicker than any of us experienced.

i pray you find a treatment that works. your accident sounds so awful, and yet here you are

Canuck · Guru

Hi Joe,

Well, that sure is not good!

Let me see if I have this right? ... you took some "test" pills for a couple or few days, around Nov 7, just to see how they would make you feel, basically a half pill (or pills cut in half) so as to not be the full dose prescribed - just to see how they might make you feel - then, after we all said don't do that - and your doc said only take the full dose of Mav, you did start taking the full dose around Nov 9?. So, 3 wasted days of half doses, but then you started in on the full daily dose on Nov 9th?

Due to how they pills were making you feel you had to stop taking the Mav - when? (Did you take them for about 2 weeks, stopping about Nov 23?)

Is that right? instead of taking your full 8 week course, you only got 2 weeks done?

What GT are you BTW - you still haven't said. Are you a GT1 or a GT3 maybe? It would be good to know.

We need more general basic info on you, you have not done up a signature line - that would be helpful if you did.

You also mention "gurd" or G.E.R.D. (that you have had since this summer?) and taking some anti-gas medicine for this? What is this anti-gas medicine? You also mentioned a blood sugar problem at one point? Are you a diabetic?

It sounds as though you and doc are going to have to address this hard to solve problem of how to get your gut and you to accept a DAA drug. You might get used to any side effect you initially have, you may be able to begin to tolerate the drugs, but not if you are having huge gastric intolerance to the point of vomiting your dose. This problem is going to have to be addressed fully, no matter what DAA you take next when you go to re-start your HCV treatment once again.

It is really a shame you got about 2 weeks of the 8 weeks completed!, but then had to stop. You and the doc are going to have to have long talks about how to get around this problem you experienced, so that you can take a DAA. It is never good to start and course and then stop before it is finished.

As well, (to me) it sounds as though you were trying to do too much physical activity while starting a new med, taking your pill and then doing work/chores/"bending over-work", anything that exerts abdominal pressure (when you have gerd) is NEVER a good idea when you have something in your stomache. How soon after taking your Mav dose did you do the vomiting? - after a dose of Mav you should have gone for a gentle walk, at best, (no exercising/exertion/bending over, laying down, or working after a dose), better yet to stick around inside the house for a while after your dose, comfy and quiet, quietly sitting reading a book or watching TV, remaining nicely upright for hours after your dose (when one has gerd).

Please do let us know more of your signature line info and what your doc is saying to you about a plan for you. C.

Tig · Admin

Sorry to hear about your reaction, Joe. That sounded vicious, to say the least. Has your doctor discussed what’s next? Something like Vosevi or wait and give you some time to recover probably sounds good to you. Rest easy and let us know how things progress.

Cheddy · Moderator

Wowser Joe. That's an intense reaction. What do your doctors and hep specialist suggest next? Can you try another treatment to cure your HCV?

I'm so sorry for you that this is what happened. I hope you are finding other ways to move forward.

