Home › Forums › Main Forum › Patient Stories › Wair – 4 weeks into the treatment
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2 November 2016 at 9:47 pm #24138
Hi guys,
greetings from Estonia.
I have been a silent reader since … a while.
Genotype 3a, diagnosed 2012. Viral load pre tx 7.5 mil, ALT 144 AST 91.
Liver biopsy made in 2013, F1 and fatty liver disease.Only treatment available in 2013 in Estonia the traditional interferon/riba treatment. For many reasons (including a breastfed child) I did not start the treatment then and I must say that for couple of years I decided to hide my head in the sand and do nothing. Saddest part was that already in 2013 there were treatments coming that were modern, but again Estonia being an eastern European country – no hope to get those funded here.
But now in 2016 I somehow thought that OK, lets face my demons and I was in a way ready in my head to take on the 6m of interferon/riba. Thought that I have not really anything to loose and was prepped to stay at home not to mess with my work life. And then I googled. I landed here and also on Greg Jefferys’ blog. Read a lot and then even more. I took the courage to see my doctor to probe what she thinks of new treatments >> there was not much to think, our state still funds the old treatment and she did not want me to think about spending hundreds of thousands on new treatments. I did not do any mention of generics at that point just in case.So – booked an appointment with dr Freeman. Got suggested 3months of Sof/Dac and if needed then another 3m on top of this. Organised the meds to Estonia with Greg Jefferys. I think I have never been so excited to get couple of bottles of meds into my hands .
My own doctor had postponed my next visit and I also had a longer work trip planned, so started the meds without informing my doctor. The first thing I did after the work trip (2.5 weeks into treatment) – made a quick bloodtest to see the liver functions. And yeiiiii – all down (not in the limit, but still a looooot down). Next day I visited my doctor and then I just said that I did not want to wait and I have at least some proof that I did not make a wrong decision. She seems to be really excited ab this as well.So today – 4w into the treatment. Mental state – amazing. I am just happy all the time. Stress relief? – maybe. But I do have the energy levels up again. I did start exercising again after 2 years – 10 walks and runs.
Feeling slightly insomniac. I do wake up at weird times, but again – I am a mother of 2 small girls, I wake up even on slightest noise from their beds. But I still feel a lot better than some months ago.Also had full bloodwork done today.
AST 46
ALT 57
Viral load – results not in yet, hopefully by friday.
All other stuff (Hgb etc etc) – all in normal ranges as also was in September.OK AST and ALT are not yet in range, but the difference with original is huge. So I dont worry yet too much. I have mentally prepared myself that I need the treatment for 6m anyway, so there is time .
I think the hardest part now is trying to keep my excitement to myself. For many reasons there are very very few people who know about my disease at all, so therefore the treatment has to be similar secret, at least for now.
So thank you to all the people in this forum – even if you are not aware, then there are those silent “lurkers” here who take courage when reading about your paths!
Without you I would not be where I am now .2 November 2016 at 10:21 pm #24139Hi Wair,
firstly, welcome to the forum .
And congratulations for having taken the very good decision to get treated.
As you already experienced, the side effects are minimal, so do not worry about the slight insomnia. (if allowed a small joke: you have more time to read a good book, see a nice movie )
You will see that 12 weeks will pass very fast (and if it will be the case for another 12, it will pass also fast).wair wrote:Hi guys,
greetings from Estonia.
…..
I think the hardest part now is trying to keep my excitement to myself. For many reasons there are very very few people who know about my disease at all, so therefore the treatment has to be similar secret, at least for now.So thank you to all the people in this forum – even if you are not aware, then there are those silent “lurkers” here who take courage when reading about your paths!
Without you I would not be where I am now .Here you will find the proper place to share as much happiness you wish
Have a nice journey till the finish line (SVR12) !
Cheers,
RHF
In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don’t become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved3 November 2016 at 2:32 am #24141Dear Wair,
You have made a very good decision and so lovely to read about you feeling better both mentally and physically
You had a large VL to kill and when inflammation is reduced we realise what we have been living with for such a long time ! Delighted for you.
Be sure to test at around 8 weeks, just in case you need to extend a little (I did and am now clear of the virus, SVR 12), you may not need to, but it’s always good to have plan A, B and C, which is the great thing about this ‘alternative’ route, which in my opinion is superior.
I wish you the best of luck and good health from UK.
LG
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 HepC3 November 2016 at 3:37 am #24144Welcome Wair,
Congratulations on making the decision to treat and I’m glad that you’ve found that like many of us your side effects are minimal.
Your LFTs look good and they will improve further as your treatment progresses. I’m sure Dr Freeman will have discussed the indicators for extending treatment with you, including that once your viral load becomes undetected there is little value in continuing to test that during treatment. It is good to hear that you now appear to have the support of your own doctor should you need more testing.
Please feel free to share your excitement here like many of us do and best wishes for successful SVR.
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
3 November 2016 at 4:33 pm #24151Hello Wair in Estonia (what an international community we are).
I also kept my head in the sand for quite some time but I’m so grateful that we decided to poke our heads up and have a look around.
My treatment also started with an appointment with Dr Freeman and yes I do understand the excitement of getting those little bottles of tablets.It is such a personal thing in terms of who we tell and if we tell about our Hep C. I think we should continue to control that in the same way that we’ve taken control of our treatment.
So great to hear that your energy has returned – you need it with two young girls. Whether it takes 12 weeks or a little longer you have a HepC free life to look forward to. Be good to yourself.
Coral
4 November 2016 at 5:45 pm #24162Hey lurker
Thank you for posting and adding to information and positivity
Well done in becoming proactive
Happy for you feeling good
From a fellow eastern european
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 – undetected7 November 2016 at 6:35 pm #24212Negative!!!!!! My viral load is negative for the 4 weeks testing results
Jumping up and down (my colleagues think I won lottery, but this is even better than lottery)8 November 2016 at 12:28 am #24219Fantastic news Wair
Looking really good for you
LG
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 HepC8 November 2016 at 12:36 am #24221Very happy for you. Always great hearing everybodys results.
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.8 November 2016 at 2:07 am #24224Great news Wair.
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
2 October 2017 at 8:26 pm #26887So I have now the final results – 6+ months after the end of treatment – I am officially clear!
Viral load UND and all liver enzymes in perfect order!
Thank to dr James and Greg, I have put it all behind me!Good luck to all others as well!
2 October 2017 at 8:56 pm #26888Awesome. God bless you.
Genotype 3
VL 4,100,000
ALT 101 AST 71
Treatment Naive
Started Sof/Dac Jan 12, 2016
VL= <15 4 weeks in. AST/ALT normal.
VL=UNDETECTED 8 weeks in.
SVR4= Virus back. 3,300,000Started generic Epclusa Sep. 23, 2017
4 weeks in <15 *Detected.
12 weeks in <15 *Not Detected.
16 weeks in <15 *Not Detected.
Finished 24 weeks treatment 3-17-18
SVR5 <15 Not Detected.
SVR 20 <15 Not Detected.
SVR 44 <15 Not Detected.Thank you Jesus.
Thank you Dr. James3 October 2017 at 7:34 am #26889 -
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