Author Topic: Third time is the charm? Starting 12 weeks of Vosevi (Read 22571 times)

opaleye · « **on:** December 14, 2023, 07:55:17 pm »

Hello All,

It's been quite a while since I've posted here. LynnK might remember me

So good to see this forum is still up and running. Thank you moderators and members for traveling this journey with us all together.

I failed Havoni and then Mavyret. After five years of recovering from those disappointments, and being primary caregiver to my husband during surgeries due to his diabetes (resulting in a BKA last year), I finally have mustered the strength to, as Steely Dan would say, "go back, Jack, do it again."

Took my first Vosevi tablet a few hours ago. I can't believe how emotional I am. I keep reading the stories on this forum and other forums of Post-Vosevi SVR.... and I feel Hope again.

Time to Slay the Dragon once and for all!

jberlin · « **Reply #1 on:** December 22, 2023, 09:27:39 am »

Thanks so much for posting your struggles here, it will help so many others over time. Hep C treatments have gotten so much more effective over 30 years (20% to 90+%), shorter and easier (a year of shots, weight and hair loss - to 12 weeks of pills) - but, as your case points out, not 100% effective.

But what else your story points out is bravery and determinedness - which is as important as the drugs! Also, the need for community during this process. We are here for you, as this forum was here for me so long ago when I relapsed from my first 48 week treatment.

Please update us often along these weeks of your current journey, and certainly after you get your 90 day post treatment viral count of undetectable and you know the dragon is slayed. Third time will be the charm I am sure!

This "Jack" repeats for all relapsers "Go back and do it again!"

Happy New Year!

jack

opaleye · « **Reply #2 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

jberlin · « **Reply #3 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

opaleye · « **Reply #4 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

jberlin · « **Reply #5 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

opaleye · « **Reply #6 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

jberlin · « **Reply #7 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

opaleye · « **Reply #8 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.

Cheers,
Annie

jberlin · « **Reply #9 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

opaleye · « **Reply #10 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

jberlin · « **Reply #11 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

opaleye · « **Reply #12 on:** February 07, 2024, 09:50:49 pm »

Hello Jack!

Thanks again for being my seat mate on this journey. As frustrating it has been to be the straggler who didn't respond to the new treatments, I am so happy for those who did and are now cured.

Another milestone. Finished the second bottle today. Only 28 days to go!

Other than that, nothing much to report. Still struggling with deep fatigue and some "intestinal disturbance" more often, but it is tolerable. Having the extra time to sleep with working shorter days helps. I'm even getting "Good job meeting your sleep goal" praise from my smart watch

That's all for now. Thanks again for being here!

Cheers,
Annie

jberlin · « **Reply #13 on:** February 08, 2024, 09:05:04 am »

Annie,

Great to hear from you and to hear things continue to go well, and you continue to tolerate the treatment. Time continues to fly by - often too fast, but in this case let it fly! You are rounding the last turn and soon will be in the home stretch!

Have you seen a quant virus count yet? Wondering how the Vosevi is doing with 'whack a virus mole'? I am betting you are undetectable - let's get there and stay there.

Less than a month to go, so give us an update soon, and often if you can. Stay strong (and rest and hydrate!)

Hugs,
jack

opaleye · « **Reply #14 on:** February 15, 2024, 11:46:14 pm »

Hello Jack!

Started week 9 today! Only 20 pills to go! The incline has gotten a bit steeper lately. Fatigue is deeper, brain is foggier, and there were numerous days of digestive distress this past week, but the side effects remain tolerable and I am determined to get to The Destination.

Of course The Ultimate Destination is being Not Detected at three months post-treatment. Fingers, toes, arms, and legs crossed!

I haven't had any more testing. I thought my primary care doctor was going to check CBC and CMP after the second month, but I haven't seen that lab slip in the mail yet. Yeah, I know I could've called the office to nudge them, but it's getting so close to the end though that I might as well wait for the HVC Quant order from the hepatologist's PA. That will also include CBC and CMP.

Funny, I did see the hepatologist himself last week. He did an endoscopy for my husband and chatted with me afterwards. He wondered (again) that if the insurance company had ponied up for a 12 week treatment instead of only covering 8 weeks, then maybe that would have been my cure. If they had covered another 4 weeks then perhaps there wouldn't have been a need for me to do a second and now third treatment.

Just tossing that out in case other people are wondering if they should lobby their insurance company for a longer course of treatment.

Thanks again for your encouragement and positive vibes!!

Cheers,
Annie

jberlin · « **Reply #15 on:** February 16, 2024, 11:59:32 am »

Annie,

Now 19 pills! Awesome!

Sorta surprised there wasn't a midway count to see the drop in the viral load - but let's assume it undetectable - because it was! I remember the 3 month post treatment wait (my 1st treatment in 2004-5 they waited 6 months) - it was good not to be sick from the meds any longer, but still a bit anxious until you know for sure. Sometime in June will be the good news, and you will let us all know pronto!

