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Welcome to the Hep Forums, a round-the-clock discussion area for people who have Fatty Liver Disease, Hepatitis B, C or a co-infection, their friends and family and others with questions about hepatitis and liver health. Check in frequently to read what others have to say, post your comments, and hopefully learn more about how you can reach your own health goals.

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Recent Posts

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21
On Hepatitis C Treatment / Re: Third time is the charm? Starting 12 weeks of Vosevi
« Last post by jberlin on January 31, 2024, 12:52:06 pm »
Dear Annie,

Thank goodness our livers are tough organs, and with a good diet will heal. I assume your Doc is just being extra careful, and why not?

Sorry about the fatigue, all you can do is keep eating, hydrating and resting - time is flying by and this needs to be, must be!, the end of your Hep C misadventure!

It is bittersweet to me that there is so little traffic on this forum now, but it is clearly because of the diminished pain and suffering of Hep C, and the wonders of scientific advancement. However, as you and I document this, many will read in the future and benefit from this diary - so please keep commenting and keep being that strong person it is clear you are!

Another day done!

Cheers,
jack
22
On Hepatitis C Treatment / Re: Third time is the charm? Starting 12 weeks of Vosevi
« Last post by opaleye on January 30, 2024, 09:30:01 pm »
Hi Jack,

No apologies necessary! I didn't log in for a while either. We had family visiting for a few days and then I was catching up with work.

There also wasn't too much to report. I did pass the "halfway" point though -- 6 weeks completed, yay!! Almost done with week 7 now. My spreadsheet is color-coded so each week is a different highlight color. I'll take any positive feedback I can get!

Tomorrow I go to the hepatologist's office. First for a FibroScan and then a follow up visit. I'm a bit perplexed why the FibroScan. They used to do that at my annual visits but then after a liver biopsy I was told the FibroScan wasn't needed. Hmm.

The only other thing to report is that I've had a few episodes of deep fatigue lately. Not just tired, but debilitating fatigue that feels like I'm swimming through mud. Fortunately it isn't all day every day. It is enough though that I am now taking some family medical leave to shorten my work day.

Thanks again for sharing your journey and your words of encouragement! You have walked the walk so you know what it's like to travel down this road. You also know how important it is to have the support of this forum, and I so appreciate you joining me on my journey to slay this dragon.

Cheers,
Annie
23
On Hepatitis C Treatment / Re: Third time is the charm? Starting 12 weeks of Vosevi
« Last post by jberlin on January 24, 2024, 08:47:59 pm »
Annie,

Sorry for being AWOL on you. Was actually out of touch traveling with the paying job for a few days.

Great news on the bloodwork. This means a lot, because your body is really tolerating the treatment. I remember having to get white and red blood booster injections the first go round, and how bad the white one hurt. My second treatment I tolerated so much better. And finally. it seems you are as well.

You are doing amazing and are amazing!

I am holding my breath for your quant Hep C count. I want 'not detected!' Listen to music, it sooths the soul - whatever you enjoy - with a dose of water with electrolytes.

"Stowin' away the time, Are you gatherin' up the tears?"

No more crying soon!

Hope to get an update soon!

jack
24
On Hepatitis C Treatment / Re: Third time is the charm? Starting 12 weeks of Vosevi
« Last post by opaleye on January 11, 2024, 11:15:02 pm »
Hi Jack,

I can't tell you how much your support means to me. A thousand thanks for taking this journey with me!

Excellent news with the labs. Everything NORMAL except platelets, and that count has improved. I can't remember when I only had one value out of range with these tests!

CBC

RBC: 5.21 NORMAL (down from 5.61 HIGH on 11/17/2023)
Hemoglobin: 15.3 NORMAL (down from 16.4 HIGH on 11/17/2023)
Hematocrit: 44.8 NORMAL (down from  48.8 HIGH on 11/17/2023)
Platelets: 141 LOW (up from 133 LOW on 11/17/2023)

CMP

Alkaline Phosphatase: 103 NORMAL (down from 108 NORMAL 12/26/2023)
AST (SGOT): 29 NORMAL (up from 26 NORMAL on 2/26/2023)
ALT (SGPT): 22 NORMAL (up from 19 NORMAL on 12/26/2023)

Thanks for your encouragement to keep hydrating. I do have some electrolyte powder and that has been helping with the headaches. Perhaps that is something I should do every day as a preventative.