Warm regards, really,

Cheddy

joe56 · Newbie

Shemp wrote:
Joe,
I myself am on Mavyret.Just started wk 9.I'm not going to lie to you and tell you this is a day at the beach.You have to remember you are about to take one of the strongest drugs ever invented.There's going to be side effects.To what degree depends a lot on you.I can't tell you enough how important water is.I hated it my whole life and some days I feel like a camel,but it really helps.I learned the sides are like the virus,peaks and valleys.The first couple weeks are a learning curve.I learned I can't do what I usually do.Heat, hard physical labor,and second guessing are not good.I still work.I'm an independent trucker and I travel up and down the east coast about every week.My crazy schedule further complicates my treatment.I'll tell you this though,by week 6 my labs came back normal and the virus was undetected.I had some really good days in that time.Right now,not so much.Peaks and valleys.28 days to go and you couldn't pay me to stop.Take your meds as directed.Same time every day.I take mine at night with a snack right before bed.It might work for you,or not.Thats something you have to figure out.You have to be all in.Drink lots of water.I'm not an expert but if I can help,let me know.
I know.. the side effect were tearing me up. On November 9th, I began the full dosage.. All 3 horse pills in one swallow. I was telling myself "alright, the HEPC poison is leaving your system, what do you expect ? " -- I would take the pills and go do things to keep my mind occupied.. Wash and wax the car / clear out the leaves in the yard / Caulk windows-- time consuming stuff. By the end of the second week, I couldn't take it anymore. --- Blood draining out of my head to the point I was white as a ghost - It felt like severe seafood food poisoning (Which is no joke) - Couldn't even turn my head because it felt like I was going to throw up and pass out. (Twice outside I got sick to my stomach behind the garage) - Not to mention the constant dizzy feeling. -- The last day I tried to trooper though it and thats when she called the ambulance and my doctor and he said to stop taking the pills ...
The car accident I was in when I was 16 / July 19, 1978 - (I am 56 now) - My head shattered open / They had to cut me from ear to ear / literally pull down my face so to remove all the bone fragment - They had to remove 26% of the left side of my brain over the high impact to my skull of the car crash. (That could be the reason of these crazy side effects, who knows) - My anxiety level went through the roof -

|

Canuck wrote:

Hi Joe,

Glad to meet you, I had to go out of town, I just got back, so I am catching up in welcoming you here.

Be sure to tell your doc about how many 1/2 pills you took, and over how many days, and what days you did this.

One curiosity for me is that picture of your 4 boxes of pills, and that you said that each box contains a 1 week supply of pills? Funny, I did not know before, that Mav came in boxes that could contain a 1 week supply, I thought Mav only came in boxes that contained a 4 week supply? So, you are saying that of those 4 boxes, that one box is a one-week supply (21 pills)?? That is 3 pills per day x 7 days for each box?

I am so glad for you that you are soon to be rid of this hepc. smile C.

-- Edited by Canuck on Saturday 10th of November 2018 02:31:44 AM

Glad to meet you too .. I told the Doctor I was testing the waters.. and he said don't - Just take the pills as perscribed.. which I did the following day - ^^ Above explains my experience ...

Yes, one week of pills in one box. Yes, that is exactly what I am saying - 4 boxes where each box contains a 7 day supply. (21 pills).. Not sure how you get your pills.. but here is how mine came ... Here .. Took some pix for ya.

4 boxes per small case - / 7 days of pills per one box -

7 days- one box - How do your pills come ?

-- Edited by joe56 on Friday 7th of December 2018 08:39:01 PM

|

Cheddy wrote:
Joe,
Welcome. I am so glad you are starting treatment. Please do it right. All of the posts below point to the same thing: take it exactly as prescribed and drink massive amounts of water.
On another note, I had chronic bloating and digestive issues before being cured. It comes occasionally now but is related to what I eat and drink. Whenever I feel nausea, I eat or drink something with ginger in it. It works great. You can search for a homemade recipe on this site, or you can buy ginger brew at the grocery. Great beer substitute, but sugary.
I'm glad you found us, Joe. You're going to find a lot of knowledge here that comes from experience. Often our medical teams are missing that. We also have people here who are really up to date on the science behind past and current treatments. Listen up. All intentions here are to help you get well and get through the distractions.
Best of luck to you, Joe.
Welcome aboard.
Cheddy

Thank you ... The bloating is / was crazy.. After 40 years, I have no signs or symptoms of HepC ... No Yellowing / No swollen ankles.. my energy level is though the roof - It's all gas -- Gurd as my Doctor says and this just began this past June ... It was at the point it was hard for me to catch that last 0.01% of air (You know when you take a deep breath ? that last little 0.001 of a full breath of air was not happening) - This would last for a good 3 days too - Anti gas pills worked wonders -

