Mavyret

[mpls]

Hello.  I Started Mavyret today. Hep C, Genotype 1B. 40 years. Has anyone else started it and/or completed it yet?

[Lynn K]

I don't know much about Mavyret but here is a link to a thread started by the Hep editors with some info.

Hopefully someone will come along who has taken or is taking this med.

Good luck with treatment

https://forums.hepmag.com/index.php?topic=5036.msg51086#msg51086

[mpls]

Thanks, You have tried them all! Congrats on being HCV free, that's fantastic. I have been waiting (a long long time) for the new drugs. So, finally.... feeling hopeful.

[Blessed3]

Yes I’m 42 genotype 1a. I just finished my 4th week have four more to go. Towards the middle of the the 4th week I have been feeling light headed and having blurry vision. Made an appointment with the doc found out my blood pressure was high. I never had high blood pressure in my life. So now I’m on medication for that. For the past two nights I have been experiencing bad pains in my thighs and headaches. Emotionally this medicine has taken a toll on me. I tell myself I just have a few more weeks to go. Hope more people respond because I would love to know what others are experiencing with this medicine especially since it’s only been on the market since August or September not sure the exact month but I know it’s a new drug. I wish you and whoever else good luck and few side effects.

[mpls]

I did read somewhere that high blood pressure is a possible side effect. It's pretty amazing that you made it 3.5 weeks without any other side effects. I felt emotional yesterday when I started the medication, only because, I have had HCV for so many years and feel anxious about the medication. Hang in there, you are 1/2 way there!!!

[Blessed3]

I didn’t want to mention the tingling and numbness in my arms and hands because I was told that I have cervical degenerative disc disease. I experienced these symptoms just a few days into taking the medicine. They say it’s some form of arthritis. The funny thing about that is that I didn’t have this issue until I started taking the medicine call it a coincidence I don’t know. My face feels numb but not numb I see a spinal specialist next week. Please keep me updated on your symptoms so far we the only 2 taking this medicine. Also no matter what this medicine put you through just keep going because trust me there are plenty of times I wanted to quit. The side effects are bad but the outcome of not having Hep C is better.

[Pctree]

I just got a doctor to prescribe mavyret , it is now awaiting approval from the insurance Co. Did you guys get help from insurance with this or pay out of pocket?

[Lynn K]

Most here either had insurance for their various treatments or found other ways to pay. Some here had to use an overseas pharmacy for greatly reduced costs but that was for generic Harvoni.

I only think one person here paid out of pocket for US prices for Harvoni.

There are resources some used to get help paying for treatment hopefully someone will add this info.

Do you not have insurance or are you just worried they won’t do their job that they are paid to do and provide you your needed medicines? If your insurance denied your meds you have the right to appeal their decision. When these drugs were new many of us had to fight with our insurance and most of us won.

Good luck and happy new year

[Pctree]

I do have insurance but have very limited patience dealing with BS. and I assume they are going to make it tough.

This summer I did a course of Darvoni from Beacon but failed to clear . Work has let up some so I am trying to figure another approach

[Pctree]

Genotype 2b

[Blessed3]

I got help with insurance. My insurance originally denied me for Harvoni didn’t meet the requirements. I didn’t have enough liver damage for approval. I thought that was bull it had to do with money. When Mavyret came out my doc put in for approval and went it through. Doc explained to me that Mavyret was cheaper then Harvoni for insurance companies. Please be aware that side effects are not just headaches, tiredness and nausea. Over half way through my 5th week and I’m having more side effects that they don’t mention. Swelling and painful thighs, face numbness, constipation and to top it of anxiety because I don’t know what this medicine is doing to me. I felt better not on the meds than I do on the meds.

[Lynn K]

I can totally relate. I failed a round of treatment with Sovaldi and Olysio and was scared my insurance would not approve a second round with Harvoni when it was just approved one month before.

I had to fight for Sovaldi and Olysio because it was

a. Expensive
and b. Off label usage.

Then I relapsed and they said I had relapsed on treatment which was not correct so after a dozen phone calls and basically crying on the phone I found someone who helped me get treatment.

I have BCBS with express scripts as PBM (pharmacy benefits manager). Their job is to keep costs down for my company not as much to help subscribers so very often we have to fight especially when Harvoni costs $1125/pill my 24 weeks cost them $189,000 which I said to them is less than a liver transplant and anti rejection meds for life.

Just to add while sadly some people do have a difficult time with treatment most people only have the commonly listed side effect at least for Harvoni and the other meds that have been out for a while I expect it is similar for Mavyret

I had from Sovaldi Olysio and later from Harvoni was some mild headaches. When I added ribavirin to my treatment I did get anemic but that was due to the ribavirin. Otherwise I felt fine.

Good luck don’t give up

[Pctree]

Blessed you have to believe this will pass and you will feel so much better after!  After I finished the Darvoni I felt awesome for weeks. I ride mountain bikes and could just fly for hours just like I could 20 years ago!

After some reading I'm guessing I might try ribavarin with whatever tx I try next.

[Lynn K]

I am guessing you mean Harvoni not Darvoni?

We added ribavirin as a best guess from what I saw on a discussion by several experts from the Liver Conference in 2014 on the situation of what to do with a patient with multiple treatment failures who had also failed prior DAA treatment as I had done. Also at that time I was running out of options. With having liver cirrhosis for 7 years by that point.

The new treatments seem to be more effective for prior Harvoni failures. I don’t really think you will need ribavirin we were just hedging our bets for me.

[Pctree]

I meant Darvoni that I purchased from Beacon. I kinda figure if I do say a month of ribavarin at the start of the tx it will hopefully stop resistance.

I climb trees for a living and winter is our slow period so might as well have a month feeling rough and kick it.

[Lynn K]

Ok hadn’t heard that name so looked it up tha appears to be what we call DAKLINZA in the US guess you are getting that from overseas or you live elsewhere

[Lynn K]

Are you being followed by a doctor?

The current recommended treatment per the AASLD for GT 2

https://www.hcvguidelines.org/treatment-naive/gt2/no-cirrhosis

Is either

Daily fixed-dose combination of glecaprevir (300 mg)/pibrentasvir (120 mg) which is Marvyret for 8 weeks or
Daily fixed-dose combination of sofosbuvir (400 mg)/velpatasvir (100 mg) which is Epclusa for 12 weeks

Daklinza was listed as an alternate treatment

The AASLD does not list an alternate treatment for treatment failure for GT 2 with Daklinza.

https://www.hcvguidelines.org/treatment-experienced/gt2/SOF-RBV

They do list a recommended retreatment for GT2 who failed Sovaldi and ribavirin which is either Mavyret or Epclusa both for 12 weeks.

There is no recommendation by the AASLD for using ribavirin unless you possibly have read this elsewhere.

[Pctree]

OK so I read this article over at "FixHepC"


Any SVR rate <100% means a small number of people will not attain SVR. A 95% SVR means for every 20 people on generic treatment 1 patient will relapse.
Back in early 2016 I came across an excellent article from Dr Jordan Feldwas kind enough to allow it to be reprinted here. It is a great overview from an eminent expert so I'm publishing it here again.

Since this article was written nearly 2 years ago there have been some developments and over the following few days we are going to look at:

Understanding HCV and how the DAAs, Ribavirin, and Interferon work
Viral kinetics and why treatment duration matters
Resistance mechanisms, lessons from HIV and why 3 targets are better than 2
Why we are now at the end of the road for the HCV pipeline, understanding your options and the importance of getting it right 2nd time around
How I Manage Patients With HCV After DAA Treatment Failure

Jordan J. Feld, MD, MPH - 19/1/2016

The remarkable success of the new direct-acting antiviral (DAA) therapies for chronic HCV infection has led many patients and physicians to expect a cure whenever these agents are used. Although this is indeed the outcome for most, what can we offer the few patients in whom these treatments fail?

The data on retreatment are just starting to emerge. Whereas these studies cannot address every situation, a few general approaches are supported both by good logic and at least some empirical evidence: 1) switching to a different DAA class or classes, 2) treating for longer, and 3) adding ribavirin.

Treating With a Different DAA Class

The simple approach of switching DAA classes is an obvious option for retreatment. It is certainly effective as there is no cross-resistance across DAA classes. This was established by the outstanding results of clinical trials in which patients who experienced protease inhibitor (telaprevir or boceprevir) failure were retreated with combinations of a nucleotide polymerase inhibitor (sofosbuvir) and an NS5A inhibitor (daclatasvir or ledipasvir).

However, switching to a different DAA class is not always possible, owing to contraindications, comorbidities, or potential drug–drug interactions, and may not be absolutely necessary if the other approaches are followed.

The biggest challenge in treating with a different class is NS5A resistance. NS5A resistance associated variants (RAVs) are very fit; they often emerge even before treatment and almost always persist in patients for whom an NS5A-containing regimen fails. Since NS5A inhibitors are part of most approved and investigational regimens, it can be difficult to avoid NS5A inhibitors when retreating.

Extending Treatment Duration

Retreating patients with a longer duration of the same treatment that failed can help many patients, but it may not be enough to overcome RAVs. This was demonstrated in the initial retreatment trial presented at EASL 2015 by Lawitz and colleagues. Patients for whom 8 or 12 weeks of ledipasvir/sofosbuvir failed were retreated with ledipasvir/sofosbuvir again—this time for 24 weeks. Among patients without NS5A RAVs, this approach worked very well, resulting in an SVR12 rate of 100%. However, among those with NS5A RAVs, this strategy was suboptimal, with an SVR12 rate of only 60%. Even more concerning, 4 of the patients who failed the second course of therapy also developed RAVs to sofosbuvir. Fortunately, lessons were learned and the retreatment trials presented at AASLD this year proved much more successful.

Adding Ribavirin

Data from the 2015 AASLD annual meeting highlight that retreatment with a previously unsuccessful regimen is possible with the help of ribavirin. In the C-SWIFT trial, patients who had relapsed after 4-8 weeks of treatment with grazoprevir (a protease inhibitor), elbasvir (an NS5A inhibitor), and sofosbuvir (an NS5B inhibitor) were retreated with the same combination of DAAs but for longer (12 weeks) and with the addition of ribavirin. With this approach, all 23 patients achieved SVR12.

The benefit of adding ribavirin to retreatment is not exclusive to NS5A inhibitors. In a small study of patients for whom a protease inhibitor regimen had failed, most patients were retreated with a protease inhibitor–containing regimen (ombitasvir/paritaprevir/ritonavir plus dasabuvir) plus sofosbuvir and ribavirin. Fourteen of these 15 patients achieved SVR12.

Although the mechanism(s) of action of ribavirin remain elusive, almost all studies using ribavirin with DAAs have shown that it delays or prevents the emergence of resistance, particularly in difficult-to-cure populations. Because ribavirin seems to raise the barrier to resistance, particularly for low-barrier DAAs including NS5A and protease inhibitors, it makes sense to add ribavirin to DAAs when retreating patients with presumed or known resistance.

Combining Strategies

All of the small retreatment studies I’ve mentioned successfully combined at least 2 of 3 approaches: switching to a different DAA class, treating for longer, or adding ribavirin. However, most of these retreatment studies were in patients without cirrhosis, a relatively easy-to-cure population. In clinical practice, many of the patients whose first treatment fails are those with advanced cirrhosis. For these tougher-to-treat patients, a combination of all 3 approaches would likely be worthwhile.

