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Post Info TOPIC: Mavyret and Me
Tig


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RE: Mavyret and Me
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It really does take a lot out of you, Shemp. Imagine the changes going on inside you right now. These drugs zap something that until recently wasn't routinely zappable. Even the strong chemo therapy agents were laughed off more than half the time and it came back with a vengeance. Keeping that in mind, these drugs are essentially doing the exact same thing, just twice as effectively and thank God, you're not suffering for an entire year with those old standards of care and the damage they caused all by themselves. That doesn't mean you're not experiencing your own time in the trenches, none of this is easy and we're all here to offer as much support as possible. I wish I had some better advice to help you on those days when you're under the Dragon, instead of on top of it. I do know that these days will get better and I want to say that should happen sooner than later. Just don't expect to feel like a 20 year old going into October. I'm going to put the order in, but sometimes Pony Express isn't part of Amazon Prime service. You'd think for the price of AP and these drugs, there would be some magic included in regards to the side effects. The magic is in the medication though, I can assure you of that. They're like a new Kenworth on steroids and rocket fuel. All you gotta do right now is steer, do your 12 hours and hit the rest stop. Fuel, water and rest and you'll arrive on time and in good shape. Mark my words... wink



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Tig,

Thanks for the advice.I kinda figured it flows like the virus.Peaks and valleys.That is a great album by the way,I'll have to dust it off.And those days DEFINED getting in trouble.Thanks again



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62 yo male GT 1b/2 ALT 60 AST 51 V/L 985,000 Fibro A2 F 3/4 began 12 wks Mavyret 9/13/2018

6 wk labs ALT 12 AST 18 V/L NOT DETECTED EOT 12/05/2018 NOT DETECTED

Tig


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Are you keeping any kind of a journal? I used to note everything I did, food, fluids, sleep, you name it, it got entered. Those days or series of days† when I felt exceptionally worse, I could often see a pattern. Of course, there are going to be days during the first two to three weeks, when you just feel like whale poo. Ebbs and Flows like the tides. Some days you're the Dog and others you're the fire hydrant, know what I mean?

Sleep is very important, try to follow a routine and don't stray from it. At least it's one more thing you can be sure of. Force some fluids, eat something nourishing and find a chair to kick back in and watch something easy going. Many folks have great success with music. One of my favorite albums to zone out with is Pink Floyd's Dark Side of the Moon. If you have a set of headphones and haven't listened to it for awhile, it'll take you right back into the 70's. Back to a time when we thought we had the world by it's tail. Remember those bullet proof days? They're probably what got me into trouble, lol!

Try to relax buddy, I guarantee you, there are better days ahead... wink



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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So,today is day12 of my 84 day Mavret journey.Days 1 through 10 were a mix of fatigue stress and nausea.I highly recommend Tig's home made ginger ale .It really does help with the nausea.Day 11 was like a blessing,I actually felt pretty darn good.Even had a little pep in my step.Stayed up to watch Monday night football.(go steelers)Had a lot of problems going to sleep and I was up after 5 hours.Today,day 12 I feel absolutely horrible.I don't know if it's from lack of sleep but it's the worst I've felt since I started.I know the side effects come and go but this really took me by surprise.I thought that after a while they kind of level out.I didn't do anything different as far as meds go.Anyone else on mavyret have any issue with this?It won't change my mind about treatment.Maybe someone further along can enlighten me.Any help would be much appreciated.



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62 yo male GT 1b/2 ALT 60 AST 51 V/L 985,000 Fibro A2 F 3/4 began 12 wks Mavyret 9/13/2018

6 wk labs ALT 12 AST 18 V/L NOT DETECTED EOT 12/05/2018 NOT DETECTED

Tig


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Outstanding! So glad it gave you some relief



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Tig,

Just wanted to let you know I brewed up a batch of ginger ale and it works really well.Nausea gone in a few minutes.For anybody that wants to try this a word of advice.Less is more.My mixture was a little off the first time and it was INTENSE!.Thanks Tig



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62 yo male GT 1b/2 ALT 60 AST 51 V/L 985,000 Fibro A2 F 3/4 began 12 wks Mavyret 9/13/2018