Your point about pushing the insurance companies, and pushing the Doctors to also push on your behalf, is an important one. By my second treatment I knew more about things than my current GI, so I actually found a local Hepatologist at Tampa General to manage my treatment. Made a world of difference that they were experts. Folks out there - make sure your doctor is experienced in Hep C treatment!

Home stretch, so please keep going strong through the finish line, and update us with any news or thoughts.

Sending good vibes your way!

Best wishes,
jack

opaleye · « **Reply #16 on:** February 25, 2024, 12:33:07 am »

Hi Jack!

Keep those good vibes coming!

Once again, a thousand thanks for being there. Sorry I haven't replied earlier. Just so tired, well more than tired-- deep fatigue that feels like I'm on an alien planet with a stronger gravity field. And work has been challenging. A reduced schedule hasn't really meant reduced responsibilities. I've set a few projects aside at least.

But here's the good news! I'm in the final home stretch, only 11 pills to go!!! And I did end up contacting my primary doc about the CBC and CMP labs. Everything was in normal ranges, except platelets that were up 7 points to just 2 points out of range. Not did the liver enzymes stay in the normal ranges, but AST is down from 29 to 20 and ALT is down from 22 to 16. Further indication that Vosevi is doing the trick!

I'm starting to think about life after treatment. I've put off some medical procedures/surgeries, and I'm wondering if I should continue to hold them off until 3 months post-treatment. Do you know anything about that? Specifically I'm scheduled for corticosteroid shots a few weeks after EOT. Should I worry about that suppressing my immune system? I'll ask my hepatologist's PA, but thought I would see if there was any Collective Wisdom from the Forum.

So glad you found a good hepatologist at Tampa General. It really makes a difference when you trust your specialist doctor. I have great respect for my hepatologist of a dozen years. He is buddies with an HVC researcher at Shands so he had insight into the success of early DDA trials.

Take care and thanks again for sharing your stories!

Annie

jberlin · « **Reply #17 on:** February 25, 2024, 12:08:22 pm »

Awesome News – single digits tomorrow! Sending lots more good vibes! The countdown to Done! Rest and recovery will come next, and not soon enough, but soon.

I am not a MD, so grains of salt please, but I would certainly make sure to be recovered – rest, strength, mental, job, etc before hopping into another major medical procedure. I also think a corticosteroid injection after a few weeks should be fine, and I assume helpful for discomfort. This advice is worth every penny you paid for it!

A doctor that you can trust, and staff that will take the time to advise / answer questions is really important in a multi-month treatment such as this. Shands is top-notch so I assume you are a few hours north of me. Spring and your improved health will both come soon!

Update us when you cross the pill finish line!
jack

opaleye · « **Reply #18 on:** March 06, 2024, 09:16:05 pm »

Hello Jack!

Woo hoo! Just crossed the finish line, took my last of 84 pills this evening! It's a welcome milestone, but the final destination is three months from now when I will be (fingers and toes crossed) declared cured.

My hepatologist's nurse assured me that the End of Treatment lap order is in the mail. That's the next hurdle, but I do believe Vosevi's triple-pronged attack has done the trick.

I am so glad this is over. The fatigue has only gotten deeper and I struggle to get through my day. I have read that some people continue to have side effects after the end of treatment. I am hopeful that another week or so will clear those chemicals out of my system.

I appreciate your feedback on getting some pain relief for my aching joints. I will wait for the ulnar nerve surgery until after the SVR is confirmed though.

And I am so very grateful for your support, encouragement, and humor over these last 12 weeks!! May the positive vibes you shared return to you ten-fold!

Best of everything,
Annie

P.S. I'll jump on the post-treatment board once there are EOT lab results to report.

jberlin · « **Reply #19 on:** March 07, 2024, 09:19:46 am »

Annie,

Woo hoo is right! Today you woke up with no pills to take, and now the body will start to strengthen and recover! I just know what a wonderful feeling that is for you.

The fatigue will recede with rest and balanced nutrition. As soon as you can, get out and walk - perhaps easing a bit more distance each week. I had routes around my neighborhood I had measured with one of those cell phone stepper apps that went from a 1/2 mile, 1, 2, 3 mile routes. It was a good habit that I developed and now I still try to do 2-3 miles every day (it's usually 5 days a week actually). I put on headphones and listened to podcasts, or music, or just blabbed on the phone. The point is to re-establish as quickly as you can a different mindset to get you out of the tough slog lifestyle you are now rid of.

We cannot wait to hear your 90 day post treatment lab results, and of course how much better you are feeling holistically - mental & physical.

All the best wishes!

jack

opaleye · « **Reply #20 on:** March 14, 2024, 08:26:31 am »

Thanks for the excellent advice, Jack!

Yes, guilty as charged, my step count has been lower these past three months. I appreciate your encourage to get out and walk.

Jumping over to the post-treatment board now to share the EOT labs.

Cheers,
Annie

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Author Topic: Third time is the charm? Starting 12 weeks of Vosevi (Read 22571 times)