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Author Topic: Insomnia day 2  (Read 18152 times)

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Offline JeanJ

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Insomnia day 2
« on: November 17, 2017, 08:30:56 pm »
Just started harvoni at 6 pm tonight, so far ok. less nervous now than I have been last couple days waiting on insurance approval and taking first pill, that's done now. lol.

I am hep c 1b, I was diagnosed in 2015, 762634 for quantitative and 5.88 on log, ast 19, and alt 13. I was too scared to do treatment at time. I went to gastro specialist for Gerd issues and he said he would also treat the hep c after my endoscopy & colonoscopy, He did labs again, 215000 for quantitative and 5.32 on log. ast 23 and alt 33.
« Last Edit: November 19, 2017, 02:46:25 pm by JeanJ »

Offline andrew j

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Re: Day 1 harvoni
« Reply #1 on: November 17, 2017, 11:38:36 pm »
Hi Jean - and welcome!

I'm not so good at interpreting results - so I'll leave that for others.

Most people have only very mild side-effects.
That was certainly the case for me, and hopefully it'll be the case for you, too.
Make sure to stay well hydrated, and eat as well as you can.

Good luck on your Harvoni journey!

Best wishes,
A.

P.S. Are you doing 8 weeks or 12?

Offline JeanJ

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Re: Day 1 harvoni
« Reply #2 on: November 18, 2017, 07:06:30 am »
Morning,
Hi Andrew, thank you.

I took pill at 6 and was out by 815, only woke up 2x briefly until 5, quesy this morning, and mild headache. still tired. I have 8 weeks of treatment. trying my morning cup of coffee. at least I don't have to be to work until Monday and this is short week, only 3 days.


Offline andrew j

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Re: Day 1 harvoni
« Reply #3 on: November 18, 2017, 04:50:36 pm »
Good.

Yes - those are 'to-be-expected' side-effects, and should be mild, and transient.

After a while you might feel energised after taking your pill (= 'Harvoni High').

I was really unwell when I had Hep C - so the side-effects were oddly pleasurable for me.
... I knew the meds were working!

I thought you would probably be on 8 weeks.
Your viral load is relatively modest (variation to be expected) and your liver readings (ALT and AST) are normal-ish.

Keep us posted!

A.


Offline JeanJ

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Re: Day 1 harvoni
« Reply #4 on: November 18, 2017, 05:19:10 pm »
Thank you Andrew,

I am ready for next dose in couple hours 1 hour 45 min lol, I only have 1 refill left and now my insurance is wanting to mail order it Cigna, I have heard bad things about their mail order, I am hoping I can stick with current pharmacy for last refill. Has anyone else had this issue?

Offline JeanJ

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Re: Day 1 harvoni /day 2
« Reply #5 on: November 19, 2017, 04:11:44 am »
ok, insomnia has kicked in, took it at 6 pm, instead of out like a light 2 hours later, and slept 9 hours, it was 10-12 slept, up briefly, back to sleep from 12-2, been wide awake since, I am so tired, but can't sleep? I wonder if I will crash later?

Offline JeanJ

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Insomnia
« Reply #6 on: November 19, 2017, 02:45:16 pm »
ok, I am on day 2, about to start 3rd pill and haven't slept but 1-2 hours briefly, slight headache maybe from lack of sleep?

Offline KimInTheForest

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Re: Insomnia
« Reply #7 on: November 19, 2017, 05:06:25 pm »
ok, I am on day 2, about to start 3rd pill and haven't slept but 1-2 hours briefly, slight headache maybe from lack of sleep?

Hi Jean. You may want to shift to a morning dosing time instead of 6 pm at night. Many of us experienced a 'Harvoni High' that was quite animating for first 8 hours after taking it. I would not have gotten much sleep at all if I had taken mine at night. Whereas by taking it in morning, I got the benefit of a big boost in energy and mood. To shift your dosing time, shift it by 2 hours per day until you reach the time you want.

Just one possible solution...

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline JeanJ

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Re: Insomnia day 2
« Reply #8 on: November 19, 2017, 05:15:37 pm »
Thank you Kim,

I am going to call pharmacist in morning and ask, still wide awake now, I am now wondering what labs have to be done still and all? I have been reading 4 weeks, and then 12 weeks after, I am ready to be cured from this and happy I have finally started treatment.