[Pctree]

So last week my thought process was I was going to try to get my insurance co. help pay for a course of Mavyret as I would be assured that it was the correct product, I was still somewhat suspicious of the Darvoni I purchased for $680 from Beacon. This would still end up costing me $6000 out of pocket though and thats for an 8 week course.

Now however after more research I feel pretty confident that the Tx I took was good but I have a tougher to treat strain so Im considering doing a 12 week Tx of Sofosbuvir 400 mg + Valpatasvir 100 mg along with 4 weeks of Ribavarin at the start to head off resistance. I have an email in to Beacon asking about cost which will be MUCH less than my copay on the Mavyret

[Lynn K]

Interesting study about ribavirin similar to what I heard in the discussion panel.

So I guess you are thinking about Epclusa from what I have read both Mavyret and Epclusa both look like great meds for genotype 2.

Do you have F3 or F4 damage? Were you treated with the old meds interferon and ribavirin in the past? Have you had any resistance testing done after you failed Daklinza(Darvoni)?

You can see in my signature I have had liver cirrhosis for 10 years now and was a three time null responder to interferon based treatment. Plus relapsing after treating for 12 weeks of Sovaldi and Olysio I was definitely in the catagory of difficult to treat.

Ribavirin for me made treatment a bit tough because of the anemia. Some people also develop a rash we called riba rash some were bad enough they had to stop treatment. I was fortunate I did not have that experience.

What are your doctors thoughts about adding a ribavirin lead in and the best DAA for you to try next?

[Pctree]

I am a strange personality and prefer to be self sufficient. 15 or so years ago I was diagnosed with HCV and the specialist I saw was very insistent that I started Interferon IMMEDIATELY! I questioned this as I climb trees for a living and wouldn't be able to do that on TX so wouldn't be able to pay my mortgage . 1 month later they came out with Pegulated Interferon and I realized that asshole was trying to get rid of his stock. Really turned me against doctors. I have some friends who are doctors one of whom wrote the script for Maryvet. If I do the Ribavarin I will get blood work done to check red blood count if I feel tired. This for me will be a big problem as I have an extremely active lifestyle and will have depression issues if I can't maintain my activities.

I have a problem with people making money off of me just because I have an illness which is why I bought direct from Beacon. My health insurance at this point is $1200 a month and I have never used it, really thinking about dumping it as it is no longer mandated......

[Lynn K]

Ok well I guess you probably know the test you are looking to have is a CBC and the result is HGB (hemoglobin) I know for me they wanted to keep the result no lower than 10.0 and when I went below that we dose reduced from 1200 mg/day to 1000 that was enough to stabilize me at 10.0 I was having my CBC test drawn weekly until we dose reduced and my numbers stabilized then we returned to a monthly blood draw. We also were having a liver panel done monthly.

I believe the HGB numbers are higher for males.

I was out of breath simply walking and felt tired and run down during those 15 weeks I was taking riba. We added it to my treatment after I started so I had already taken 9 weeks of Harvoni by that time.

As far as viral load testing you may want to have one done at 4 weeks in. That test really doesn’t mean much but it is nice to see undetected. If you don’t need the satisfaction of seeing not detected the only test that actually mstters is the 12 week post treatment test. But a common viral load test sequence would be at 4 weeks of treatment, at EOT and 12 weeks post. You may want to recheck at 6 months or just check your liver functions panel. As long as your ALT and AST are in normal range you probably have not become reinfected.

If you have F3 or F4 liver disease you should still have AFP blood testing and abdominal ultrasounds done every 6 months to check for early signs of liver cancer as those of us with advanced liver damage are at increased risk of HCC. With cure of hep c that risk is reduced but it still exists. And see your liver specialist annually.

Best of luck

[Ashleyb]

I am on 8 weeks of Mavyret and am 2 days into my 7th week, so I am almost finished. After 4 weeks my blood work came back as undetectable! I had genotype 2 with a viral load of over 7.6 million and no cirrhosis without any prior treatment. I was worried about headaches as those were already part of my daily life before starting treatment, however, since the 2nd day of treatment I have not had a single headache. I feel very blessed as I have not had any negative side effects at all. I am not scheduled to have additional blood work until 4 weeks post treatment and will post the results here.  I wish everyone the best.

[Pctree]

Wow now thats the experience I want!!

So glad to hear it does work out for some!

[mpls]

Hi Ashley. Thanks for posting. That is so awesome that you are almost done with treatment and you were undetectable at week 4. Great news. I have been on Mavyret for 1 week now. No major side effects here either. I will get blood work after my 8 weeks on treatment, I wish i could at 4 weeks, I am already wanting to know what my labs are. I am Genotype 1B, no cirrhosis and also treatment naive. I saw another post where the person was still undetectable after 1 year after completing Mayvret (they were part of the clinical trials) This is so exciting. Keep us posted and I will do the same.

[Lynn K]

Congrats Ashley!

With the other DAA’s once you make it to 12 weeks post treatment SVR the odds of being cured are at 99.8% I expect this would be the same or better with these newest DAA’s also

[mpls]

Hello:  I'm starting my 3rd week on Mayvret.  Feeling great. I take my pills at 11 AM every day with food.  I read somewhere that the medication peaks at 5 hours and i feel great that time of day.  I'm finally getting over the shock that there are no side effects. Everyday i am amazed how good i feel. I work part time and I'm able to work an 8 hour shift without any problems. I do feel lazy when it comes to getting to the gym. I have worked out my whole life, 2-3 times per week, but I'm struggling getting to the gym... that's okay.  I am feeling very grateful to finally have the opportunity to get on this medication.

I'm thinking of all of you on treatment and wishing positive outcomes for all!!!

[darlene]

I started Mavyret 5 weeks ago and must say I am doing great.  I was diagnosed in September after having it for over 40 years also.  I expected to get some symptoms after taking it but have only gotten the occasional headache, probably about 4 times already.  Some one did mention high blood pressure and I have noticed that when I did see the doctor for my hep c my blood pressure was extremely high...I wrote this off as nerves the first time.  I saw the doctor again last week and my blood pressure was high once again. I have never, ever had high blood pressure and it is checked regularly so I am assuming maybe this is from the medication?  My doctor did call and tell me that my blood work showed that the hep c was no longer in my system but to finish the final 4 weeks.  I was immunized against Hep A and B last week.  Need to go again next month and then in July and also will see the doctor once and for all in another 17 weeks.  I have not been drinking since I have been on the medication even 3 weeks prior to that.  The doctor said that once I am off the med, I should only have an occasional glass of wine.Is this normal?  My liver showed minimal scarring (1) and obviously I did not get it from drinking so why no alcohol?

[mpls]

Hi Darlene - Good to hear from you and thanks for sharing the wonderful news about feeling great after 5 weeks and being undetectable after 4 weeks!! That's the best news ever!! I have to wait 8 weeks for labs, unless i cant stand waiting, then I'll give him a call. I have high blood pressure and I take medications for it. I've been monitoring my BP and all is well so far. Good luck to you. You only have 3 weeks to go!! Hang in there.

I was always told that when you have Hep C and drink, it's like throwing gas on the fire. HCV is a slow progressive disease that attacks the liver. Since our livers are already compromised due to HCV, we would be more susceptible to cirrhosis and liver cancer if we drink.  That's how i understand it, there are probably more people here to help you understand the complications it can cause. I quit drinking over 10 years ago, and prior to that when i did drink, It made me nervous and i always felt bad about it, knowing I had Hep C and it could cause further damage.

[Lynn K]

How safe is it to drink alcohol socially after you complete hepatitis C treatment with direct-acting agents (DAAs) and are considered cured?

https://www.mayoclinic.org/diseases-conditions/hepatitis-c/expert-answers/drinking-after-hepatitis-c-cure/faq-20121675

If I'm Cured of Hepatitis C, When Is It Safe to Drink Again?


https://www.healthline.com/health-news/if-im-cured-of-hepatitis-c-when-is-it-safe-to-drink-again-051415#1

[Somimaso]

Dear all,
I´m writing as a family member whose husband is infected with HepC, genotype 3. Unfortunately our English knowledge is not the best, but mine is at least enough to follow your comments.
His Mavyret Treatment startet 4 days ago and since then headache is his daily companion. Has anyone of you experienced if there is a way to get rid of the headache? Of course he can take some other pills, but many of them affect the liver again. Are there any homeopathic medicines?

I´m really glad I found this Forum and that you share your experience. :-)

[mpls]

I'm sorry to hear about the headaches.  Sometimes it takes a week or 2 for the side effects to go away when you start a new medication. I am not sure about homeopathic medicines. I take Ibuprofen 800 mg for moderate pain.  I have not had any headaches. Tylenol doesn't agree with me and makes me nauseous due to my Hep C. I was told to stay away from Tylenol. Be sure to drink a lot of water, dehydration can cause headaches.  Good luck to you.  I hope your headaches subside. 

[Lynn K]

Headache is a common side effect of hep c treatment. Most here have found it helps to try to be properly hydrated. The recommendation is to drink at least eight, eight ounce glasses of liquids can be other than water. That would be about 2 liters daily.

If he is not already drinking that much fluid it may help with his headaches.

Also common pain medicines like naproxen (Aleve in the US) or acetaminophen (Tylenol) should be fine to use but check with his doctor first for recommendations. I have much liver damage and my doctor says I should only take Tylenol but make sure I take the correct amount and do not take too much. Tylenol is safe when taken correctly.

As his body becomes accustomed to the medicine hopefully his headaches will decrease.

Best of luck to both of you

[lioninsunheart]

Week 3 on Mavyret and Recently Diagnosed with Liver Cancer.
Would like to share my experiences with anyone currently on Mavyret treatment by
email. My mind is fuzzy most of the time so navigating this forum is difficult. Email is more conducive to clarity. I hope I am not jumping on a thread or disrespecting this topic.
Peace and Love
Lioninsunheart

[email address removed by moderators]

[mpls]

Hi there and welcome to the Forum. Im at the end my 4th week on Maverick. I’m starting to feel a little fuzzy too. If possible, I would prefer to communicate through this forum, because I think it will be helpful to others who are also taking Mavyret  and I think you’ll get more support communicating here.  I’m Sorry to hear about your liver cancer diagnosis.   I’ve had no major side effects on Mavyret, except recently I’ve started to get some headaches nausea and tiredness. It’s pretty mild, and I’m still able to work. Hang in there.  I hope you stay in the forum.

