Day 1... here we go

This topic has 85 replies, 27 voices, and was last updated 6 years, 11 months ago by erica.

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10 January 2017 at 2:11 am #24941
coral
- Topics: 8
- Replies: 598
- Total: 606
- Guardian Angel
@coral
Hi Leesa,

It was great to see your first post and a lot of positive energy! I think the fact that you feel fantastic is a good indicator that the magic medication is doing it’s job. I’m really pleased to hear that your NZ doctors have been so supportive – great results can’t be ignored.
I look forward to hearing about those first blood results.

Coral
1 March 2017 at 7:14 am #25434
jteisan
- Topics: 0
- Replies: 4
- Total: 4
- Novice
@jteisan
I am at day 30 of 84 with generic harvoni. From day one, I have had a sensation of lightheadedness and flush in my face. My viral load went from 1,800,000 to 400 in the first 28 days. I have 54 days left. My doc called me and congratulated me for getting the offshore treatment. He was not a believer or supporter at first. I am happy to say that he has come around and will support me in the redemption trials with the blood tests.
1 March 2017 at 7:59 am #25435
Dr James
- Topics: 264
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- Guardian Angel
@fixhepc
Hi JT,

I’m glad you posted. Although 1,800,000 to 400 is a good drop it’s not where we like to see things at this point.

We should have a chat about it. That can be online here or offline.

The upshot is that in a VA study of 4200 veterans taking Harvoni the overall SVR rate was 91.3% but for patients still detectable at 28 days it was more like 82%.

So to improve those odds for you we should be making a bit of a change to your treatment by either adding another drug or extending it with something more potent.

Your odds of SVR are still good if we do nothing but this is an early warning your personal HCV is relatively resistant and could do with being hit with a bigger hammer.

YMMV
1 March 2017 at 11:18 pm #25439
jteisan
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- Replies: 4
- Total: 4
- Novice
@jteisan
This is the blood test at day 28:
TEISAN,JERRY22245491(1).pdf
2 March 2017 at 4:54 am #25443
Greedfighter
- Topics: 28
- Replies: 582
- Total: 610
- Guardian Angel
@greedfighter
Hi jteisan,

You need to consult with Dr. Freeman, he is one of the leading experts; he is certainly the leading expert in Generic HCV treatment in the world. Follow his advice. He will cure you.

Book a consultation with him at http://www.gp2u.com
2 March 2017 at 8:19 am #25444
jteisan
- Topics: 0
- Replies: 4
- Total: 4
- Novice
@jteisan
I dont know how to reach dr Freeman.
2 March 2017 at 8:41 am #25445
Iain
- Topics: 7
- Replies: 23
- Total: 30
- Treatment Warrior
@iain
jteisan, Dr Freeman is Dr James Freeman and he has posted to you on this page (username James-Freeman-facebook) and you can book an online consultation with him through GP2U as Greedfighter mentioned (www.gp2u.com).
16 March 2017 at 2:22 pm #25604
CameraLady
- Topics: 2
- Replies: 4
- Total: 6
- Novice
@cameralady
Day 1 here we go. I am 39 and have had this thing since the day of my birth when my hippy parents decided to have me without any medical help. My dad cut my umbilical cord and mixed my mothers blood directly with mine. I found out I had it when I was 21. Since then every medical professional has tried to pressure me into taking Interferon which I point blank refused. I knew the long gestation period of the disease and decided to wait for the medicines to catch up.
Well finally the day has arrived. Thanks to the buyers club and Monkmed I have purchased a course of Harvoni and am now on the way to clearing it for good.
The NHS clinic (Royal Sussex County Hospital in Brighton, UK) I have been seeing for the last 8 years, since I fell pregnant with my daughter, has been amazingly supportive. The lead nurse has personally challenged the status quo in the NHS and has developed a waiver system so that they are able to monitor those of us who choose to purchase the new drugs through the buyers club. This system has been in place for the last 3 months.
I feel blessed, anxious, nervous and emotional.
Wish me luck!

Genotype 1a
Fibroscan 7.2
ALT 126
AST 73
Viral Load 2,269,107

Started Harvoni 16/03/2017
17 March 2017 at 12:36 am #25607
Hazel
- Topics: 45
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- Total: 414
- Guardian Angel
@hazel
Welcome Cameralady,
Great to hear you are underway! Lifelong under the shadow of the dragon, what a journey. I will be keen to hear how you go evicting it!
Also good news about your nurse. The collective wisdom is, take at same time every day, drink plenty of water, try to surf over any ups and downs- you may not get any- and keep in touch! I came out from under after 30 years of HCV, (thanks to fixhepc) and it is a wonderful feeling.

Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
18 March 2017 at 6:21 am #25619
jteisan
- Topics: 0
- Replies: 4
- Total: 4
- Novice
@jteisan
Great to hear CameraLady, am at day 58 of my own cure. Hope all goes well. You will find all the support you need here to follow your recovery.
23 March 2017 at 9:16 pm #25670
Edge
- Topics: 1
- Replies: 19
- Total: 20
- Treatment Warrior
@edge
Hey Cameralady – welcome and thanks for sharing. Hopefully your experience will be a good one!

