Hep C Discussion Forum

Terry · Senior Member

RE: Just failed Harvoni Treatment

Tig · Admin

Stay in touch, Charles and let me know how things progress.

JimmyK · Guru

Greetings TF.

Knowledge is power and there is a huge base of knowledge here at The Friends.

https://www.hepmag.com/article/Harvoni-retreatment-27162-106930137

The above is an article that may be of interest to you.

All our best!

JimmyK

treatfailure · Member

Tig

I will PM you the info I have on the India connection by the end of the week, I cant scan right now and am having computer issues that I will have solved shortly i hope, the meds are coming from Gilead and all i have are the wire transfer info, addresses etc, however it may not be as solid a way to go with as working with Nirav

treatfailure · Member

Thank you Observer

treatfailure · Member

Hi Canuck

I have never had a biopsy. I had an ultrasound when diagnosed and was told all looked good, no damage(10yrs ago) and another before my Harvoni treatment began in January 2017(12 week program) and these results were never really discussed with me. I was told I was stage 4 after fibrosis test in Doctors office, those results were what qualified me for treatment. I have no idea how long I have been stage 4. As i said I have been healthy, happy and vigorous and had no plan to take interferon. I never really thought about treatment until the Harvoni ads came on TV. I was shocked when I was told I had stage 4 damage. Was asked the other day on here if I had all my imaging and blood test results etc at home and I do not I will get this info after next appointment. I feel like a very non proactive patient after seeing the proactive way so many of you are when facing this demon and the witnessing the extent of your knowledge

Nirav · Member

@Tig. Thanks.

@Wendy. Thanks. The ultimate goal is to eliminate Hepatitis C. Whereas many countries have strange Healthcare rules where a person has to wait until they are sick enough to be approved. That's never the case in India. In India we get medicine once we are detected.

The only thing people need to do is to be wise is to get treatment as soon as detected and not to wait for approval. They need to fight for their rights to be approved. They can also chose the support path from the drug manufacturing companies. The last option they can chose is generics which are available at any moment. Don't let the HepC spread...!!!

wendyo · Guru

I hope TF finds assistance and I want to say thank you to Nirav for being there to help members of the forum when there seems to be little help and hope.

Canuck · Guru

Hi again treatfailure,

I am glad you (yourself) and our knowledgeable TIG (and Nirav) have covered a lot of territory here already.

You must be feeling perhaps some pressure, as to what you need/want to do, what with that mid-Aug appointment looming up soon in front of you.

The appointment discussion(s) should only help to solidfy things more for you.

I have some other questions for you though, if you will bear with me a bit ... you say you feel pretty healthy/fit/no "symptoms" per say, even though you might have been packing the HCV for some 4 decades, (diagnosed 10 years ago). So ... ten years ago, did you have a liver biopsy done, or have you ever had a liver biopsy done in the last ten years? You also say you are "stage 4", when was this determination made, and by what method of testing, and for how long have you been stage 4? I am trying to get an idea of the rate of progression of your liver firmness over time in the last 10 years, to recent - when were you at fibrosis/cirrhosis levels of less than "stage 4"?

Your history of liver fibrosis/cirrhosis testing (over time) would be helpful here to know. As would other current conditions assessed by abdominal U/S results, CAT scan imagings (is there any acities/enlarged spleen/nodularity, etc.), and have you had fibroscan Fscores done? How are your bloods?

Did you get any other further (deep-sequencing I think they are) RAV/RAS testing results/notes, or is this report what you have? Did your doc recommend you wait a while, or, in a perfect world would he wish to re-treat you right away - what did he say would be best?

How long ago did you start and stop your Harvoni (12 weeks?, ran from when to when), and when did the failure occur? You said "just recently" failed, so might we assume you got through the 12 weeks and then found after/recently, it had failed? Well then, if so, I am not at all surprized they list the 5A's on your "likelihood" report, as this seems par for the course after a recent failure - they would be would be "fittist" just after a failure I believe, and these variants can become less fit, less persistant, over time. I am certainly not knowledgeable about re-treatment, but I think (1) these may still be relatively "early" days since your failure, and (2) Tig is right about how they use the new DAA's in various doubles/longer courses or triples to address this. Vosevi, and the new DAA's are being used to address failures, and a few seem particularily good at it. You will find the right treatment.

