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Author Topic: starting 3rd week on mavyret  (Read 1374 times)

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Offline Nanato6

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starting 3rd week on mavyret
« on: March 13, 2019, 06:24:15 pm »
just an update.
hubby is doing really good has less than 4 more weeks, no side effects, seems a little more perky! we saw his Dr last week, the virus is gone at the 4 week lab, YAY! he has 2 more labs then visit Dr in Sept. he recommended an endoscopy, ultrasound every six months. also hep a and b vaccine but he declined the vaccine as he has the MTHFR mutation (homozygous and heterozygous) Dr said that was fine.

For me:
week 1: i was thrilled the pills are easier to swallow than the BP meds! i did get nausea and headache but when i ate or drank it resolved. still have fatigue but not any worse.
week 2: more fatigue, lots of itching, same on nausea and headache, rib (inflamation) pain, a little short of breath that comes and goes, a little shaky..blurry vision
week 3: still fatigued, not as short of breath,heart palpitations that comes and goes, a little dizzy and some sinus drainage. a little more achy. 

looking forward to better days! the forsythia has bloomed!

i found this and thought it was worth sharing.. https://www.hepatitiscentral.com/news/new-research-finds-pomegranates-help-battle-hepatitis-c/

my favorite time of the day is cappuccino time, hubby makes me the best every nite! and bedtime, so hard to get out of bed! my happiest time is when we are with any/all of the six grandkids or their parents! :)
 

Offline lporterrn

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Re: starting 3rd week on mavyret
« Reply #1 on: March 14, 2019, 11:22:36 am »
I love your spirit! Thanks for the update. See you through to the finish line!
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline Type0Negative

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Re: starting 3rd week on mavyret
« Reply #2 on: March 14, 2019, 11:35:30 pm »
Happy for you that you doing it. I completed Mavyret a year ago exactly. I had palpitations and occasional light chest pains while on treatment- especially an hour after administration. I also had blurred vision. The bad news is- it did not resolve after the end of treatment. This is pretty serious issue. I had perfect vision before treatment, not officially documented. While on Tx, I thought- this is just a side effect and will resolve. Well- after I finished, the blurred vision was staying. Reported it to the drug company through my gastro. He got irritated and said- he will not discuss it with me, he will review my records from ophthalmologist and if there any findings, he will report it. I did all possible tests, they did not find anything, was trying to tell me- I am just getting older and it is normal. My vision decreased to 20/25 and 20/40. I was hoping that it will get better. A year later- I don't have the general state of blur in my head, so I can tolerate it better, but vision itself did not return to normal. Last week I developed small occluded vessel in my better eye and now have a line in my visual field. My primary care believes me and thinks it may be related, but I did see to specialists and they don't see relation... Just thought I would share. Pay attention to your vision. Hope this is all in my head. 
Also cappuccino- isn't it caffeine containing beverage? This would definitely contribute to palpitations. I had to stop even decaffeinated tea. Also my heart rate was low in the evening and super high in the morning. Like 110-120 some time when I was standing.
« Last Edit: March 14, 2019, 11:40:05 pm by Type0Negative »

Offline andrew j

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Re: starting 3rd week on mavyret
« Reply #3 on: March 16, 2019, 07:19:35 pm »
Hi Type0Negative,

I would always follow my own experience - my own intuition - even though I have found myself mistaken on many occasions now, when it comes to things medical.

Is it all in your head?
Maybe vision is one of those things ... if you think about it - you can convince yourself that ...
Mine is certainly a bit 'dotty' ... a bit blurry, when I stop and 'experience' it -  but for me that's normal (I think?!).

I'm sorry that you're having to go through this stuff.

For me, it's been more about fatigue.
You know - I tried a high quality multi I've got at home (in case something in it might help) - and I was amazed to find that I did in fact suddenly have a lot more energy!
(I haven't kept taking them, but, you know ...).
Maybe you could try that for your vision?

Like you, I would keep exploring this thing (I know that you will anyway) - and hopefully you'll get some answers ... some relief, soon.

Best wishes,

A.

Offline andrew j

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Re: starting 3rd week on mavyret
« Reply #4 on: March 23, 2019, 06:18:01 pm »
Hi Type0Negative (and Nanato6),

As soon as I got home last week (I can only get to a computer once a week at the moment) I got to remembering ...

I used to be concerned about my vision post-Tx - and also about BP - at about a year-post.
Because I had been so unwell when I had Hep C, I was almost high on simply being well again - or at least, better - and largely overlooked, or ignored these symptoms / side-effects.

I had different patterns in my field of vision [to you]:
black dots would sort-of drop in there - and there was a constant experience of something like electricity in my head, and behind my eyes.
Is that what you mean?

The good news is that that's slowly dissipated away.
My vision is pretty good now (3 years-post).

I have ignored the BP, even though it was / is? higher than yours, because I don't want to go on BP meds.
I know that I can bring it down by relaxing, and slowing down - and by relaxing my breathing.
(Maybe I'll get on the meds - but I've got a few other things to think about, also ...).

Hoping that this is a little more helpful than my first post.

Best wishes,

A.

« Last Edit: March 23, 2019, 06:19:58 pm by andrew j »

Offline Nanato6

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  • Posts: 16
Re: starting 3rd week on mavyret
« Reply #5 on: April 15, 2019, 11:48:26 am »
Update again:

Week 4: Better this week, rib pain and liver pain pretty much gone. still very fatigued and taking naps. i decided i just have more, more of everything i usually whine about. Had blood work done at the end of 4th week and it was: 
HCV RNA QN PCR (IU/mL)   25 IU/mL   IU/mL
HCV RNA QN PCR (Copies/Ml)   1.40 log IU/mL

not as good as hubby's who is now UNDETECTED after 12 weeks on Mavyret! 

Week 5: I had some really good days this week! i had such dread taking the pills but am much better with it now, sometimes it takes me 30 min to take all 3! Still itchy, headaches, etc but the bruising seems to be better!

Week 6: Finally decided to share this journey with 2 of my friends, i think it helped me mentally and they were supportive (i knew they would be, i just didn't want to talk about it) Got my results back for my yearly brain scan and all is good for now! Need to get vision checked but thinking to do it after tx.

Week 7:Tried to do some gardening, hubby does almost everything but the weather was so mild that just being outside is therapeutic. i still have some brain fog, am hopeful that will get better, hubby is still very foggy and forgetful. Will it get better?
 
Starting week 8 today, then blood work next week, i will be so happy to be done! Hubby's treatment was for 12 weeks, he started before me and finished up last week, i told him i'd hide my pills so he doesn't accidentally take them because he forgot he was done! we had a good laugh..

And our awesome daughter bought hubby a new keurig cappuccino/latte/coffee  machine! So many blessings

my question is 25 IU/mL good? (my 4 week blood)
When hubby goes back for his checkup should we ask for a fibroscan? instead of just the ultrasound?  Which is the most reliable for the f4? should we also ask for the liver fibrosis blood test again? He gets to do his follow up with the PCP..

Thank you!

Offline Nanato6

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Re: starting 3rd week on mavyret
« Reply #6 on: April 15, 2019, 12:01:05 pm »
one more question: has anyone had diabetes type 2 with this virus? i read somewhere it can increase blood sugar and would it resolve after treatment? if it does how long to wait to see if it resolves?
Thanks!

Offline Lynn K

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Re: starting 3rd week on mavyret
« Reply #7 on: April 15, 2019, 02:24:21 pm »
As far as the 25 on the viral load the only test that matters is the 12 week post treatment test. While it’s nice to see not detected at week 4 there have been many who achieved SVR12 and are cured who were weakly detected on treatment and a small few like myself on my first treatment with Sovaldi and Olysio two of the new DAA’s when they were first being approved who were not detected at 4 weeks and at EOT but at 12 weeks post I was found to have relapsed.

The important thing is you had a substancial drop in viral load.

If you or your husband had either Fibroscan test or fibrosure blood test they are both about the same for diagnosing cirrhosis. Ultrasound really is not used to diagnose cirrhosis but it can note changes in liver surface roughness to confirm a diagnosis of cirrhosis by other means like Fibroscan. Ultrasound for us with cirrhosis is used to primarily to look for early signs of HCC. 

For those of us who are F4 we need to have liver ultrasounds most likely for life to monitor for liver cancer as we are at an increased risk due to having cirrhosis but the risk of HCC is reduced with cure of hep c.

Some have seen improvements on Fibroscan or fibrosure tests post treatment it depends on how much liver damage has occurred before cure and also if there are other things causing liver damage like fatty liver or if one is drinking alcohol as well as other possible causes of liver damage beyond hep c.

For myself now 4 years post cure my pre treatment Fibroscan was 27, one year post it was 33, and now at 4 years my last Fibroscan was 29. So I haven’t really had any improvement in that area although my platelet count has improved from around 85 to 110 then most recently 125 so still below normal of 150 but improving.

Anyway I would wait about a year after treatment to check on Fibroscan or fibrosure to give the liver an opportunity to begin to heal. Having both a Fibroscan and fibrosure isn’t really necessary they both check the same thing just in different ways. Being F4 he should be having an abdominal ultrasound and AFP blood test along with the other usual blood tests like liver panel and CBC every six months for the foreseeable future to monitor for early signs of HCC along with a visit with the liver specialist every year. That is what I’ve been doing for a couple of decades. I would hope he would continue to follow up with his liver specialist at least annually as a liver specialist is best equipped to follow patient like us with ESLD cirrhosis. I see both my general practitioner and my hepatologist who works at a liver transplant center at the Iniversity of Washington.

Best of luck with the rest of your treatment
« Last Edit: April 15, 2019, 02:32:08 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Nanato6

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Re: starting 3rd week on mavyret
« Reply #8 on: April 15, 2019, 08:05:16 pm »
Lynn K, Good info, thanks for taking the time to reply! His platelet count was 218 but i didn't see the AFP on his chart, i will ask them about it for his next visit. that is kind of what i was looking for to see how we would know if there is any improvement.. :)

Offline Lynn K

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Re: starting 3rd week on mavyret
« Reply #9 on: April 15, 2019, 09:25:06 pm »
That is a great platelet count well in normal range. You said he was diagnosed with cirrhosis? How long do you think he may have had hep c? Usually the first lab test to go sideways is the platelet count.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Nanato6

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Re: starting 3rd week on mavyret
« Reply #10 on: April 16, 2019, 10:38:47 am »
Yes! i have wondered about the severity of the diagnosis. His ultrasound said No signs of cirrhosis/fibrosis. LIVER:Size: Normal.Contour: Normal. Echogenicity: Normal. Ductal dilatation: None.Lesions: Negative..

When we asked his doc about it, he said that was to see if he has liver cancer. later i thought why didn't it say no signs of liver cancer? we had the scans done at the same place and mine said the same except Negative right upright ultrasound where his said No signs of cirrhosis/fibrosis.

ast and alt were always normal, no signs or symptoms.

there is a calculator to determine fibrosis and if you change the age it makes a difference. the mystery is where and when did we get this? the only blood product we got was a gammaglobulin shot for hep a exposure in 1987. it was at different health dept so that could explain why i have a mutation and he doesn't. we went to same pcp, dentist since 1973. he had injections for back pain in 1999, back surgery in 2000, some other minor surgeries.. we always had a good diet, no alcohol, good weight.

so maybe he hasn't had this as long as suspected, that's my hope and that we will see improvement all around!

God bless

Offline lporterrn

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Re: starting 3rd week on mavyret
« Reply #11 on: April 16, 2019, 11:13:04 am »
Hi,
The ultrasound is used for cancer screening, and although his doesn't specifically state it the way yours does, it does say no lesions, so he's clear. Ultrasounds aren't as good at detecting cirrhosis, but in this case, it looks like if your husband has cirrhosis, it was caught so early that he may be one of the lucky people where it may be reverse with successful treatment. His job will be to help it along by continuing to eat well (careful on the refined carbs/sugars), keeping his weight at normal levels, and regular exercise.

As for where you got it, we think dentists before the precautions came out post-HIV epidemic may have been a source. Ditto on the gamma globulin.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline Nanato6

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Re: starting 3rd week on mavyret
« Reply #12 on: April 17, 2019, 11:10:07 pm »
Lporterrn: Yes! we are hoping he is the lucky man! we are also realistic as far as the reliability of tests and treatments, sometimes it seems the more we learn the less we really know. we are *fearfully and wonderfully made* I'm thankful i never knew about this until i needed too and that there is a treatment! i feel like my 15 year old son felt when he was diagnosed with type 1 diabetes, we cried together and he said it could be worse and it's not cancer! we got him in a clinical trial at emery university, he was insulin free for 6 years and 3 months before it came back for 2 months then free for another year. he was a luck boy, it is 6 months before he gets an app with a specialist, hoping he'll get another remission as we have been blessed!

Offline lporterrn

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Re: starting 3rd week on mavyret
« Reply #13 on: April 18, 2019, 10:13:22 am »
Wow - that is an incredible story! Thank you for sharing it.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline Nanato6

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Re: starting 3rd week on mavyret
« Reply #14 on: May 01, 2019, 10:40:53 am »
Doing happy dance! done with meds, blood work was

HCV RNA QN PCR (IU/mL)   <15 IU/mL   
HCV RNA QN PCR (Copies/Ml) <1.18 log IU/mL   

Now we just need to wait the 12 weeks until blood work again! 

The past week has been better, some more good days..i have so much i want to do and need to remember to pace myself, fatigue is still there so it may be from my other issues, i had an aura migraine, i get them occasionally, it is not painful but they do wipe me out for the day, still achy, not as itchy, still some flareups of pain but they seemed to resolve faster than before,  mentally much better, just knowing the virus is gone!

ALT was 16 up from 12 in march..53 at start
AST was 21 up from 17 in march..61 at start
 Platelets 214 down from 248 in march..197 at start

are there any other tests i should be looking at?

Hubby's ALT 37 at start, now 19
AST 25 at start now 19

We meet with hubby's new PCP next week, he's new, a baby, our Dr for 35 years has retired! i'm going with hubby as he asked me to, so i have my list of questions!

i'm the one they see and say 'oh no, she's got her list, so many questions!'
my next blood work is July, see Dr in Aug!

God bless


   

Offline Lynn K

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Re: starting 3rd week on mavyret
« Reply #15 on: May 02, 2019, 07:23:26 pm »
Hey congrats on the HCV RNA test results that’s great!

Did you also see “NOT DETECTED” on the lab report? What you posted is actually the lowest level the test can detect the virus basically the sensitivity of the test.

But anyway great news and I’m sure you were not detected no viral load detected to report.

ALT and AST will vary as long as they are in normal range is the important thing. My AST results have been elevated recently but that is likely due to being a bit overweight BMI 30 and having some issues with fatty liver. Hep c is not the only reason our liver enzymes may rise above normal.

Platelet counts can vary as well mine were about 85 before treatment and now 4 years post about 110.

The results I’m mostly interested in are my platelet count hoping someday they may get back into normal range, my AFP hoping it someday gets into normal range now just 0.6 above normal of 8.3 and my liver enzymes but mostly because I’m hoping to see improvement if I lose some weight and resolve the fatty liver issue

Best of luck on your SVR 12 testing
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

 


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