Mavyret 18th day

This topic has 25 replies, 6 voices, and was last updated 5 years, 8 months ago by coral.

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10 November 2018 at 7:31 am #28676
tototo
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- Treatment Warrior
@tototo
Hello,
Thank you in advance for your help. I am on day 18th of mavyret and very concerned with side effects:
I dont’ feel like myself since i started treatment. There was one day after the first week that i felt lots of energy and a very clear mind, which was so nice to feel , but have not experienced another such day.
I have been taking the pills religiously at 2pm but today switched to 6 pm.
I made this change because this is what happens:
I wake up in the morning feeling normal everyday. Around two hours later it starts feeling foggy and just with a cloud over my head. I take medication with food at 2pm and around 5 I feel very tired.
Have been going to bed at 8:30 fall asleep and wake up at midnight, two, or 3am, and can’t go back to sleep for a couple of hours..
I have a running nose like I would have a flu and sneeze like I do have it.
I changed the schedule hoping that by the time I start feeling tired is about 9pm, I sleep through it and wake up refreshed.
Let’s see how it goes…
Started treatment October 25th
1A
Fibrosis 1 to 2 F
VL 1980000

No other medication being taken

Dr wanted me to take first blood test on November 1st, seven days into treatment but I suspect it is too early, and since he does not want to to run other tests not until I am done with treatment I taking the tests on November 12th.
I just hope that nothing really bed is going on and that I regret not taking the tests 7 days into treatment.

I am so worried.
11 November 2018 at 9:58 am #28679
Dr James
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- Guardian Angel
@fixhepc
Hello tototo,

Sorry to hear you seem to be having a bit of a hard time with the medication. While it’s unusual it does happen. You may find increasing your fluid intake and trying some vitamin B12 help matters.

Usually, we see thing settle down during the course of treatment as the virus is removed.

It does sound like side effects related to the Maviret, so it might be best to take it just before bed, that way you will (hopefully) sleep through them (and the tiredness you get 3 hours after will be hidden during sleep).

YMMV
11 November 2018 at 10:33 am #28682
tototo
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- Treatment Warrior
@tototo
Hi Dr James, Thank you for your advice. I am already taking B12 sublingual, do you think I should take a B12 shot?
I am also taking vitamin A because I am concerned with a side effect related to blurred vision. I read complaints about it which don’t subside after treatment. Do you know of patients taking Maviret that had s vision problems?
Can you please advise when it would be the best time to take the first test for viral load?
I am thinking this Monday, 22 days after treatment.
Should I wait for three weeks to be complete in order to take the test?
I am having insomnia can you recommend a relaxer – I asked my Dr but he says I should not take anything to help me sleep.
He says diazepam is processed by the liver therefore I should not take it.

May I ask another question?
I use oregano oil topically. Do you think this oil can jeopardize treatment?

Thank you for your help. And sorry for so many questions.

C

Thank you
12 November 2018 at 5:40 am #28686
Dr James
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@fixhepc
Doing the test at 28 days shows undetected in most 80% of patients taking Sofosbuvir.

Maviret has a protease inhibitor which gives aslightly faster response so 22 days is fine.

Oral B12 and IM work the same.

Routine sleepers like temazepam and diazepam are 100% fine.

Topical medications are fine.

YMMV
14 November 2018 at 5:30 am #28692
tototo
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- Treatment Warrior
@tototo
Thank you Dr James!
Feeling much better, a little light headed, but well.
I did adjust medication and now taking it before bed.
Will do VL and other tests on Nov 16th , 22 days into treatment.

The main issue now is lack of apetite.
Will post test results.
14 November 2018 at 9:50 am #28695
Dr James
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@fixhepc
I’ll look forward to seeing your results!

YMMV
21 November 2018 at 10:54 am #28721
tototo
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- Treatment Warrior
@tototo
Hello,
Maybe someone can help me understand what is up with all this intense itching.
I didn’t even have ANY itching for the last year or so and this is all over now.
I read most people felt decreased itching (?)
Is this a bad sign? I am two days shy of completing first month.
22 November 2018 at 5:12 am #28724
Greedfighter
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@greedfighter
Hi Tototo,

I did not take Marivet, but just want to relate to you that side effects are very individual with these medications. I took generic harvoni, Some people have no side effects. Some have a few migraine headaches like I did. Some people have strong side effects, they feel unwell for most of their treatment.

I think it’s the same for all these medications. It’s unfortunate you feel unwell, hopefully it will be less of a burden in the weeks ahead. But once you have completed treatment, the effects will vanish and if you have been cured, you will feel fantastic! Just focus on the end result! Good Luck!
22 November 2018 at 5:19 am #28726
Dr James
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@fixhepc
Hello tototo,

It is almost certainly a drug allergy.

Some patients with liver disease get itchy due to the build up of toxic stuff. These people generally get better with treatment.

With any drug, stomach upsets and rashes are the two commonest side effects.

