Hep C Discussion Forum

wmlj1960 · Moderator

RE: Are foreigners welcome here?

Canuck · Guru

Very happy for you Lucas, on your 4 week post-treatment results. Very excellent indeed!

I especially like to see that nice extra-big smile you are sporting in that pic.

Really nice for you, after that long haul. smile C.

Linuxter · Guru

Hi Lucas,

Congrats on the EOT+4!

Great Job ... I'm right behind ya ... my EOT was Apr 12 (I won't know more until EOT+12 in July)

SVR sure has a nice ring to it ... I would imagine achieving it in Bali ... not much could be better smile

Big Congrats (Happy for ya!),

Dave

Cinnamon Girl · Guru

Great to hear, this is excellent news, Lucas!! You`re well on track for SVR12 at this point!

Thanks for bringing those lovely photos back with you, I`m getting the feeling you had a good time out there! biggrin

We`ll be looking forward to more good news when you get your next results!

Tig · Admin

Congrats Lucas! SVR 4 is highly indicative of SVR 12/24. I would be very confident that you're done dancing with your Dragon. Go ahead and kick it to the curb!

I love the pictures of Bali. You look like you're enjoying yourself too. That's quite a smile you're wearing! Enjoy your successful end of treatment and be sure you keep in touch when you're not surfing and enjoying that new Hep free life!!! smile

Lucas · Member

Hi all!

I'm back with good news - I've got SVR4 with LLOQ 10ME! I will post my victory dance after SVR24.

Bali is great! A couple of pics as promised :)

Thank you all for support and advise. I decided to add PEG because of F3 - there was no margin left for retreatment.

Best,

Lucas

Mike · Veteran Member

Wow, what an amazing story Lucas.Â And congratulations on being undetected at EOT. We are all with you. And you are one of our brothers for sure. Please keep in touch with the forum, we are all family here:)

Â

wendyo · Guru

Awesome news!

Linuxter · Guru

Congrats Lucas!

Very good news to hear ... so many recent success stories is music to the ears.

Very happy for you ... onward to SVR12 ... not far away.

Â

Dave

wmlj1960 · Moderator

Good job sticking with it Lucas! It sure paid off @ EOT. Keep us posted on the EOT+4 results. You'll be dancing the SVR dance soon!

Zlikster · Guru

Interesting case Lucas. Why didn't you opted for 24w of Sofosbuvir+Daclatasvir+Ribavirin instead adding Peg? Congrats on EOT UND :)

Cinnamon Girl · Guru

Hi again Lucas, congrats on your undetected result, that`s great news!

Your treatment has certainly been unusual but the main thing is that it has worked out well for you, and we`ll be looking forward to hearing about your SVR4.. and hopefully seeing a photo or 2 from Bali!!

robertsamx · Guru

There are so many people going UND and staying that way . We are going to need a three ring binder soon to keep up with everyone clearing this virus. Congratulations ï¿½Lucas!! ï¿½onward to 24. ï¿½ ï¿½ ï¿½ ï¿½ ï¿½RC

JimmyK · Guru

We are all very happy for you Lucas!

Regards

JimmyK

Tig · Admin

Outstanding Lucas!! Congratulations on finishing and staying undetected. We'll be anxious to celebrate your EOT week +4 results. SVR4 would be a great indication of success. Bali will be a wonderful place to celebrate, send pictures! Good luck!

Lucas · Member

Thank you guys. EOT is negative (yet I took 60ME LLOQ test because of logistics issues).

Next post will be with SVR4, which I'm going to celebrate on Bali :)

Tig · Admin

Hey Lucas,

I'm glad that you finally received an undetected test result. Here in the USA, my doctor would've stopped treatment at week 12, back in the old Interferon days anyway. That was before the added DAA's you are taking, but you still took awhile to get there. That must've been tough on you mentally and am sorry you had to experience the doubt you must've had. The positive thing is, you did it! Congratulations!!

Best of luck on your EOT tests, we're all cheering and hoping for good news!

JimmyK · Guru

Best of luck on the results Lucas!