6 wk labs ALT 12 AST 18 V/L NOT DETECTED EOT 12/05/2018 NOT DETECTED



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Hi Canuck,

Thanks for the 2 cents.I think for me a lot of the anxiety came from starting the treatment and wanting it to be over .I do that to myself alot.Acceptance of the situation helped me calm down.I did try the Ativan and to be honest,it didn't do much for me.The stress part comes from being self employed.No work=no $$$ coming to the house.My wife of 35 years is quite understanding and happy about my treatment,but I know she worries.She was my co-driver for 12 years so she knows life on the road is stressful.We're learning to cope with it.As far as my Dr. goes,he really needs to brush up on theatment.The first script he wrote me for Mavyret said Take 1 pill 3 times a day with food.REALLY? I thought my insurance company would just chuckle and say NO.But once again I pointed out his mistake and prevailed.The good part is I can tell him I want every test known to man and he'll agree,so I will get a full battery of bloodwork at 6 weeks and especially EOT.Thank you and everyone on this forum for checking in and checking up.i know a lot of you are (cured) but you still hang around to advise us newbies.That says volumes about the kind of people you are.Thanks for the kind words and the encouragement.



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62 yo male GT 1b/2 ALT 60 AST 51 V/L 985,000 Fibro A2 F 3/4 began 12 wks Mavyret 9/13/2018

6 wk labs ALT 12 AST 18 V/L NOT DETECTED EOT 12/05/2018 NOT DETECTED



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Hi Shemp

Good update - can I throw in my 2 cents?

So, live and learn ... the experience you had with work/heat, and, how you felt (as you said) was a lesson, and not just for you, but for all of us, it's very good feedback, important to know and share and especially for those of us who have not done treatment yet or are just starting, to see what you and others experience and why - what can create or prevent bad feelings.

We can take an experimental test approach and see how we do and react, or we can be much more cautious.

Stress and ativan, what did you end up deciding? I am betting that maybe you are a little less stressed now? and that you were reluctant to try the ativan and so didn't? I never did know if it was day and/ or night stress, but if it was stress affecting your seep, did you ever try the ativan at bedtime, just once to see if it helped you? Perhaps especially knowing when you would not be working or driving the next day?†Just wondering how all this part is going.†

If a big change of pace (such as NOT working for a while) would normally be something that would be stressful to you ... then that too you will have to find ways to deal with. Negatives can be evoked by "working" OR by "not being able to work" when you are on treatment!

I think you are finding your way.

To me, it was a little unusual that your doc chose week 6 (out of your 12 week course) for a "VL only" and was going to leave out the LFT's. So many in North America have and do get VL's and LFT's at week 4. Re: other differing timings for LFT's ... one example could be with folks taking ZEP - some of those folks might, instead of getting LFT's at 4 weeks, have their LFT draw delayed to occur at week 8 or week 12, when on 12 or 16 week courses of ZEP (respectively). But regardless of the exact timing, their LFT's WILL still be drawn and done during treatment.

So, I agree with you for requesting a LFT be done along with the VL he planned to do at your week 6.

Further to this, i agree with Tig, I would also prefer to see an additional LFT and VL (both) done at EOT. Just cuz.

You seem a smart cookie, with a good head on your shoulders, nice you have support at your home base - I am betting you are going cope with this time of treatment just fine.†smile†C.



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

(SEE UPDATES IN BIO)



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Tig,

Thanks for the info.I'm still at home and I know that my better half has some ginger root in the ol' fridge.Think I'll whip up a batch.Thanks again



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62 yo male GT 1b/2 ALT 60 AST 51 V/L 985,000 Fibro A2 F 3/4 began 12 wks Mavyret 9/13/2018

6 wk labs ALT 12 AST 18 V/L NOT DETECTED EOT 12/05/2018 NOT DETECTED

Tig


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Shemp,

I just thought about something and for me, thatís something special! With your nausea in mind, I want to give you a recipe that has helped many of our fellow Warriors here. This homemade ginger ale is very good and very effective. As an old trucker, I know you have more skills than busting gears, so whip out your Coleman stove and cook up a batch. I know you must have one in your road kit!

Seriously, itís good stuff and if you take a look at our Nutrition section, the Green Smoothie Ranch, has some very nutritious ideas. Remember, treat yourself like royalty while on treatment!

Homemade Ginger Ale



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Thanks Hoodie.

dictionary says fatigue is†extreme tiredness, typically resulting from mental or physical exertion or illness. I say if you are in treatment and trying to work full time,it's like trying to build the great pyramid....ALONE! But there's lots and lots of blue sky at the end.Hang in there.