-- Edited by joe56 on Friday 7th of December 2018 09:01:56 PM

|

5-1-18 wrote:
yea, the puking can't be good after taking the pill.
can you call the dr or pharmacy for advice? maybe eat something like oatmeal with a bit of butter for fat?
i wish you the best as you beat the beast..... i only had 8 weeks also, others have longer treatments. i was so thankful for 8 weeks cos 12 would have done me in.... imagine those on longer tx's .wow
hopefully your body will decide this tx is a good thing and start cooperating with you :nod

It was the pits ... Sometimes I would vomit with-in a two hour range after taking the medicine ... and the blood rushing out of my head was something else ... Ya just felt it.. like I was possessed ... Like whoom, from head to toe like I was catatonic and walking around in a picture ... I cant describe the feeling.. it was crazy ... I cant believe drug addicts pay money to feel like that ... wow

-- Edited by joe56 on Friday 7th of December 2018 09:26:14 PM

Canuck · Guru

Hi Joe,

Glad to meet you, I had to go out of town, I just got back, so I am catching up in welcoming you here.

I see you started in on your sig. line, that's good, please do include important things like what your GT is, labs such as ALT/AST/BILI/GGT/AFP, and include your Fscore - you had mentioned you were aprox "stage 2" (or F2), but, in your health file there should be a blood test that may better express whether you are closer to F2 or F3. Also if you have had (additionally) a fibroscan, this is also good to note in your sig. line, as those results will also be more definitive to your Fscore (or "staging"). Good you mentioned you had an U/S - what did your radiology report on that U/S have to say? All these things are good to note in your sig. line. It also helps to indicate your 8 week Mav treatment start date and end date (SOT and EOT).

I can only reiterate what the other have mentioned here - NEVER, NEVER fool with half doses of DAA's, ever - everyone is quite right here about film-coated drugs, the intended blood levels of the drugs for your treatment MUST be correct, regular and maintained, every day, until you are finished. Also, I would be taking my Mav WITH a meal.

Be sure to tell your doc about how many 1/2 pills you took, and over how many days, and what days you did this.

One curiosity for me is that picture of your 4 boxes of pills, and that you said that each box contains a 1 week supply of pills? Funny, I did not know before, that Mav came in boxes that could contain a 1 week supply, I thought Mav only came in boxes that contained a 4 week supply? So, you are saying that of those 4 boxes, that one box is a one-week supply (21 pills)?? That is 3 pills per day x 7 days for each box?

I am so glad for you that you are soon to be rid of this hepc. smile C.

-- Edited by Canuck on Saturday 10th of November 2018 02:31:44 AM

Cheddy · Moderator

Joe,

Welcome. I am so glad you are starting treatment. Please do it right. All of the posts below point to the same thing: take it exactly as prescribed and drink massive amounts of water.

Yes, you are going to have side effects and you are going to learn to live through them. It will make you better in many ways.

I was a big baby about feeling so badly when I was on treatment (you may not) but it really was all worth it. If you can, focus on the fact that you are curing a potentially deadly disease. There is a war raging inside of you - treatment vs. disease. Choose sides with treatment and again, follow the instructions to a T.

On another note, I had chronic bloating and digestive issues before being cured. It comes occasionally now but is related to what I eat and drink. Whenever I feel nausea, I eat or drink something with ginger in it. It works great. You can search for a homemade recipe on this site, or you can buy ginger brew at the grocery. Great beer substitute, but sugary.

I'm glad you found us, Joe. You're going to find a lot of knowledge here that comes from experience. Often our medical teams are missing that. We also have people here who are really up to date on the science behind past and current treatments. Listen up. All intentions here are to help you get well and get through the distractions.

Best of luck to you, Joe.

Welcome aboard.

Cheddy

Tig · Admin

As I’m reading this again, I got the impression that you have not officially started treatment. Is that right, Joe? Please fill out your signature line and be sure to include your start date. That will help clear up any confusion. Thank you.

