Dan's Twinvir story

This topic has 360 replies, 38 voices, and was last updated 7 years, 7 months ago by LondonGirl.

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13 January 2016 at 2:14 am #8845
Dan
- Topics: 6
- Replies: 197
- Total: 203
- Guardian Angel
@dan
LG.
I’m glad that you finally started treatment. Is your NHS consultant supports you?

My BP could go slightly up or down, which could be Sofosbuvir’ s side effect. Sometimes on tx BP could be slightly raised or low, especially if you had the problem before that.

The hart rate increases as well for some people and to be on the safe side, you can ask for ECG. I didn’t ask my GP at 4 weeks, but might ask him next week.

Gen 1b, F1-F2. Naive.
Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
Starting VL 400000, Alt 49/AST 44
1 week VL 29, ALT 44/AST 30.
4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
7 weeks VL Detected, ALT 28, all other normal
8 weeks UND, 12 week UND, 24 week SVR UND
13 January 2016 at 2:41 am #8850
LondonGirl
- Topics: 16
- Replies: 1,348
- Total: 1,364
- Guardian Angel
@londongirl
Dan, I asked, because I have an online friend working HepC / HIV unit, ( he has humour but gives real advise) – He Said “If you fall over, your BP is low” – Thinking of your dizziness. Do You have your own machine? I’m not convinced they are totally trustworthy. Even tbe do it yourself one at the GPs always gives me a high reading, but when nurse does it, it’s fine. I think Jolie discussed size of cuffs etc and one size doesn’t suit all (My recent mantra!)

No my old NHS Dr doesn’t support me ha ha Awful man.(not the Proff, he was awesome but retired, a newly allocated one) i have re referred now. I cannot share as yet, but it’s worth looking around, email a few or find ones who have an online presence? I will let you know if this changes. Your bloods are ok, so maybe you do need a neuro Doc? But in the meantime, every time you visit nurse or GP, ask them to take BP, the more obs they do, the better really. Think you need to do a few in a row, to get a general picture as you say, BP does go up and down.

Have you updated the MMed Drs then? I know Tim has been v busy.

GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 ‘In the slow lane’
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
13 January 2016 at 2:50 am #8851
LondonGirl
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- Guardian Angel
@londongirl
If your consultant doesn’t support you, he is not giving ‘duty of care” – Change. I know it’s a hassle, but you can maybe ask to see another Dr in the same hospital? Ask HepC Trust too, they have advise on this. (PALS)

Sorry so slow to respond, Am on small handheld device – Hard work!

GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 ‘In the slow lane’
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
18 January 2016 at 7:48 pm #9690
Enkel
- Topics: 16
- Replies: 293
- Total: 309
- Guardian Angel
@enkel
Hi Dan,

Any new viral load test?

Male, Fibro F1. Geno 1b. ALT 67 before treatment Viral load 5 million. My huge viral load replicates in my nervous system as I suffer anxiety.
Started Twinvir 12/12/15.
Two weeks
ALT 17 at 2 weeks
Viral Load UND at 2 weeks
ALT 13.5 at 7 weeks EOT
ALT 10.5 at 15 weeks EOT
ALT 13 at 27 weeks EOT, VL UND, Cured
19 January 2016 at 12:16 am #9699
Dan
- Topics: 6
- Replies: 197
- Total: 203
- Guardian Angel
@dan
Hi.
Day 47.
I had my GP appointment today and got blood test requests printed out. Im going tomorrow morning, should get the results next week.

I asked for VL, FBC, Liver function, Kidney function, Vit B, D and E.

Is it necessary to do Full blood count, Liver and Kidney tests every 4 weeks?

I’m still on and off with sx. The main are light headedness and eczema. Was on antibiotics for a week, as it flared up badly.

