Hep C Discussion Forum

Sticker,

You sure have the right attitude.  That, and the water will help you plenty. With that much water intake come lots of peeing, right?  

Given that you live in the heat and are sweating it out too, you might consider adding a bit of electrolytes.  I used a powder and added it over the day's intake.  There are lots of electrolyte drinks at any convenience store, too, but many are mostly salt only.  You don't need to be confusing electrolyte imbalance with meds.

I'm so glad you've started putting an end to all of this.  You'll do great.

Cheddy

Congrats! Whooo! Hooo! on your way to the zero line.

Take it easy in the heat, I was on treatment during the hottest months of summer last year, it seemed to really sap my energy more than before, not only hydrate but chill thy head with a wet towel or whatever. 

ok ...will be following your progress, best wishes!, Iris

so awesome that you got that first pill on the job , it's starting the magic already

Outstanding! You're definitely on the way to killing your beast. Just stay compliant and follow that hydration protocol, it really makes it go easier and without the headaches. If you start to feel a headache coming on, the first thing you should do is drink more water. That often resolves it. 

The 4 week testing is a good idea. I like that interval. It provides a quick view of whats happening in there. I think you'll be surprised by the changes in such a short period. ALT and AST usually drop significantly and most witness a dramatic viral load drop. Some are undected. There seems to be no set rule for when that happens, but we do know SVR 12 is in the 98+/-%. We have great rates of success here.

Keep us in the loop and good luck!

Sorry Tig,

Been away from the forum for a bit. I received the Mavyret today and took the first dose about two hours ago. No side effects so far, or at least no symptoms that I can officially declare a side effect. The literature included with the medication recommends 2-4 liters of water daily. I will try to exceed that amount. Im aiming for a gallon or more (128 oz.) daily. I will update further as this goes on. The doc is ordering labs at 4 weeks which will be the midpoint of this 8 week course. Thanks amigo!

Good plan, Sticker.  Keep up the good work!

Cheddy,

You can definitely hitch a ride! My favorite thing is driving neighborhood streets in this massive truck, especially when there are cars parked on both sides of the street! I consider 2 inches of clearance on either side of the truck to be plenty of room! Im lucky to be doing what I do. I suffer the same problem that many public safety people have, our careers are so consuming that we often identify ourselves by what we do and we talk about it too much. The job is so omnipresent in our lives, both on duty and off. I am just a regular person though, for all intents and purposes, a civilian.  Im trying to get two kids through college, treat this lousy virus and contemplate the happy dream of retirement!

Shemp,

Its definitely a small world! I worked with the Armstrong agent in Nashville/Laverne Tn. I worked locally for a while, I liked the office moves downtown, work through the night but get so much done! Then I went over the road with an owner/operator who trusted me enough to share some wheel time and we ran the whole US. We were so jealous of the guys handling the electronics, we wanted your job! When I say I respect what you do, I really mean it. Im still driving a big truck only now its a ladder truck! 

Hi Observer,

Thanks for your insight. Your comments remind me that while we respect physicians it is incumbent that we advocate for ourselves. Many docs these days are aggravated by their patients researching things on their own. Many practices distinctly lack the ability to treat patients as a whole person and seem to view them as merely a case. I shall be the proverbial squeaky wheel while remaining respectful and courteous. This attitude of mine is from the difficulty of the initial interferon/ribavirin treatment. I was depressed to the point of not continuing the treatment and discussed this with my doctor. He refused to prescribe any sort of meds that could have helped me through that difficult time and instead suggested that I discontinue treatment since I couldnt handle it. Frankly, I thought he was an *******. I was in a small town and it was not feasible to travel the long distance to a bigger city where I might find another doctor. I finished 12 months of that poison to no avail. 

I think you were correct in waiting on treatment. I hate that you suffered with this for so long but I respect that you were thoughtful about what you were doing. I hope to join you guys in Club Zero in the near future!

Hey Sticker,now there's a real coincidence. I've been an owner/operator with United for almost 30 years. Got out of the household moving part about 25 years ago. Now haul high value electronics and hospital lab equipment. Don't let the side effects scare you. The fatigue is mostly tolerable,as far as insomnia goes,like I said everyone is different. I took my daily dose right before I went to bed.I don't know if that had anything to do with it.That's the time that worked for me. You've been through treatment before,you understand it's a learning experience.Hope you have a smooth ride.If I can help,let me know.