Jeanne

Offline KimInTheForest

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Re: Insomnia day 2
« Reply #9 on: November 19, 2017, 05:20:58 pm »
Those are common intervals/times for doing labs - after first 4 weeks of treatment and then 12 weeks post-treatment. But really the only one that matters is 12 weeks post-treatment. I had many more labs done - often weekly - because I got my drugs through a clinical trial so there was a lot of data collection. Normally each doctor decides how much to do. So long as your doctor schedules labwork (including the viral load test) for 12 weeks post-treatment, you're good! But it is always nice to see one's progress as you go along. Even if it is just liver enzymes returning to normal after many years of not.

Good luck Jeanne!
kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline JeanJ

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Re: Insomnia day 2
« Reply #10 on: November 19, 2017, 05:48:17 pm »
Kim,

Thank you, I am looking forward to 4 week testing which should be around December 14 is when I take day 28 pill. Time will go fast. Have a great evening..

Thank you again,

Jeanne

Offline andrew j

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Re: Insomnia day 2
« Reply #11 on: November 22, 2017, 05:52:56 pm »
Hi Jeanne,

How's the insomnia?
Better I hope.

Something I've been wondering:

I don't really know anything about GERD - but it seems to require strategies to reduce acid?
If that's the case - you need to be careful managing acid-reducing meds with these drugs.

Don't know if it's relevant? ...

A.

Offline JeanJ

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Re: Insomnia day 2
« Reply #12 on: November 22, 2017, 06:26:20 pm »
Hi Andrew,
Pharmacist had me switch from 6pm to 10 am next day, and then 7 am today, so I will be taking at 7 am before work, slept pretty good last night, been up all day, so tonight should be good. I took myself off Protonix & ranitidine over a year ago, quit the protonix first was getting vertigo and sick to stomach alot after being on it for over 5+ years, doctor said ok, but was hesitant, stayed on ranitidine another 6 months, added tums as needed, then took myself off that cause I knew if I did treatment I had to be off both for at least a year I was told. stomach did much better after eliminating both and sticking with tums, but in sept, flared up again, so went to gi specialist and he stretched my esophagus first weekend in November and had me do labs to treat hep c. he said I could use tums but using 4 hour before & after harvoni, been doing really well, just an occasional tums and usually if I eat stuff that causes heartburn, like my chocolate attack other day, ate 3 mini Hershey's, kicked my heartburn lol. headache is right now non existent, I did notice I was very alert yesterday at 430 (6 1/2 hours into harvoni but that only lasted about an hour or so. doing good today, I usually do naps when home or off early and have avoided that today, am off next 4 days, so am laying low. lol. Thank you Andrew for asking, I am looking forward to 4 week labs according to pharmacist and then again at 12 weeks after last pill. 4 week labs should be back just before Christmas so I am praying they show undectected. Have a Happy Thanksgiving!

Jeanne

Offline andrew j

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Re: Insomnia day 2
« Reply #13 on: November 22, 2017, 06:38:57 pm »
Hi Jeanne,

You seem happier with the morning time-slot.
That's good, isn't it?
I used to take mine at 9 p.m. with dinner - but I was too anxious to move the time to the a.m.!

I live in New Zealand ... we don't do Thanksgiving here - but I will accept your best wishes anyway, and maybe celebrate them with a nice bit of choc.?!
« Last Edit: November 22, 2017, 08:43:27 pm by andrew j »

Offline JeanJ

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Re: Insomnia day 2
« Reply #14 on: November 22, 2017, 06:43:41 pm »
Hi Andrew,

Enjoy chocolate, I am learning to limit mine, although white chocolate doesn't seem to do as bad as milk chocolate. lol I haven't missed a dose even switching to morning, just took it 16 hours later instead of 24 which he said was ok, better earlier then missing 6pm dose and taking next morning. I am already ready for labs lol.

Thank you,

Jeanne

Offline KimInTheForest

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Re: Insomnia day 2
« Reply #15 on: November 22, 2017, 08:10:47 pm »
Glad to hear that the switch to a morning dosing time is working for you Jeanne!