Hoodietree · Senior Member

Breaking the pill or crushing it seems extremely ill advised to me because The pill itself is coated for a reason it is supposed to be well into your stomach before the enteric coating wears off, it is not designed to be introduced to your esophagus like that.

https://en.m.wikipedia.org/wiki/Enteric_coating

Joe if you can please just take the pills as prescribed you will be on a much better course. Ill tell you what was told to me: trust in this process and you will be fine. Dont make it harder than it has to be. Its not a walk in the park but its not so terrible either. I hope that you discover that for yourself and I hope that it is as true for you as it was for me.

Try following your doctors directions and the suggestions here <i> to the letter </i>. Its not that hard sweetie you are complicacting it and paradoxically making it worse with your attempts to make it better.

-- Edited by Hoodietree on Friday 9th of November 2018 01:03:41 PM

-- Edited by Hoodietree on Friday 9th of November 2018 01:04:23 PM

5-1-18 · Guru

yea, the puking can't be good after taking the pill.

can you call the dr or pharmacy for advice? maybe eat something like oatmeal with a bit of butter for fat?

i wish you the best as you beat the beast..... i only had 8 weeks also, others have longer treatments. i was so thankful for 8 weeks cos 12 would have done me in.... imagine those on longer tx's .wow

hopefully your body will decide this tx is a good thing and start cooperating with you

Shemp · Senior Member

Joe,

I myself am on Mavyret.Just started wk 9.I'm not going to lie to you and tell you this is a day at the beach.You have to remember you are about to take one of the strongest drugs ever invented.There's going to be side effects.To what degree depends a lot on you.I can't tell you enough how important water is.I hated it my whole life and some days I feel like a camel,but it really helps.I learned the sides are like the virus,peaks and valleys.The first couple weeks are a learning curve.I learned I can't do what I usually do.Heat, hard physical labor,and second guessing are not good.I still work.I'm an independent trucker and I travel up and down the east coast about every week.My crazy schedule further complicates my treatment.I'll tell you this though,by week 6 my labs came back normal and the virus was undetected.I had some really good days in that time.Right now,not so much.Peaks and valleys.28 days to go and you couldn't pay me to stop.Take your meds as directed.Same time every day.I take mine at night with a snack right before bed.It might work for you,or not.Thats something you have to figure out.You have to be all in.Drink lots of water.I'm not an expert but if I can help,let me know.

Observer · Guru

I second the stern voice/warning...do not break em... HCV is a very clever mutating virus...you need to hit it hard and then keep a constant amount of the drug in your body so it cannot mutate. Always take your pill/s at the same time of day...or evening... If you are concerned about feeling woozy or pukey, it may be best to take it in the evening so you can sleep through the wooziness.

Many of us here set alarms on our phones to remind us so we didnt miss a dose or forget to take it at the right time. I was on a different regime than you, had to take my pills 2 x a day...set my clock for 10 minutes before pill + at pill time...in case I had to get back from a walk or whatever.

Always drink a lot of water... it really does help.

Dont take any suppluments unless your Dr has approved them as even some as simple as tums (taken too close to pill time) can mess with the effectiveness of the meds.

Cutting out sugar is a tough thing to do, be careful of sugar substitutes...aspartame ,equal,nutrasweet...can cause/trigger health issues...from headaches to digestive symptoms...

If you try stevia...be careful to use a tincture or leaf rather than the processed, bleached stuff they market..

5-1-18 · Guru

joe,this your time to get healed.

drink a gallon of water a day.

take your whole pill at one time with whatever food you are supposed to.

cut out whatever you need to for your treatment weeks.

i'm not kidding, even if you have to change your whole life around for the treatment time it is worth it. You will be free from HepC and then can add things back a little at a time.

i am cheering you on!

it will be better to be sick on and off during tx than forever without tx.

oh, and btw, drinking any alcohol/beer at all can bloat you cos you have liver disease cry ; but at least the hepC will be gone and not making it worse once you are cured

good luck joe, you can do this!