[lioninsunheart]

Hi-okay, and I totally understand..Where to begin?
Yes, I started week 3 on Mavyret yesterday Sunday. My side effects are many and diverse. I also have Cirrhosis, high blood pressure and chronic rhinitis. I decided the
best course of action for me was to address each one separately and have done so. The Cancer was totally unexpected.
My side effect's on Mavyret have been nausea, trembling hands, insomnia, skin rashes, short-term memory loss, slurred speech, extreme blurred vision, fatigue, and hypervigilance.
  I have tried separating the side effects from my high blood pressure medications (Felodipine, Spironolactone, and Atenolol) and also the anxiety of being diagnosed with Cancer. So the mental, as well as physical effects, are becoming more dramatic each day and I have to balance them out continuously.
Since this is a Mavyret Forum I should concentrate on the treatment solely and try to help others as you mentioned.
First, before I took my first dosage, oh, by the way, I am on a 12-week treatment, I googled all the generic side effects and made sure I had the proper medications for nausea and headache. That done,I then prepared my home for adequate food, water, dog food, trash bags, downloading relaxing music, e-books, and ordered a new comforter. I basically stocked up on things that I usually go to town for weekly, and now have reduced to bi-monthly. This really has helped because I feel less than motivated to do anything but try to ease the discomfort.
  Trying to keep my lifestyle 'simple' is a necessity, while I'm also dealing with doctor's appointments and transportation. Luckily I have a dear friend who is driving me to and from appointments which is a blessing because of my blurred vision.
  The skin rashes and stomach discomfort are my main problems as it is hard for me to determine what to eat and at what time and try to keep some consistency there. Since I live alone with my little dog Shakti I have the freedom to set my own pace and cook when I want and not to force myself to keep to a rigid schedule.
  The skin rashes are awful and appear on different parts of my body at different times and don't stay long once I address them..I have been using 1% Hydrocortisone creme and a handmade back scratcher. The worst area is my scalp-the itching is endless and maddening and interferes with my sleeping. I have never had dandruff before taking Mavyret or any other scalp condition so this has been pronounced. They warn you NOT to use strong chemicals on your hair while undergoing treatment so I am consulting my Primary Doctor this Friday on this issue.
  Nausea comes and goes but I make sure I eat a muffin right after my dosage in the morning and some yogurt, this seems to help until I manage to cook my main meal of the day usually around 11 AM. Ginger Ale and Selzer drinks also help. I try to eat fruit or jello at night to help with any constipation and to keep things moving. I also take the generic Pink Bismuth Subsalicylate 25.2 mg. tablets whenever it really gets bad-these tablets are also anti-diarrheal.
  Insomnia has been with me all my life, however, I seem to dwell on treatments and outcomes more than usual after starting Mavyret and am now taking Trazodone HCL50MG tablets an hour before I go to bed..sometimes they work sometimes they don't. I also listen to relaxing music and have made playlists on my iTunes that I can loop. This really helps in falling asleep and allows me to refocus my mind on the music instead of things I have no control over. A human dilemma.
  I try to take a one hour nap in the afternoon. And walks with Shakti when I can..she appreciates that for sure..and I love her companionship.
  I have also tried taking NEWS FASTS, just shutting out the noise from the chaos of the world, especially with our government. This helps a lot. and is vital to my mental health.
  The trembling hands are awful. Last week my friend and I stopped for lunch on the way back from a doctors appointment and I could barely hold the fork to feed myself. This usually lasts for about six hours during the day and subsides in the evening. I can't fix this..but it is a definite Mavyret side effect for me.
   Short-term memory loss is annoying and slurred speech..these come and go. I realize some of this comes with my age 67, but it has worsened since I started treatment.
   Fatigue has worsened and is also a side effect of high blood pressure medications so it has doubled for me. I just try to flow with it and pace myself on doing household chores, exercise, and personal hygiene. No excuse to NOT do things or let things pile up. I mentally rally myself to compensate to get things done, especially planning and executing doctors visits and relax after the best I can. I am retired now so funding extra energy to work is not an issue.
   The hyper-vigilance is a personal thing and I can simply say that it is wearisome worrying about my friends having to help me when I have been totally independent all my life, but they sincerely assure me that it is not a problem and I believe them. The acceptance is the key and sometimes difficult to reconcile but I'm doing it.
   Humor is a must! Do NOT lose your sense of humor.
I keep my mind active and positive with my FB friends and friends here with me..it is vital not to sink into the abyss of depression. Stay focused and seek comfort and you will find it. Do not hesitate to ask for help.

  I hope this helps and hope some of these side-effects are only unique to me and you can escape their discomfort. In my case healing the Hep C will give my liver and the Cancer treatment a more desirable outcome and I can come back here in 10 years and answer any more questions as a true survivor of both.

  If you have any questions for me I would be glad to answer them if I can.

Thanks for being here.

Peace and Love
Lioninsunheart and Shakti
 
   
 

[mpls]

Hi Lion:  I just completed 4 weeks of Mavyret with very few side effects. I've read posts from approximately 6 others on Mavyret and they're all doing great. I wonder if your symptoms are from your cirrhosis and liver cancer.  I think cirrhosis can cause shakiness and itchiness.  In any event, sounds like you are all set up to fight the dragon!! I wish you well. I hope your symptoms will subside.  I hope others who know more then me will reply to your post.

[lioninsunheart]

Thanks so much I was hoping I was not being too verbose..and you are probably right about the myriad of side effects. Glad you are sailing through. Best of luck I will return soon..still glad you are here. 

[Sharpon]

I wanted to respond to the woman who said she had just started taking Mavyret in December of 2017.  If you are still taking it, you are probably on week 4 or 5.  I am 60 years old and got Hep C through a blood transfusion when I was about 18 years old (or at least that is what they think).  I have never really been sick with it but have carried it around for so many years.  I should mention I am Genotype 1a.  About ten years ago they convinced me to go through holy hell on the treatments of interferon and ribavirin for a year.  I became anemic, lost 50 pounds, all my hair and have never felt worse in my life.  At one point, they said I cleared but it came back very soon afterwards.  Such a horrible treatment and then to hear it didn't do anything but have a very negative effect on my body.   

Needless to say I was scared to go on another treatment but Mavyret has been wonderful - I have had very few side effects and (drum roll please)... after six weeks, my blood work came back "UNDETECTABLE".  Now, I am at 11 weeks, UNDETECTABLE!!!  My doctor told me the chances of it coming back are very very small.  The bonus is I feel great, better than I have in ages.   I should have added that the reason I went on it was because my fiberscan had a median liver stiffness score of 9.6 kPa and a fibrosis score of approximately F3.  Not good.   

I have one week left on the Mavyret and now I need to focus on rebuilding my liver cells.  I just wanted to let anyone who has gone through treatment and failed, that there is hope.  During my treatment, I met others with very similar stories and they are beating it.  These new drugs are working and you can be free of this horrible disease. 

[mpls]

Hello Sharpon 

Thanks for your post. That’s the best news I’ve heard all day!! 
I’m in my 5th week now. I’ve had a few side effects for 2 days this week, mild headache mild nausea & tiredness also a little weight gain. The sides are gone today. Several years back, I researched Interferon, Ribavarin, and Telaprevir plus others. I went in hep c  chat rooms, and was apalled of all the side effects people were having. It sounded awful. Then, come to find out you only have a 50/50 chance of success.  I heard new drugs would come out in 5-6 years, so I waited...

I’m grateful for these new DAA’s.  My doctor will only draw labs after I complete my treatment of 8 weeks. Hearing your news that you’re undetectable at 6 weeks is wonderful.

Also, I’ve never heard of rebuilding liver cells after treatment. It make since to me.  I looked it up, and it looks like it’s exercise and healthy eating.

Please stay in touch and I’ll do the same.  I’m not 100% convinced, but I’m very hopeful and confident that this medication will do it’s job and knock it out of the park, for good.

[Sharpon]

MPLS

I hope you get the same results I have gotten.  Yes, rebuilding your liver is just taking care of your body - exercise and good healthy foods.  You don't have to do liver cleanses, although I am sure they are good too, you can just watch what foods you eat - here is a list of good things for your liver...
https://www.globalhealingcenter.com/natural-health/liver-cleanse-foods/   

Pls keep in touch and let me know how you do!

[andrew j]

Hi Sharpon,

Thanks for the attachment.
I'm about a year and a half post-treatment, but those common-sense suggestions are still useful for a person like me.

Hi Lion,

Man - that's some package you're holding down there!

I really like the way you're able to so clearly articulate what's happening for you - and to logically organise ways to best look after yourself.
I don't have liver cancer or cirrhosis, but I was really unwell when I had Hep C - and I had some other stuff going on - and I think I tried to manage the situation logically, as you are so clearly able to do.

I guess your symptoms are to be expected, given the combination of conditions you have at the moment.
(These meds seem to amp up some people's symptoms) ...

I've had lots of that 'impaired consciousness' stuff.
It's a term used to describe both brain fog (associated with Hep C) - and hepatic encephalopathy (associated with cirrhosis).
If the 'Centre' isn't functioning properly - it needless to say brings on anxiety and hyper-vigilance.
For me - it's no more, or less, than a natural reaction to the powerlessness that comes with unwellness.

Dumb suggestions:
Are you drinking plenty of water?
That might help ease your symptoms.
Also - I've been using mild soap to wash my hair, for years.
It seems to work OK.
You might be able to get away with using something nice and organic?

Anyway - again - good on you for 'knowing yourself' - and for managing as well as you are - and here's hoping for some improvement on the medical front, soon.

Best wishes,
A.

[lioninsunheart]

Thanks Andrew,
  Some new developments. I went in for a Hep C/Mavyret screening Monday and they said my Liver #'s look better. YEAH! and then the Meltdown!
Yep a Meltdown. I was supposed to turn around on Tuesday and drive to Seattle to the University of Washington for my Cancer evaluation to determine the treatment, and then return to my Cancer doctor here and decide on the treatment and go for it!
  Backstroke: Last Friday I went out and did all my errands and had an appointment with my Primary and depleted all my energy. Saturday we had 8" of snow and I shoveled all through the day and then Monday to the Mayvret Dr. and then and then and then. You get the picture!
 I simply said ENOUGH! TIME OUT!
By this time (Tuesday) I didn't have enough energy to walk out to empty the garbage.HA! I notified everyone concerned (Dr.'s) and told them I have made the decision to complete my Mavyret Treament at the end of March and then when that is concluded we'll take on the Cancer (Hepatocellular Carcinoma) which is operable with a 94% rate of success, and exorcise the demon within. I simply couldn't be pushed into all this with No energy reserves and then hit a brick wall mentally, emotionally, physically, and spiritually...which I was headed for.
  I believe we all know our bodies pretty well by now and how much we can tolerate. I am not so arrogant and foolish to think I know better than the doctors but I felt it was just too much for me to handle.
  I am still dealing with the Mavyret itching but since I made the decision, they have subsided, still there, but minimized. I now know this side effect was partially due to stress, anxiety, and nerves. STAY CALM AND CARRY ON.
  I am now using an antibacterial shampoo which helps and taking Hydroxyzine HCL 25MG if it gets any worse. And get through this and beat this Hep C.
  The Mayvret doctor said that if my itching got any worse he would stop Mayvret and prescribe Harvoni..HUH? No thanks! I'm not going to let a little itching stop the progress.
  One striking thing I've noticed about this process is not one doctor has given me a dietary guide or plan so THANKS for the link above. I studied herbology years ago so have a pretty good sense of how to design a new diet, and will,
  As far as renewing the liver-YES-it is true and can happen with some TLC. I have been taking Milk Thistle and Dandelion Root tinctures for years since I knew I had Hep. C (when Interferon was the only treatment option). My liver numbers always went higher when taking these so I know they work. Might be of interest to folks here after their/your treatment.
  In summation, I realize that anything that would attack a virus like Hepatitis would have to be strong enough to be able to rid the body totally of the infection and would, at the very least, produce some annoying side effects. Take the good with the bad.
  Yes, I drink plenty of water and exercise weather permitting, but mostly NOW I try to stay calm and focused. I have placed myself on a NEWS FAST as I know it isn't healthy to stay immersed in the chaos of our country's needless upheavals and sufferings.
Peace and Love
Lionheart OUT!