My gosh Tig, your story really helps me gain perspective on my own. Thank you for your service as well sir. I am happy to know that you served in the Navy, because Im a Navy brat. Born in Taipei, Taiwan while my father was serving in Vietnam. He had two tours and doesnt talk about it very much. He was disappointed in the Navy post-Vietnam and decided to retire in 1976 after serving 22 years. Dad was a Master Chief E9, they offered him Warrant Officer but he said, no thanks. Bouncing around the US as a military family taught me how to cope with new environments and people. It was a valuable experience. 

I have had it better than some, worse than some others. Your treatment odyssey has been long and undoubtedly difficult. I sympathize with you and imagine the feelings you may have had during that time, we are likely reluctant to share every thought and feeling, but there is so much that doesnt require statement, we just know. We have been there. I know that none of us here are defined by this virus and our words in this forum are merely the slightest glimpse of who we are. Its a beautiful glimpse though. I am still waiting on the specialty pharmacy to call me to set up delivery for the Mavyret, they want to make sure somebody is home to receive it. Cant leave such a high valuation package on the doorstep. I think I should move to the on treatment section of the forum when I begin taking the meds. Thanks for the positive attitude and encouragement!

I didn't find out I was infected until 1996, following a surgery. Sadly, one of the OR nurses got stuck and they drew a HCV antibody test. About a week later I got a phone call from the surgeon telling me the happy news and found to be positive for HCV 1A. I still dwell on two things almost everyday. I am saddened knowing that nurse had to go through the fear of this disease back in 96. There was really nothing other than long term Interferon injections, multiple times a week for 6-12 months and even some here that mentioned having to do that same protocol for years! I can't imagine what they're suffering with to this day. With a 10-20% success rate, if lucky, the odds were stacked against us. The other thing that haunts me is a blood drive through the Post Office I used to work for. You got a extra day off if you gave blood. That was in the late 80's, before HCV screening. So some unlucky individual or more, got tainted blood. I can only pray they are as lucky as the rest of us and are now either cured or will be with these new DAA's.

Most likely exposure was tattoo work back in 80-81 or during my time as a US Navy Hospital Corpsman in the 70's. Could've been from the air gun vaccinations or through contacting patient's blood. We didn't wear gloves as religiously as they do now, especially during emergencies. Then there were multiple surgeries of my own. It could've come from too many things to nail down anything specific. So Sticker, you need to continue to be cautious and vigilant with your exposure to anyone's blood. The last thing you need is to reinfect with HCV and especially any form of Hepatitis. There seems to be a growing alphabet soup of new genotypes and subtypes. I know you're aware of those dangers. I wish I had known back in the 70's as a Navy Corpsman and EMT that blood viruses were going to take the stage in 20 years. HIV is another and our Moderator Mike has dealt with both C and HIV. He's a Warrior with history that will curl toenails and hearts. He's a true example of bravery and success.

First treatment in 96 with Interferon monotherapy failed and I sought no further treatment until 2013. Treated with Peg IFN, Ribavirin and Victrelis, 18 pills per day and 3 weekly (IFN + Neupogen) injections for 28 weeks... lost 55 pounds, anemic, sick and basically lived between my chair and bed. I can't imagine how you were able to function in your capacity as a First Responder during your toughest days. I simply couldn't have done it. Besides total and utter weakness, almost to the point of incapacitation, life in general was almost intolerable due to the depression. You did it, twice with Ribavirin and failed. I don't know how you managed, but my hat is off to you Brother and my heartfelt salute is yours. I'm so grateful nobody has to experience those horrid treatments anymore. Don't even get me started on Incivek! I would've rather been waterboarded.

I would be skeptical of the Fibrotest or Fibrosure, they have been known to be inaccurate. As the ALT/AST numbers and various other LFT's fluctuate, those scores drop or elevate accordingly. We know now that they can change based on viral flares. The Fibroscan or our favorite (ha, ha) the percutaneous biopsy have far better accuracy. The Fibroscan has improved so much, even offering CAP scores now. It wasn't until recent years that the biopsy wasn't still considered the gold standard. I got to enjoy 3 of them. Two by percutaneous puncture and one by laparoscopy. The best part of two of them was the Versed sedation, the first was grin and bear it...

Epclusa or Mavyret are both outstanding treatments. You WILL be cured this time, my Magic 8 Ball tells me so! I haven't had to get it out for quite some time, but here it is and it has never been wrong...