In terms of treatment success it’s neither a good or a bad sign, unless it means you can’t complete your full treatment. The options are:

1) Stop the medications (and you will probably relapse)
2) Take an antihistamine like Claratyne (loratidine), Zertec (cetirazine) Phenergan (promethazine) which may help settle it down – for other antihistamines check interactions at https://www.hep-druginteractions.org/checker (but these 3 are all fine with Maviret)
3) Get hold of some generic Epclusa and swap over to taking that to get the treatment duration out to 12 weeks.
Attachments:
- InteractionsReport2018_11_22_01_16_05.pdf
YMMV
24 November 2018 at 3:43 am #28736
tototo
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- Treatment Warrior
@tototo
Hi Dr James,
Thank your message. I realized that I was having an alergic reaction to Lexotan, a pill I have used in the past for insomnia. I found out I had a few and used them. Well that is sorted out.

Now, I just got the BW test results I did on November 15th,exactly 21 days after starting with Mavyret.
I am a bit confused as to (detected or not detected???) but all in all it looks like this is working very, very, very well!

This is how it goes

HCV RNA QUANTITATIVE REAL TIME PCR
Performed using real time Polymeras chain reaction
Reportable Range:15 IU/ml to 100,000,000 IU.ml
(1.18 Log IU/ml to 8.00 IU/ml

VALUE HL REFERENCE RANGE
HCV RNA QUANTITATIVE REAL TIME PCR <15 DETECTED A NOT DETECTED
HCV RNA QUANTITATIVE REAL TIME PCR <1.18 DETECTED NOT DETECTED

AST 17
ALT 8

UREA NITROGEN 6 (out of range)

Is it detected or NOT detected?

Dr James, do you think I will be in the clear at the end and stick to the 8 weeks protocol or should I reinnforce and extend to 12 weeks or 10 weeks.

This is working right.
21 days later?

I appreciate your dedication and kindness in being of support here since I started my treatment, I truly do.

Gratefully,

T
24 November 2018 at 3:59 am #28737
Dr James
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@fixhepc
This is a <15 result but still detected. It is a good result at 21 days and your liver engymes are great. Your urea levels depend on how much you drink, yours is low and this just means you drink a bit more water than average.

For most people who are treatment naive and low fibrosis 8 weeks of Maviret is enough. The doctor who prescribed it would be the best person to ask as I don't know your full background and history.

YMMV
24 November 2018 at 4:19 am #28738
tototo
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- Treatment Warrior
@tototo
Thank you Dr James,
In 2001 I did interferon with ribavirin but could only endure 2 months if I well remember.
I am F1/F2 as of beginning of treatment.
Do you reckon I have good chance to clear at this rate?
25 November 2018 at 1:45 am #28741
Dr James
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@fixhepc
Hello tototo,

The baseline GT1 cure rate for Maviret is very high. The company says 99% which is probably optimistic but it’s almost certainly as high or higher than Harvoni which is mid-nineties.

So you are GT1a, have previous failure to PEG/Riba (not exactly a failure because you did not do the full course), and are F1/F2, and have HCV RNA <15 but still detected at 4 weeks...

And AFAIK there is no clinical trial that I'm aware of that informs a specific answer for a large group of patients with your specific profile.

Over here you will find an ongoing discussion that would be relative to you if you were taking Harvoni

https://fixhepc.com/forum/questions-and-answers/2064-g3-16-weeks-or-24-weeks.html

And over here you will find an ongoing discussion about how cure rate improves with duration of treatment

https://fixhepc.com/forum/experts-corner/2062-shorter-time-for-treatment.html

Questions: how long are you scheduled for, and how good is your insurance?

If you're scheduled for 8 weeks your SVR12 probability has probably fallen from high 90s to lower 90s

If you have good insurance then retreatment for longer with Maviret+Sof or Vosevii will have a mid 90s probability of success so it's not the end of the world if the first treatment does not work (and the odds are still very much that it WILL)

YMMV
6 December 2018 at 7:34 am #28770
tototo
- Topics: 3
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- Treatment Warrior
@tototo
Hello All,

Just an update to share VL Quantitative
Nov 18 – 3 weeks into treatment with Mavyret . <15 detectable
Dec 3- 5 1/2 weeks undetectable
What a relief to know that the 2 weeks I got left are re-enforcing what is already gone!

As for side effects, to me this has been a roller coaster of sorts.

I experienced thus far:
insomnia
lack of apetite
itching
fatigue
brain fog
Never enough to make me stop.

I still have two more weeks to go!

Few good days intercalated with sh**** ones

I got approved for 8 weeks only

Thank you Dr James, you have been so helpful and generous with your knowledge and time.
Thank you to all of you for your support.
I will post results 3 months past EOT (Dr will not run more tests until then)

Hopefully my posts will be of some help to people starting tx with Mavyret.
6 December 2018 at 11:30 am #28773
Mar
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@mar
Congratulations Tototo on being undetected, that’s awesome Side effects should start disappearing now too, sorry to hear that it wasn’t all a smooth ride. Keep doing what you’re doing until the very last pill, things are looking very good. Looking forward to your cure announcement 3 and a half months from now

Making the world a better place – one patient at a time.
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