Author Topic: Harvoni non-responders on Mavyret? (Read 21539 times)

opaleye · « **on:** December 02, 2018, 01:56:29 pm »

Hello All,

I was wondering who else on this forum might be a Havoni non-responder taking Mavyret for 16 weeks. I did see some posts from @slats1056. Thanks for those!

How has your experience been so far? I'm into week 7 now. My 4 week viral load labs were "HVC Not Detected. Yea! With Harvoni, I never got lower than <15 Detected. My liver enzymes lower then they have ever been -- AST 24, ALT 20. Again, lower than when on Harvoni.

I have had some side-effects, but so far nothing so bad that I won't continue. After the first few weeks the nausea and 'intestinal disturbances' went away. I sometimes have yellowish skin, but it's fine today. (Recent CBC results were all normal.) My skin is dry and itchy but no more eczema than when I started. Every day is different.

I'm still dealing with extreme tiredness and fatigue and some brain fog. I work full time but my workplace is fine with me working from home whenever I can. My husband is disabled so I'm doing 98% of the cooking and cleaning. This is not easy, but I'm keeping my eye on the prize of being cured after almost 4 decades.

Good luck to everyone on slaying their dragon!

Best,
Opaleye

slats1056 · « **Reply #1 on:** December 02, 2018, 08:09:10 pm »

Hey Opaleye,
About near as I can tell , I relapsed after almost three years post Tx. ( 2 yrs. & 8 mos. or so ) on Harvoni (12 weeks) I was cleared at EOT and SVR12. I was told that not detected at 12 weeks post Tx. testing was cured. That 12 weeks post viral load test was the gold standard. Due to a seperation , personal issues, followed by My house getting flooded during Hurricane Harvey, I was negligent with My Dr. appointments while dealing with that. In the mean time My Gastro. retired at the end of 2016 and I didn't get My follow up in Jan. 2017. Fast forward to Aug. this year , I finally went in to My internist to get back on BP Meds. and had him do a viral load test and the rest is history. No indicators for reinfection except by family members. I am currently getting that eliminated by getting them tested.
I just finished week 5 of 16 week RX. and go in Tuesday for My 4 week blood draw results. As far as Sxs. I have had some minor headaches , mild fatigue , some rashes , joint pain ( residual from Harvoni? ) ,oily face and hair , and dry itchy arms and legs. Nothing Advil, lotion , and chiro./massage therapist can take care of. Some dull upper abdominal discomfort . But no G.I. issues to speak of. Overall it has been a cakewalk compared to My experience with Harvoni . For some untold reason I had a very rough Tx. overall on Harvoni!
Two of My adult kids live with Me and help out around the house (glad My Mom made sure the boys could take care of themselves on the home front cooking and cleaning ) as well as working full time. It seems I always have something to do around the house , yard , Drs. , Labs , or whatever--- not much spare time. Just buck up and get it done.
Keep in touch and let us know how things are with You!

Tommy

JUST ONCE I WOULD LIKE TO READ A MEDICATION LABEL THAT SAYS : WARNING-MAY CAUSE PERMANENT WEIGHT LOSS ,REMOVE WRINKLES , AND INCREASE ENERGY! ROTFL

LindaBalz · « **Reply #2 on:** December 03, 2018, 10:28:56 am »

never took Harvoni, but if you can get Mavyret, its awesome ( so far)

Linda B

hiking today!

opaleye · « **Reply #3 on:** December 03, 2018, 09:02:06 pm »

Thanks for replying!

@slats1056: So sorry you had to go through thinking you were cured and then finding out years later that you weren't. I can only imagine. When I was told I still wasn't there after EOT, I was devastated. I really believed it would the The Cure. I'm back to "I Believe" with Mavyret, but with the excellent 4 weeks lab results, it may really be true this time.

I had a rougher time with Harvoni than Mavyret, too. All of the known Sxs and some rare ones, like trippy episodes of photosensitivity. I get that too a bit with Mavyret, but not as intense.

Speaking of, just when I say I'm not having Sxs.... the past few days I've been completely exhausted and light-headed with 'intestinal disturbances" just like I had the first few weeks. Maybe this too shall pass.

I'm glad your kids are there to help out, and I hope your 4 week lab results provide some reality-based Hope!

Best,
Annie

PS - Thanks for your encouragement @LindaBalz :-)

slats1056 · « **Reply #4 on:** December 04, 2018, 11:03:18 pm »

Hi Annie,

I started Mavyret 10-29-18 16 weeks Tx. (So did Linda- 12 weeks) so You are just ahead of us. Four week labs came back undetected , so looking good so far. Hope all goes well with Your Tx. I still believe yet take everything with a grain of salt, just a bit jaded I guess. Never one to go with the flow I still question all the Hype and blue sky info. provided by the health care providers and big Pharma! Don't get Me wrong , I am grateful for the Meds and treatment , I just don't think that everything has been disclosed about all of these new Meds.! Mostly due to greed and lack of funding for follow up research post treatment! Think about this----How many of the people out there are part of the system to collect info. on these drugs that are not part of clinical trials? Those of us who did have problems are not for sure! We are anomalies who have been swept aside because we are the small percentage that had bad Sxs.! THAT IS ALL GOOD AND WELL , UNLESS YOU ARE PART OF THE SMALL PERCENTAGE! Pisses Me off I tell You. Oh well , let go of the bad shit and focus on the future and the good stuff. Right? Here We go! Sorry for the rant.
Keep in touch and let us know how You are.

Tommy (Slats)

opaleye · « **Reply #5 on:** December 09, 2018, 12:26:52 pm »

Hi Tommy,

Great to hear that your 4 week labs came back undetected!! I'm cautiously optimistic as well, especially after hearing your story. I will celebrate each milestone though. I'm into week 8. After Thursday I will be official halfway there

I know what you mean about Big Pharma and feeling that not everything has been disclosed. IMHO, "heathcare" and "profit" should never be present in the same sentence. I was such an early-adopter with Harvoni that I felt like part of an extended trial study.

>> Oh well , let go of the bad....

Yup, that's my philosophy. Leave the 'stuff' on the side of the road and keep on truckin'!

I fully accept the possibility that I might have long term side-effects from Mavyret (some people talk about lingering vision problems), but I am willing to take that chance if I can be cured of HVC. I can always get new glasses. That beats liver cancer, which my father died from the same year I was diagnosed with HVC, 17 years after contracting it. And speaking of studies, I found an article about a Mavyret trial that had excellent cure rates.

[https://www.medpagetoday.com/meetingcoverage/easl/72309?xid=nl_mpt_DHE_2018-04-13&eun=g605133d0r&pos=2&utm_source=Sailthru&utm_medium=email&utm_campaign=Daily%20Headlines%202018-04-13&utm_term=Daily%20Headlines%20-%20Active%20User%20-%20180%20days]Combo HCV Tx Effective in Real-World Settings[/url]

Last Monday I felt weak and shaky. It was hard to get through my workday and I even has to ask my assistant to deliver a report for me. Then the rest of the week, I felt pretty normal, at least most of the time. Every day is different. Every hour of the day is different.

Cheers,
Annie

slats1056 · « **Reply #6 on:** December 09, 2018, 08:25:22 pm »

Hello there Annie,

I have to watch My caffeine intake, I like really strong coffee and a lot of it. After two or three mugs I have to back off and see how I am feeling since starting Tx. If I get shaky I stop, if not I have some more. I was a little startled this afternoon when both of My shoulders started hurting really bad. About thirty minutes later it stopped. I still have quite a bit of joint pain since Harvoni Tx. I do a lot of computer and microfiche stuff at work and have noticed some vision issues. Had some with the Harvoni Tx. as well. Always had great eyesight until taking it. Everyone tells me "You are getting older", but the rapid deterioration is a little strange to Me! BTW, I dislike glasses though they are a necessary evil! LOL! Hope You keep having good luck with Your Tx. Getting a little spacey at the moment , so I am going to shut her down and take a break. Keep Me up to date with Your ride and I will get back with details later!

Tommy

I DON'T UNDERSTAND HOW I CAN REMEMBER EVERY WORD FROM A SONG FROM 1974 , BUT I CAN'T REMEMBER WHY I WALKED INTO THE KITCHEN!

opaleye · « **Reply #7 on:** December 11, 2018, 11:40:07 pm »

Hi Tommy.

Hope your aches have eased off some. I've had joint pain for years, which I've attributed to fighting HVC for decades. I'm not sure it's any worse with Mavyret, but with Harvoni it seemed like all of my pre-existing conditions got worse--migraines, ezecma, joint pain.

I spend way too much time on a computer, too. And with this heavy fatigue it is much too easy to just sit for a while and stare at the screen. Just a few weeks before starting Mavyret I had radio ablations on my cervical facets joints. I still get muscular neck pain but at least the pain from nerve irritation has calmed down. The other good news is that I started taking Emgality for migraines. It doesn't completely eliminate them, but 1-2 a week is better than 3-4, especially when you're on a Tx known for causing headaches.

Just curious. Have you been getting tinnitus? I seem to get it about 4 hours after taking my dose. It's like I'm sitting in the middle of a forest full of crickets!

Take care,
Annie

slats1056 · « **Reply #8 on:** December 12, 2018, 10:04:23 pm »

Hi Annie,

All of the Sxs. were not there prior to Harvoni. Migraines went away after EOT. , joint pains remain to this day. Neck , shoulders , arms , hands , hips , lower back , knees , feet---did I miss anything. Been going to the Chiropractor and massage therapist since Harvoni to keep things in check. I had mild tinnitus before Harvoni from years of motorcycles,hot rods , loud music , and firearms use with out ear protection. After starting Harvoni ,My left ear has gotten severe non stop and the right side is moderate. Extremely annoying. I have had HCV for about 45 years . Never had problems doing what ever I wanted to , the last three years has been rather trying on the old body , BUT I AM GETTING OLD THEY TELL ME OVER AND OVER! I hope to work another 3-4 years to build My retirement fund back up post divorce , that is the plan anyway. We'll see , fingers crossed.

Tommy

I KNOW MY LIMITS. I DON'T ALWAYS OBEY THEM , BUT I KNOW THEM!

LindaBalz · « **Reply #9 on:** December 18, 2018, 09:10:40 am »

I do think a lot of it IS getting old. Our bodies are breaking down. All we can do is try to improve our quality of life, if we can, by doing healthier stuff then we did when we were young.

my 2 cents,
Linda

opaleye · « **Reply #10 on:** December 18, 2018, 07:58:55 pm »

I'm not too far behind you all on rotations around the sun. My mind is energetic and young but it is so hard to stay active when fatigue is smothering you!

It helps those that I've always been a natural foods nut. Granted I'm not eating as many fresh fruit and vegetables as I should, but at least I'm not chowing down on McDonalds.

Since starting Tx I've gotten back to regular massage therapy. Aside from being therapeutical for muscles, tendons, and ligaments, it also feels beneficial for the lymphatic system. The downside is that it is so expensive. Insurance doesn't cover it.

Hope you all are hanging in there. How many weeks do you have to go, Linda? Were you doing a 12 week Tx?

Cheers.
Annie

slats1056 · « **Reply #11 on:** December 18, 2018, 08:24:57 pm »

Hi there Annie,

McDONALDS! SHUDDERING UNCONTROLABLY!!!

Not exactly a health food nut, but eating less red meat and more poultry baked and roasted . Eating more fruits and veggies thanks to My daughter doing the shopping.Need more though. Still do the occasional fast food meal. I enjoy cooking so that helps. My internist is schooled in both Eastern and Western medicine, which is pretty cool. But sometimes I have to push him for information. He did some trigger point accupressure on Me Monday and it really helped with the shoulder and knee pain! Kinda got worried when He finished My exam and snapped on a pair of latex gloves and asked if I was ready for him to fix things, LOL! I am intrigued by the Lymphatic system stimulation as well!

Hope You are doing O.K.!

Later,
tommy

opaleye · « **Reply #12 on:** January 09, 2019, 12:31:30 am »

Hey Tommy!

Sorry for the silence. Too much going on in December with back to back guests and then recovering from guests and then getting back to work. There really wasn't much to report, just an unusually heavy fatigue, like pushing a boulder up the proverbial mountain.

That is, until this past week, week 11. I've hit a whole new level with this Tx. Not just fatigue but my whole being feels fuzzy. My mind is fuzzy. My body is fuzzy. I couldn't get myself out the door to have a casual meeting with a colleague/friend about a project I'm attempting to manage remotely.

So, I called the hepatologist's office today and asked if they needed to see me before filling out family medical leave forms. Then I filled out the forms and delivered them to my boss. I don't have much leave to take, but at least it would cover me for when I am unable to attend meetings, and I would be able to shorten my work week some.

I don't know if it has anything to do with the Tx, but the lymph glands in my legs are swollen and extremely painful. If it isn't any better by tomorrow I'll call the hepatologist's office again and insist that they schedule me an appointment.

So how are you doing? Have you noticed any difference now that you've been on the treatment for almost 3 months?

btw - How cool that your internist is both Eastern/Western medicine. My primary is an internist and she is open to alternatives.

That's all for now but I promise not to be such a stranger.

Annie

slats1056 · « **Reply #13 on:** January 09, 2019, 11:21:13 pm »

Hello Annie,

No worries! Life goes on and You sure have a lot on Your plate to say the least. Hope Your Holidays were good and not too stressful. I have been feeling the fatigue creeping in as well. Not as bad as with Harvoni , but slowly increasing day by day. Also , been feeling a little spacey and forgetful. I have toyed with the idea of using My FMLA as well, but not sure I can afford it. My short term disability won't kick in until use My vacation and sick days first. And with the reset of My copay and out of pocket expenses along with regular bills and ongoing house repairs I am stuck like Chuck for now.

I have a massage therapist & Chiropractor appt. this Saturday , looking forward to that. Still waiting for CBC results from the week before X-mas. Found out from My Medical assistant that the Doc was on vacation over the Holidays until Monday and hasn't reviewed and signed off on them to publish on the Portal as of yet. I have 12 week viral load check coming up . If memory serves Me ( and it fails at times! LOL! ) I'm at the 10 1/2 week point today.

On the subject of glands, I have been noticing some swelling and discomfort in My neck over the last 2-3 weeks. Not problematic , but annoying as hell! Hoping the feeling bad is an Sx. and not a bug coming on!

Not trying to pry , but what area are You from. I see that You have referenced Your Hepatologist in Your post. If things are not rectified this time around , I have recently gotten a reference to one at the Liver Specialsts of Texas in Houston. Just curious.

Hope You and Your family are doing well! Good luck and well wishes on Your Tx.

Tommy

opaleye · « **Reply #14 on:** January 10, 2019, 09:18:20 pm »

Hi Tommy!

Thanks, I hope you enjoyed your holidays, too! Of course they go by too fast. We still have the string lights up inside and will keep them up for the rest of the month. It really brightens up the mood.

Glad your fatigue isn't as bad as Harvoni. This Tx is definitely not as bad. Until this past week it was tolerable. A struggle sometimes, but I could handle it.

Sigh. Not sure how to soften this -- don't want to shake anyone's confidence -- but my latest lab results weren't good. On Nov. 23, 2018 the HVC quantitative was undetected. On Jan. 7, 2019 it was detected at 90 IU/mL. My hepatologist said if I was detected at 11 1/2 weeks, without missing a dose, then I'm a non-responder. He said to stop treatment. Sigh again.

I'm extremely disappointed to say the least, but not as devastated like when I failed Harvoni. With the Nov. results I was cautiously optimistic. I knew better this time.

I don't live in Texas, I'm in Florida. I'm wondering if I should check out Shands in Jacksonville or Gainesville. I couldn't find any current HCV trials, but I know there has been some done in the past.

Most people are getting cured, which is absolutely wonderful. But for the 2% minority, it likely will be a while before another treatment for non-responders is developed. Next time I want to be armed with a full 12 weeks of leave so I don't have to pretend I'm a super hero trying to slay the dragon and bring home the bacon.

I am wishing that your journey takes you straight to cured!! Please keep in touch and let me know how your new lab results go.

All the best to you and yours

Annie

danton · « **Reply #15 on:** January 11, 2019, 10:04:17 am »

Hi Annie

I am certainly hoping your doctor did not decide to cease treatment at this juncture based on that reading at 11 weeks.
This could very well have been a false positive or possibly a lab error.

lporterrn · « **Reply #16 on:** January 11, 2019, 01:36:49 pm »

Hi Annie,
The experts don't recommend discontinuation of therapy at that junction. Basically, your week 4 results were enough to determine that you were in in to the end. There have been other cases like yours where people go on to be non-detectable. Some have even had detectable HCV RNA at the post-4 week treatment mark, and have gone on to be non-detectable. Here are the guidelines: https://www.hcvguidelines.org/evaluate/monitoring

Let's hope your next labs will be ND so you won't need to challenge your doc on this decision. However, if it comes to that, we can brainstorm on ways to move ahead, should you feel comfortable.

In the meantime, take comfort in knowing there are other choices ahead. You are not at the end of the road, nor are you alone.

opaleye · « **Reply #17 on:** January 12, 2019, 02:37:45 pm »

Thanks, @danton and @lporterrn,

I really appreciate your encouragement to continue with treatment, but one of the considerations with my doctor recommending I stop treatment is that I had developed extreme weakness/dizziness that began around week 11. When I called the doctor on Thursday I was close to going to the emergency room.

It wasn't just the heavy fatigue like before. I could barely function. I have to work full time. My husband is disabled and I am his primary caregiver. I can't imagine how I would have lasted another 4 weeks.

My liver is in good shape. The last FibroScan showed no fibrosis, just mild fatty liver. I was shocked by that since before my 8 weeks of Harvoni I was F2-3. Even though Harvoni didn't cure me, maybe it gave my liver enough of a break to heal itself. I am hoping that 12 weeks of Mavyret does the same.

I haven't given up on a future cure, but next time I will be more prepared. I'll build up enough leave time so that I can work part time at the beginning and no time at the end. I felt pressured by family and another doctor to do it asap. Next time it will be when I am ready.

Thanks again for your support, Lucinda. You have given me hope that maybe, just maybe, being detectable at 11 1/2 week might not be a treatment failure.

Best,
Annie

slats1056 · « **Reply #18 on:** January 12, 2019, 11:05:07 pm »

Hello Annie,

That sucks to say the least , hate to hear it. Don't give up on this round yet! If You have the meds in hand , do what You can to finish the 12 weeks and do Your follow up post Tx. labs. Hopefully the virus has been rendered to a point where it can't or won't reproduce or mutate. You still have the chance of SVR at EOT , as well as at post Tx. 12 and 24 weeks. I have an idea of what You are going through , but keep Your chin up and take care of YOURSELF first. If You don't the the care of You husband will suffer as well. I am pretty much in the same boat as You are , albeit not quite as challenging. Not only am I rooting for You , but You are in My thoughts and prayers as well. I am assuming that all of Your other Labs are in range and that there are no other anomalies creating problems that may be affecting You.

Best case scenario , You will still achieve SVR . At least Your liver will have been given a short reprieve . But at what cost? Being the few who have been dealt this hand with these new Meds. ( guinea pigs if You will ) , We must persevere for ourselves as well as for those yet to come , not to mention those who fallen in battle before us! There is just precious little info. out there pertaining to our situation . What do we do now. which way do we turn ? Who do we seek out for help ? Hopefully here on the forums these questions will be answered . I for one have found solace , comfort , support , inspiration , and a good chuckle to make it through some hard times over the past 3 1/2 to 4 years.

Keep chippin' away and don't give up. And don't be a stranger , because I as well as others here are with You and want to know what is happening with You!

Tommy

NEVER ASK GOOGLE FOR MEDICAL ADVICE! I'VE GONE FROM A MILD HEADACHE , TO CLINICALLY DEAD IN THREE CLICKS!

opaleye · « **Reply #19 on:** January 14, 2019, 07:56:07 pm »

Hi Tommy!

Thanks so much for being in my corner

I really appreciate everyone's encouragement, but I'm done. At least for this round. I couldn't handle the Sx that hit around week 11. I'm still feeling weak and lightheaded. Hopefully that will subside in a week or so.

I still have hope for a future cure. The good news is that options for non-responders are being studied. I found these two abstracts:

Retreatment of Hepatitis C Infection in Patients Who Failed Glecaprevir/Pibrentasvir [i.e. Mavyret]

http://www.croiconference.org/sessions/retreatment-hepatitis-c-infection-patients-who-failed-glecaprevirpibrentasvir

Overview of Direct-Acting Antiviral Drugs and Drug Resistance of Hepatitis C Virus
https://link.springer.com/protocol/10.1007%2F978-1-4939-8976-8_1

I'm not a candidate for G/P + SOF + RBV therapy because of my sensitivity to G/P and SOF, and my doctor doesn't think I would do well with RBV, but at least studies are being done for the 1% minority who aren't responding to these miracle drugs that have thankfully cured so many others.

The second article (a chapter really) seems more general for all DAAs, not just Mavyret, but I'm curious to read it . My workplace has a subscription to Springer but that ebook isn't available yet.

So how were your last lab results? Hoping for the very best news!

Annie

andrew j · « **Reply #20 on:** January 19, 2019, 04:46:50 pm »

Gee - that's a tough break.

Maybe you should have been given 12 weeks of Harvoni to begin with?

Surely one of the current brews will work for you ... maybe after a bit of a break?

... At least you know how these drugs affect you.
That'll help in managing the sides, in future.

Hoping that you're doing OK today.

I'm sending you a prayer - for a Tx that works - and for one that you can tolerate better.

A.

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Author Topic: Harvoni non-responders on Mavyret? (Read 21539 times)