JimmyK

-- Edited by wmlj1960 on Friday 29th of April 2016 12:05:30 PM

Lucas · Member

Sorry for being silent, it's been pretty tough times ))

I was detected still at week 16, after 8 weeks of quad therapy. Week 17 no tests. Starting week 18 I became undetected with LLOQ 100.

Tomorrow I finish my 28 weeks marathon and for the first time I will make a sensitive test (LLOQ 15).

JimmyK · Guru

Greetings,

I do not get here enough I suppose.

I cannot answer many of the technical questions, and I leave that to the more experienced.

But I can answer the title.

There is no such thing as a foreigner here. It is an honor to have you.

Regards

JimmyK

Gracie · Guru

Lucas... There are people who take longer than 4 weeks to clear, it has no bearing on SVR. My hepologist says they are starting to recommend no VL tests until 12 weeks post as it's the only test that matters. Everybody clears at some point during treatment. If there is a relapse, it mostly happens in the first four weeks after your treatment ends. You've got this! Try not to worry too much. These drugs are pretty amazing!

Lucas · Member

Yesterday I have found this http://gut.bmj.com/content/64/11/1824.full.pdf

In the section named Management of DAA failure they say:

One of the emerging questions is the management of patients who have failed a DAA-based treatment. Currently, most of these patients have been treated because of severe underlying liver disease. Therefore, rescue antiviral therapy seems manda- tory in these patients, although the optimal antiviral regimen is not known.

If my case can be considered a failure yet, is of course questionable but considering the fact that >90% of the rest cases on our local forum using the same drugs and with similar conditions get undetected week 1-4, I believe it can.

Lucas · Member

Hi Mallani,

Sorry about photo format and no google translate. I hope at least it was fun to figure it out :)

And thank you for you feedback. What made me panic - all others on similar therapy (we communicate via a local forum and dozens of people run their therapy blogs) get undetected week 1-2, max 4. I happen to be the most stubborn exception.

Anyway thanks one more time and I keep going and will keep you updated.

Best of luck,

Lucas

mallani · Guru

Hi Lucas,

Posting your results in photo format made it difficult for google translate, but I eventually figured it out.

Your Lab has a Reference Range of 100-100M ME/ml. The LLOQ is 100.

Bearing this in mind, your had a starting VL of only 133,000 which is low. After 3 days, your VL had dropped to 580, which is a rapid response.

Your subsequent values are <100. Whether reported as Detected or not doesn't matter, with a test this crude.

I suspect you were Undetected all along, so didn't need the Peg or Riba. However, carry on and try to get a more sensitive VL done at 16 or 18 weeks.

Your generic Sofosbuvir and Daclatasvir obviously work, so whether you continue the Peg and Riba is up to you. Interesting stuff.

Lucas · Member

Hi Mallani,

Please find below VLs. We also have tests with LLOQ 10, these are called ultra sensitive and cost a lot. So since we pay for everything (doctor visits, tests, meds) ourselves, I decided that I do ultra only after three regular negatives in a row. And use saved funds for thai massage ;)

This is just before the therapy (day 0):

Lucas Day 0 resized.png

This is day 3:

Lucas Day 3 resized edit1.png

This is week 6:

Lucas Week 6 resized edit 2.png

Best,

Igor

-- Edited by Lucas on Friday 11th of December 2015 01:10:43 PM

Images edited per forum size restraints. Full size images can still be seen via attachments below. More information HERE.

-- Edited by wmlj1960 on Monday 28th of March 2016 07:54:18 PM

mallani · Guru

Hi Lucas,

Thanks for your detailed response.

Your Fibroscan result of 12.1 is equivalent to F3 on the Metavir score. You had 28 readings done and these have been averaged. It is quite normal to have some high readings and the high and low readings are usually discarded, depending on which program is used on the machine.

Is it possible to post a copy of your VL report? A LLOQ of 60 M.E./ml is a bit high these days. In Western countries, the LLOQ is now 10 , 12 or 15 for most Labs. If your Lab. is using an old VL test, fluctuations up to 100 M.E./ml may be 'normal'.

Abbreviations used on the Forum may be found using this link:

http://hepcfriends.activeboard.com/t54890923/forum-abbreviations/

I'm not sure about your Sofosbuvir. Some Indian Pharma. Companies (such as Cipla) are well regulated- others are not. All you can do is hope.

