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Dan's Twinvir story 8 years 5 months ago #5476

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Glad to hear its all going to plan!

Are you planning on telling them you're on treatment?
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.

Dan's Twinvir story 8 years 5 months ago #5477

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Yes, on my next appointment or through GP.

I will tell GP and he will definetly send the letter to the hospital.

Alsdad had similar experience and his GP let the hospital know.
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

Dan's Twinvir story 8 years 5 months ago #5482

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Wonderful news Dan!
You have a small start VL therefore NOT DETECTED in week 2!
No side effects apparently is not possible. But you forget all when you get rid of the virus!
Good luck with your doctor! :lol:
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
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Dan's Twinvir story 8 years 5 months ago #5530

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Dan wrote: The new sx for the past 2 days is numbness in the evening and the muscles in hand up to the elbows and legs up to knees feel so tight

Could it be due to poor blood circulation? Or autoimmune response? I would check it with doctors, Dan
Virus not detected from 14.10.2015

Dan's Twinvir story 8 years 5 months ago #5535

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I just remembered, reading this (seems like such a distant memory now). For several months pre-treatment, I was waking several times in the night with total nunbness in my hands. I did some research at the time, and, if I remember correctly, found that it was related to the effect of the virus on the nervous system. I'm pretty sure the Indian research document that was re-posted recently on here went into some detail on it, but I'd have to check. Anyway, the good news: The numbness cleared up on treatment, and there's been no recurrence post-treatment.

Dan's Twinvir story 8 years 5 months ago #5538

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In Dan's situation there's no virus left but the numbness is a new thing. That 's why I suggested that it could be an autoimmune problem.
I wonder if his GP could check his autoimmune blood markers?
Virus not detected from 14.10.2015

Dan's Twinvir story 8 years 5 months ago #5547

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isaing4 wrote: Wonderful news Dan!
You have a small start VL therefore NOT DETECTED in week 2!
No side effects apparently is not possible. But you forget all when you get rid of the virus!
Good luck with your doctor! :lol:


I think its the opposite,the majority of us have no side effects what so ever.
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.
The following user(s) said Thank You: Gaj, zhuk, isaing4

Dan's Twinvir story 8 years 5 months ago #5548

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Hi Sirchinenge,
Good to know! Apparently not so lucky as I thought. Because I don't have side effects! :)
I hope that the treatment is effective to get rid of the virus. Monday I will find out, 2 weeks blood tests. :woohoo:
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
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Dan's Twinvir story 8 years 5 months ago #5549

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Be interesting to see if you can ascertain whether treatment sx correlate to other conditions someone has, or if its just a random occurance. I've got a shedload to choose from, which could be hep-related, or not...time will (hopefully) tell.
GT1a since 1988, diagnosed 1990
F0, tx naive
VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 - 2.9
Started Mesochem sof/dac 12 weeks 01/01/2016
11/02/2016 - 6 weeks UNDETECTED
AST 26
ALT 26

Dan's Twinvir story 8 years 5 months ago #5551

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I will check with the doctor, if he can test autoimmune/autoantibody on Monday and ask for a scan to check the blood circulation.
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

Dan's Twinvir story 8 years 5 months ago #5552

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On a personal level I can of course empathize with anyone thinking they may have side
effects the evidence thus far including myself is most of us have none.

Of course, there are some less fortunate that do in have sides,Dan being one of them.

I don't think its helpful to anyone thinking about treatment too start worrying about events that as yet
have not occurred. Id be mindful of the fact its fairly painless!
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.
The following user(s) said Thank You: Joy, isaing4

Dan's Twinvir story 8 years 5 months ago #5564

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Thanks Sirchinenge, I agree with everything you say there.

So for newcomers especially, or others just starting out:

What most of us should keep in mind is that all the trials with Sof plus Led or Dac have shown that the great majority of people experience very few sides and mostly they are minor. And even at FixHepC, of the hundreds (thousands?) of people who have commenced treatment, only a few are posting of feeling and suffering from more than minor sides that are sometimes hard to distinguish from the virus itself, other health problems they have or maybe they could have caught a bug that was going around? Speaking of which, cold & flu tablets have sides too but most find the relief they bring is greater than the disease itself.
I suspect that a lot of this is because we are part of a great new social experiment of treating ourselves and the emotional roller coaster for a lot of us of finally getting a successful treatment where we previously thought there was none, or it was unaffordable. And certainly, they are nothing like Peg/riba.

Perhaps if we were at the stage where we went to the doctor and he said in a bored tone "oh yes, your tests show you have Hep C, take one of these each morning and come back in twelve weeks so we can check that it has gone, you may feel a bit fluey and off colour but it's nothing to worry about." it would be different but we aren't quite there yet. And people tend to worry about anything that is new.

As Sirchinenge says, that is not to take away from the minority like Dan who unfortunately do have bad sides or interactions with other health issues, some of which may of course be hep related.

G
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
:cheer: :cheer: :cheer:
The following user(s) said Thank You: Joy, LondonGirl, Chejai, zhuk

Dan's Twinvir story 8 years 5 months ago #5577

Whereas I agree, some side effect reporting may make some patients a little nervous even if they are nothing like the old meds sides, I also think it is good to share how people are feeling on tx, so others can be prepared. I mean, if no-one ever had any side effects at all because they didn't want to mention them and then a person new to treatment got some, they may be really scared because they think they are the only one to get some, does this make sense? When people just tell me 'oh it's just like a mild flu for a bit' I have to say, I do wonder what a 'mild' flu is like, you know? ;) Having said that, I haven't had flu for so long, I can't remember what it's like! but I have definitely had other very horrible symptoms since I've had this virus. Joint pain so bad I couldn't walk for example. Really don't want those to get worse.
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

Dan's Twinvir story 8 years 5 months ago #5604

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Ah, good points there LondonGirl! My excuse is that I wrote it at 4:30am because of insomnia from these damn drugs!* :lol:

On a more serious note I do agree that we should be sharing how we feel on medication but both the sides (of which there are indeed some but, for most of us I suspect, they are livable) but also the improvements of which at least in my case there are many! What I am trying to say is that people shouldn't stress out about this before treatment because I suspect in most cases they will find that it isn't a big issue. It's the far more reasonable hour of 6:00pm now and I have edited my post above a bit to try and reflect these thoughts.

And speaking of the improvements, in another thread recently someone mentioned that some of their joint pain had resolved with medication at which point I suddenly realised I hadn't felt my usual hip/lower pain for......errr.....don't know but it has gone!
Hopefully you will find the same. :)

G


*
the Ribavirin dammit.
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
:cheer: :cheer: :cheer:
The following user(s) said Thank You: LondonGirl

Dan's Twinvir story 8 years 5 months ago #5824

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Hi,

I'm looking for a link on Twinvir testing, which I can take to my GP, but can't find it.

Can someone point me into the right direction?

Thanks
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
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