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline JeanJ

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  • Posts: 22
Re: Insomnia day 2
« Reply #16 on: November 25, 2017, 07:06:06 pm »
Hello all,

Doing good, taking harvoni at 7 am, getting sleep, start of bladder infection, drinking cranberry juice & more water, read somewhere emergen c helps, this being sat, doctor not in till Monday am, but I will make it, I am on day 9 and doing good I think. Ok, will keep posted. Have a good weekend!

Thank you,

Jeanne

Offline JeanJ

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Re: Insomnia day 2
« Reply #17 on: December 02, 2017, 01:58:20 pm »
Good Morning All,

I am on day 16, feeling much better, not as tired as I used to be, napping throughout days off is becoming thing of past, I am ready for 4 week labs and anxious to see results. I am glad I started treatment. I was really hesitant, took 2 years to start. Have a great day!

Jeanne

Offline andrew j

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Re: Insomnia day 2
« Reply #18 on: December 02, 2017, 03:20:45 pm »
You too, Jeanne!

Offline Lynn K

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Re: Insomnia day 2
« Reply #19 on: December 02, 2017, 07:15:03 pm »
Happy to read you are feeling better and able to sleep

Good luck with the rest of your treatment
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 JeanJ

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  • Posts: 22
Day 16 Harvoni
« Reply #20 on: December 02, 2017, 07:41:58 pm »
Thank you Andrew & Lynn,

Have a great weekend!

Jeanne

Offline JeanJ

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Day 33 Harvoni
« Reply #21 on: December 19, 2017, 08:44:15 pm »
I am doing great, more energetic, anxious to get lab results, had my GI do labs after 4 weeks, 12/14, did labs 12/15 waiting results. Have a great weekend & wishing everyone starting treatment, in treatment, and cured the best!

Jeanne

Offline Lynn K

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Re: Insomnia day 2
« Reply #22 on: December 19, 2017, 09:56:12 pm »
Great news and happy to hear you are doing better!
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 JeanJ

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Re: Insomnia day 2
« Reply #23 on: December 20, 2017, 07:12:50 am »
Thank you Lynn. Have a Merry Christmas!

Jeanne

Offline JeanJ

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4 week lab results
« Reply #24 on: December 23, 2017, 06:36:25 am »
Good Morning,
I have got the best Christmas present ever, my labs came back yesterday. PCR quantitive shots not detected, HCV viral log also not detected, AST went from 23 on October 9 to 21 on December 15th, ALT went from 33 to 14 also. I was so happy, I still have 19 pills to finish and labs again after April 5th. I am feeling so much better. not tired all the time, and I am hoping all the acid that was in stomach stays gone. I am thinking hep c was cause of reflux, as I have had zero issues in last couple weeks. Have a Merry Christmas!!

Jeanne
« Last Edit: December 23, 2017, 06:41:42 am by JeanJ »

Offline andrew j

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Re: Insomnia day 2
« Reply #25 on: December 23, 2017, 03:44:51 pm »
Same to you, Jeanne - and congrats on the results!


Offline KimInTheForest

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Re: Insomnia day 2
« Reply #26 on: December 23, 2017, 09:56:18 pm »
Fantastic Jeanne! Congrats!

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline JeanJ

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End of Treatment, now waiting
« Reply #27 on: January 13, 2018, 03:52:46 pm »
I finished 8 weeks of Harvoni on thursday Jan 11, 2 years ago, I didn't think I would ever do treatment, but I finally got brave enough and did it. I am feeling much better and am anxiously awaiting for April 5th to be here now. My 4 week labs showed not detected, so I am having faith that my 12 week labs will be the same. Good Luck to anyone considering treatment it is well worth it, my health is much better than it was the beginning of November. For those in treatment, I also wish the very best for you. I feel like I have made the right choice by going thru with treatment. No regrets & will keep you posted.

Thank you everyone for responses. Have a great New Year! I am!

Jeanne

Offline KimInTheForest

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Re: Insomnia day 2
« Reply #28 on: January 13, 2018, 03:55:09 pm »
Congrats on finishing treatment, Jeanne! Happy New Year to you too. :)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline JeanJ

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treatment done
« Reply #29 on: January 13, 2018, 04:00:23 pm »
Thank you Kim,

Offline JeanJ

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12 week results
« Reply #30 on: April 24, 2018, 07:11:34 pm »
I am kinda disappointed, I started harvoni in  November 2017, finished Jan 11, 2018. my labs at 4 weeks on dec 15th showed:
HCV RNA, PCR QUANT not Detec
HCV VIRAL LOG  not Detec

I just got labs today        result.    flag.    unit
HCV RNA, PCR QUANT.   <15          A.       IU/ML
HCV VIRAL LOG.             <1.176     A.       LOG IU/ML
HCV QUALITATIVE INTERP.   POSITIVE  A

It says at bottom the expected result is NOT DETECTED.