If I was you, I'd forget weekly labs, and wait until week 18. Best of luck. I suspect you've been Undetected all along, particularly with a normal ALT. Cheers.

Lucas · Member

Hi Mallami,

Thank you for joining my thread and good questions.

CBC - now I know what it is, and I do it weekly :) Confusion comes from language barrier - I work for an international company and my business English is more or less OK but I do miss some special terms.

Yes, I was infected at age 18 and I can even remember the exact moment and my feelings at that specific moment. Yes, it's unusual because mostly people have no idea where when and how they got infected. At least that's what they say ;)

I have been tracking my disease since 2006 and VL has always been around 10^5 and ALT AST 2x-3x sometimes 5x.

Fibroscan is a series of measurements and then an average is taken. I can post a scan of a couple of my recent results, maybe they do it differently in different countries, which I actually doubt because all these technologies come from EU and US. 2006 it was F0-1, 2010 it was F1, 2013 it was F2, 2015 it was F3 and I decided to start treatment immediately. So some measurements in the most recent test were F4 but average was F3.

DCV generic is made in China, SOF generics I use are made in Egypt and India. RBV and PEG are local originals.

I always use approved labs.

I was undetected at 4 weeks with a qualitative test with sensitivity 60 ME.

Then I became detected with qualitative test starting week 5.

I did quantity test at week 6 and the result was <100 (reference values - undetected, <100, and actual value if >100). Then I was quality detected weeks 7,8,9 and again quantity <100 week 10. Week 11 - quality undetected, week 12 - quality detected. ALT AST normal starting week 2.

I use 1200mg of RBV and 120mg of Algeron (local version of pegylated interferon) - both local official recognised manufacturers.

Latest thrombocytes are 132 (range 150-400) that is they are below range.

Yours are valid and very good questions, no reason to be sorry about them :)

Docs say that RNA<100 is not a relapse, it's just slow response.

For now I decided to check HCV RNA less frequently, say once every 4 weeks and take only regular blood tests to make sure I can continue.

Any more questions - don't be sorry and feel free to ask.

Here's the latest fibroscan

Best,

Lucas

-- Edited by Lucas on Thursday 10th of December 2015 06:06:56 PM

mallani · Guru

Hi Lucas,

Yours is a strange story. I'm surprised that you're 'managing' your own treatment when you don't know a CBC is a Complete Blood Count. Also your 'extensive research' led you to an outdated 2011 Phase 2 clinical trial.

To summarize your treatment: You know you were infected at age 18- that's unusual. You're Genotype 3a, and we don't know your VL or ALT before treatment. A Fibroscan does not show 'F3 with some F4 spots'. It gives an average reading in kPa, which translates into a fibrosis stage, eg F3, F3-4 or F4. You started treatment with a generic Sofosbuvir and Daclatasvir- we don't know where they were manufactured. After 2 weeks, your AST and ALT were normal, and after 4 weeks, you were Undetected . Was this a quantitative RNA test at an approved Lab?

Then at about week 8, you were Detected, with a VL of <100 m.e., so you decided to add PegInterferon and Ribavirin. Now, after 12 weeks (4 weeks of Quad. therapy), you are 'positive' still. Is this a quantitative or qualitative VL test?

A Hb of 14.5 is quite high for someone after 4 weeks of Ribavirin. Are you on the correct dose - 1,200mg/day and are the Peg and Riba from a recognised Company?

As Tig asked, what are your platelets (thrombocytes)? Low platelets in a 45 y.o. may suggest cirrhosis.

Sorry about the questions, but hardly anyone relapses while still on Sofosbuvir. 99% of relapses occur after treatment is stopped. I wonder about the quality of your 'Sofosbuvir'.

Tig · Admin

Lucas,

Thanks for the additional information. A few thoughts and opinions come to mind. You don't mention the thrombocyte (platelets) level. I have to assume they are low and that can be caused by treatment and the advanced fibrosis. Since you know you are F3 with the indication of F4 areas, I would want an actual biopsy to confirm your fibrosis stage. Cirrhosis is also responsible for causing lower platelet levels. You need a positive fibrosis determination. Achieving SVR will generally halt further fibrosis progression, but future care and your current treatment regimen could be impacted/improved by that knowledge. Something to consider anyway.