[Lynn K]

Hi Lionheart

So sorry to hear about how tough it has been for you just wanted to say hi to you as it seems we are neighbors. I also see a liver specialist associated with UW medicine although she is in a facility in more North Seattle at NW hospital and medical center.

It is about an hour drive for me from Auburn

Wishing you my best and hoping you have an easing of your symptoms soon

Lynn

[mpls]

Hi Lion:

Good to hear from you. You do have a lot on your plate.  I like your plan of completing the Mavyret tx 1st and then dealing with your cancer, otherwise it just gets too overwhelming. I've had some minor itching too on my lower legs only. I use baby oil and a hair brush (weird) to scratch my legs because the itch is so deep. It seems to work and stop the itching. I don't know if its from Mavyret or just from the freezing cold weather. I also take hydroxyzine 50 mg at bedtime. It helps me sleep.  I'm not exhausted, but I do have low energy and I'm just taking it easy, hoping after treatment I will get my energy back. My major side effect is that I'm really hungry, (I've gained a few pounds) so trying to eat healthy and cut back on sugar.  I have 3 weeks to go. Ill keep you posted.  Hope you do the same.

[Type0Negative]

lioninsunheart
Hey there, and sorry you have to go through all the trouble of health issues. I agree with you that worrying is not helping your recovery, especially if it gets out of control. I was debating if I should reply to your posts, because what I am about to say would likely make you worry more, even if you already heard it all. But here I am- I will say it just in case it is something you did not consider:
 
The problem with healthcare now is that doctors give the patient too much freedom of decision. I often hear my doctor would say, "You can do A or B, and it is up to you". I like my doctor to tell me what is the best because he is experienced and qualified. I would recommend to listen very carefully what your doctor recommends regarding of when to start your cancer treatment. I will not tell you anything new, if I tell you that cancer can progress rapidly and there is no way to tell how it will behave. But have you came across of the alarming research on affect of DAAs on individuals with HCC? This was actually publication that scared leading specialists in the hepatology. There were many other publications disproving the findings and explaining it away but they could not explain away statistic. Sorry, I do not have the research available, but you can search for it. Basically what they found is that in patients who were successfully treated for HCC and in whom HCC was in remission, DAA treatment and HCV elimination triggered return of HCC, and it returned not with single tumor as it was originally noted, but with many small tumors. The way they explained it is that Cancer is controlled by the immune system. The inflammation of the liver caused by HCC helps to control the cancer cells from multiplying. When DAAs eliminate the virus, the inflammation decreases and there is no immune response to control the cancer. My understanding is that when Hep C is cleared and inflammation subsides, the risk of cancer progression is increasing. Are you signed up for e-mails from this site? If you not- I would strongly recommend it. The research was linked and referenced on this web site:  http://hepatitiscnewdrugs.blogspot.com/ Look in last year publications.

Hope you feel better. I should be starting Mavyret in a couple of weeks, if everything goes well. I will post under Considering TX" section about my concerns. Talk to you again. Typ0.

[Lynn K]

Hi TypeO

Thankfully those concerns about return of HCC and development of new HCC for those treated with the new DAA’s have been disproven.

The current opinion is there is no relation with increased risk of HCC and in fact the risk of developing de-novo or recurrent HCC is reduced. Although those with prior or current HCC are at greater risk of further progression of HCC than those who have never been diagnosed with liver cancer but they believe this is not related to treatment.

https://www.healio.com/hepatology/oncology/news/online/%7Bf6e3a18b-37ea-4f86-83a2-5aebc8b04f5f%7D/10-reports-from-2017-on-liver-cancer-incidence-rates-major-risk-factors

Eradication of HCV induced by DAAs is associated with a 71% reduction in HCC risk

http://www.natap.org/2017/AASLD/AASLD_24.htm

I also am hesitant to add that as lionheart has current HCC if she is able to treat her HCC sooner would be best.

But if she can’t manage both treating hep c and her HCC that decision is between her and her doctor. Sometimes we just can’t handle everything that is on our plate. I am sure her doctors have discussed her risks. I am sure she is doing the best she can.

Fortunately, hep c treatment is of relatively short duration so it won’t be very long until she can take up her next battle.

Thanks for caring

[lioninsunheart]

Wow-such responses. I just took my three Mayvret "Bombs" and thought I would touch in. I can't possibly answer all these concerns but really do appreciate them.
 My decision to wait was not countermanded by any of the doctors, in fact, I got the impression that it was more of a scheduling conflict than anything else, as I will need a new blood draw and MRI two weeks before I go for the re-scheduled Cancer evaluation and treatment.
 I am not versed in 'medicalese' but appreciate your thorough research. My "lesion" which was upgraded to its formal moniker "tumor" is about 1" in length and is operable with a high degree of success (94%). I am hoping it can be eradicated by external radiation treatments SBRT, the other options available are Microwave ablation, TACE (chemo into blood) can be done in Wenatchee 45 minutes away. The other options will have to be done in Seattle, Y-90-Surgery to remove, Cryoablation or RFA, and of course the ole Transplantation. Please don't spell check!

Excuse me while I scratch behind my ear-there-I feel like a dog with fleas sometimes but know it is a small cost for the intended Hep C cure. I just make sure I don't scratch in the line at Safeway.

So now I am three days into my decision and feeling like a huge weight has been lifted from me and am actually getting my strength back to continue my Mavyret and it's side effects. Point being I believe in my heart of hearts that when you are confronted by something as serious as a life-threatening health condition you must take a holistic approach to all the procedures and outcomes. All of what I am doing is the Western Medical approach with no considerations for the emotional or psychological impacts it has on the patient. No support net except 'Therapy' for these important and vital functions that are casualties, or can be, from having such a condition and the lack of personalization in the procedures. Thus my decision.

Taking some control of my healing or at least being able to make my own decisions regarding my own well-being was a major consideration to wait another 2 months. Taking responsibility. Owning your condition - which means proper diet, proper exercise, proper environmental influences, attitudinal adjustments and of course acceptance. All of which have never been addressed, at least, so far by my doctors.

Relaxing into Urgency? There I said it..sounds weird but kinda works for me at this point. I have been lazy regarding a couple of the above measures..but am finding a renewed optimism I didn't have just four days ago because I was literally exhausted.

  I have even canceled my first appointment with a "Talk Therapist" yesterday (I requested it last week in a moment of angst)..giving me even more space to draw upon my own experience as an herbologist and spiritual counselor. Time to draw from my own 'Well" and of course listen to others who can offer me insights into the psychology of healing.

Okay --time to go- the itching persists but my resolve is stronger. I am so sorry for everyone's different side effects - you have my sympathy. Remember a few weeks/months of discomfort may lead to a new life and a new way of feeling about yourself and your renewed potentialities.

  Thanks for being here and allowing me to ramble on.

Peace and Love
Lionheart

[Type0Negative]

Lynn

There is multimillion industry that benefits from these treatments. It is not first time in the history that certain researches were told to "shut up" and stop ruining it for everybody. If you can find the original research that showed return of HSS after DAA, you will see that these were real people with real cancer returning with multiple tumors where originally there was only single tumor. You can call it coincidence much as you want but you cant explain away statistic. My conclusion is that the risk is still exists for those that had already HCC and for those that might have hidden HCC.

I was amused at the general atmosphere of exaggerated positivity and reassurance at my specialist's office. They told me- there will likely be no side effects or minor side effects. 

My side effect's on Mavyret have been nausea, trembling hands, insomnia, skin rashes, short-term memory loss, slurred speech, extreme blurred vision, fatigue, and hypervigilance.

Wow! Do I really want to put myself through? Please, keep sharing. I prefear to be prepeared to worse, hope for the best. I am actually still wondering if I making a mistake by signing myself for this.

lioninsunheart
I attempted to look up HCC prognosis and it was not very optimistic. You probably did more research than what I found in first 15 minutes. I found these 2 articles. One is on procedures you mantioned, another- on medications. The one was about 2nd line medications and it said the tumor progressed in 5 months in those treated and 2 months in those unreated- basically treatment had its limitations. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3808569/

In this article they talking about different procedures- note that it is 2005 article. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2361778/

My point is- try to overcome the barriers to your treatment such as transportation. 2 months can make significant difference in your prognosis. Do not delay. Wish you well.

[Lynn K]

Hi typeO

I guess I just am one to believe folks like the national institute of health. They among others were the ones who initially reported about the concerns about a possible link.

At that time there were not many that had treated with the new DAA’s and even fewer that had a reoccurrence if their prior HCC. There just was not enough data available to draw solid conclusions.

We even here sadly lost a kind and wonderful member here to a de novo case of HCC. She had had hep c and like me had also had cirrhosis for a log time.

As more data has become available studies from many sources have said there does not appear to be a link to DAA’s treatments causing cancer. Having already existing cancer is the risk per the studies and I personally believe in their honesty and integrity as scientists and medical researchers. But I totally understand that there are those who do not share my opinion.

Most people have only minor side effects while unfortunately there are some who have a harder time with treatment.

Maybe my multiple prior treatments desensitized me to the new DAA’s but for me even with longstanding cirrhosis treatment was almost too easy after what I had been through with interferon. I felt a little guilty that I should somehow have to suffer to be cured. But really for most people here they had few problems. That is not to dismiss what some have experienced with their treatment I truly feel for those less fortunate who do suffer from treatment just to eridicate the villainous hep c virus.