Sigh. At one time I called myself a musician, have the Bachelors of Music degree and everything. And yes, I did have a Steely Dan songbook and would plunk out Do It Again on the keys. Probably why that lyric jumped into my head. ;D

Cheers,
Annie
25
On Hepatitis C Treatment / Re: Third time is the charm? Starting 12 weeks of Vosevi
« Last post by jberlin on January 11, 2024, 11:03:37 am »
Glad you are a Steely Dan fan - Keep singing! Keep hydrating. Make sure to drink something with electrolytes in it, like sugar free gatorade, or get a powder to mix in. A lot of water can flush your system too much, also causing issues.

May the side-effects subside and rest come more easily. This is my wish for you now as you race to the finish line.

Looking forward to seeing good news from your bloodwork and your treatment.

jack
26
On Hepatitis C Treatment / Re: Third time is the charm? Starting 12 weeks of Vosevi
« Last post by opaleye on January 10, 2024, 08:49:52 pm »
Happy New Year, Jack!

Thanks again for your encouragement. I just can't imagine going through 48 weeks of treatment only to get the bad news that it didn't work. Kudos to you for getting back, Jack, and doing it again -- and it being successful with the second attempt! :)

So, a milestone today. Just finished my first bottle of Vosevi. Woo hoo! Only 56 more pills to go!

At this point my main side effects are crazy loud tinnitus, headaches, and lately more deep fatigue and brain fog. I'm trying to drink more water and get more sleep but it's been a challenge. In the evenings I have time for a cup of hot tea (usually peppermint but sometimes decaf chai) and that does down easy. Even before the treatment I just drank filtered water, but just not this much!

Today, thanks to my primary care doctor, I got a blood draw for Complete Blood Count (CBC) and Comprehensive Metabolic Panel (CMP). I will post the results when they come in.

Cheers,
Annie
27
On Hepatitis C Treatment / Re: Third time is the charm? Starting 12 weeks of Vosevi
« Last post by jberlin on December 31, 2023, 10:41:17 am »
Annie,

2024 is going to be the year!

Like you, I would want to know the viral load at or about 6 weeks. You (and your Drs and the Forum) need to know how the treatment is working.

In July 2005 (back then they waited 6 months before post treatment testing) when I was told I had relapsed and my Hep C viral load was higher than before I started treatment, I was crushed. I was convinced the battle was won, which was foolish and naïve of me. 48 weeks of shots, hair loss and a weight drop of 30 pounds (interferon / Ribavirin was not a kind treatment), all for naught. After a couple of years I decided to retry, as treatments were improving, but Duke Hepatologists told me to wait as they had very promising drug trials underway (which turned out to be Incivek (telaprevir)), which is what I received for 24 weeks in 2012 (along with Ribavirin).

The point is that you fight on because you must. Not sure why you drew that rare short straw, but it will make beating Hep C even more sweet for you. And I believe that good news comes in 2024!  :)

Your posts are going to help so many others, so again, thanks for the updates and keep them coming.

Happy New Year!

jack
28
On Hepatitis C Treatment / Re: Third time is the charm? Starting 12 weeks of Vosevi
« Last post by opaleye on December 30, 2023, 03:58:22 pm »
Thanks again for your encouragement! I have to admit I feel a bit like the last kid to be picked for the team, but I'm sure there are others out there who are still waiting for that final SVR.

A month before starting Vosevi my viral load was 1,824,750 with liver enzymes (all high) at ALP = 141, AST = 91, ALT = 75. I was tested for CMP last week and saw encouraging all normal ALP = 108, AST = 26, ALT = 19. Woo hoo!

What's weird (to me) is that this time around my hepatologist doesn't want to check the viral load again until EOT. Huh? I couldn't imagine going through a 12 week treatment without some sort of feedback so I asked my primary care physician to run CBC and CMP after month 1 and month 2.