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62 yo male GT 1b/2 ALT 60 AST 51 V/L 985,000 Fibro A2 F 3/4 began 12 wks Mavyret 9/13/2018

6 wk labs ALT 12 AST 18 V/L NOT DETECTED EOT 12/05/2018 NOT DETECTED



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Thanks Tig,many people find it hard to change the way they live their lives.I learned a valuable lesson.During treatment I'm certainly not the old me.I know it will come in time but,for now I need to cool it.



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62 yo male GT 1b/2 ALT 60 AST 51 V/L 985,000 Fibro A2 F 3/4 began 12 wks Mavyret 9/13/2018

6 wk labs ALT 12 AST 18 V/L NOT DETECTED EOT 12/05/2018 NOT DETECTED

Tig


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Hey Shemp,

Itís very important to take it easy during the first few weeks. Your body is adjusting to some very powerful antiviral medication. I try to stress to people, even though these drugs have a low side effects profile, just try and consider what they are doing to you. Destroying a killer virus, that until recent years was nearly impossible to get rid of. Then along comes the systemic poisons, Interferon, Ribavirin and the fun of either Incivek or Victrelis. They made us deathly sick, felt like it anyway and really forced us through no choice of our own, to do as little as possible. I remember having to save strength to get up and use the bathroom, get a bite to eat, when you could hold it down and then make it back to my chair. It wouldíve been physically impossible for me to work at the time.

I want all of you to realize that while you may feel okay, with some bad days thrown in there, your body is still fighting the same battle mine was. It still requires the right things to click, to make treatment easier and successful. Stay out of the heat, eat a balanced diet, stay active, but donít overdo it. Above all else, hydrate, add some electrolytes and take it easy.

Shemp, good for you, the liver panel is an important test at that stage of treatment. I would throw in a CBC, too. Week 6 is as good as week 4 and will be a good indicator of your progress. I would ask for another at EOT. Thatís a great way to finish up the 12 weeks of hard work. YouĎll be done in no time, but make the next 11 weeks a time to treat your body like a shrine. Itíll pay off all the way through treatment and the rest of your life.

I moved this thread into the On Treatment section. You graduated from New Member status!



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

Hep C FAQ† †Lab Ref. RangesHCV Resistance

Signature Line Set Up/Abbreviations† †Payment Assistance



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Short on time so Ill keep this brief: hang in there champ and thank you for your update. Ive got a lot of friends who dont really understand how hard this is. Some friends who even went through treatment and had an easier time. So its really hard explaining why Ive got so much fatigue I finally narrowed it down to the fact that Im still working a full-time job and when they were on treatment they were completely off work, however I have a lot of respect for those of us who went before on the Stone Age treatments. Peace out TTYL



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F, 51, GT3, HCV since 1989, no alcohol since 1999, Fibrosis score F0-1 (.36), VL 216,000, ALT 23, AST 26, Epclusa SOT 7/26/18 EOT 10/18/18. Thank you God.†



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Hi everyone,

I started my treatment 09/13/18.The first seven days weren't to bad.I had some nausea,slight headache,and fatigue.All to be expected.Yesterday day 8,I decided to big rig to my office(about 75 miles south of my house) to remove packing I had left over from a delivery I had done several weeks ago.The trip down was ok but physical labor in 95 degree heat really took it out of me.Now I'm in pretty good shape for an old guy,worked hard my whole life.I was not ready for the side effects to double or triple.I drank plenty of water,took a lot of breaks,but in the end the heat won.I finished up and started the drive home.I felt like I might as well be driving to the moon.I'm ok today but I guess a word of caution to folks taking Mavyret.Try to limit your physical activity especially in the heat.You may think you feel pretty good but that changes quickly.Physically you are not your old self.Hydrate,I know you've heard it before but it is vitally important. My doctor put me on 12 week treatment so he dosn't want bloodwork until week 6.I guess I don't get the 4 week good news.The worst part is he wanted viral load only,I had to argue that I wanted a complete liver panel as well.He finally gave in but I don't think I should have to tell him his job.He's not paying for it.That's it for now.I'll keep you posted.



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62 yo male GT 1b/2 ALT 60 AST 51 V/L 985,000 Fibro A2 F 3/4 began 12 wks Mavyret 9/13/2018

6 wk labs ALT 12 AST 18 V/L NOT DETECTED EOT 12/05/2018 NOT DETECTED

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