To everyone else, I’ve been quiet for a long time! No real reason, just busy with life etc. For those who maybe don’t remember, I relapsed from interferon/ribavirin combination so had been prescribed two courses of generic Harvoni. I am now 18.5 weeks into my 24 week course. Looking forward to getting the last two bottles of pills finished.

As discussed earlier, my sleeping drastically improved and became much deeper to begin with. Sadly I can report that for about the last 10 or 12 weeks I’m back to being a light sleeper. The faintest sound wakens me most nights. My initial burst of new found energy has been replaced with continual tiredness, which I link to the light sleeping but also pressures from work. Had issues with headaches in the early weeks. The advice of everyone else re. drinking water definitely helped. Pleased to report that even after days when I haven’t managed to drink much water I am not noticing the same headaches.

I’ll need to have some more blood work done and will update on this as soon as I have results.

Genotype 1B

SVR 24 (10/17/17): VL UND / ALT 25 / AST 17

SVR 12 (7/25/17): VL UND / ALT 21 / AST 14

SVR 4 (5/31/17): VL UND / ALT 21 / AST 19

EOT (5/1/17): VL UND / ALT 32 / AST 22
T+19w (3/27/17): VL UND / ALT 23 / AST 20
T+4w (12/12/16): VL UND / ALT 31 / AST 24
T+0w (11/19/16): VL 343,484 / ALT 36 / AST 28

Previous treatment in 2012: 48 weeks peg-interferon/riba, relapsed at some point in the 24 weeks post treatment (around 2014). Found redemption trials and applied in Aug 2016.
24 March 2017 at 5:42 pm #25678
CameraLady
- Topics: 2
- Replies: 4
- Total: 6
- Novice
@cameralady
Hi Edge

Thanks for your message. Can I ask when your initial burst of energy arrived? I am fortunate not to have to juggle this with work, although I am in my final year of my degree so am reconciled to having to get extensions for most of my work due to the big sleep I am experiencing. I’m on day 9 now and still sleeping around 16hrs a day.

Have you tried sleeping with ear plugs in to minimise your sleep disruption?

Kindest regards

Star

Genotype 1a
Fibroscan 7.2
ALT 126
AST 73
Viral Load 2,269,107

Started Harvoni 16/03/2017
24 March 2017 at 8:10 pm #25679
Edge
- Topics: 1
- Replies: 19
- Total: 20
- Treatment Warrior
@edge
Star… I’d say for me it was around the three week mark. I was generally feeling much better about everything. You will definitely start to feel it too, probably coinciding with your viral load getting close to zero. For me, I’m concerned that the energy didn’t last! You mention ear plugs… haha. My wife says I ignore her at best of times. Adding ear plugs is a no go, though mostly because of the kids. I want to do my fair share with them.

Keep looking forward. It won’t be long before you get to the end of week 4.

Edge

Genotype 1B

SVR 24 (10/17/17): VL UND / ALT 25 / AST 17

SVR 12 (7/25/17): VL UND / ALT 21 / AST 14

SVR 4 (5/31/17): VL UND / ALT 21 / AST 19

EOT (5/1/17): VL UND / ALT 32 / AST 22
T+19w (3/27/17): VL UND / ALT 23 / AST 20
T+4w (12/12/16): VL UND / ALT 31 / AST 24
T+0w (11/19/16): VL 343,484 / ALT 36 / AST 28

Previous treatment in 2012: 48 weeks peg-interferon/riba, relapsed at some point in the 24 weeks post treatment (around 2014). Found redemption trials and applied in Aug 2016.
24 March 2017 at 9:44 pm #25680
Mnem
- Topics: 3
- Replies: 101
- Total: 104
- Guardian Angel
@mnem
Star, ‘sleeping around 16 hours a day’ when you are now nine days into treatment sounds like it is challenging for you. Dr James replied last week on https://fixhepc.com/forum/helpful-hints-during-treatment/1516-i-m-so-tired.html#24023 saying that this (sleepiness) should disappear after a week or so. Sleeping as much as 16 hours a day is disabling if it prevents you getting good meals, hydration, exercise, sunlight, and the other good stuff that supports recovery.

I am not a doctor but I would suggest that if your somnolence persists much longer, that you should speak with your own doctor to see if there is something more going on than you would normally expect.

G2, infected maybe in 1971?
Diagnosed HVnon-A non-B 1980s, revised to HVC 1990’s.
Treatment naive. Fibroscan & bloods all normal ranges.
Viral load 7million,
began Redemption trial4, 12-week generic Sof/Vel (Incepta) 2017. Week 4 UND, Week 12UND, SVR24
Thank-yous to my doctor for the script, to Jan at FixHepC for wrangling, and to Dr Freeman for courage.
Kia kaha e hoa ma!
25 March 2017 at 1:22 am #25681
Dr James
- Topics: 264
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- Guardian Angel
@fixhepc
Hi Cameralady,

I expect your energy will return soon.

Useful lifestyle things are nutrition, sunlight and exercise.

Getting a good dose of sunlight suppresses melatonin production and makes you less sleepy. Going for a walk in the sunlight ticks 2 boxes. This assumes there is sunlight!

Opening the curtains in the bedroom so it becomes light in the morning also helps.

Vitamin B12 and D and adequate hydration help some people.

YMMV
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