I hope you find that you are one of the group that has an easy time with treatment

Good luck

[lioninsunheart]

Thank you for your research and link. I do appreciate your concerns. I still maintain that since I made the decision my side effects from Mavyret have lessened. It is now day 5 and my severe itching has mostly gone away.YEAH. Nerves? Stress? Trembling hands? Gone. Short-term memory loss? Much improved. Slurred speech? Gone. Insomnia? Much improved with help of a single dose of Trazadone before bedtime. Blurred Vision? Can't tell as it also coincides with my Chronic Rhinitis which puts undo pressure on my sinuses and my need for a new eyeglass prescription. Now not necessarily a side effect from Mavyret but did accentuate the problem. Hypervigilance? Has lessened since responding and reading posts from this forum. Thanks. Keeping my condition a secret and going into a self-made isolation hasn't helped. Fatigue? Well, I still have this, which is also a condition that coincides with my High Blood Pressure Medications. All my medications warn of drowsiness and dizziness.
  When I had my appointment with my Mavyret doctor last Monday my blood pressure was 104/59 which was unusually low. I try to stay in the 120/68 range and feel less tired as a result. I have now monitored this all this week and have stopped taking Felodipine and my blood pressure has stabilized to 119/68 for two days now. I have removed my sugar intake dramatically and started having sugar cravings three days ago. They are mostly gone. Have exercised a little more and continue on a News Fast. I generally feel much better, calmer and able to think more clearly.
  Since stress has been proven scientifically to cause heart conditions why should I not apply that same science to my own condition? Including delaying my C treatment? I maintain that my own side effects are probably unique and most on this forum will not have them-a blessing! But I would rather go into the C treatment Hep C free and with a much stronger positive attitude and constitution.
 I am not so naive as to think I have all the answers but knowing my body will be the first to tell me what my mind may not necessarily believe or accept is worth exploring in a circumstance such as mine.
  I also know that I will have to deal with the Cirrhosis issue as well.
All in all, it has become clear that the Hepatitis has caused all the other ailments now pronounced and in need of treatment.
  I'll keep you apprised of my results as I hope you also will with yours.
I remain steadfast and hopeful.
Peace and Love
Lionheart

 

[Type0Negative]

lioninsunheart

I admire your strength and confidence. I was trying to find some data on how fast the C can progress and I did not find any easy answers, but main conclusion is that it depends on the general health and the liver health. I totally understand that doing other procedures while on treatment sounds like very bad idea, also, I would consult with very experienced oncologist who can clearly  tell you what is the risk of progression in 2 months. Some cancers can make significant advances in short time, which can change stage and change from being localized to invasive. I think you are very wise and strong person and it will help you to recover.

I heard some people saying- their BP increased, yours is decreased, this is interesting. My BP is mostly on low side, I have problem with increased heart rate and don't tolerate any caffeinated beverages because they increase heart rate. I already have hand tremor naturally, so if treatment has this side effect, it will likely be significant for me. I should not guess how it would be like and just wait for the time to start and see what will happen, but I am very nervous. Mostly because I could probably wait few more years for the better time in my life or for better treatments. The last thing I need is to make my health worse due to this treatment. When I was young, I had no fear of medications. I could try anything if someone already tried it and assured me that it was safe. Now days I have this weird medication anxiety- it is probably because I have much more knowledge of pharmacology. I know- I will likely look at my first pill for hours and afraid to take it (them? I heard it is 3 pills?). Currently waiting for approval. Thank you for sharing your experience and be there for others.

[lioninsunheart]

Hey TypeO...I waited three days after I received my first shipment of Mavyret and went and stocked up on Nausea and Headache meds after I researched 'possible' side effects. I live outside of town so I didn't want to have to scramble to and from home to address any of these side effects. If you have followed my posts then you will see that I have several other conditions that I have had to consider in continuing treatment.
  Three days ago I quit my Felodipine (HBP) meds I have been taking for almost 10 years. And my BP has stabilized to a nice 120/68 where it should be. The swelling in my right leg has gone done and I am beginning to feel better overall and gaining more strength mentally and physically to try to adjust to the Mavyret, Now 5th week.
  I'm not an expert but if you deal with the anxieties surrounding the starting of your treatment you may find that your hand trembles and stress levels will decrease. My hand trembles have almost disappeared. This may also be a result of weaning myself away from SUGAR, which I have been doing for the last 8 days.
  I fear that my posts have made you nervous..so sorry..not my intention. I had to move to Washington State from Arizona to get the approved Mavyret treatment..so I was excited when I was approved.
  I have also stopped drinking coffee and now have replaced it with Green Tea. I have also stopped using white Basmati rice and replaced it with brown rice. More fresh broccoli and spinach, more olive oil, more healthy and liver fortifying foods. I have also ordered Tumeric (with black pepper) and Garlic capsules. Much researched supplements I have procrastinated in getting. I am basically starting a diet that will help with all the other conditions as well.
More exercise, better sleep patterns, News Fasts, and walks in Nature.
 I am scheduled for a new MRI on the 19th of March and blood draw to see how the ole tumor is going for treatment in April..having concluded my Hep C treatment, made major adjustments in my diet and attitude and stress levels should prove beneficial to the results.
  You may, like me, have to tweak your current medications and lifestyle choices to find your comfort level. It will be worth it-believe me.
  I hope I have allayed at least some of your nervousness, be brave and I hope you are approved soon. I think it's just great to be 'approved of' don't you?

Peace and Love
LionHeart
 

[Type0Negative]

Thank you for your reply. No, you did not scare me. It scares me more when my Dr. office sounds like everybody there are in denial about any possible SE. I will start my own thread when/if I get approved, but briefly- I have essential/ familiar tremor for years now- I heard it may have something to do with Hep C but I am not sure. I am more scared about Tinnitus other posters reported because it can be ototoxicity. I need my hearing intact. I am freaking out because I got myself it to some serious financial investments, my boyfriend is an alcoholic, and my boss wants to go on long vacation right in the middle of my treatment (I have very demanding job). I cant tell anybody what I am about to do and everybody preoccupied with their own drama. I should of do one thing at a time, but opportunity does not come one at a time- when things start changing, everything changes at once. 

[lioninsunheart]

Type O-you can write me anytime at shaktishiva2000@yahoo.com for personal concerns. It's a process that, I feel, should be taken seriously and given plenty of room to conduct. I also have Tinnitus, I believe pretty common in the larger population, had it for years. I have always thought it was because of too many rock concerts in the 60s/70s and listening to my stereo on high for decades. After taking Mavyret it certainly increased and oddly enough it stays on one decibel all day and night and doesn't waver, the timbre is intense and constant, however, I have no trouble hearing otherwise it's just a background buzzing of sorts I am living with. Ototoxicity? Wow-don't know that word. Will look it up.
  What I do know is that most of all the side effects I have mentioned in past postings have either lessened or disappeared. Which means I believe I have hit a tolerant level of comfort all because I have adjusted my diet, my stress, and my acceptance levels. I suppose also I have surrendered to the obvious potency of this drug.  De-toxification has to be a side-effect in and of its self. A drug that has the power to eradicate Hep C must come with some physical cost, a predictable by-product that our doctors usually don't address, in my case, never addressed. I am not angry because I know that the doctors have not treated me for anything during the course of my life so they do not know the tolerances I can or cannot endure in accepting an experimental drug like Mavyret. I realized this when on my last visit my doctor said if my itching gets worse he would change my subscription to Harvoni or some other drug to lessen my side effects? HUH? He never suggested I reduce my stress, cut back on the sugar, and exercise more. No-I had to assume that part of my healing myself by being sensible and knowing my own body. Type O, the itching has almost gone away completely now and I have lost 4 pounds, however, I sorely miss cheesecake with a nice layer of blueberry topping and chocolate chip cookies..and, well you get the picture.
  If I had insurance that would cover Naturopathy and Massage Therapy-I would join these therapies hand in hand with my treatments. But I don't. Life goes on.
  I still remain hopeful for an 'Undetectable' result.
Stay calm..remove the obstacles to a stress-free treatment and find a safe space in which to undertake it. Sounds easy..but I'm sure if you can do this it will bolster your ability to heal the Hep C and use the Mayvret to your benefit and not as a detriment, or just one more thing you have to endure. Find a way-it's that important. And be gentle with yourself. I'm sure everyone here will agree.
Peace and Love
Lionheart

[Type0Negative]

The ototoxicity is very serious. It means permanent, irreversible hearing damage. There are several ototoxic drugs and when/if this side effect begins, the medication needs to be immediately discontinued. From Wiki:

Ototoxicity is the property of being toxic to the ear, specifically the cochlea or auditory nerve and sometimes the vestibular system, for example, as a side effect of a drug. The effects of ototoxicity can be reversible and temporary, or irreversible and permanent. It has been recognized since the 19th century. There are many well-known ototoxic drugs used in clinical situations, and they are prescribed, despite the risk of hearing disorders, to very serious health conditions. Ototoxic drugs include antibiotics such as gentamicin, loop diuretics such as furosemide and platinum-based chemotherapy agents such as cisplatin. A number of nonsteroidal anti-inflammatory drugs have also been shown to be ototoxic. This can result in sensorineural hearing loss, dysequilibrium, or both. Some environmental and occupational chemicals have also been shown to affect the auditory system and interact with noise.

My living depends on being able to hear. I can not afford any damage, especially in , my 40s when I have no plans to retire. If this drug is ototoxic, the research should of been done to see if the damage is permanent. If you saying- the ringing increased- to me- it is almost deal breaker. So do I want to begin and see if it affects my hearing? I could wait at least another 5 years until they collect more data.   

[lioninsunheart]

Oh, my..sounds serious enough to do more research before you embark on a Mavyret treatment. I did look up this condition Ototoxicity yesterday but didn't dig any deeper than it's precise definition. You know better about your body. I hope I didn't dispel you from your treatment I would never ever want to do that. Please do more research before you make a final decision. Maybe it's just not a risk you would be comfortable with in lieu of your lifestyle. To be clear though, my hearing is not impaired in any other way except for the continuous droning, which might be enough to accentuate your existing condition, I really don't know. It is good, however, that you are concerned and looking for solutions. 5 years seems like a long time to keep having this hideous disease but weighing your options is highly commendable.
Love and Peace
LionHeart

[lioninsunheart]

One more thing Type O..you do realize that what insurance you have today to cover your treatment may be different in five years. The chaos in the government and threats to changing or reducing Medicare and Medicaid benefits is enough, I would think, to convince folks with Hep C to do it NOW while these programs still exist in their current form. $26,000 is a big nut to crack for most folks in this country. This was one of my first considerations in moving to a Blue State where I feel more protected by our state government and undergo the treatment here and I was right. Might be worthy to consider.
LH

[Lynn K]

On that note about cost alone I am so glad I got treated when I did while I had good insurance. I did have to fight with them but was eventually approved for 24 weeks of Harvoni which at $1125 a pill the cost to my insurance was $189,000. No way could I have ever hoped to pay for this.

As far as waiting for a while to see if there is an evidence of hearing damage from Mavyret later found I guess the condition of your liver currently would be the determining factor. If you have no liver damage likely it would be a safer choice than if you have F3 or F4 (cirrhosis) in that case time would be of the essence.

But if you are considering waiting on the basis of anecdotal reports of patients online you should discuss your concerns and possible benefits and consequences of waiting with your doctor.

I did find this about Harvoni and hearing loss of course Harvoni and Mavyret are different drugs but Harvoni has been available for about 3.5 years now

https://www.ehealthme.com/ds/harvoni/hearing-loss/

Summary

Hearing loss is found among people who take Harvoni, especially for people who are female, 60+ old , have been taking the drug for 1 - 6 months, also take medication Candesartan Cilexetil And Hydrochlorothiazide, and have Hepatitis c. This review analyzes which people have Hearing loss with Harvoni. It is created by eHealthMe based on reports of 10,826 people who have side effects when taking Harvoni from FDA , and is updated regularly.

On Jan, 28, 2018
10,826 people reported to have side effects when taking Harvoni.
Among them, 6 people (0.06%) have Hearing loss.



So the risk seems greatest for females over 60 and still that was only 0.06% however a cause and effect relationship has not been established only that the symptom was observed.

Best of luck with your decision and any future treatment you may decide to go with.

