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TOPIC: Treatment after relapse

Treatment after relapse 3 years 2 months ago #21045

  • coral
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Following my appointment with Dr Freeman through GP2U I'm now waiting for the scripts for my next phase of treatment. As the highly credible and usually successful Sof/Led and Sof/Dac couldn't quite get the job done for me a couple of bigger guns are being deployed. I'll be on the Viekira Pak with Ribavirin and Sofosbuvir. So a bit of a stronger cocktail.

To anyone reading this wondering whether to start the treatment, the generics work for most people and the statistics (and this site) are testament to that. I had a taste of what it feels like to be HepC free during my undetected period and I can highly recommend it! Don’t hesitate. If you are not sure where to start make an appointment with Dr Freeman or one of the other good doctors at GP2U. It will be life changing.

If you are one of the small group of relapsers like me there are great options now and in the pipeline There are people on this site who went through the hell that is interferon only to relapse and they have now successfully retreated with the generic medications.

To my fellow relapsers - I'm looking forward to the time when we have all started retreatment and are on our way again to a cure.

Thanks Dr Freeman and Fix HepC. There are no kinder or safer hands than these.
G1a probably early 1980's, Biopsy F1(2010), F2-F3(2015). VL 5+mill; 2+mill (2014) Tx naive. Accessed Sof/Led through Dr Freeman at GP2U and Buyers Club (lifesavers!!!)
Commenced tx 12/11/15. 9 wk: VL <15 Detected but LFT = Normal 12 week results: UND (Yay!) Due to slow response commenced Sof/Dac 4 Feb for 12 weeks. EOT @ 24 weeks 27 April 2016. (With thanks to Dr Freeman et al). SVR11 result: VL 1,950,000. It's back!
New tx 030916 (Viekira Pak, Solvadi, Ribavirin UND @ 111116. EOT 170217.
SVR12 and SVR 24...
Last Edit: 3 years 1 month ago by fixhepc.
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Treatment after relapse 3 years 1 month ago #21657

  • LondonGirl
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Dear Coral #flower

You know I'm with you in spirit. So pleased you're now on a new treatment and hope the sx aren't too heavy going.

Sending BIG #love from afar.

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 HepC
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Treatment after relapse 2 years 2 weeks ago #25391

  • Top14u
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Hi Coral

I hope your treatment with the new scripts is going well & that your well on the way to being clear.

I am glad to have found this site & hoping that it\you can give me a few pointers in my search to be clear.

I am a 55 year old male, I think I picked up the HepC from tattoos when I was 18 or 19, it went undetected until I was 52, although I had been going to my doctors on & off for 20 year complaining of massive bouts of fatigue\brain fog and lethargy but they never found it, it was only by chance after changing doctors 3 years ago that I was diagnosed, Ive got to say strangely it was a great relief being diagnosed as I thought I was going mad for the past 20 years of going to the doc's to be told we cant find anything wrong with you.

I was treated in the UK in the summer of 2016 with Harvoni, however I was only given an 8 week course, I suspect this was due to cost savings meaning they could treat 3 people for the price of 2, which is great when everyone treated is passed as clear. I was showing as clear after the 8 weeks of treatment but at 12 weeks the virus had returned & I am now left wondering if that extra 4 weeks would have resulted in me being fully cleared when I mention this in the hospital they seem to agree but wont come out & say it.

I went back to the hospital yesterday 1/11/2017 for a follow up appointment & they told me they are no longer going to treat relapses, again I would imagine this is due to cost although no one is prepared to admit to this as yet.

I am now not sure what to do or where to go with this, I've told them I am prepared to go to India to get medication but will need their backing I assume.

Another problem I have is that I appear to be too healthy, my fibro scan score's are within the normal range so they are viewing me as being health & so they are unwilling to treat me.
I am not prepared to just sit back & let this condition slowly destroy me in the final years of my life, I have kids & grandkids on the way that I want to have a full & healthy life with them, I will not sit here & wait for the HepC to give me liver cancer or complications, I just need to get the right information & form a plan of action.

Thanks for listening & any help or advice will be gratefully received.

Top
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Treatment after relapse 2 years 2 weeks ago #25392

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Welcome and hello Top14u,
Many people come to this site after treatment failure, so this is a good place for you to be right now..

You'll need to know what type of HVC you have in order to get the right prescription to get rid of it once and for all. No need for trips to India for most of us on this site. I got my treatment from the FixHepC redemption trials. But there are other ways too. The thing I liked about FixHepC was the money-back guarantee #duck #duck #duck of delivery.