Thanks for your question about viral loads with the other treatments. That nudged me to organize my lab results and record HVC-specific tests. Here are the stats. Hoping this is helpful to others.

Harvoni (8 weeks treatment)

2014/11/4 -- 2,812,380 -- Before Harvoni
2015/04/2 -- <15 detected -- Harvoni 1 mo
2015/04/30 -- <15 detected -- Harvoni 2 mo EOT
2015/08/13 -- 670,790 -- Post-Harvoni 7.5 weeks (This is when I balled my eyes out)

Mavyret (16 weeks treatment but ended early)

2018/02/22 -- 2,450,000 -- Before Mavyret
2018/11/18 -- Not detected -- Mavyret 1 mo
2019/01/07 -- 90 -- Mavyret EOT 11.5 weeks (stopped due detectable VL and symptomatic bradycardia)
2019/05/15 -- 1,320,000 -- Post-Mavyret 4 mo

I appreciate you sharing the victories along your journey. Kudos to your perseverance in slaying this Dragon!

Happy New Year :)

Annie
29
On Hepatitis C Treatment / Re: Third time is the charm? Starting 12 weeks of Vosevi
« Last post by jberlin on December 28, 2023, 01:57:33 pm »
You got this... Your Hep C history is a novel certainly, and not a short story.

What was your starting Hep C viral load and when will you have your 1st (post treatment start) quantitative Hep C test? Hoping it quickly goes to undetectable. Did your viral load quickly disappear with the other treatments? I remember crying my eyes out when I got news 6 weeks into my 2nd treatment that I was undetectable, as that never happened on the first treatment. (They considered stopping treatment as viral load reduced so slowly - but back then I had less than a 50% chance anyway.)

2024 - Your year of 3 strikes and the Hep C goes down swinging after two foul balls!

Most importantly - stay positive and the time will fly by. Thanks for keeping us informed and helping others with their own dragon fights!

Happy New Year!
jack
30
On Hepatitis C Treatment / Re: Third time is the charm? Starting 12 weeks of Vosevi
« Last post by opaleye on December 27, 2023, 11:06:34 pm »
Hello Jack,

Thanks so much for jumping on this train with me! I really appreciate your kind words and encouragement :)

Week 2 was completed this evening. Woo hoo! Being the nerd I am, I created a spreadsheet that automatically calculates how many days left. Only 70 days to go!

I have had some side effects, most notable headaches and tinnitus, but the headaches are tolerable or manageable with NAIDS and triptans (which have been prescribed for migraines).

The spreadsheet also calculates how much water I'm drinking. Getting to a gallon a day has been a challenge but that is my goal. Most days I add Liquid IV for electrolytes to one of my 20 oz servings (the size of my water bottle). With Harvoni I drank the recommended amount of water but that got my electrolytes out of balance. I'm careful though to take any magnesium opposite the Vosevi dose. Fours hours should be sufficient but I pad that a bit.

I'm doing everything I can for success this time. The only supplements I'm taking are B-2, lysine, and probiotics. I found a resource for Vosevi drug interactions that is much more comprehensive than what the company provides. (https://www.medbroadcast.com/drug/getdrug/vosevi)

Another source mentioned that there could be interactions between Vosevi and ubrogepant (Ubrelvy), which I use on occasion. I spoke to the pharmacist providing the Vosevi and they said that the interaction was just "possible" and that if anything it would make the ubrogepant more active but not alter the effectiveness of Vosevi. I also mentioned another CGRP medication I take, Vyepti (eptinezumab-jjmr), which is an infusion every three months. The pharmacist could not find any contraindications with that medication.

I'm sharing that research in case other migraine sufferers might be reading this :)

There also has been some "intestinal disturbance" and insomnia. Right now I am on vacation so I'm able to sleep in if need be but I'm back to work on Jan. 3; fortunately though working from home. I applied for intermittent Family Medical Leave in case a reduced schedule is needed. I have read that the last few weeks can get rough.

Any other t's to cross or I'd to dot?

Thanks again for your support, and Happy New Year!

annie
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