[mpls]

Just checking in with 12 days to go on my 8 week Mavyret treatment. Still feeling pretty good, not too many side effects to post. Just the committee in my head when i take the 3 pills, I think, this must be one potent drug to kick this virus... wondering what it is doing to me, will there be some long term side effects, etc. Trying not to worry about that. I cant wait until EOT when i get my labs drawn on Feb. 28.  I have heard of approximately 7 people on Mavyret and they are undetected at 4, 8 and 16 weeks and longer. I have not read one post where the virus has returned. This is a newer drug, so maybe that's why.  It sure leaves me feeling hopeful. Maybe this is the one that will cure us all. I still have some doubt, but we will have to "wait and see", as they say. I will post my results as soon as i get them. Best wishes to all on treatment. Trying to stay positive and happy that i have the opportunity to be on this new drug.

[lioninsunheart]

Great reporting mpls and Lynn K. Thanks for all this information, it really helps.
 I've already talked to my Primary here in Chelan about lasting side effects from Mavyret and have agreed that we will discuss that after the treatment, so I have also been concerned. Time will tell.
  An aside.
I have started waking up 2 hours before my morning dosage (8:15 AM) so I can read and respond to my emails, plan my day, and of course, take Shakti for a long walk. I am retired as of a year ago so I have the luxury (?) of planning around the treatment as I now know it's effects that have remained constant.
I usually talk with my dear neighbors here during the afternoon for social interaction and humor and usually take an hour long nap around 1:00 PM and of course another long walk with Shakti.
 I can feel the Mavyret surging through my body quite distinctly from 1:00 PM and through the evening hours and night--small snacks quell the feeling pretty well.
  The reason I get up 2 hours early now is so I can have a 2-hour window of clarity and energy to do small tasks before the fatigue sets in and the overall effects take-over my body and slows my mind. I enjoy listening to music in the afternoon and evening hours and planning my gardens for this Spring. That's pretty much all, except the days I need to go to town for shopping and errands, usually done early in the morning as well.
 I know this is a personal agenda..but I am starting to feel better now (5 weeks) that the itching has gone, the trembling has gone, the slurred speech has gone and I just feel stronger mentally and emotionally.
 Gotta go now and take my three pink pills and cook some steel-cut oats and maple syrup.
Peace and Love
Lionheart

[Lynn K]

Happy to hear you are beginning to feel better

[lioninsunheart]

Thanks Lynn K
 A rough start but finally we are on a smooth road waiting for Springtime!
Love and Peace
Lionheart

[Type0Negative]

You all are very brave. So glad. Mpls, you have no side effects and almost done. Lioninsunheart, glad you able to manage your symptoms. Interesting- what do you mean- "I can feel the Mavyret surging through my body quite distinctly from 1:00 PM and through the evening hours and night--small snacks quell the feeling pretty well."- what do you feel? I promise not to feel the same. lol.

I got approved and should start this week. And my boss is taking time off the first week I will be on the treatment. I have to take over all the work, I can not feel weak and tired. Also I would prefer to be tired instead of energized- stimulants scare me. Wondering if the dose could be smaller- did they even do any trials with the smaller dose? (Not thinking to take less, just wondering).

[Lynn K]

Not sure if they tried different dose sizes but there is only one dose size available so not really an option for any of us. Cutting the meds is not accurate an effects the rate of absorption and anyway not permitted.

When I was taking Harvoni which is not the same but somewhat similar I also felt kind of a surge at first. Not really a hyperactive feeling like coffee more like a feeling of power like feeling strong kind of energized vs feeling hyper if that makes any sense.

[lioninsunheart]

Type O and Lynn K,
  WOW-okay then, the 'surging' I feel is what I would deem as a normal reaction to taking such a powerful drug. It doesn't bother me because I realize it's going after the Hep C in my body. Maybe I am more sensitive than others..not to worry
Glad you're approved and still asking questions. Hooray!
 I'm now on week 6 and just received my last supply of the lovely pink pills. My co-pay is $3.60 for each monthly supply (3). Which I gratefully pay and place a "Breast Cancer" stamp on each payment. Pay it forward!
 It's curious why they rushed the entire supply to me but it might just be the new proposed budget the GOP is pushing that will cut Medicare by 30% and Medicaid, etc. There's no way it will pass but Big Pharma might just want to make sure they are paid just in case. 
 I have been really encouraged by others reporting they were cured in just 4 (if I'm correct) weeks so I have an appointment with my Primary this Friday and I am going to ask her if she can do a Hep C blood draw. Nothing from my Hep C doctor. I'm, well, curious you know. Seems my Hep C doctor (Infectious Disease) doesn't follow-up regularly which is no surprise. I'll see and report back. K?
  Good luck and
Happy Valentines Day Courageous Ladies of the Hep C Clan

Peace and Love
Lionheart

[Type0Negative]

I will post in this thread because we already talking and it feels safer here with other posters. So I took the pills for the first time. Wow. Who ever said- they had no side effects, must be very fit and healthy person. I can not say it was a rollercoaster, more like riding in a cart on the bumpy road! It is an upper and downer at the same time! I felt energized and drowsy with my states changing every 15 minutes. I felt lightheaded and lightlegged in first hour and it was hard to focus on the work. I had to fake "my normal self" and my coworkers asked if everything was ok with me. The worse part is it affects my heart rate and gives me tachycardia. This freaks me out. I had pulse of 115 just by sitting at my desk and over 120 by walking 20 steps to the next door office. I been drinking plenty of fluid and ate food- actually it's after the lunch that it got worse. Then after about 6.5 hours in to the ride, I felt like the Pandora box began to close and it slowed down. But I still could not fall asleep as I normally do after work. Wondering if I will sleep at night. Please, tell me it will get better. I am not fit and dont drink any caffeine because of this same problem, but this does not feels safe. Thank you.

[mpls]

Hi TypeO. It will get better. Lionsheart had many side effects when she started Mavyret and she states in one of her posts that it did get better.  Lots of times when starting a new medication it can take a week or two for the sides to go away.  Sorry you are experiencing such bad side effects.  I was very concerned about side effects because I work too and I wanted to be able to function at work. I am one of those who has had very mild to no side effects and I do feel very fortunate.  Hang in there.  I have 3 days left and get labs done on Feb 21. I will keep you all posted.  I am glad you feel comfortable posting here.  I like it too since I don't share much with friends and family.  They just don't get it!!! Peace and love to all! 

[Type0Negative]

Mpl, thank you for the encouragement. I am glad that you almost done! I am sure it was not easy.
 I was able to sleep last night, woke up in the morning feeling sober, but soon as I got ready to have something to eat and take my medicine, the heart rate went up with all the palpitations and chest heaviness and would not go down. So I called the on call physician. He told me that such side effect is not known and that it must be me. Asked if I have history of anxiety (who doesn't?), and suggested that it may be psychological. Told me- I have 2 options: first- to take it and see what will happen, second- not to take it. I decided to wait to calm down and was 3 hours late to take the medicine, and it did not go away. So I decided to take it. Strangely- after I took the medicine, in about 30 minutes I began calming down and felt better. This must be one of those medicines that make you feel bad when it wears off. Do you think it can actually be anxiety? I thought I am in control of my body. That if I am worrying about something, I know that I am worrying. I was scared to take the medicine, bun not that much scared to experience 3 hours of palpitations. I thought the side effect caused my worrying, not my worrying caused the side effect, or am I wrong? So I am waiting to see how I will feel when it wears off tonight and tomorrow morning. Thank you for reading.   

[andrew j]

Hi TypeO,

From my point of view, you are describing a fairly normal treatment experience.
Like Lion - you are reasonably sensitive and self-aware, and like him - you are able to give a lucid, articulate account of what's happening for you.

Most people describe a broadly similar experience to yours.

Certainly - I can relate to what you write from my own experience - even though I treated with Harvoni, not Mavyret, and I was coming from a very different place to you.
I was really unwell when I had Hep C - and the side-effects were something I could positively revel in - so different were they to what had been happening before!!

I can so relate to that slightly breathless feeling ... that tachycardia-type experience you describe.
(You don't want to be experiencing actual clinical breathlessness, though! ..)

Try to relax - and Hang in there!
You're doing fine!

(.. Having said that - only you know how you feel - and that cardinal rule trumps everything else, of course) ..

The accounts I've read of people experiencing adverse reactions to these drugs typically indicate much more serious situations / side-effects.

Hoping that you are doing OK today.

Best wishes,

A.

[Lynn K]

For me I didn’t notice much but then again I have literally sleep through a freight train going by my camp site.

I am a relatively insensitive person not much phases me. Might explain my lack of symptoms I am oblivious to a lot of things which I guess is a mixed blessing.

[lioninsunheart]

Type O..Wow--sounds like you're going on a hayride. So sorry, and I totally sympathize with you. Anxiety must be the key to your discomfort so, I believe, like me, you will learn how to moderate the treatment and it will indeed lessen. I told my Primary yesterday that I couldn't possibly imagine anyone going to work during this treatment, or raising children or doing anything but being able to relax into it (or hold on) and go for the healing. Work sounded awful but you endured.

I first heard of the treatment in Arizona when a friend told me she had the treatment (Harvoni) and was cured and had felt absolutely no side effects at all. That was so promising. In lieu of my other conditions, I just wanted to get it done and hope for the cure, side effects or not. Unfortunately, we are the ones that are being adversely affected. Reducing your stress and anxiety will help you, it worked for me- if it persists please ask for an anti-anxiety medication especially for work. I did, and my Primary prescribed me Ativan. I haven't taken even one yet because I got it to deal with the crazy-making thoughts of having Cancer which has totally subsided. I'm stronger than that and don't want to start being dependent (emotionally) on drugs..but in your case, especially at work, perhaps it will help.
  I'm still having to deal with stabilizing my blood pressure and working with my Primary on that..there IS some anxiety around that, although she explained it was totally normal to be anxious about having Cancer and also go through with the Hep C Treatment (Duh-she's right of course). So I can let this one issue go with a slight variation in my Blood Pressure meds.

The side effects of Hep C and High Blood Pressure meds are totally similar. I asked my incompetent doctors for years "How do I recognize Hep C symptoms apart from the High Blood Pressure Meds -side effects?" They always gave me a "Deer in the headlights" look and went on to discuss the weather. I really wanted to know because my energy had dissipated to 50% less than my normal output. It was horrendous and still, I have to deal with fatigue daily. And yes, Mavyret has added to my fatigue. Which has been a total bummer for a once active person like me. Got to roll with the punches. Accept what is.
  I hope you stabilize your side effects and heart rhythms as soon as possible Type O. Take it as easy as you can and pace yourself.
  I am NOT going to say hang in there. I prefer to say write us as often as possible and don't give up. It will be worth it.
  Oh yes, and Mpls I'm a guy, not a girl. 
Peace and Love
Lioninsunheart
 
 

[lioninsunheart]

Oh yes - I forgot.
My Primary has ordered me a Hep C blood draw for this next week to monitor my progress since there has been no follow-up from my Hep C Doctor. I am, well, curious. Also, I just started WEEK 7 today and it's snowing again.
Peace and Love
Lioninsunheart 

[Type0Negative]

I cant post when I have company...Real quickly: woke up at 5 am. Palpitations, weird sensation of emptiness and pressure in the chest. Headache- it started yesterday. I had some water and forced myself to eat a sandwich (at 5 am), it helped me to sleep another hour, wake up, drink water, sleep another hour or two... My heart rate initially was at 100-110 while laying down. I felt drugged. Fast forward- got up at around 11 am, having minor chest pains. I dont like it. Had a cup of water (no tea) with some food. Pulse went 120 arrhythmia (premature beats). I took the pills. Pulse 100 now. I dont know how much of this I can take. I feel weird. I am in clinical trial, I am sure they will not want me to discontinue. But I am going to make them to include tachycardia in to side effects. I am scared. Should I make appointment to cardiologist? I am afraid- he will give me "deer in the light" look. My research office has EKG machine, I can go tomorrow if the open, before I take pills, when it the worse. Lionisun, are you taking any beta blockers? Is it ok with Mavyrett? I think it could help me, but I dont want to take whole pill just for morning effects. Need to have something in case of emergency.   