I hope you are not feeling panicky, it does no good - you are on the right path, one way or another - methodically gathering your best data, advice, garnering assistance, especially from your own doc first.

Out of country procurements? I am still of the mind that other Canadians have been forced to travel (with script and complete assessment labs and hx in hand, and/or, with dx/script/assessments from the out of country doc) to be able to obtain drugs out of country, and then, they have had to start treatment (begin taking the course) at least one pill down the gullet, while out of country, then, at ANY customs/border on the way home, you cannot be denied entry of your 12 week course of the properly prescribed drugs that you are already on. I do not know of any mail-order direct to Canada, and how that would work to get past customs, but I am not "up" on it, of late.

Sorry for your dilemma, but you will get it figured out. C.

Tig · Admin

Hi Nirav,

Thanks for your information. You're always very helpful and I appreciate your concern. Mr. Jeffreys has spoken kindly of you as well.

Anyone that wants to discuss this with Nirav can contact him by private message. There is additional contact information available here on the forum as well. We don't allow advertising on the forum or medical recommendations for care, so all inquiries must be done on an individual and private basis.

Nirav · Member

Hello,

Yes india has licensed generics approved by gilead. Any help needed for generics you can contact me. Also anyone who needs help for medical tourism can contact me. Tig this is just to Share information as being an Indian i know how people are ripped off. So just to make assure they are in safe hands. This post can be deleted if i have voided any rules.

Even the Australian person Mr.Greg Jefferys knows me. I have helped many patients sent by him in India and also shipped medicine from India to many other countries.

Observer · Guru

welcome to the forum from another BCer, I also refused interferon, tried for Harvoni but was too sick for the 8 weeks of that that pharmacare offered to pay for and needed 12 weeks of holkira and ribiviribn

really sorry to hear the treatment failed you.

I really hope you can retreat soon and successfully.

Alison

Tig · Admin

You can send it to me in a private message. Have you contacted a gentleman in Australia, Greg Jeffreys?

treatfailure · Member

wow am I ever grateful I found this discussion forum

treatfailure · Member

My link mails directly into Canada don't know how it would work stateside One may have to come here to BC for pickup. You of course can fly to India or Egypt and purchase and I have that info as well i need to ask the people who provided me this link if they are OK with providing it on an open forum.

Tig · Admin

Now, just so you're aware, even though you may have resistance to an NS5A or B drug, the inclusion of one drug that you are susceptible to can mitigate or eliminate that resistance. All you have to do is break the reproduction chain at the NS5A, 5B or NS3/4A location. How many weeks did you treat with Harvoni? If treatment is urgent, you could even retreat with 24 weeks of Harvoni w/wo Ribavirin.

Anyway, here's a Merck trial in the states that has information related to treatment failures with these DAA's. Good knowledge to retain. You may have access to a similar trial in CA. Canuck is on top of the Canadian angle, she completed an 8 week trial of Vosevi. So this may be a protocol to ask about.

Merck 3682-B Trial

treatfailure · Member

no I have not

treatfailure · Member

Tig are the resistance test results

Reduced size...

-- Edited by Tig on Saturday 29th of July 2017 08:18:45 PM

Tig · Admin

Have you asked Gilead or your healthcare team about Canadian trials?

Tig · Admin

Here is some light reading and be aware that this was written before Vosevi was approved this month.

Retreatment in those with NS5A failures/GT1

Here is our section on various new drugs, all on the top. Hep C News

treatfailure · Member

Tig you are asking me questions faster than I can reply. HAHA I must proceed by buying and importing my own meds I know how to access Gilead meds but may need to look at Merck or AbbVie and have not found that info yet.

Hoping someone on these forums may provide me with info on those avenues for generic or brand name meds

Tig · Admin

I would appreciate you providing the importation loophole you found on the generics if you have a moment to share. I know they closed one last year but you're still able to import it into the USA and drive across from BC and pick it up.