Thanks so much for the questions and encouragement! Ok, not too many questions, but tons of encouragement! Many of you have been cured for a while now but continue to offer your attention and support to so many others, thats pretty special! So, when I first began treatment way back when, boy, was I sick. The fire department I served with did not understand or accommodate me in any way. I was younger then and thought that I was really tough and could manage with the sickness. I did, it sucked quite a bit. I can recall numerous occasions of injecting interferon while on duty and then responding to a working structure fire and making interior fire attack. That task is fairly difficult when you feel great but incrementally worse when you feel sick from the meds. I dont say this to impress anyone, I was a fool. The occupation requires one to be fit and I have always engaged in vigorous physical activity. I worked part time as a roofer too, the hot summers down here are a literal crucible that either hardens you or wilts you like a spring flower, at least thats the acceptable notion; its a combination of both. So, I had a baseline for resisting the physical part of dealing with the side effects, it just took a toll on me. I was surprised by the emotional rollercoaster while being treated. Sadness, depression, wallowing in self pity, the ridiculous questioning of why me, it wasnt a happy time for myself or my family. I fear that Im oversharing. I dont really know how to do this. I will dial it back a bit. I suspect that everyone here has a story and to tell you the truth; I would like to hear your stories. I find it inspiring to know that you have a tale to tell. I am encouraged by the success patients are having and your advice is immensely valuable. Thanks to everyone!

My doctor intended for me to be treated with Epclusa as discussed during my initial visit. When I saw him on 3 July he changed his mind. We are going with eight weeks of Mavyret. My abdominal ultrasound was pristine although the fibrotest (blood) indicated F3 there was no visible sign of fibrosis on the ultrasound and no sign of cirrhosis which is consistent with a needle biopsy performed like 16 years ago. (Those biopsies are a ton of fun, seriously, now we know what it feels like to be knifed in a dark alley.) I have likely had the virus 42 years so what gives? My doctor indicated that length of exposure is not always relative to damage done. I am told by my physician that his patients are reporting virtually no side effects whatsoever and he wants me to call him if I do experience side effects. My water intake is on point, Im practicing now to get a gallon in every day, its not too bad, the old kidneys are getting a good workout. I am now waiting for the specialty pharmacy to call me post insurance approval to set up a date and time for delivery of the meds. 

Greeting, Sticker,

Ditto on all of these.  Yep, there are some really great folks here who know lots and really do want to help.  You'll be fine but I know this is all sort of scary and provokes a lot of worries.  You couldn't be getting treatment at a better time.  You are on your way to being HepC free forever.

Please ask away if you questions, and lean on shoulders when you need too.  It sure helped me!

Welcome aboard, Sticker.

Cheddy

Hi Sticker,

Welcome here from me too. Ditto - glad you are here with us and about to (finally) be cured.

What a long haul you have had, but ... you got the good stuff now. Won't be long - 8 weeks will fly by quite quickly, especially when compared to the treatment(s) of yore!

Agree with Tig - great job on the sig. line. Like he says, drink lots of water, and mind the rules of engagement, which I am sure you already know.

I hope your doc has already told you what your lab testing plan is for you, and that you do get a 4 week blood draw.  

I feel like you, this place is good and a godsend. : )  C.

Thanks for posting your signature! That helps give us a pre treatment baseline number and I‘m certain, you'll be amazed by the next set of results. Some docs make you wait til the end of treatment (EOT) to get them. I suggest you ask for a full set of LFT’s and another PCR at 4 weeks. It’s a huge morale boost to see how effective these new drugs are! 

Mavyret is an incredible protocol! I haven’t met a single person that it hasn’t cured. I can’t give you a better sign of hope, the stuff simply works! Check out our Hep C News section and you’ll find some monographs. We have a bunch of info in each of our sections that you’ll find interesting. Especially if you‘re remotely close to being a Hep C nerd like I am, lol! What can I say? Like you, most of us have been at this for decades! We are all fighters and Winners all!

I hope day one was an easy for you. Let us know how it went. The first couple of weeks can take some adjustment, but it should be tolerated easily. Hydrate, avoid antacids (follow the monograph guidelines if you need them) and stay compliant. I know you’re on track for the cure you’ve fought for, for decades! You got this...

welcome sticker, it's good to hear you are going to be cured soon