-- Edited by 5-1-18 on Friday 9th of November 2018 02:16:52 AM

Tig · Admin

Hi Joe,

Dont break or crush your pills and don’t take test doses to see how you will tolerate them. When you start, start them as prescribed. You must take them whole and allow the drug to develop a constant blood level throughout the entire course of care. You haven’t hurt anything, just don’t do it again! (My stern voice is talking, lol!)

You will notice some changes during the first 2-3 weeks, because these are powerful drugs. They may have a low side effect profile, but they are strong antiviral medications and your body has to adjust to them. They are nothing like the old drugs, Interferon and Ribavirin, but they aren’t Tylenol either. You MUST drink at least a gallon of water every single day or you’ll notice increased fatigue and headaches. I can’t impress that on you enough. If you feel poorly, drink more water! When you take them is up to you. Many take them according to their schedule, if they’re still working. Evening works well for many and allows you to sleep. Talk to the others here and they’ll give you a good heads up. When you pick a time, you must take them at the same time each day. Set an alarm and use a daily pill box to assure you do.

Shemp · Senior Member

Welcome Joe,

I also hit the unlucky lottery. Lots of fine people here to help you on your journey.

joe56 · Newbie

Thanks so much everyone for your warm welcome. I am happy to be starting my treatment soon too.

Thank you. I googled in hopes of finding a message board like this one where others are / have experienced the same thing I am dealing with now. I have read a majority of the very informative prior threads / posts concerning treatment.

My Infectious disease doctor was very vague about explaining things to me. It was basically : 'You qualify for Mavyret - You have to be home to sign for it' - As he was looking over my blood and ultrasound results, I asked him to show me my HepC stage on the 'liver model' that was on the counter.. his pen pointed at the end of Stage 2 going on to Stage 3.

No, I had / have absolutely no symptoms of liver disease. No yellowing, nothing. (What's new now is getting bloated every time I turn around) No, my doctor wasn't really alarmed of me testing positive for HepC because I told her at my very first visit that I may have HepC. -- 40 years with HepC - 38 of those years a beer drinker and only the end of Stage 2 sort of blows my mind.

There were two delays in starting my treatment. I was on a hunting trip, had a few evening drinks here and there and when I returned, my doctor advised me to make sure my system was free of alcohol prior to starting treatment. That was the first week. During that first week of cleansing myself out, I drank only water and hot chocolate. Out of nowhere, I experienced pretty bad stomach bloating. (This happened a few times before and I thought is was from drinking carbonated beer) - I thought bloating stemmed from drinking a lot of carbonated beverages. My doctor said I suffer from Sugar intolerance. I guess from all the candy and hot chocolate I've abused over the years finally caught up with me. (I never heard of such nonsense). Once again, advised to get rid of the bloating prior to beginning treatment since the symptoms of Sugar intolerance are the same as the Mavyret's side effects. The thing is, it's hard to breath when I am this bloated.

Fast forward to week 3 (this week Sunday the 4th). Read the side effects of Mavyret and figured let me test the waters. Opened up Day 1s box of 3 Mavyret / bit one pill in half and swallowed it while eating lunch and drinking water. 30 minutes later, bang, hit me like a ton of bricks. I must have been dazed and confused for a good 2-3 hours. Day 2, same time, same thing, took the other half. felt bad but not as bad.

Yesterday (Wednesday - I took half a pill and felt very little to no side effects at all. Thinking to myself, this is a breeze. My body is getting used to the medication already. (Guess again, Joe)

Slept pretty good last night (Wednesday night). Woke up, sat in the kitchen and felt myself progressively feeling like crap and I didn't eat, drink water, I did nothing. Felt sick to my stomach and in a slight daze right after getting out of bed. Hour later had a scrambled egg sandwich before I ate the first half of the 3rd pill. Swallowed that first half of the 3rd pill / went outside to do chores and I literally got sick to my stomach and threw up. My head was pounding. The big time crap feeling lasted a good 3 hours after throwing up.