The neutrophils and leukocytes are white blood cell components and the Interferon really hits them hard. I required Neupogen injections throughout treatment because of the low white count. Ribavirin causes hemolytic anemia, which damages and negatively impacts the red blood cell levels. Overall, from your description, these levels have been impacted, but not too seriously yet. It's important to keep a close eye on those values, because some adjustments to your protocol may be needed. I know you're making many of your own decisions, but you need to be very cautious and should be guided by a Hepatologist if possible.

Lucas · Member

Hi Tig,

Thank you for joining my thread, your questions are more than welcome.

Surprisingly, I feel very well. I'm rather fit and even now on my 13th week of the therapy and 5th week of quad I run 8-10km 2-3 times a week (used to be 10-15km before), plus I keep working and it's pretty intensive last 10-15 years, if you know what I mean ;) I also do yoga, meditation and stick to a healthy diet. I do all blood tests weekly and ALT AST are normal starting from week 2, what is CBC I don't know. Hemoglobin is 14.5 (our range is 13.1-17.2) i.e. it's normal. What is out of range is thrombocytes, neutrophils, and leukocytes, but not too much.

I think this is the problem that I do blood tests weekly, i.e. too often. And I do so because I run the therapy myself, that is I seek doctors advice but then I make my own decisions based on their input and EASL/FDA guidelines and I pay for everything myself. And of course I am not 100% sure in the generics I use, although there are dozens of fellows on local forum who have reached SVR with the same drugs from the same suppliers and even from the same batch. And we all do blood tests weekly and almost all of us get negative week 2-4 and keep that way. I'm an unfortunate exception.

So I plan to visit a couple more doctors and if there will be no serious objections, stick with quad for as long as blood tests permit, then remove PEG if I have to and try to get full 24 weeks of DCV+SOF+RBV which is an approved plan for genotype 3 and cirrhosis, which I don't have but I have F3 with some F4 spots based on fibroscan. And then I will just pray.

Any questions or suggestions - more than welcome.

Best,

Lucas

Tig · Admin

Hi Lucas,

You have certainly had an unusual journey so far and one I haven't seen anyone else experience. You have presented some differences that seem unusual to me. You have doctors that disagree with a course of treatment and the addition of Interferon and Ribavirin mid treatment, must have your metabolism spinning.

I would like to ask a few questions if I may. How are you feeling? Are your physical and mental strengths holding up? I'm curious if you have any other blood test results aside from the viral load tests? Do you have a current ALT, AST and CBC? What was your last Hemoglobin level? I'm also wondering why they are repeating your viral load tests so frequently? Here in the USA, one is completed before treatment starts, sometimes one is done during treatment and at the end, but not always, preferring to wait until EOT+12. The reason is because we see a positive (detected) viral count at the end of treatment, although it is usually quite low, sometimes detected but too low to quantify. I think all of your repeated results just add to the confusion between your doctors. It seems there are too many differing opinions among them and you're not getting the same answer from any of them.

Are you planning on continuing the quad treatment through week 24 or are you done? Do you know where your generic drugs are coming from? Have they been verified for content? Any information you can share will help us understand your situation better.

Lucas · Member

Hi Cinnamon Girl,

Guess what? You'll get surprised - 12 weeks result is positive :)

Which makes me scratch my head a bit, because there are no directions from this point. Or are there?

-- Edited by Lucas on Wednesday 9th of December 2015 05:23:17 PM

Cinnamon Girl · Guru

Thanks for the link, Lucas, and I can see your reasoning for adding Peg Inf + riba, although bear in mind that this report is from 2011 and a lot more data has been published since then.

It is indeed true that some people go on to reach SVR even after a detected viral load result at end of treatment, with these new interferon-free DAA treatments. Here`s an article which explains that in more detail...

http://www.aidsmap.com/HCV-viral-load-levels-during-treatment-and-speed-of-decline-do-not-predict-cure-with-interferon-free-therapy/page/2962856/

I think you did panic a bit, although in your circumstances I`m sure most of us can understand that. And when you`re receiving contradictory advice from different doctors, anyone would be confused!