[andrew j]

Hi TypeO,

Hope you don't mind me butting in.

If this is how it is - tell them.
That's what they're there for.

[lioninsunheart]

You may want to google: I am taking Felodipine 5mg in the morning and Atenolol 50mg in the evening. Am going down to 2 mg Felodipine this next week.
  My first two weeks were similar. Taking little snacks throughout the day helped stabilize the effects, and drinking lots of water.
  It seems you don't have a support net there except for us. I have been leaning and depending on my Primary Doctor to help me stabilize and deal with side effects - she is doing a great job, I totally trust her and all her advice has been spot on, with a few tweaks.
 A clinical trial? You don't need to battle anyone for expert advice- Andrew is right. If you are being treated as a guinea pig than you should not complain to them (it won't matter-they will use your complaints as data and nothing more). Don't you have a Primary doctor there in your city? A family doctor that knows what you are doing and are familiar with your medical history? That should have been #1 on your priority list. I am not an expert but if your irregular heartbeats and variance in blood pressure results is worrying you-by all means go for the tests and then at least you will know and can take measures to stabilize it. Also - maybe the stress of dealing with your overall side effects is making you anxious and affecting your BPressure. It also seems that you are trying to keep all of this a secret from your family and co-workers??? Right there would cause anxiety and stress. I am really feeling for you and there is no need for you to suffer..do what you can to get the facts-make your adjustments and proceed..that's what I have been doing. Hopefully, others here can also guide you through this critical time. Try to relax and try to get as much sleep as possible. Easy for me to say-right?
Be At Peace
Lioninsunheart

[Type0Negative]

Thank you for all nice replies and support. This morning was easier for me. The HR stayed under 110. I developed another problem that freaked me out, but i will try to deal with it. My primary care doc told me up front, he is not keeping up with this topic so he would not be much of help. My GI team is very good, they did a lot of research back to interferon ara, they just busy, they dont provide companionship services. Lol. 8 pm. Mavyret high. It is deffinitely upper, i just dont like the rebound effect. My vital signs are normal now but when the drug wears off, everything destabilizes. I am wondering how long it may be unstable after the end of treatment and if there is dependancy element. Looks like my body already freaks out when medicine wears off, what if it gets used to it and would remain unstable without it. You, guys come back and post about your transition to drug free living, please! ...i am not looking forward to mornings. Have to work tomorrow and it will be busy, probably, after long weekend. Have to try to make it. Thank you.

[andrew j]

Hi TypeO,

When you think about it - our bodies are going through a profound transformation during treatment, as we try to adjust to the rapid removal of an invasion that may have been affecting us for decades.
Our metabolisms, our immune systems - our whole body functioning is trying to recover.

I am a year-and-a-half-or-so post-Tx - and I think I'm still recovering .. still healing ..
Trouble is - I'm now 60!! ... so there are changes in energy levels etc. associated with that, too.
(.. And some other things!) ..

I found that the end of Tx wasn't an issue.
As expected - the drug(s) just quietly left my system over three or four days - and
that was it!

As I posted above - I was really unwell when I had Hep C - and for many years - so there was, and has been, a certain emotional adjustment to make because of that.

If there's an upside to your side-effects, I guess it's that they come and go.
I'd be worried about some of the things you've described if that wasn't the case.

I only got a few aches and pains in my joints; the odd transient headache ..
... Some fatigue, a bit of nausea ... and that odd energy surging we've been discussing ..
.. A few other bits and pieces .. all of it mild, though.
Plenty of water - and some decent food, seemed to help with these.

Anyway - thinking of you - and hoping that those sides start smoothing out for you, soon!

A.

[Type0Negative]

Andrew, thank you for your post. Glad you are over with it. I could wait until I am 60, but I probably would not be able to handle it then.

Today was awful. I think the pills are different. Can it be that they have different dose or combination in them? Yesterday, I had some hours of not feeling any effect other than energy, today... I had to work and I barely survived through the day. Had this awful pressure and tiredness in the chest with occasional pains and frequent tachycardia. And tonight I feel drugged again. I dont understand- I felt better last night. I probably ate less today because I did not have appetite and I think I am scared to eat because it wakes up the drug and makes me feel it more. Andrew, there is a popular believe that the drugs killing the virus and body needs to adjust. My understanding is that the drugs do not kill the virus- they just dont allow it to multiply but the existing once just dying it's natural death. What is the lifespan of single unit of virus? It probably takes time to chaise each one deep in the tissues, and possibly in the brain. I am wondering if this particular drug passing brain barrier- the way I feel- it must be all over my brain. Any way. It better starts to get better, otherwise, I dont know if I can make through 8 weeks of this. Thanks.

[Lynn K]

I tried to search the lifecycle of the hepatitis c virus and how long an individual virus particle can exist in the blood stream but they really did not discuss that from what I was able to find. Mostly what I found related to how the hep c virus invaded the liver cells and creates copies of itself as well as hijacking the liver cells to reproduce the hep c virus as well.

As far as the consistency of dosing per pill there should have no variation across each dose of a medicine. That is likely a part of the laboratories certification process, the ability to produce consistent dosing. There must be no variation of dose quantity between pills. That would be both wasteful and potentially dangerous with some medications.

[lioninsunheart]

Wow, Type O,
If I can be any assurance to you. I am in Week 7, and I must tell you that every day is different for me regarding the treatment. This morning I had to drag myself out of bed and it has taken me up to now to at least focus on today's chores-especially eating. Just took a long hot shower and fixing a muffin, I have very little appetite. Might be the weather -16 degrees right now, not really. Everday is totally different than the one before on how I feel physically-it's unpredictable, at least in my case.
  Thanks for your research Lynn K. and your support Andrew and mpls!
Different pills and dosages? I don't really know but highly doubt it.
 Like I have posted before I have a 5-hour window in the morning in which to get any physical chores done for the day and then the fatigue sets in for the rest of the day. I know you don't have the luxury of staying at home during your treatment, is there any way you can take sick leave or vacation leave on your job? Just a thought.
 You are feeling drugged because you are 'drugged' - it's the short-term sacrifice we must accept to rid ourselves of this debilitating disease.
  I am like Andrew. I wasn't diagnosed with Hep C until 2003 when I had a mini-stroke.I never knew I was carrying the virus up until then. I traced back the possible reasons how I contracted it and discerned it was in the late 60s or early 70s so I have lived with it most of my life. I will be grateful and glad to be rid of it is what I am saying and at your young age you are physically stronger now than you will be when you reach 60- I wish I had known at 40 but then there wasn't a treatment except for Interferon then, which I have always refused to consider because of its long-term effects on my immune system, etc.
 I wish you had a qualified 'infectious disease' doctor you could counsel with-to help you through this.
  But we are here to hold your hand and heart. Keep writing.
Peace and Love
Lioninsunheart
 
 

[lioninsunheart]

Type O,
 If you go back through my posts you will see that I went through hell for the first 3-4 weeks of treatment but have made major adjustments in my diet, a frequency of exercise, drinking more water each day, and constant contact with my Primary, etc. I am still making adjustments this far in. I totally wish we could have been on the list of Mavyret recipients that had no side-effects but it's the luck of the draw I guess. Just thought I would add this. -LH-

[Type0Negative]

Lynn, thank you for researching. I also dont remember reading anywhere about lifespan of the virus- strange, I would think- it is important to know when you develop antivirus.

It is also interesting that Lioninsun reports different experience on different days. There has to be explanation. For me, last 2 days were different than the day before. Originally I had palpitations starting about 2 hours before I take the medicine and getting better after I took it. Today I actually had chest pains for about 2 hours after I took it. I can feel very distinguishing onset of action accompanied by these pains. This makes me not want to take it. I am wondering- what would happen if I take one pill each 30 minutes- maybe it would not have such a strong onset? Or- it may make the pains persist longer. I still hope that this will change too and possibly decrease over time, but if not- not sure what I would do. BILN 2016 protease inhibitor was cardiotoxic. https://www.sciencedirect.com/science/article/pii/S0016508507013078

[mpls]

Hi TypeO: Sorry to hear you are having bad side effects.  I would not take the pills 30 minutes apart. I would stick with the directions: 3 pills same time every day.  I hope your side effects subside.  I have been very compliant when it comes to same time every day 11 am and always took 3 at a time.  Good luck. Hang in there!!

Lion -- So sorry i thought you were a girl. Thanks for letting me know.

So, I finished my 8 weeks of Mavyret on Tuesday this week.  My blood draw was Wednesday. No PCR results yet, they said Monday or Tuesday, but ill check my chart tomorrow. My ALT was 10 and AST 17. It's the first time in years that they are in normal range. Whooo Hooo! They want to see my SVR in 4 months.  They still don't have much data on the success rate, because it's new. They did remind me that it's not 100% effective. I will post my results as soon as i know.  Thanks for all your knowledge and support!!!  Be back soon!!

[mpls]

not sure why this posted twice.

[Type0Negative]

Mpls, so excited for you! It is great that you finished! What genotype did you have? 4 months post treatment? If you undetected at 12 weeks, it is not likely to return. Can't wait to hear the update. How do you feel now that you not taking the medicine? Aside of all side effects, I kind of like the clarity of my mind, but I am thinking- it is due to stimulating effect of this drug. Wish we could keep that clarity.

[mpls]

This just in:  Received my results today Hep C PCR Not Detected

Not sure what these mean: Hep C PCR Qnt < 15 and Hep C PCR Log <1.18
I don't understand what the Log means.

ALT 10 and AST 17. 

Yes it feels good to be off the pink pills. 3 days now and my head is clearing, my thinking has been cloudy, especially the 2nd month. I can actually feel the fog lift!!
TypeO, I WAS Genotype 1B, I had Hep C for 40 years, no prior treatment.
My follow up appt is in June, so, I'll keep you all posted. And I'll be checking in to see how you all are doing.

[Type0Negative]

Congratulations! Such a great news! Happy for ya!

[Lynn K]

Hi congrats on the not detected result that is great!

“Not sure what these mean: Hep C PCR Qnt < 15 and Hep C PCR Log <1.18
I don't understand what the Log means.”

The numbers describe the sensitivity of the test and the minimum quantity of virus per mL of blood sample the test can quantify. So for the test a person could have anything less than 15 virus cells in a mL and all the test would know is there are some there but not know how many exactly. But if there was virus present the result would say <15 detected.