Gen 1b, F1-F2. Naive.
Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
Starting VL 400000, Alt 49/AST 44
1 week VL 29, ALT 44/AST 30.
4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
7 weeks VL Detected, ALT 28, all other normal
8 weeks UND, 12 week UND, 24 week SVR UND
22 January 2016 at 12:43 am #10021
Dan
- Topics: 6
- Replies: 197
- Total: 203
- Guardian Angel
@dan
Day 50 of 84
Had my blood test on Tuesday, some results came back already.
FBT is normal
Platelets was 145 at 4 weeks, now back to normal range 166
Alt is 28. Unfortunately they don’t do Ast at GP practice.
Crp is <1 mg/l
Allergens still high due to eczema eosinophil 1.67 10*9/l
Vit b 398

Still awaiting Vit D and VL results. Hopefully tomorrow afternoon or Monday.

Still fill light headed, eczema quite bad, constantly cold feet and hands.

Apart from that, very positive.

Gen 1b, F1-F2. Naive.
Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
Starting VL 400000, Alt 49/AST 44
1 week VL 29, ALT 44/AST 30.
4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
7 weeks VL Detected, ALT 28, all other normal
8 weeks UND, 12 week UND, 24 week SVR UND
26 January 2016 at 5:55 pm #10457
Dan
- Topics: 6
- Replies: 197
- Total: 203
- Guardian Angel
@dan
Just got the bad news.7 weeks on and still detected. I guess GP didn’t order the actual VL count, as the test only shows Detected.

Feel really bad/shaky now and not sure what to do now.

Not sure if it is due to the bad eczema and re-infection due to scratching???

All other results are normal and the main sx is lightheadedness

Gen 1b, F1-F2. Naive.
Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
Starting VL 400000, Alt 49/AST 44
1 week VL 29, ALT 44/AST 30.
4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
7 weeks VL Detected, ALT 28, all other normal
8 weeks UND, 12 week UND, 24 week SVR UND
26 January 2016 at 6:18 pm #10458
Enkel
- Topics: 16
- Replies: 293
- Total: 309
- Guardian Angel
@enkel
According to condition < LLOQ you are still in normal range. But usually at this time people are UND. Moreover, I am concern with the quality or crystalline form of ledipasvir of Twinvir which cant kill the few left viruses. isaing4 is 83 at 4 weeks too. Lets see psavic. Dan cant you do one in private?

Male, Fibro F1. Geno 1b. ALT 67 before treatment Viral load 5 million. My huge viral load replicates in my nervous system as I suffer anxiety.
Started Twinvir 12/12/15.
Two weeks
ALT 17 at 2 weeks
Viral Load UND at 2 weeks
ALT 13.5 at 7 weeks EOT
ALT 10.5 at 15 weeks EOT
ALT 13 at 27 weeks EOT, VL UND, Cured
26 January 2016 at 8:21 pm #10462
Dan
- Topics: 6
- Replies: 197
- Total: 203
- Guardian Angel
@dan
I have an appointment for bloods in the different hospital tomorrow, if still detected I need to get Indian generic quickly.

Feel a lot dizzier in the last couple of days.

Gen 1b, F1-F2. Naive.
Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
Starting VL 400000, Alt 49/AST 44
1 week VL 29, ALT 44/AST 30.
4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
7 weeks VL Detected, ALT 28, all other normal
8 weeks UND, 12 week UND, 24 week SVR UND
26 January 2016 at 9:16 pm #10464
isaing4
- Topics: 2
- Replies: 237
- Total: 239
- Guardian Angel
@isaing4
Hi Dan,
I know, you are sad, because you don’t have the desired results that others have.
I was also sad after 4 weeks my VL came with 83.
But Dr. James wrote this on my thread, a patient with viral load tested during tx:

”To reassure you here are some real results from a patient of mine…
Week 0 7.8 million
Week 4 76
Week 5.5 < 15 Week 8 0 Week 12 0 SVR 4 0 SVR 12 0'' I am not a doctor, but I think this is maybe also your case. Maybe your week 8 viral load will be....UND. Wish you all the best!