It`s difficult to know how to advise you at this point, but I do tend to agree that continuing with your original combination of daclatasvir and sofosbuvir would probably have been advisable. We often see people here who have a `detected` viral load result at some point during their treatment, but then by the next test, or by end of treatment, they are undetectable.

I would wait until you get your 12 week viral load test and make a decision about how to continue from there, although I`d be very surprised if it wasn`t undetected!

You have a great attitude, and you`re certainly not too stupid to get cured!! smile You`ll get there, I`m quite sure!

Lucas · Member

Thank you for warm welcome! I keep wondering and enjoying how friendly and supportive are people fighting a disease in any country ))

I checked all recommendation, mostly EASL and that was actually my initial intended therapy - 12 weeks of DCV and SOF. And they say that even HCV positive after 12 weeks doesn't mean you won't get SVR. This is far beyond my comprehension though )

A lot of people using the same generic drugs I do had HCV RNA undetectable after 1-2-3 weeks and SVR 12 weeks or more. So my relapse coupled with age, fibrosis and 27 years of infection led me to extend to 24 weeks. And detectable RNA after 8 weeks switched me to panic mode which resulted in extensive research and I have found this www.nejm.org/doi/suppl/10.1056/NEJMoa1306218/suppl_file/nejmoa1306218_protocol.pdf
Search for word "rescue"and you will find mentioning of "rescue therapy".

So some local docs advise to discontinue DCV and go SOF+RIB+PEG for 24 weeks. Some advise to continue all four for 24 weeks counting from PEG addition. Some say I and should have continued DCV+SOF regardless of relapse and slow response. And some say I'm too stupid to get cured )))

So that's basically where I am and my plan for now is to go 24 weeks counting from the very start and run on all four as long as blood tests allow, and if blood goes bad - remove PEG, then RIB (if I really have to) but leave DCV+SOF anyway until 24 full weeks.

Cinnamon Girl · Guru

Hello Lucas, and a warm welcome to you!

I`m glad you found us, this is an international forum and anyone who is affected by Hep C is very welcome, we`re here to help as many people as possible!

I can understand why you felt you needed to add peg interferon and ribavirin to boost the effectiveness of your treatment, although it`s certainly an unusual approach and not actually a recommended treatment combination. I do sympathise with your predicament though, and I admire your determination to rid yourself of the Hep c virus!

Here`s a link to the current treatment recommendations from the AASLD, scroll down to see the box that applies to Gen 3...

http://www.hcvguidelines.org/full-report/initial-treatment-hcv-infection

Anyway, congratulations on your week 11 undetected result, and it looks very likely that you`ll continue that way! So you`ve completed 12 weeks, which is actually the recommended duration for the daclatasvir and sofosbuvir combination treatment. Have you stopped taking the medications now?

Wishing you all the best of luck, please keep in touch! smile

basser · Senior Member

hi lucas.welcome to the forum.glad you joined us. i was on daclatisvir sof and riba.it worked .i had to have the ribavirin as i am also cirrhotic.your regime of sof dac and riba is a winner.have no doubt tha you will acchive svr.will follow your journey .keep in touch best of health william

Lucas · Member

Hi all,

I'm 45 years old, got HCV for 27 years, genotype 3a, fibrosis 3 (fibroscan). Treatment naive, I was waiting for interferon free cure.

My decision was to wait until fibrosis gets to 3 and then start with whatever would be available at the moment. So I started this September with Daclatasvir and Sofosbuvir generics, because one of them is not available in Russia and both are way too expensive as originals. I had HCV undetectable after week 4 but then it became detectable again yet with quantity <100 ME. At week 8 I added Ribavirin and pegylated interferon.

Because local doctors don't know much about treatment with new inhibitors, my approach is to seek advice from the best doctors I can find, read clinical trials reports, communicate on HCV forums (we have a very good one in Russia) and then make decisions myself.

So for now I'm 12 weeks into the therapy, I had negative tests weeks 4 and 11 and positive in between, week 12 is not ready yet. And I'm on quad component therapy at the moment.

Anybody here on a similar treatment?

Thanks,

Lucas

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