I called my Gastro, and the nurse said I was cured. Shouldn't the log and the quant show NOT DETECTED instead of <15 & <1.176 ?  So do I still have traces of hep c in my system? I am wondering if I should go to Tx Liver Specialists in Austin. Confused on results.

Offline Lynn K

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Re: Insomnia day 2
« Reply #31 on: April 24, 2018, 09:27:33 pm »
As far as I know it should say not detected. However hep c does not sneak back in it comes roaring back if you were relapsing.

When I treated with Sovaldi and Olysio I was not detected at EOT but 12 weeks later I was found to have relapsed and my viral load was slightly higher than my pre treatment levels at 2.4 million so it was very obvious what had happened. I suggest you speak with your liver specialist vs the nurse and maybe asking about having another test at 6 months post treatment.

Good luck please let us know what is going on
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 JeanJ

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Re: Insomnia day 2
« Reply #32 on: May 11, 2018, 08:53:55 pm »
I have called Texas Liver Institute and sent them all my labs, I have an appointment on the 22nd of May, but she said from looking at labs that the doctor should not have told me I was cured, she said the labs look inconclusive on final labs. Now waiting till 22nd, not that far away which is good.

Offline Lynn K

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Re: Insomnia day 2
« Reply #33 on: May 12, 2018, 03:16:34 am »
Ok I just re read your post.

HCV RNA, PCR QUANT.   <15          A.       IU/ML
HCV VIRAL LOG.             <1.176     A.       LOG IU/ML

This is the standards of the tests limits

The lowest level the test is capable of detecting the virus is <15 IU/ML which is read as “less than 15 international units per milliliter. This describes the capability of the test it is not your result.

The other number 1.176 is the same number (15) on the logarithmic scale a different mathematical number system. But again this is describing the sensitivity of the test not your result.

If you had the virus there would be a viral load which I don’t see.

Not sure what “HCV QUALITATIVE INTERP.   POSITIVE  A” means

This was my pretreatment test result

HCV RNA RT-PCR, QT   2065760 IU/mL   See Notes IU/mL
HCV LOG 10   6.315 log10 IU/mL   See Notes log10 IU/mL
HCV QNT TEST INFO   See Below     See Notes

The quantitative range of the assay is 15 IU/mL to 100 million IU/mL
using COBAS(R) TaqMan(R) HCV test, v 2.0. The limit of detection (LOD)
and lower limit of quantification (LLOQ) for this assay is 15 IU/mL.
Results less than the quantitative range of the assay will be reported
as "HCV RNA detected, less than 15 IU/mL".

This was my last HCV RNA by PCR test result drawn one year after treatment in March 2016

HCV RNA RT-PCR, QT   See Below IU/mL   See Notes IU/mL
HCV Not Detected
HCV QNT TEST INFO   See Below    See Notes

The quantitative range of the assay is 15 IU/mL to 100 million IU/mL
using COBAS(R) TaqMan(R) HCV test, v 2.0. The limit of detection (LOD)
and lower limit of quantification (LLOQ) for this assay is 15 IU/mL.
Results less than the quantitative range of the assay will be reported
as "HCV RNA detected, less than 15 IU/mL".

I think you might be not detected but really confused by the “HCV QUALITATIVE INTERP.   POSITIVE  A” means

Let us know what you find out
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 Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Insomnia day 2
« Reply #34 on: May 12, 2018, 03:38:18 am »
They only other think I can think of is the virus is detected but your viral load is less than 15 IU/mL which seems really odd.

From all I have read the virus comes back within the first 12 weeks post treatment after that relapse is almost unheard of. And if the virus does come back there would be a much higher viral load than less than 15 IU/mL

If your doctor said you are cured and the nurse is not sure I would lean toward what your doctor has said. Doctors are much more knowledgeable about interpretating test results.
« Last Edit: May 12, 2018, 03:47:26 am 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!

 


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