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TOPIC: Can someone answer my questions. Just finished mavyret

Can someone answer my questions. Just finished mavyret 1 year 6 months ago #26664

  • James_mc85
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Hello everyone I'm new here. I'm from the UK and I have just finished treatment with mavyret. I am genotype 3

While on mavyret I was going to the gym and then the sauna afterwards as I thought it would be good for me. I read towards the end of my treatment that saunas can kills viruses etc and I'm now worried I may have killed the daas.

I'm convinced I have failed, while i was on treatment my urine was still really dark and foamy sometimes. It's still dark, I finished treatment 2 days ago. The duration of treatment was 8 weeks

NHS says there is no other options after this, that is why I am here in case I need to buy drugs myself.

What are my options if I fail. My virus load before I started treatment was 10,300 iu/ml. What is my actual virus load

Sorry for long post. Thank you
Last Edit: 1 year 6 months ago by James_mc85.
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Can someone answer my questions. Just finished mavyret 1 year 6 months ago #26668

  • Vororo
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Hi James, and welcome!

You have certainly come to the right place if you want to obtain generic Hep-C medication from a reliable source. But first, you really should find out what is causing the dark urine.

Have you seen your GP recently? If you got the Mavyret on the NHS, there should be a GP or liver specialist who is giving you prescriptions for blood tests in order to follow your progress. If not, now is definitely the right time to go see your GP and ask for a full set of blood tests and a hepatitis C viral load measurement. Hopefully, the viral load test should come back as "undetected". But this one can take 7-10 days. The other tests should only take about a day, and could quickly indicate if there is an obvious medical explanation for the dark urine.

In the short term, it is possible to have dark urine from certain foods or dehydration (like after heavy sport and/or long sauna). But this should only be temporary. Like it says in the packet with every medication - if symptoms persist, consult your doctor.
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable).
Week12 (EOT): AST 30, ALT 26, VL UND
Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND
Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND
Ever grateful to Dr James.

Relapsed somewhere after all that... Bummer!

Jan 2018: VL 63 000 (still GT3).
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Can someone answer my questions. Just finished mavyret 1 year 6 months ago #26669

  • James_mc85
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Hi Vororo, thanks for replying to me. I saw the nurse on Monday, it wasnt a pleasant experience, i asked her to print my last lft out and she asked me why did i want that, she said they need to go somewhere else to get the prints and wrote down my ALT AST and Bilburin on a paper towel (seriously) I then asked her for my viral load and she said it was 10,300 and i asked is that not quite low and she said do you want it to be higher, i thought that was quite mean. This puts me off asking them for these sorts of things, they drew blood and they said they would call me on the 12th June to let me know the results.

I mentioned to her about the dark urine and she said about the Dehydration also, i drink around 2 - 3 litres of water a day
Last Edit: 1 year 6 months ago by James_mc85.
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Can someone answer my questions. Just finished mavyret 1 year 6 months ago #26670

  • Vororo
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Hi again James,

Sounds like you need to get that nurse fixed as well. ;)

There has been a lot in the news recently about "no means no". What a lot of Drs and nurses in the UK fail to understand is that "your blood means your blood". So you should be perfectly entitled to have a copy of your blood test results, no-questions-asked.

Anyway, if I understand your first mail correctly, it sounds like the 10,300 that she told you for the VL was the number before you started on the Mavyret. So no help there. Did you have any blood tests since then? If so, the ALT and AST numbers that Nurse NoHelp gave you should be more up to date. If those numbers are both about 50 or less, then probably not much to worry about. The normal range is about 40 or less, but sometimes it takes some time for the liver to rebuild itself even if the virus is gone.

By the way, you will see that a lot of people here on FixHepC put their main liver function values (ALT, AST, GGT, and VL) along with the date of measurement in their login signature (something like mine below). If you are going to stick around here, this could save some time. It is also often a fun way to monitor your own progress.

Shoot, I still can't get my head around why it is sometimes so difficult in the UK for people to know what is in their own medical file. Me, I live in France. In France you go to a commercial lab (there are lots) to get a blood test, and the lab sends your results to your home address (and these days also to an App on your phone). You then get reimbursed for some or all of the cost automatically. Normally people in France know their test results before their doctor does. It is so easy and fast, it could not be any simpler. Will it ever happen in the UK? I doubt it... Maybe a quick fix is to have your phone handy, and ask to take a photo as soon as your results come into view?

Cheers,

Oor Wullie
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable).
Week12 (EOT): AST 30, ALT 26, VL UND
Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND
Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND
Ever grateful to Dr James.

Relapsed somewhere after all that... Bummer!

Jan 2018: VL 63 000 (still GT3).
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Can someone answer my questions. Just finished mavyret 1 year 6 months ago #26671

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Those results are the newest ones I have. They were taking about two months before treatment started. They didn't take any bloods while I was on treatment. The bloods they just took on the 28th May as I was finishing treatment, is the most recent but I won't hear from them until the 12th June and it will only be a phone call.
Last Edit: 1 year 6 months ago by James_mc85.
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Can someone answer my questions. Just finished mavyret 1 year 6 months ago #26672

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Not very user-friendly are they? If it was me, I'd do a little experiment on myself while I was waiting - cut out the gym and sauna for 3 or 4 days to see if that makes any visible difference.

Fingers crossed for good news on the 12th...

Oor Wullie
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable).
Week12 (EOT): AST 30, ALT 26, VL UND
Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND
Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND
Ever grateful to Dr James.

Relapsed somewhere after all that... Bummer!

Jan 2018: VL 63 000 (still GT3).
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Can someone answer my questions. Just finished mavyret 1 year 6 months ago #26674

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I will cut out the sauna and gym for a few days and see if it makes a difference, its happening with my stools also they are yellow orange colour.