HCV since I don’t know. Diagnosed in 2010.
GT1b, F0/F1, VL 9M, ALT 44, AST 42, Tx naive,
started 12 wks Twinvir on 06.12.2015. Feeling great and grateful 🙂
virus not detected 06.02.2016 & SVR24
isaing4@gmail.com
26 January 2016 at 9:19 pm #10465
isaing4
- Topics: 2
- Replies: 237
- Total: 239
- Guardian Angel
@isaing4
Dan wrote:

I have an appointment for bloods in the different hospital tomorrow, if still detected I need to get Indian generic quickly.

Feel a lot dizzier in the last couple of days.

Good decision, bloods in a different hospital!

Good luck!

HCV since I don’t know. Diagnosed in 2010.
GT1b, F0/F1, VL 9M, ALT 44, AST 42, Tx naive,
started 12 wks Twinvir on 06.12.2015. Feeling great and grateful 🙂
virus not detected 06.02.2016 & SVR24
isaing4@gmail.com
26 January 2016 at 9:56 pm #10466
Enkel
- Topics: 16
- Replies: 293
- Total: 309
- Guardian Angel
@enkel
Yes, thats What I suggest, a viral load in a different clinic.

greedfighter, psavic are also in twinvir we will see their results too at 4 weeks.

Male, Fibro F1. Geno 1b. ALT 67 before treatment Viral load 5 million. My huge viral load replicates in my nervous system as I suffer anxiety.
Started Twinvir 12/12/15.
Two weeks
ALT 17 at 2 weeks
Viral Load UND at 2 weeks
ALT 13.5 at 7 weeks EOT
ALT 10.5 at 15 weeks EOT
ALT 13 at 27 weeks EOT, VL UND, Cured
26 January 2016 at 9:59 pm #10468
Dan
- Topics: 6
- Replies: 197
- Total: 203
- Guardian Angel
@dan
Thank you for encouragement. I hope so as well

The other issue is lack of improvements. The symptoms increased during txt and in the last couple of days it is very difficult.

Every morning I feel better, but as the day goes on, it becomes difficult.

Gen 1b, F1-F2. Naive.
Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
Starting VL 400000, Alt 49/AST 44
1 week VL 29, ALT 44/AST 30.
4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
7 weeks VL Detected, ALT 28, all other normal
8 weeks UND, 12 week UND, 24 week SVR UND
26 January 2016 at 10:04 pm #10469
Enkel
- Topics: 16
- Replies: 293
- Total: 309
- Guardian Angel
@enkel
Hi Dan, I see ALT is improving as weeks passes. I strongly suggest a VL at a different clinic, private. I do them only in private in my country. We dont trust the apparatus of public.

Male, Fibro F1. Geno 1b. ALT 67 before treatment Viral load 5 million. My huge viral load replicates in my nervous system as I suffer anxiety.
Started Twinvir 12/12/15.
Two weeks
ALT 17 at 2 weeks
Viral Load UND at 2 weeks
ALT 13.5 at 7 weeks EOT
ALT 10.5 at 15 weeks EOT
ALT 13 at 27 weeks EOT, VL UND, Cured
26 January 2016 at 10:11 pm #10470
Jolie
- Topics: 5
- Replies: 126
- Total: 131
- Guardian Angel
@jolie
Hi Dan,
Just to say, don’t despair .
There have been a few people I remember here who did not clear until week 8-9, I think Em was one of them.
The same goes for “feeling better”, I remember a few expressed that after the initial “high” things become more levelled & some felt tired as the tx progressed but still had UND at the end of tx.
If you LF & other bloods are improving then this is a positive outcome, it’s much too early to panic at this point, just my opinion.

Jolie

Geno 3, Fibro 8.7 pKA, tx experinced in 2005 – Peg/Riba, relapsed.
Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
5 weeks result all normal, ALT 18 – down from ALT 73 at the start of tx.
5 weeks HCV PCR RNA – UND. – down from 2 ML
9 weeks HCV PCR RNA – UND.
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