Mnem *(*
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!
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Treatment after relapse 2 years 2 weeks ago #25394

  • coral
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Hi Top14u,

I'm really glad that you found this site. You are in the right place to find the best option for you.

Thanks for asking - I have now been officially cured (confirmed by a blood test 24 weeks after the end of my treatment) and it continues to be a wonderful thing!

I know how devastating relapse can be but your attitude is exactly like mine was - that's happened, it's crappy but tell me what I can do next.

There are so many variables in our own special HepCness that while 8 weeks of treatment with certain medication will work for some but it won't be enough for others. My own brand needed a stronger and longer treatment but I got there in the end. As someone who has relapsed it's important that you get the right treatment regime.

I'm really sorry to hear about the attitude of your hospital in not treating relapsers. I find it hard to get my head around this when the end goal needs to be to eradicate HepC from everyone and one size doesn't fit all.

There is a lot of information on this site and if you contact This email address is being protected from spambots. You need JavaScript enabled to view it. they will be able to provide you with further advice. My doctor throughout my treatment was Dr James Freeman, world expert in HepC, founder of this site and all round decent human being. He and other expert doctors can be contacted through gp2u.com.au/about_us.html which is an online medical service so it doesn't matter where in the world you are. I had my appointments via skype. Based on your test results they are able to prescribe the correct medication and FixHepC can arrange for it to be legally delivered to you. There is a cost but it is very small compared to the prices charged by the pharmaceutical companies and I think I can confidently say that for all it has been money well spent.

There is absolutely no need for you to continue with HepC and the debilitating side effects. I'm so pleased that you contacted us. Please ask any questions. There are a lot of knowledgeable people on this site who know exactly how you are feeling. Looking forward to your updates.

Coral
G1a probably early 1980's, Biopsy F1(2010), F2-F3(2015). VL 5+mill; 2+mill (2014) Tx naive. Accessed Sof/Led through Dr Freeman at GP2U and Buyers Club (lifesavers!!!)
Commenced tx 12/11/15. 9 wk: VL <15 Detected but LFT = Normal 12 week results: UND (Yay!) Due to slow response commenced Sof/Dac 4 Feb for 12 weeks. EOT @ 24 weeks 27 April 2016. (With thanks to Dr Freeman et al). SVR11 result: VL 1,950,000. It's back!
New tx 030916 (Viekira Pak, Solvadi, Ribavirin UND @ 111116. EOT 170217.
SVR12 and SVR 24...
Last Edit: 2 years 2 weeks ago by Gaj. Reason: Added hyperlink
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Treatment after relapse 2 years 1 week ago #25397

  • keith
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Hi Top 14u and welcome
my story is pretty much the same as yours 8 weeks harvoni in 2016 and relapsed at end of treatment +4 weeks I think they shortchanged us there
I wasted a lot of time waiting for retreatment from the NHS but of course it didn't come
I started re treatment with generics via this site earlier in the year and I'm now 8 weeks post treatment . the blood test at 4 weeks post showed I was undetected I know 4 weeks doesn't mean much but it's further than I got last time
so these generics do work.
My hospital has been more than helpful in testing and monitoring once I got them onside and they carried out a test for RAVs before I started . Ask Dr James if this is necessary in your case, and you can speak to him on the phone if you can't do Skype
What genotype are you?
Feel free to send me a private message if you think I can help
I'm not an expert in anything but I can tell you how things worked for me

keith
age 72 location UK
14-2-2015 GT1a 6.8 kpa F1-F2 VL6.46
16-3-16 started 8wks Harvoin
2 wks VL unquantifiable
4 wks VL undetected
8 wks EOT Vl undetected
4 wks post. detected VL 4.07 relapsed
22-5-17 started re treatment via Redemption 2 ,meds via Monkmed 12 weeks Sof Dac+Rbv
Riba via NHS
Starting VL 4.25 log 6.63 ALT 88 Fibroscan F2- F3 8.9 kPa
2 wks VL 2.86
4 wks VL below detectable level
changed Tx to Viekira+Sof+Rbv
6 wks VL undetected
13-9-17 EOT , ALT32, AST28
SVR 4 +12
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Treatment after relapse 2 years 1 week ago #25398

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Hello Top14u,

Sadly the 8 week results are not as good as the 12 week results and we've seen a few people like you.

Retreatment is simple with a few different options, and getting the medication to the UK is also no problem.

Probably the best thing to do would be to register at gp2u.com.au/ and book an appointment with me. I have been away in Brazil for the last few days at the World Hepatitis Summit and won't be back on deck in Australia until Wednesday.
YMMV
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