This has been happening through the treatment but I was hoping it would clear up once I stopped. Hopefully it will once the drugs fully leave my system.

I did some digging and seen on a few websites that biliburin can increase on mavyret and on the mavyret website it says it was seen in 3.5% of patients, so hopefully it's just that, although I tend to think of the worst possible scenario first :)
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Can someone answer my questions. Just finished mavyret 1 year 6 months ago #26675

  • splitdog
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Vovoro, I just read your sig line. How are you now?
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Genotype 3
VL 4,100,000
ALT 101 AST 71
Treatment Naive
Started Sof/Dac Jan 12, 2016
VL= <15 4 weeks in. AST/ALT normal.
VL=UNDETECTED 8 weeks in.
SVR4= Virus back. 3,300,000

Started generic Epclusa Sep. 23, 2017

4 weeks in <15 *Detected.
12 weeks in <15 *Not Detected.
16 weeks in <15 *Not Detected.
Finished 24 weeks treatment 3-17-18
SVR5 <15 Not Detected.
SVR 20 <15 Not Detected.
SVR 44 <15 Not Detected.

Thank you Jesus.
Thank you Dr. James
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Can someone answer my questions. Just finished mavyret 1 year 6 months ago #26676

  • Vororo
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Hi James,

Most people experience very few side effects with DAAs. But like you say, a small percentage can have more complex reactions. But its always best to start by looking for simple explanations than to fear the worst. There are several foods that can affect stool colour. For example, there is a list of some here:

https://www.verywellhealth.com/what-causes-orange-stool-1942943

But again, for a proper medical explanation, you'd need to speak to your doc when your latest blood results are in hand. If he can't tell you straight away, he should know which further tests to try next...

Cheers,
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable).
Week12 (EOT): AST 30, ALT 26, VL UND
Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND
Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND
Ever grateful to Dr James.

Relapsed somewhere after all that... Bummer!

Jan 2018: VL 63 000 (still GT3).
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Can someone answer my questions. Just finished mavyret 1 year 6 months ago #26677

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Hi SplitDog, my GT3 brother, thanks for asking. I had a few complications after relapsing, that's for sure. I am now on a new treatment, and responding well. I will post the full story on another thread when I am a bit further down that road. Glad to see that the Sof/Vel option worked for you!
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable).
Week12 (EOT): AST 30, ALT 26, VL UND
Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND
Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND
Ever grateful to Dr James.

Relapsed somewhere after all that... Bummer!

Jan 2018: VL 63 000 (still GT3).
The administrator has disabled public write access.
The following user(s) said Thank You: hanknassi, Mar

Can someone answer my questions. Just finished mavyret 1 year 6 months ago #26678

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Thank you. I 'm not in the clear just yet, though. Only 5 weeks UND. After reading yours was SVR16 and still relapsed, I can't feel safe. I did 24 weeks Sof/Vel.
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Genotype 3
VL 4,100,000
ALT 101 AST 71
Treatment Naive
Started Sof/Dac Jan 12, 2016
VL= <15 4 weeks in. AST/ALT normal.
VL=UNDETECTED 8 weeks in.
SVR4= Virus back. 3,300,000

Started generic Epclusa Sep. 23, 2017

4 weeks in <15 *Detected.
12 weeks in <15 *Not Detected.
16 weeks in <15 *Not Detected.
Finished 24 weeks treatment 3-17-18
SVR5 <15 Not Detected.
SVR 20 <15 Not Detected.
SVR 44 <15 Not Detected.

Thank you Jesus.
Thank you Dr. James
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Can someone answer my questions. Just finished mavyret 1 year 6 months ago #26679

  • Vororo
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The liver specialist here told me it was extremely rare to relapse so late, and that most relapses happen soon after the end of 12 wks of Tx. You should be just fine after doubling-down on Sof/Vel.
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable).
Week12 (EOT): AST 30, ALT 26, VL UND
Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND
Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND
Ever grateful to Dr James.

Relapsed somewhere after all that... Bummer!

Jan 2018: VL 63 000 (still GT3).
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Can someone answer my questions. Just finished mavyret 1 year 6 months ago #26682

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Hi James,

While you are probably dehydrated (given saunas strip the water out of you) we see the combination of:

1) Dark urine
2) Light coloured stool

When the bilibrubin being processed in the liver can not get down the bile duct and into the gut. In this case it goes out via the urine and make it dark. Because it's not in the stool this is light.

The most common reason is gallstones but anything that obstructs bile outflow including cirrhosis and tumours can do it.

Testing is simple. Do a urine dipstick. If it is dark due to bile obstruction we detect a lot of urobilinogen. If it is dark due to dehydration then the specific gravity is high.

As a simple homebrew alternative you could have a day where:

a) You don't gym/sauna or do other things that make you sweat a lot
b) Drink 4 litres of water

If this results in your urine ending up light yellow to water like than your problem is dehyration. If it does not you need to see a doctor.
YMMV
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Can someone answer my questions. Just finished mavyret 1 year 6 months ago #26686

  • James_mc85
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Hello Dr James, thanks for your reply. If I drink enough water the colour does go light yellow/water like but i still usually have at least one dark pee at some point. It was the same while I was on treatment, if it was dehydration would that affect my stool colour?

My last Fiboscan score before I started treatment was 5.4, I was told this is a normal range.
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Can someone answer my questions. Just finished mavyret 1 year 6 months ago #26708

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The only things that effect your stool colour are:

1) What you eat (fatty foods make lighter stool, dark coloured foods can make darker stool, iron makes black stool)

2) How much bile is mixed in (more bile = dark, less bile = light)

3) Bleeding into your GIT (black foul smelling and tarry)
YMMV
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