Hello - FixHepC

This topic has 16 replies, 13 voices, and was last updated 7 years, 8 months ago by Jimmy6429.

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3 November 2016 at 1:27 pm #24149
Tatty
- Topics: 2
- Replies: 11
- Total: 13
- Acolyte
@tatty
Hi everyone, I thought I would introduce myself properly.

I was diagnosed in Sept 15, after a very old friend came to tell me ex husband (who was 20yrs older than me) had died of liver cancer due to HepC. He urged me to go and get tested even though it had been all that time ago, and I was fit and healthy. He wouldn’t leave until I agreed to go get tested.

My doctor told me it was highly unlikely but he would do the tests. I was tested for HIV, HepA, HepB, HepC. Hep C was positive! To this date, apart form the medical people involved, this friend is the only person who knows. I was devastated!

I have had high liver test results for years alts and P3NP, I was on Methotrexate(MTX) for my skin for 8 years. Known side effects are raised liver results. You have to be monitored monthly while on this medication. My levels in the last few years started to creep up and up each time. I was sent for a liver biopsy in May 2015 (before dx) and told there was slight fatty tissues consistent with MTX use. I was taken off MTX. Now in hindsight I realised these raised levels could have had as much to do with the Hep C as anything.

My hepatologist did not want to put me on any treatment as I was so well and the available treatment would worsen my psoriasis. Said there was better treatments round the corner come back in 6months. Same said in that meeting in April 16. Prior to my next six monthly appt on 22/09/16 I re-read the Liver Trust website and looked in to funding my own treatment, got all the details had a chat with someone there and went to my next appt with all the info. To my delight my specialist was just as enthusiastic about me doing it as I was. I expected him to try and discourage me. My own GP has been just as helpful. They have agreed to do all my monitoring. My GP gave me his email address so I could get in touch with him at any time. He even phoned me last Saturday to see how I was getting on as I had not been in touch. The person I spoke to in Australia at FixHepC (Jan), the person at Monkmed (Tim) and Dr Debasis in India have all been so very helpful.

I had my appt on the 22nd Sept and the new drugs were in my hand on the 6th Oct !!!

GT3a diagnosed Sept 15 believe contacted 25+ yrs ago
VL 1.6mil ALT. 41
Started Sof/Dac Redemption Trial 7/10/16g
Wk 4. Undetectable. ALT. 14
Wk 8 Undetectable
Wk 12. Undetectable End of treatment.

SVR 12. Undetectable
3 November 2016 at 4:04 pm #24150
coral
- Topics: 8
- Replies: 598
- Total: 606
- Guardian Angel
@coral
Hi Tatty and welcome,

Thanks for sharing your story. You really had some difficult news to deal with in a short space of time. What a great friend you have to be so insistent that you get yourself checked.

Well done for taking control of this and getting yourself on treatment so quickly. It is so encouraging to hear about the support you are getting from your specialist and GP as it hasn’t always been the case.

I can see that you’ve been on treatment for just over a month so your next blood results should confirm that the medication is doing it’s job and doing it really well.

I’ve found so much support on this site and I know you will too.

Looking forward to hearing about those results.
14 November 2016 at 10:15 pm #24285
Tatty
- Topics: 2
- Replies: 11
- Total: 13
- Acolyte
@tatty
I got my week 4 results today and it says undetectable, also my ALT is down to 14.

GT3a diagnosed Sept 15 believe contacted 25+ yrs ago
VL 1.6mil ALT. 41
Started Sof/Dac Redemption Trial 7/10/16g
Wk 4. Undetectable. ALT. 14
Wk 8 Undetectable
Wk 12. Undetectable End of treatment.

SVR 12. Undetectable
15 November 2016 at 1:24 am #24290
Gaj
- Topics: 29
- Replies: 1,402
- Total: 1,431
- Guardian Angel
@gaj
Great newsTatty!

G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
15 November 2016 at 1:30 am #24291
Tommy
- Topics: 16
- Replies: 88
- Total: 104
- Guardian Angel
@tommy
Tatty wrote:

I got my week 4 results today and it says undetectable, also my ALT is down to 14.

Very happy for you Tatty. Can’t wait to be able to post mine.

Genotype 1A
ALT 473
AST 226
Virus Load 3,119,030
Results as of May-2016
5 week viral load/undetected as of 12/02/2016
Liver Biopsy Results from Feb 2013
Portal/Periportal chronic inflammation and mild interface hepatitis (Grade 2)
Focal Lobular chronic inflammation (Grade 1)
Portal/Periportal fibrosis (stage 1-2 trichrome and reticulin stains utilized)
Negative Iron stains.
15 November 2016 at 7:41 am #24296
fitz
- Topics: 9
- Replies: 490
- Total: 499
- Guardian Angel
@fitz
Wonderful news, Tatty. Welcome!
15 November 2016 at 4:06 pm #24301
coral
- Topics: 8
- Replies: 598
- Total: 606
- Guardian Angel
@coral
That was quick Great result Tatty.
15 November 2016 at 5:54 pm #24302
Donna
- Topics: 1
- Replies: 70
- Total: 71
- Recovery Champion
@donna
Wonderful news Tatty
X
15 November 2016 at 7:00 pm #24303
mgalbrai
- Topics: 28
- Replies: 1,298
- Total: 1,326
- Guardian Angel
@mgalbrai
Very happy for you Tatty!
m

Curehcvnow@gmail.com
http://forums.delphiforums.com/generichcvtx

G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
15 November 2016 at 8:12 pm #24304
countless
- Topics: 6
- Replies: 39
- Total: 45
- Recovery Champion
@countless
Good news

Diagnosed September 2016.
1b
ALAT in 40s.
VL 460 000
Fibroscan 12.5
Start of treatment 18/10/16
Wk 2 VL 145
Wk 4 VL detected unquantifiable
Wk 8 VL detected unquantifiable
Wk 12 undetected
week 30 after eot – undetected
16 November 2016 at 4:34 am #24314
CJ
- Topics: 10
- Replies: 362
- Total: 372
- Guardian Angel
@cj
It must be such a relief for you.
Such good news!!

Cindi x

J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results….pending….
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!
31 March 2017 at 7:01 pm #25720
Tatty
- Topics: 2
- Replies: 11
- Total: 13
- Acolyte
@tatty
I have just had my SVR 12 undetectable confirmed.

Thank you to everyone here and thank you to Dr Freeman and all at fixhepC, Monkmed and Dr Debasis.

GT3a diagnosed Sept 15 believe contacted 25+ yrs ago
VL 1.6mil ALT. 41
Started Sof/Dac Redemption Trial 7/10/16g
Wk 4. Undetectable. ALT. 14
Wk 8 Undetectable
Wk 12. Undetectable End of treatment.

SVR 12. Undetectable
31 March 2017 at 10:50 pm #25723
Hazel
- Topics: 45
- Replies: 369
- Total: 414
- Guardian Angel
@hazel
Congratulations Tatty, great news.

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
1 April 2017 at 7:17 am #25744
coral
- Topics: 8
- Replies: 598
- Total: 606
- Guardian Angel
@coral
Now that’s the sort of news we like to hear. Congratulations Tatty.
6 April 2017 at 4:55 am #25775
Matt-Kenney-google
- Topics: 1
- Replies: 423
- Total: 424
- Guardian Angel
@matt-kenney-google
Yer off n’ flyin’ now Tatty illy:' /> seeya at svr-24

GT1a; Got it some time in the 70’s; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA NOT DETECTED”
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