Tig · Admin

Do you have your resistance profile available? Many of the meds you have resistance to can be combined with another that will offset the resistance. There are also some other protocols that may work as well. Knowing your RAS profile is necessary to form an opinion on it.

treatfailure · Member

thank you for the info on Vosevi. I know how to access Gilead meds cost effectively and import legally into Canada from abroad so will discuss this treatment option with my doc thank you thank you

I have not seen my Doctor since receiving test results on my resistance testing. They sent me a copy via email so i could begin to look at alternatives as they are aware I will not wait for BC to provide a solution. My appointment is mid august to discuss actual perscriptions. One thing I now realize I was only tested with BC approved meds in mind so I will pursue resistance re assessment with any all alternative meds I can find

I have stage 4 fibrosis and am unwilling to wait for BC/pharmacare to decide my fate although my doctor wishes I would

I learned I had this virus about 10 years ago after a chance meeting with an old friend who advised me to be tested. i have shown no symptoms and am unbelievably healthy and vigorous despite the stage 4 diagnosis. when I first learned I had this virus interferon was the "cure" and I opted out.

I had blood tests done to see why I failed and what other options may be for future treatment. I was only tested for drugs approved in Canada I am "likely resistant to

Daclatavir- Daklinza
Ledipasvir - Harvoni
Velpatasvir - Epclusa
Elbasvir - Zepatier
Ombitasvir- Holkira Pak + Technivie
Simeprevir-Galexos
My viral loads were 4 M to start

Tig · Admin

If generics are something you want to consider purchasing from an overseas source, there are some excellent resources available.

Canuck · Guru

Hi there,

Welcome here, but sorry to hear about your disappointment.

I am a fellow Canuck and BCer and I know the position your are in - the BC "fine-print" about re-treatment, and the lack of "readily-available" good drugs in this Province.

Yes, Tig's thinking is the same as mine - Vosevi!

I will put my thinking cap on, maybe we can let our fingers do the walking, and try to figure out where you can go and how you can get Vosevi.

Off the top of my head, query your BC doc, thoroughly, about what your chances are of obtaining the likes of Gilead's Vosevi any time soon here. In the meanwhile, exhaust other possible info sources ... (1) contact Gilead directly for info (via Tig's inks) and ask specifically how and if a BC'er is ever going to be able to get Vosevi, and (2) keep an eye on out-of-Province and out-of-Country options, IF you ultimately find no in-country options ... people have explored possible availabilty via "Greg Jeffery/Dr. James Freeman/FixHepC Buyer's Club" in Australia. FixHepC Buyer's Club did have some "Redemption" trials going on for a while there, that included epclusa and there was also Vosevi mentioned - you would have to scour up the Australian info. (Although, "only in Canada you say" ... they actually make it more difficult for Canucks to go this out-of-country route than if you lived in another country!)

Once a person gets through digesting the "fine-print" BS ... the current list of drugs (on the Pharma-care/MSP menu) in BC, is pathetic (as far as what one can actually, in reality, receive) via our provincial systems. You are wise to be asking and exploring now, so you end up with the best treatment you can get.

Do you own (at home) or have access to all your labs/assessments/imagings? Can you fill us in a bit more, and, if you know specifically what your "resistance" testing showed, aside from your mention of 5A? What advice did your doc have for you, what were his suggestions (on anything)? There are new triples out there, that will fit you, the new ones have newer/better/potent everything! including 5A's!

Sorry for your troubles, but glad you are re-grouping and sussing. C.

Tig · Admin

Hi Charles,

Welcome to the forum. Sorry to hear about your Harvoni failure, we've been discussing the same with another member that relapsed following an 8 week treatment regimen awhile back. There are options available and I'll be able to discuss it more in depth when I get home later. My first thought is the newest offering from Gilead called Vosevi. Use our search function or check the Hep C News section. You'll find it listed there.

If possible, please set up your signature line with a brief bio of your current situation and some history. There's a red link in mine for instructions if needed. You'll find it in your profile page. Your Genotype, viral load before and after treatment and liver enzymes and your treatment history are helpful when replying. Do you know what your fibrosis stage is? List that, too.

Don't worry, there are options available! Others will be along to welcome you to the group. You're among friends. Talk with you later...

treatfailure · Member

In BC Canada and just failed Harvoni treatment. Had DNA testing to identify the drugs I am resistant to (the reason for the fail) and drugs that may work down the road.

I am 1a with stage 4 damage having probably had this thing for 40+ years. BC is not offering re-treatment at this time although they "may" be in a position in the fall of 2018.

I am interested in info on obtaining the "likely susceptible" drugs for my next attempt in a country where I could afford to pay myself.

All info greatly appreciated

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