(Time right now is 6:14pm - feeling alright, (Unlike this morning) have a little extra energy, head feels a bit fuzzy but not all that bad)

Here are my questions :

Note : I am aware you're not supposed to break, chew, or crush the pills.

1) If this is happening to me eating half a pill, what kind of mind blowing side effects will I experience when my doctor gives me the go-ahead to begin the 3 pills at once treatment ? (It be Tuesday the 13th when I go back for a progress visit)

2) When is the best time to take all 3 pills ? - Right after breakfast / Lunch or Dinner ?

3) Will this be a rough ride (Like this morning) last the entire 8 weeks of treatment ?

4) Will the worse of the side effect of taking all 3 pills be like what I experienced this morning or will it be 5 times as worse figuring I am eating a additional 2 1/2 more pills ?

Here's a pic I just took of my first 4 weeks of Mavyret treatment pills.

Tig · Admin

Hi Joe,

Welcome to the forum! It sounds like you were lucky to survive that car accident. We have had so many members telling us that they were exposed to HCV the same way, contaminated blood. I think that may be one of the hardest things to get your mind around, why. There are so many more that still aren’t aware of it. It‘s good to share these stories and get the word out about testing.

Do you have any idea when you’ll be starting? Mavyret is one of the latest and greatest DAA’s. An 8 week course will go by quickly. I’m continually amazed at how short the new treatment lengths are now, not to mention their effectiveness. You’re going to do well.

There are some links in my signature line that explain, among other things, how you can set up your signature. When you do that, it provides us with some history and information on your journey. It helps us when replying to your posts. After a short time, your introduction gets buried and people benefit from the signature info. You can see what most of us have added to ours and go from there.

We have a lot of friendly, knowledgeable people here. If you have any questions, don’t hesitate to ask. I’m glad you’re here. Now get ready to slay that Dragon!

Observer · Guru

Welcome Joe,

glad youre getting treatment, considering you have had HCV for 40 years stage 2 is actually not too bad.

Did you have symptoms of liver disease or did your physician become alerted when reviewing standard blood tests? Liver function tests can be pretty indicative of the need for further testing.

Anyhoo, keep track of all your bloodwork.. you should be able to get copies of the lab tests.

and plan to drink a goodly amount of water to help your body flush the dying/dead virus and to keep from getting any side effects from the DAA...(direct acting antiviral)

When do you start?

polosilver · Senior Member

Hi Joe -

Welcome to HepC Friends. This is a great place for support, to get questions answered etc. There is a lot of knowledge within this forum. I was successfully treated with Harvoni for HepC a year ago and am doing great a year later. Wish you the best! If you have questions ask, and there are several folks here that can help.

One thing you will read and hear on this forum is to drink lots of water during treatment...Tig or one of the gurus will explain more...

ps

SeeTheLight · Senior Member

Hi Joe,

So glad you are soon starting treatment. We are so lucky to be being treatment with these wonderful DAA's with such a high success rate. You have found a great place to share your journey. Look forward to following your journey.

5-1-18 · Guru

hi joe ,

welcome to the forum and to treatment. i'm so happy for you

5

joe56 · Newbie

My name is Joe, from the great state of New Jersey and I've known I had HepC goin on 40 years now. I was 16 years old, on my bicycle riding with friends when I was struck by a car. (Really bad wreck - almost died - last rights read to me and all)

Obviously blood I was given wasn't screened back in 1978 so I was given tainted blood. I never thought twice about the HepC as I am currently 56 years of age.

Recently began seeing a personal physician (after a 30 year absence) who referred me to infectious disease doctor after my new primary doctor's blood test verified that I am indeed HepC positive.

Went through additional blood tests (No Hep A or B) then went for a liver ultrasound. My infectious disease doctor said from the tests that I am in the late stages of Stage 2 going on to Stage 3 without Cirrhosis.

Was approved for Mavyret (8 weeks of treatment) ...

Hep C Discussion Forum

Legal Disclaimer: