8-week Epclusa + 1 week Mavyret chances

[biowarrior]

Hi guys,

Background:

I'm a 25 male—I've had previous health issues from aged 19-23. I had finally overcome them and turned my life around at aged 24 only to get hepatitis C, through normal sex, which noone really believes but anyway.

I got it at a really bad possible time in my life; when I need things to start going right. Not wanting to lose the current great traejctory I had got on pre-hep C, I said I would be 100% by now, but I'm not, I'm still really tired and have brain fog .
Timeline:

I got hep C  in September 2019.

I had to drop out of program in December due to not being able to manage, didn't really know why, I kept getting sick.

I found out in Jan 2020 after my regular blood donation.

Apart from the first week of treatment where I had initially more energy, I was really tired during treatment. However, I would say I felt better than before treatment.

I'm supposed to be doing a project which is very mentally demanding (mathematics/Machine learning) so it is really frustrating, being tired as you literally cant do anything towards it.

That's why I gambled in not doing 12 weeks, as if I dont do this project I am a bit screwed in real life.

I did start taking modafinil soon after stopping treatment to try and get some work done (it nullifies  the  drugs, but as it was 3 days after last mavyret dose, I figured the mavyret was out of my system).

I dont really get how it works, Ive seen some people say the drug keeps working for a month post last dose.  some people have 30 at end of treatment but still get SVR12.

I also think when I didn't know I had Hep C i compounded issues by taking so much caffeine/nootropics to in vain try and compensate for failing body/mind.

Tl;DR

I am one week post treatment:

Treatment:

8 weeks Epclusa
1 week Mavyret

Bloods at 4 weeks : <15, detected

fibroscan 5.5

Kidney problems, creatinine before treatment 140 u/mol (70-105), at 4 weeks 128
 I think this could be related to the fatigue.

Now what do you guys think my chances of being cured are?
 I thought 8 weeks of epclusa would be 90% roughly chance of cure , and as I still was detected at 4 weeks I added another week of mavyret which I had just got hold of through the NHS.

do you think the fatigue will lift quite quickly if I just try and not push myself.?

Now I'm still tired , I'm having doubts, and obviously in hindsight regret not adding extra weeks. 
 
I'll keep this post updated if I ever get a blood test in lockdown. I hope you all recovered well who are post treatment and best wishes to those that still have it.

[Lynn K]

From the maker of Epclusa based on clinical trial data

“In a study of 647 patients with genotype 1 Hep C, with no prior Hep C treatment and without cirrhosis, 97% (119 out of 123) of those with lower levels of the virus (less than 6 million IU/mL) who received HARVONI once daily for 8 weeks were cured.”

Standard treatment with Epclusa is 12 weeks for all genotypes. There is a clinical trial currently ongoing to investigate an eight week treatment regimen but I was not able to find data to reflect cure rates for a shortened treatment regimen. There dose not seem to be any clinical trial data available for an eight week treatment with Epclusa 

Best of luck

[biowarrior]

Thanks, for that info. I'm genotype 2.

I don't know anymore.  I'm a bit scared now after reading around here, but maybe that's a selection bias  , hmm the mind does play tricks.

I'll try and have a few days off and maybe 2 weeks EOT things will be better.

[Lynn K]

Yes we all were worried waiting for SVR 12 results. Just my 2 cents worrying won’t change your outcome hang in there and hope for the best.

[biowarrior]

Of course, I can see how much people have suffered, yourself especially. i

im sad your fibroscan hasnt improved .

 I guess its managing uncertainty, which I haven't been great at. Im hoping 90%

I do have more anti viral drugs to hand (7 weeks mavyret , 4 weeks epclusa), but I don't know how quickly it would build back up if unsuccessful.

I may be able to get a blood test but only this week, so I would get results in a week. I don't know how informative that would be.

I guess I will keep trying 2 days on, one day off with this project, and wait until the end of lockdown. I'll try intermittent fasting as well if I can as apparently that might help

[Lynn K]

Not sure what you mean two days on two days off two days on/off of what?

Not sure how you have such odd quantities of meds are you working with a doctor?

Fasting is not a factor and could explain some of your symptoms like tiredness.

No vial load testing means anything except 12 weeks post treatment. We had at least one person here who was weakly positive at 4 weeks post and was still later cured with no further treatment (see DragonSlayers posts from around 2015 I think)

As far as viral rebound, my pre treatment viral load was around 2 million when I relapsed after taking Sovaldi and Olysio for 12 weeks my test taken 12 weeks after finishing treatment was about 2.4 million. If people relapse the virus generally comes roaring back.

One thing at least in my case I got my 12 week post treatment liver enzymes test back before the viral load test and saw one if my liver enzymes had risen above normal so I had a feeling my viral load test might not be good. So if you had elevated liver enzymes prior to treatment which normalized on treatment that is something you could look at.

[biowarrior]

Sorry for not making myself clear—I was talking about this current work project. That's why I've tried to cut corners.

I'm in the UK and the NHS took a few months to get me the meds, so I ordered some epclusa and started taking that.

Ok I don't really understand how you can be positive, have no drugs in your system, than be cured. Maybe the antibodies now they are activated can get rid of a small amount.

Yes my liver tests were elevated prior to treatment and normalized. I havent tried the intermittent fasting yet—I'm clutching at straws a bit, but was thinking it may aid organ recovery.

I managed to get a viral load test (Roche) today and a renal profile. I'm not sure if that's the only test they use at SVR12

I'll probably get my results next week, but it may be meaningless as you say. As it's only one week after treatment.


I'd really appreciate if you could assses a rough % of my chances of SVR12, as I'm in an echo chamber and doubting everything as I still am useless/unproductive.

[Lynn K]

There is no data looking at an 8 week treatment with Epclusa there are some clinical trials looking at that but no data is available. The only data available is for the recommended 12 week treatment. I’m just a patient I have no opinion on the efficacy of a treatment shorter that the recommended 12 week duration. And even if I did I would be entirely guessing as I have no basis for an opinion.

My best guess is somewhere between zero and 100%

Some people are able to beat the virus without treatment about 25% is the estimate. However, once infected even if cured you will always test positive for hep c antibodies.

Our best guess is for having a viral load of detected but still later testing not detected without further treatment is maybe the test is picking up virus cells that are no longer viable but haven’t yet been flushed out of your system. The meds called DAA’s or direct acting antivirals interfere with the virus ability to reproduce new copies of itself. So maybe the ones still left are basically un able to reproduce but haven’t died yet.

A HCV RNA test done at 4 weeks post if not detected is said to represent about a 95% chance you are cured. The 12 week post not detected result is I guess about a 99.8% odds of being cured at least that was what they were saying for Harvoni in 2015

Tests done at 12 weeks post are a liver panel and a HCV RNA.

You shouldn’t need any organ recovery unless your liver is damaged and I’m doubtful fasting would be helpful in that regard. Have you been told you have liver damage? What is your fibrosis score? That would be a number like F0, F1, F2, F3 ir F4 with F0 meaning not damage and F4 meaning liver cirrhosis.

[biowarrior]

Ok fair enough—haha. That's not reassuring, I feel like an idiot now. My confidence has been knocked because of the 4 week positive result.

Ok I like your theory about non-viable viral particles.

If you have <15 detected SVR12, does that count as cured?

As I guess another theory is that the drug is still in your system at minute levels and can still get rid of a few viral. But I would have mucked that up, by taking modafinil.

I think there was a clinical trial I saw in a long document, for genotype 2 8 week epclusa, but only 26 people and think it was 88% but maybe I've made that up as I cant see anything online now.

Yh I definitely couldnt beat the virus without treatment.

Do you know about SVR1 correlation with SVR12, as I guess I will have that SVR1 result early next week. Ah ok, that's useful to know, I guess if i still feel rubbish I'll try and wrangle another test in 3 weeks so have SVR4, and jump back on treatment if positive.

Ok thanks a lot, for all the info. I only found out about this forum this week, before I posted on healthunlocked but noone replied.

My fibrosis score was 5.8 so I think maybe F1, my kidneys are the problem. I definitely was healthy before I got hep C, and then  I had hep C and was taking alot of supplements/prescription drugs to try and keep afloat, which I think did quite a bit of damage due to hep C. My other problem is high blood pressure (like 140 maybe)

Ive been having pain on my lower stomach, which is a bit better now.

My liver and immune system tests were completely out of range, but as you said went back to normal at 4 weeks of treatment. My kidney profile was also completely out of range and that problem still persists.

It was 140 (50-105) Creatinine but went down to 132 at 4 weeks so I'm hoping it might improve.

[Lynn K]

A Fibroscan score of less than about 6.5 equates to an F score of F0 to F1 so basically you do not have liver damage. Note the lowest possible score is 2.5 and people without liver damage will score below 7. My last fibrosis score was 29

https://hepatitiscnewdrugs.blogspot.com/p/fibroscan-scoring-card-understanding.html?m=1

No data for 1 week post treatment. I really would suggest you discuss your treatment options with your doctor vs making these decisions on your own. I really don’t recommend taking any supplements as they only thing they have been proven to do is lighten your wallet.

If you do relapse on week 4 a true relapse will have a detectable viral load. Not <15 detected

[biowarrior]

Ok thanks a lot!! Really appreciate it.

I'm really sorry your fibroscan is so high—do you have fatigue??

Yes I know I am self-medicating a bit because I'm afraid I will lose my profession and be out of society again. All my doctor appointments were cancelled because of covid, it was just expected I take mavyret for 8 weeks.

Last question: if you have <15 detected SVR12, does that count as cured?

I'll update this next week when I get my test results (renal + vira load)

[Lynn K]

I had fatigue when I had hep c it is the most commonly reported symptom of hep c by most patients. Having a Fibroscan score like mine means I have liver cirrhosis.

Your HCV RNA test result means the test is detecting hepatitis c virus just the amount is lowere than the tests ability to detect. A cured result would say not detected.

Most of what you are taking in the way of supplements are likely doing little to nothing beyond a placebo effect.

[biowarrior]

So you don't have fatigue now?

yh I'm not taking many supplements now, only vitamin D, bacopa monierri.

I got my kidney result which is the worst its been, 145. So am a bit scared for next week.

[Lynn K]

Hard to say if I have fatigue. I had some maybe extra tiredness for 37 years of infection. I’m now 62 and have cirrhosis. Basically, I don’t have a good frame of reference to what normal feels like.

In any event my tiredness didn’t interfere with daily life to any noteworthy extent. And I do think I feel better than while infected with hep c.

Your kidney results are likely a separate issue from hep c infection.

[Lynn K]

Found some info on creatinine testing

https://www.healthline.com/health/high-creatinine-symptoms#causes

Hep c and liver disease is generally associated with reduced creatinine per what I found
https://www.medicinenet.com/creatinine_blood_test/article.htm

[Mike]

Hi biowarrior,

Waiting for SVR12 can cause a little anxiety. Many people have had a + viral load at the end of treatment and attained a SVR12. My guess is that the DAA's continue to impact the virus after treatment is ends.

Fatigue caused by the DAA's continues after treatment, though it should get begin to dissipate the farther out you are. Another factor that can cause post treatment fatigue is depression and anxiety. Simply put,  treatment sucks and so does HCV. It can make one depressed - especially when dealing with the pangs of life, trying to strike a balance between work/school and making ends meet.

My recommendation is to be positive and expect a SVR12. If by chance an SVR12 is not attained, be assured we are living in the golden era of HCV treatment and a cure can be attained from a second round.

Many of us suffered through 48 weeks of Interferon-based treatment which really sucked, only to be termed a partial-responder at the end of tx. That's not the case anymore. Stay positive and you'll slay this dragon.

Best wishes, Mike 

[biowarrior]

Cheers Mike! That's really nice to hear  . And reassuring to know things wont bounce back straight away.

I was meant to find out this week but they lost my blood sample.


And Lynn, I'm glad you feel pretty good now. Cirrhosis sucks.

Hopefully your health awareness will keep you in good nick for a long time despite that.

[biowarrior]

Hep C is related to reduced creatinine??

That would mean it improves kidney function. My kidneys have really flared up and I am very concerned about them now as I realise kidneys do not recover like  the liver is able to. and my last kidney test puts me at 50% function.

I do feel it is Hep C related as my kidneys have detiorated quite rapidly. I admit that my stress and attempts to take drugs have made matters way worse. And I see that others havent experienced this problem especially after only 6 months.

https://www.uptodate.com/contents/overview-of-renal-disease-associated-with-hepatitis-c-virus-infection, https://en.wikipedia.org/wiki/Membranoproliferative_glomerulonephritis seems to be the main hep C kidney problem.

My kidneys really hurt and have been inflamed on and off so I don't know what to do about them. I'm hoping things will get better, and i may have to drop out of my program completely to try and get stress down and focus on health, especially if my hep C result is bad. As blood pressure is a big factor for kidney progression

I am taking another Hep C test this week as they lost the last one ?(more stress) lol. I guess it will be more accurate as it will be 2 weeks EOT.

i'll update this thread, and try to keep positive, and make sensible decisions as I have not bounced back as I thought I would, and I need to stabilize the kidney issue. I am a lot less tired now, like my adrenals are working again, now I'm off the treatment, but still dont feel 100% and can't concentrate, so maybe its like Mike says.

[Mike]

Hang in there biowarrior. Listen to what your doctors say so you can make informed decisions. It is true that there is a casual relationship between kidney disease and HCV. If the two our related, it seems like once you clear the virus, the whole body should begin to heal. It can take some time.

Stay positive in mind and soul and positive things will happen.

Best wishes,

Mike

[Lynn K]

I guess creatinine levels can either be reduced because of liver disease interfering with the bodies production of creatinine or increased if hep c or liver disease are contributing to kidney injury just depends on what exactly is driving the changes in creatinine test results. The reduction in creatine isn’t indicating improved kidney function if caused by liver disease.

A two week post treatment test would be basically about the same as a one week post treatment test. Basically they would be equivalent to an end of treatment test result. While it’s great to see a “not detected” test result EOT testing isn’t really an indication of cured.

But anyway best of luck on your test

Hang in there

[biowarrior]

Thanks guys.

I'm really praying the body can recover. So I will stay positive.

In the mean time I will probably drop out of my one year masters program and see if they let me in again for September, so I can try and recover or at least stabilize the kidney thing.

[Lynn K]

I guess I’m just curious what has your doctor said about your kidney issues?

[biowarrior]

They weren't sure.

They just said they will monitor it, and thought it was a bit odd that it went down then up again. GPs in the UK only really act on guidelines, so the 140 result flagged it for them—and they couldn't refer me to a nephrologist because of covid.

I'm also surmising here, but I think an antidepressant/supplement (tianepentine sulfate) I was already taking before Hep C with no issues, in combination with the hep C immune response, really aggravated the kidneys, as I've stopped that and I'm in less pain.

My liver tests came back as normal again, but I guess that doesnt mean much. I should get the viral load next week.

I don't feel right still, am slightly fatigued, and my concentration/mental ability is a fair bit worse.

Out of curiosity, I was wondering about my Liver tests:  Serum alkaline phosphatase :  39 IU/L  (35 - 129 ). Do you know anything about that?

[Mike]

Hi biowarrior,

I'm not a doctor; however, you liver test is within the normal range according to the lab reference standard (35-129).

Best wishes, Mike

[Lynn K]

Yeah your Fibroscan looks good as does your ALT (normal range) so those are good things.

[biowarrior]

My Result came back as undetected     , this was 2 weeks after EOT, so I'm pretty hopeful now that I'm not one of the unlucky. So that's a big relief!

I won't get tested again until the SVR12 test and I will assume the best until then.

I've also dropped out of my Masters and I will see if they let me repeat it in September.

I am still extremely tired, and my kidneys are a major issue, as my current damage puts me at stage 3 kidney disease.

 So I doubt  I can ever go back to my full of energy self, where I can concentrate for long stretches, and do research. As it's been 6 months of kidney damage it seems unlikely that they will go back to normal, as kidneys dont really recover pastthe acute stage, once a nephron dies, that is it.  it seems likely it is damage primarily due to inflammation from autoimmune response against hep C. And aggravated by blood pressure, maybe the antidepressant medication.

Although on the bright side, I'm hoping if I eat well, and exercise I can see some improvement. This study seems to indicate there can be a slight improvement after Hep C is cured: https://www.nature.com/articles/s41598-018-36437-6. The only treatment I've seen is something call predinsone to stop the immune system, which I may ask for if I cant get rid of the pain.

I will let you guys know how I get on, now I am mainly just concentrating on health until hopefully September.
If you have any ideas let me know.

Thanks for your support, that was really nice to have.

[Mike]

biowarrior,

CONGRATS!!!!!!!! That's a big deal and should put a very satisfied smile on your face!


Best wishes,

Mike

[Lynn K]

Congrats on your good viral load tests that’s great news! Now onwards to your 12 week post treatment testing results and even more good news to come.

[biowarrior]

cheers  . Yes, so relieved.  Hopefully only way is up now!!

[biowarrior]

I hope you are all coping ok in lockdown.

My pain has seemed to have gone away recently. And my creatinine was measured at 120 (GFR 65), down from 135/140. So that's some good news for me.

So hopefully things can get even better. 105 would be amazing as that is the upper limit of the range for kidney function.

The only problem is I still feel as tired as ever, even when I wake up. I have really achy muscles and feel like I have a huge hangover the whole time, so that is a bit frustrating. If I do exercise, I feel even worse the next day. Mentally it's so annoying, as even reading or watching a new tv shows is a huge effort, so it's quite difficult to structure a day.

I'm just trying not to get too depressed, and clutching on the hope that I will feel good in 4 months when hopefully the university will start.

As I'm unsure how much is down to the kidney issues if my creatinine values put me at only stage 2 Kidney disease. I am probably going to go on a steroid called prednisolone for 5 weeks, as the doctor think that might help.

Will update after then and when I hopefully am able to get tested at 12 weeks.

[Mike]

Hi biowarrior,

Sound's like the numbers are going the right way.

Have you asked your doctor about the fatigue? What did they say?

Best, Mike

[biowarrior]

Hi Mike,

I hope you are doing well.

I had another Hep C viral load test and Renal test. The Viral load was negative (this is I think at 6 weeks post treatment)! so think I'm cured.

My kidney numbers are back up to 132, so I think the last test was a fluke, low end of the variance around mean . I still feel just as fatigued as before. I haven't managed to get a doctor or treatment for it yet,  I think immunosuppressants may help. But I am trying again, but it is hard with corona.

I've only got 4 months to get well enough to be able to do a mentally demanding masters, so a bit of a blow to not actually be improving.

At least the virus has gone,  . And I guess I still don't know what health I'll be left with, what the true kidney damage is, as creatinine fluctuates quite a bit. I'm hoping I can get rid of some of the fatigue/ brain fog to sit at my desk.

Will keep you posted. Thanks again  !

[biowarrior]

Hello.

I just want to keep my case alive and hopefully closure if anybody goes through something similar (finds themselves in a position to take a risk) or get's kidney problems.

Moral is: don't take the risk with the reduced regimen as you most likely won't just bounce back. If you can't do what you are doing while on treatment it's unlikely you will be able to after.

I have finally got my SVR 12 result !!  . It took a while because of covid 19.

My kidney tests are still off but I am feeling less fatigued this last month! I went on a drug called prednisone and that helped, and I lost 10kg of muscle and started eating healthy. So I hope I am on my way to feeling good.

 Although my kidney numbers indicate renal disease I had a specialised test done which suggests the damage isn't terrible. I have a GFR of 85 which is not that bad. Like 70% function.

The doctors don't know why my creatinine is higher, indicating a much worse GFR of 58.

I do believe there is a post viral syndrome as Hep C seems particularly nasty, which is maybe why people take months to feel better.

I constantly see people posting on reddit about studies showing corona virus lingering symptoms (because that has more public interest), and there are. But they can't be as bad for you as Hep C, there are so many kidney conditions linked to it. I'm hoping the body recovers from Hep C stuff, and that everyone else is feeling ok on here.

I'm hoping I will be nearly full strength 6 months post treatment. I'm way more optimistic now!! I do have to taper off prednisone (corticosteroid) which may not be smooth.

But I definitely feel a lot better and finally look healthyish. I'm hoping I will restart my Masters in October so this Hep C saga cost only a year.

[Lynn K]

Hey congrats on your hep c negative results that’s great news!

Interesting my GFR is 63 but the test says >59 is normal range for European American. My creatinine is 0.96 mg/dL with normal range below 1.0 mg/dL

No one has said anything about kidney disease.

I have read that in some cases hep c may be a cause of kidney disease.

“HCV can cause acute kidney disease, which often progresses to acute kidney injury (AKI), in patients with acute or fulminant cryoglobulinemic vasculitis. Chronic HCV infection, per se, can be a significant risk factor for AKI in patients with dehydration, sepsis, or advanced liver injury.”

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5272932/

[biowarrior]

Thanks Lynn!!

I hope you are doing well during this time.

I'm very grateful for your support on my thread through this period. And you were right about nearly everything—I am so thankful I am doing better. I know I've been a ball of anxiety with my posts on here, as I didn't know what was going on.

Yes I think you are right >60 is normal. So your creatinine is in range, and you have nothing to worry about. The creatinine can be  very innacurate, if you eat protein, take medications, have muscle mass. Mine is quite elevated for some reason, even though I've lost weight and gone vegetarian.

I think it is age dependant, so in your 20's  80-90 is low normal (bottom 5%, but normal). So it would depend on your age. I think 50% of people > 60 have < 60 or something for example. You start off with about 110-130 when a child.

My tests were saying my GFR was 50 ( I had about 12 creatinine tests), which at 25 would not have been good, as your kidneys will inevitably decline /lose nephrons so they need to last those years. My creatinine is still elevated, but I am feeling so much better after a few months post treatment—relaxation and little stress (I'm about 70% full strength) so not as worried now, and 87 is obviously better than my wildest hopes.


My liver tests are all normal, apart from bilirubin which I have gilberts syndrome. I still have some stomach pain, which was my main physical symptom from Hep C along with fatigue/brain fog but with time and better diet  it seems to be going away. I'm not sure if others have experienced this. y kidney doctor wasn't sure if it was to do with kidney, even though it emanated from there.


  . I am working on a good diet after this health saga! Like you sugggested.