However, your result was not detected so what you are next looking to see is not detected 12 weeks after your last pill. Then you can say you are cured.

As far as log that is a numerical scale research scientists use to count quantities of biological or physical things like virus colonies or even earth quakes. Both numbers you see are exactly the same number just expressed differently on two number scales. The first is normal counting numbers you are familiar with the second is the same number expressed on the logarithmic number scale.

For example, viral load before treatment was

HEP C RNA RT-PCR QT 2075760 IU/mL
HCV LOG 10           6.315 log10 IU/mL

Both are the same number just different scales

[lioninsunheart]

Hooray-Yeah-Yee-Haw for mpls!!!!
Great news and some hope for the rest of us.
I had my Hep C blood draw yesterday and will have the results in a week. Starting Week 8 tomorrow. Getting your mind back must be exciting
My itches have come back big time--I woke up at 3 AM scratching my knee, right upper arm, and behind my ears(?)..this is one side effect I wish I could wish away.
  I can't wait to get a full night's sleep but I bless each dose of 3 pills every morning just like they are Holy relics. 
  I didn't know that you have to wait 12 weeks after the treatment to get final results.That's good to know.
Okay -again, great news mpls!!!
Peace and Love
Lioninsunheart

[opaleye]

Hi All,

Hope you don't mind me jumping into this conversation. I just found out today that my insurance company will cover Mavyret.

I am one of the few who failed Harvoni. I had a lot of uncommon side effects (migraine-like light shows and electric shocks down my legs) and got dehydrated even though I was drinking a lot of water.

Haven't even had a chance to call my doctor's office yet. The doc originally said 12 weeks, but now I'm reading 16 weeks for people who failed Harvoni. I am the primary breadwinner and have to work full time. A bit nervous about being able to do that while on Mavyret. Fortunately, I have a very supportive workplace that let's me work from home some.

Thank you for sharing your stories and all the valuable information. Congrats on the Not Detected test results!

Opaleye

[Lynn K]

Hi Opaleye

I found the AASLD treatment guidelines for previously treated with NS5A Inhibitor (i.e. Harvoni) Genotype 1

https://www.hcvguidelines.org/treatment-experienced/gt1/ns5a

They list the recommended treatment Daily fixed-dose combination of sofosbuvir (400 mg)/velpatasvir (100 mg)/voxilaprevir (100mg) aka Vosevi for 12 weeks with SVR12 rate was 97% (146/150) in genotype 1-infected patients. SVR12 rates were 96% (97/101) for participants with genotype 1a infection and 100% (45/45) for those with genotype 1b infection.

They list as an alternative treatment Mavyret Daily fixed-dose combination of glecaprevir (300 mg)/pibrentasvir (120 mg) for 16 weeks. SVR 12 rate in clinical trial for genotype 1a was 94% (16/17).

Is it possible you could be treated with Vosevi instead of Marvet?

[lioninsunheart]

Welcome aboard opaleye,
 Sad to learn that Harvoni didn't do the job. I don't know if I could go through another treatment with a different drug. I am on week 9 of a 12-week treatment and slogging on to the end of this month. My situation seems to be unique as far as side-effects and they have now become acute.My body is now 60% covered by hideous rashes and my hair has begun to fall out. I wake up scratching different areas which spread. (No open sores though), more like welts. I have ointments and creams to help relieve the itching but they do not eradicate the sensitive spots. It's a personal nightmare.When I go shopping I wear gloves to cover my hands as they are red-splotched and rather unsightly (ugly), however, keeping busy regardless of the fatigue takes my mind off the itching. My mood has been changing, obviously, as I try to see any bright sides to this treatment other than a successful outcome.
  I will be getting my blood draw results this Friday and hope they are positive. I didn't want to post this for days because I didn't want to frighten others into not taking the treatment, as I said my situation is unique I think..I don't know about the thousands of Mavyret users that aren't on this forum.
 Good luck on your treatment opaleye, and welcome.
Peace and Love
lioninsunheart

[opaleye]

Thanks, Lynn K.,

Since I had uncommon side effects from sofosbuvir, my hematologist recommended Mavyret over Vosevi. I talked to his nurse today, and she confirmed it would be a 16 week treatment.

My supervisor is out of town right now, but I'll be meeting with her early next week. The workplace culture has been moving more towards working remotely at home, so I believe I will have more flexibility with my schedule than when I took Harvoni a few years back.

Thanks again for the information!

Opaleye

Hi Opaleye

I found the AASLD treatment guidelines for previously treated with NS5A Inhibitor (i.e. Harvoni) Genotype 1

https://www.hcvguidelines.org/treatment-experienced/gt1/ns5a

They list the recommended treatment Daily fixed-dose combination of sofosbuvir (400 mg)/velpatasvir (100 mg)/voxilaprevir (100mg) aka Vosevi for 12 weeks with SVR12 rate was 97% (146/150) in genotype 1-infected patients. SVR12 rates were 96% (97/101) for participants with genotype 1a infection and 100% (45/45) for those with genotype 1b infection.

They list as an alternative treatment Mavyret Daily fixed-dose combination of glecaprevir (300 mg)/pibrentasvir (120 mg) for 16 weeks. SVR 12 rate in clinical trial for genotype 1a was 94% (16/17).

Is it possible you could be treated with Vosevi instead of Marvet?

[opaleye]

Thanks for the welcome, lioninsunheart,

I am so sorry you are having such a horrible time. I hope the sight of that finish line at the end of the month sustains you. From what I understand, once the treatment is completed and the drugs get out of your system, the side effects go away.

Thank you for your honesty on what you are going through. It hasn't frightened me away; I appreciate knowing what I might have to deal with. Trying this new treatment is something I have to do, and what is four months in the big scheme of things if I can finally get rid of this hitchhiker that's been weighing me down for almost 4 decades.

Please let us know your results on Friday.

Take Care,
Opaleye

Welcome aboard opaleye,
 Sad to learn that Harvoni didn't do the job. I don't know if I could go through another treatment with a different drug. I am on week 9 of a 12-week treatment and slogging on to the end of this month. My situation seems to be unique as far as side-effects and they have now become acute.My body is now 60% covered by hideous rashes and my hair has begun to fall out. I wake up scratching different areas which spread. (No open sores though), more like welts. I have ointments and creams to help relieve the itching but they do not eradicate the sensitive spots. It's a personal nightmare.When I go shopping I wear gloves to cover my hands as they are red-splotched and rather unsightly (ugly), however, keeping busy regardless of the fatigue takes my mind off the itching. My mood has been changing, obviously, as I try to see any bright sides to this treatment other than a successful outcome.
  I will be getting my blood draw results this Friday and hope they are positive. I didn't want to post this for days because I didn't want to frighten others into not taking the treatment, as I said my situation is unique I think..I don't know about the thousands of Mavyret users that aren't on this forum.
 Good luck on your treatment opaleye, and welcome.
Peace and Love
lioninsunheart

[lioninsunheart]

Thanks opaleye..HA--that is my main focus knowing this will go away after I finish the treatment. I would really hate to commit myself because of 'itch madness' just kidding.
Regardless. I am hopeful it all will be worth it.
Peace and Love
Lioninsunheart
 

[mpls]

Hi Opaleye: Good luck to you. When will you start Mavyret? I'm very excited and hopeful for you. I'm sorry to hear that Havoni didn't work. I was so concerned about whether i would be able to work on Mavyret and i zoomed right through treatment. I felt fine the entire treatment. Very minimal side effects, hardly worth mentioning, i was tired for a couple days, i had a couple headaches, mild nausea, and some itching on my lower extremities, oh yeah, i did feel very foggy towards the end. i never had to call in sick for work.  I'v heard of many or most people who fly through treatment on Mavyret with little to no side effects.  Unfortunately Lion had terrible side effects, which i think got better over time. Hey Lion, only 3 months to go... Yay! and TypeO, have your side effects subsided some? I sure hope so. It seemed like the meds left my system completely within 2-3 days and i feel back to normal now. Keep us posted. Thoughts and prayers are with you all!!

[opaleye]

Hi mpls,

Thanks so much for sharing your experience with minimal side effects.

>> It seemed like the meds left my system completely within 2-3 days and i feel back to normal now.

Excellent news!

I won't know where I might fall on the side effects spectrum until I dive it. I haven't received the medicine yet, so it will be a couple weeks or so before I start. I'm having issues with bradycardia and low oxygen at rest (while awake), and my primary doc wants to get the results of a sleep study on 3/19 to justify to the insurance company that I need oxygen. I'm already suffering from headaches and fatigue, so I'd like to get that in place before starting Mavyret.

Warm thoughts to all,

Opaleye

[lioninsunheart]

Opaleye,
 I also made sure I had everything in place also with my Primary, in fact, she advanced my appointments to every 3 weeks instead of once a month so we could monitor the side-effects and now, do blood draws for progress analysis. I also received a Hep C Treatment check-list of possible side-effects and what to do if they occurred. Very helpful. I even waited 3 days after I received my first month's supply to make sure I had OTC remedies for diarrhea and headache. There were the side-effects of fatigue and hair loss on the list as well. I already have been suffering for years with fatigue that are the side effects of my high blood pressure medications but after I started taking Mavyret my fatigue doubled. So I planned shopping and errands in town with this in mind and do all of them early in the morning when I have the most energy. I have also changed my diet and try to exercise every day which comprises several walks with Shakti, my dog, around our forest property.
The hair loss has just started a week ago which would be week 8 of the treatment I am on week 9 now (12-week treatment). The itching (rashes) is really the only bad side effect I have consistently been experiencing.
  Hopefully, you might be lucky and sail through like mpls and others. Planning ahead was beneficial for me. Just made sense.
 I have had bronchial asthma since I was a wee child and allergies, so yes, making sure you have the proper medications or (oxygen) would be very wise.
  Hope this helps.
I also wonder how TypeO is doing.

Peace and Love
Lioninsunheart

[Type0Negative]

Hey guys! Thank you for wondering about me. Welcome to new folks. My first 5 days were awful with tachycardia at last 3 hours before new dose and different kind of tachycardia after taking a dose. Then I had several good days, and then it got worse again. I dont understand why. Last night I was feeling fine. Went to the shower, it was not super long shower, just normal shower. Came out feeling dizzy. Like I was about to pass out or have a seizure, with shivering. So I had to lay in bed until 2 am suffering, then I fell asleep. Was considering to call in sick to work, but I felt tolerable in the morning so I went in. Today was mildly busy day at work, I made it ok, came home, slept for an hour, woke up feeling weak again with this strange feeling in my head... something is also going on with my ears- feels like my hearing is affected. My heart rate is under 90, but I feel occasional missed beats and strange emptiness or tiredness in the chest. I am wondering if the pills have different amount of chemicals. Would be good to know what is different in my body. I suspect it may be food related. Have to make sure I am eating every 3 hours.

I am Gen 3, and I am doing 8 weeks. I hope that it will be enough because it is not easy for me. Last night when I felt dizzy, I probably ate less than normal. So tonight I ate small sandwich and I am stable but not normal. Thank you for reading. Open to any suggestions on how to survive this.