Author Topic: Started my fourth week of Mavyret (Read 23297 times)

Macknine22 · « **on:** January 31, 2019, 01:37:18 am »

Hello every one, I'm starting my fourth week today, of mavyret. as far as side effects, the one thing I can say is, I get some headaches, some upset stomach problems. Other then that, its been pretty good to me. I drive a tow truck for a living, I have seen a better pep in my step. Also I mainly drive at nights keeping my days open for appointments. I'm scheduled for my first testing (next Thursday)since taking the medications. I'm not at all excited, because I'm used to the let down. I contracted in 2000 for being stabbed in a attack to five people, one that had HCV. The attacker didn't have HCV. I was first notified in oct of 2000, I was stabbed in sept. I'm glad that I can talk about the HCV to a bunch of my peers. I have genotype 1A. I was told this is one the hardest to fight, because its chronic inflammation. But I'm off topic, any questions, let me know...

jberlin · « **Reply #1 on:** January 31, 2019, 09:16:32 am »

Welcome to the Hep C discussion forum. We decided to make your post the start of its own thread, hope that is OK. What an awful way to contract Hep C and an awful thing to happen period. Best of luck with your treatment and pulling for you to be cured post treatment!
Best wishes,
jack

Macknine22 · « **Reply #2 on:** February 01, 2019, 04:08:05 pm »

Thank you Jack, I'm honored to be among you all, it has been a lot to deal with. From getting the news to, informing my family, to drinking because of the depression, and drinking because of the medication cost. I have told my family, that given the second chance at life, I decided that cleaning up my life and living normal (away from alcohol) because the treatment was coming. I didn't take any other medications before this. So my first time on a regiment. I will try to post about my journey when I can, but I'm a tow operator, called at any time. Told my wife about the chat, she is confused about it, because I told her that I would not talk about it. But on here I feel free, because every thinks you only contract it thru needles. I was labeled a drug attic in hiding from old friends. But no one knows my story, I still feel ashamed about having HCV. So yes I do not tell at all, unless its important to do so. I just want it to be over, my job knows something, but I like leaving them in limbo, its none of their business, unless I'm injured or dead. but thanks again, I'm open to responses, if any. best regards. CSW...

jberlin · « **Reply #3 on:** February 01, 2019, 04:27:17 pm »

Yes, each of us have some interesting journeys and stories in and around this horrible virus. But we have seen it go from non type A / non type B Hepatitis, to un-treatable Hep C, to really awful treatment with low success (been there), to pretty tolerable treatment with 90+% cure rate - so you are blessed that it is now as treatments have come so far. Do keep us informed about your treatment experience and certainly your outcome - which I know will be good news.
jack

Macknine22 · « **Reply #4 on:** February 01, 2019, 05:54:36 pm »

I forgot to mention one thing as a side effect, now that I think about it. So I'm not sure about anyone else, but since I started treatment, I have had the itches all over like mild. This could be from medication, because it didn't happen before. So that started week mid week three. Just wondering if anyone did as well. But I did get the tingling sensation (finger tips and arms) week one of medication. I read someone else had that, I can relate. CSW

andrew j · « **Reply #5 on:** February 02, 2019, 05:14:44 pm »

It's a normal side-effect - and nothing to worry about.
... In fact - you seem to be feeling all the right things in all the right places!

Best of luck with the rest of yr Tx.

A.

P.S. I like your little message.
Its ... comforting, somehow!

Macknine22 · « **Reply #6 on:** February 06, 2019, 02:21:52 am »

Good evening everyone, just a little update on my situation. I finally get my blood work done Thursday. 1 pm. I also have been happy to share what I know, and have been thru thus far. Tonight, I get rid of my old infected toothbrush as told by my Mavyret nurse Krissy. I start week five tomorrow, so its coming along quite well thus far. I was late on my medication on superbowl sunday, as I always made homemade wings on that day. I'm very careful with the knife I use. but I almost forgot my medication time at four, I was told I could still take it around the normal 12 hours between doses. Or be sure to have em down by 18 hours max between my recommended time(six total hours) I usually dose at 4pm daily, ended up taking my meds at 10 pm. then the following day at 8pm, then six pm today, then back to 4pm tomorrow. just thought I'd space out the increments a bit. good night all...

Mugwump · « **Reply #7 on:** February 06, 2019, 02:59:46 am »

For a great many of us the fears of re-infection are a burden that is not founded upon facts as much as myths. Fortunately re-infection by using things like tooth brushes, towels, nail clippers etc are only theoretical incidents.

I can tell you that I was unknowingly infected with HCV for a great many years and the myths about how this disease can spread are far worse than reality. If HCV infection was as communicable as many lead us to believe it would be a pandemic that would be catastrophic.

When I was first diagnosed in 1993 the facts about how the disease spread were just coming into light and many over reacted to the situation. I can remember being told by medical professionals things like never to share towels, grooming implements (for instance hair brushes) and the list went on and on. Don't give someone a piece of food off your plate if you have used a fork or whatever.

The fear and overreaction to this disease was terrible and unfortunately many of the myths still persist to this day.
I am sure that you are on the road to freedom from this disease and the burden it places upon us all in more ways than can be measured in terms of what it does to just our livers.
Cheers
Eric

Lynn K · « **Reply #8 on:** February 06, 2019, 01:18:53 pm »

I did not hear that kind of stuff about towels or sharing food. I was originally diagnosed in late 1990.

I did read the CDC hep c FAQ for the general public which does suggest not sharing things that could be contaminated with blood like razors or tooth brushes never heard a word about hair brushes how often do we bleed when brushing our hair lol.

As far as my own personal hygiene items I did not dispose of my tooth brush or take any special measures like some have beyond what I always do and rinse off my tooth brush with hot tap water when I finish. I also kept the same fingernail clippers throughout my treatment.

Not sure why you were worried about your knife. My biggest concern about getting a cut was infection others but once your viral load is not detectable it would be near impossible for that to happen as even if you did have a very small amount of virus remaining below detectable levels it just wouldn’t be a big enough dose of the virus to infect.

Best of luck with your remaining treatment try not to worry

Macknine22 · « **Reply #9 on:** February 07, 2019, 11:09:21 pm »

Good evening to everyone, I got blood work today, and had my appointment today. Again, I'm not going to keep my hopes up. I learned long ago never to do that. but everything seems to be on track and moving. I did end up with a lot of fatigue today, either because I stayed up towing till 3 am from 5pm. But tonight seems a lot harder to shake it. Having abnormal stress levels at work is not helping. I'm wondering if that stress would effect my treatment in any way? I had a very long day as I was awake today since 8 am again. just tired... have a good night all..

Lynn K · « **Reply #10 on:** February 08, 2019, 01:12:55 am »

Stress will not effect your treatment. But it wil effect your rest and general sense of well-being.

I hope you are able to find a way to relax as best as you can. These new meds are very effective with cure rates in the high 90 percent range. Hang in there

Macknine22 · « **Reply #11 on:** February 13, 2019, 01:08:28 pm »

Hello for everyone and anyone following. I will complete my fifth week of treatment, I did make one mistake within the five weeks. I forgot a dosage two days ago, I didn't double up, rather considered it what it was, but continued on Monday regular time. Felt a bit guilty, but I was at a sweatlodge cleansing myself in my old traditional way. All in all, I'm feeling okay, still slightly fatigued but rest hard to come by in my field. No results from my blood work just yet. Waiting on that. I'm sure someone reading this will wonder about a accidently skipped dose. Anyone know how they dealt with it different then I? But I continue to stride further, I'm glad someone loved my Quote or signature, its just the way I continue to live my life. I'll post as soon as I know anything about my results, as well as my original numbers. Deal? Have a good day warriors..

Lynn K · « **Reply #12 on:** February 13, 2019, 04:10:29 pm »

I wouldn’t worry about your skipped dose you won’t be the first or the last person to do so. You did exactly the right thing by not doubling up. If you realize you missed soon enough you can take the missed dose and return to your normal schedule. But if you don’t realize until the next day just pick up from where you left off.

I’m expecting to read good news when you get your results

Macknine22 · « **Reply #13 on:** February 16, 2019, 12:25:45 pm »

I'm hoping for good news, just got back in the truck, had to try to get my body to recover. I'm feeling more fatigue now then before. So I'm not sure if my symptoms are late or it just my body, No results yet... but again, when I know, you all will know, HAGD...

Macknine22 · « **Reply #14 on:** March 02, 2019, 10:19:20 pm »

Good evening everyone, sadly I have not had an update from my doctor. I wish I had some kinda numbers, but so far nothing. I'm not frustrated, I'm a bit confused why he has not. But maybe the medicine is working too good. lol I also have returned to the truck full time, so I get it. I should call him, I'm also thinking of getting a history of all my results since diagnosed. I'm living, nothing real new to report, but that the fatigue has subsided. I'm humble at the fact that I even got the medication, so everything is a bonus. I can appreciate that, stride is good. I can feel the difference. Till the results... CSW

Lynn K · « **Reply #15 on:** March 03, 2019, 02:56:38 am »

Yeah a lot of us have our data in one form or another. My doctor used an online website where I can see all my labs going back from when I started with their office. I have similar for some of my other doctors I saw in the in the past.

I get any new results on the web site as soon as my doctor reviews them. The viral load usually takes a week to at most ten days so you might want to give them a call. Best of luck sounds like your feeling better

Macknine22 · « **Reply #16 on:** March 30, 2019, 12:03:10 am »

Sorry, I have not updated in a while. my latest news is, I'm on my last four pills of my three month treatment. Never got a call back from my doctor, so I just keep prayers and hope that I'm Free. But to me that is still a long shot. I'm just on borrowed time for now. But I'm going to force the issue tomorrow with the doctor. Also going to ask for printed results. I hope things have turned for the better so far. stay strong Warriors... its a journey... Mitakeyupi

Lynn K · « **Reply #17 on:** March 30, 2019, 12:36:07 am »

I understand how hard it is to trust these medicines for me I had 4 previous failed treatments before I was finally cured. Your odds of being successful are very good with cure rates in the high 90’s

The only test that matters is the 12 weeks after completing treatment that is the test that will confirm you were successfully treated and are cured. While it’s nice to see not detected on treatment or at EOT the only test that matters is the viral load test drawn 12 weeks after your last pill. It’s a long wait for that test that’s for sure we’ve all been there very nervous with fingers crossed.

my doctors advice was think “negative” for negative not detected for hep c virus at 12 weeks post results

Sending best wishes for good results

Macknine22 · « **Reply #18 on:** May 21, 2019, 11:34:00 pm »

I'm sorry for any one that was following closely, I had test done, job change, and death near me. So the stress level has been thru the roof. As of Feb 7 2019, virus was not detected. Prior numbers were 772,000 viral load count as of July 18 2018. all this information was available, but I was to distraught after the loss of my grandfather. so I chose to take a break from work, from medical, and everything else. So I can officially say I'm in remission, again I don't count my eggs till hatch time, but given the numbers. Lower <15 normal, not detected was good news. Because I left work, I have not had my internet on. So that is another big reason for no response. I was thru with my last dose 4-30-19 12 weeks of Mavyret. I can say it works... Will check numbers soon again... love you all...

Lynn K · « **Reply #19 on:** May 22, 2019, 12:34:55 am »

So sorry to hear about your loss no worries about not keeping us informed I’m sure we are not your highest priority with everything that is going on and that of course is totally fine.

Hoping you get the same not detected result 12 weeks after your last dose. The odds are very good you will and then can say you are cured.

Hang in there and best of luck

Macknine22 · « **Reply #20 on:** June 22, 2019, 01:16:35 am »

My latest test results are as of May 21 test, tested <15 viral load count, meaning undetected. I'm happy to have had a forum like this, I feel I can now share my story of the years of this, as well as the success of this medication. I wanna say I'm cured, but wanna know the birthday to my Treatment. So I can celebrate it when I can. Love you all still, the Warriors..

Mugwump · « **Reply #21 on:** June 27, 2019, 02:52:52 am »

Quote from: Macknine22 on June 22, 2019, 01:16:35 am

My latest test results are as of May 21 test, tested <15 viral load count, meaning undetected. I'm happy to have had a forum like this, I feel I can now share my story of the years of this, as well as the success of this medication. I wanna say I'm cured, but wanna know the birthday to my Treatment. So I can celebrate it when I can. Love you all still, the Warriors..

Some of most important and difficult changes being cured brings are yet to come. For me the changes were not obvious but certainly very clear after I realized the greatest change that freeing oneself from HCV brings. And that change is realizing that you are no longer a walking bio hazard that worries every time you cut yourself that you may accidentally infect someone else. My greatest fear was: that if I was rendered unconscious in a traffic accident or other incident that created serious bleeding, the person(s) rendering assistance might accidentally be infected by blood splatter to the eyes or whatever means. Even though the odds of this occurring are exceedingly low it still nags the mind at a distance.

The other change is: if suddenly you do feel sickly it is most likely because you have picked up a bug not that HCV has started to increase the damage going on in your liver. So one can stop worrying about having a simple case of the flu cause a rapid increase in infected hepatocytes thus taking out your liver quickly. HCV, being a sleeper disease, creeps up on you as your liver slowly deteriorates; so the changes that suddenly having a much healthier liver makes are obvious to those of us who had progressed past F2-F3. Once you reach F4 there was a real danger of having a disease like the the flu compromise your immune system and enable a deadly rapid spike in the infection. This possibility is now gone for good.
The most notable change is how well I seem to deal with the cold, my metabolism 3 years post treatment is now better than it has been in over 20 years. My teeth have stopped rotting and the plaque levels between cleaning on my teeth is noticeably reduced. I no longer suffer from dry mouth and cirrhosis caused halitosis which was getting quite bad up until May 2015.

The changes being free from chronic HCV infection are indeed profound, both physically and psychologically.
Cheers and all the best getting over having once been infected with this horrible disease.

Eric

June · « **Reply #22 on:** August 20, 2019, 10:50:34 pm »

Quote from: Macknine22 on February 06, 2019, 02:21:52 am

Good evening everyone, just a little update on my situation. I finally get my blood work done Thursday. 1 pm. I also have been happy to share what I know, and have been thru thus far. Tonight, I get rid of my old infected toothbrush as told by my Mavyret nurse Krissy. ght I'd space out the increments a bit. good night all...

Hello...new here, on just third day of Mavyret. I will be speaking to the Mavyret support nurse for the first time tomorrow (from the Mavyret site) and will ask about the toothbrush. NO ONE at my doctor's office has mentioned this and if they don't I will ask them WHY NOT. That kind of blows my mind that it hasn't come up, even though I just started. I never thought about my toothbrush!! But don't they think of things like that?

I was diagnosed in about 1997 and have been one of the lucky ones, consistently low numbers, no liver damage, never had Hep B, basically no effect on my life at all. Never did treatment because I was more afraid of that than the disease. And years ago treatment was a nightmare. In the early years you had to give yourself shots in the stomach three times a week and the medication sucked big time. But I am 68 now and though I'm healthy I am concerned about any future health issues that might be complicated by Hep C, or not being able to take some medications because of Hep C. So with the new meds available I began to think it would be stupid to not do it.

I'm on 8 weeks of Mavyret, third day, as I said. Nasty headache, very slight nausea, some sensation in mouth after about 3 hours like I ate spicy food food but no difficulty swallowing, no swelling, little itchy, no rash.

I take it around 6pm with a full meal and big glass of water and then around 11:30-12:00 I take Ambien, which helps with the headache and just go to sleep. I guess this will be my routine for two months. There is no drug interaction with Ambien. Looking at laptop makes headaches worse though!

Looking forward to hearing other experiences.

Lynn K · « **Reply #23 on:** August 20, 2019, 11:51:55 pm »

Hi June and welcome

I was diagnosed in 1990 probably infected in 1978. I did the old intron A treatment three shots a weeks in the upper thigh switching spots and leg. Felt like I had the flu for six months feeling run down, tired and achy. I had no response to treatment. I treated 2 more times with interferon an ribavirin once with a drug trial drug but same result no decrease in viral load.

After being infected for 30 years I was diagnosed with liver cirrhosis on my 4th liver biopsy (I was having liver biopsies every 5 years after being diagnosed with hep c) so I was not allowed to treat with the new interferon with incivek because it would have been too risky for me and odds of it working were very low.

Anyway I treated with Harvoni and ribavirin from 11/14 to 5/15 and was finally cured of hep c.

I didn’t do anything special with my tooth brush or fingernail clippers etc. Had no impact on being cured. Really they did t say anything because it really isn’t needed. Some folks suggested doing that but it’s really not necessary. But if it makes you feel better you could celebrate your first not detected test with a new toothbrush

Best of luck on treatment

June · « **Reply #24 on:** August 21, 2019, 09:54:39 pm »

Quote from: Lynn K on August 20, 2019, 11:51:55 pm

I didn’t do anything special with my tooth brush or fingernail clippers etc. Had no impact on being cured. Really they did t say anything because it really isn’t needed. Some folks suggested doing that but it’s really not necessary. But if it makes you feel better you could celebrate your first not detected test with a new toothbrush

Best of luck on treatment

Thanks. I had already joined the Nurse Ambassador program that is offered by the patient support part of www.mavyret.com/‎ and spoke with him for the first time this evening. I asked him about the toothbrush thing and he said they actually do recommend getting a new toothbrush and razor blades after about 5 weeks. He said that's the only items they tell people to change. I'd rather follow what he says than not. It's not about being cured but I'll do whatever I need to do to avoid being re-infected so those two little things are easy to do. Better safe than sorry.

I'm happy for you that after all you went through a treatment was successful!!

Lynn K · « **Reply #25 on:** August 21, 2019, 11:11:25 pm »

Yeah sure out of an abundance of caution but the odds of reinfecting yourself is negligible but sure better to be safe and toothbrushes are cheap. We had some here changing everything weekly

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Author Topic: Started my fourth week of Mavyret (Read 23297 times)