Author Topic: Double genotype story (Read 33984 times)

waylander · « **on:** July 19, 2015, 04:03:09 pm »

Hello everyone,
I'm not native English speaker so sry in advance for my English.

My HCV story started last year when after some regular blood tests and elevated ALT and AST parameters I went for hepatitis testing and got positive result for Hep C. Result was further confirmed with RNA test that counted 440.000 and to my disbelief showed that I have two genotypes (1b and 4). I did biopsy and my score was F0, A1 which doc said is OK, but since for some years I had problems with stomach pain, strange headaches and fatigue I think HCV could account to that.
Since in my country only available treatment is Pegintron-Ribavirin combo I started it but after 12 weeks viral count went down only tenfold to ~50.000 which was not enough to continue treatment. My doc wanted to give me one more chance so we pursued therapy to week 17 but even than my count was above needed limit (final count was 5.500), so I was marked as slow responder and put aside to wait for approval of new gen meds, which god knows when might happen.

I had to admit that stopping the therapy did not hit me too hard since Peg-Riba duo was wrecking both my body and mind, and after reading stories of prolonged side effects that might never wear off, I'm pretty sure that I don't want to go down that road again.
I was wondering how I got HCV with two genotypes, and it is either from some recreational drug use (no IV) when I was in the college some 15 years ago, or from 3 dental surgeries I had in past 20 years.
Now I'm trying to run a healthy life, and by joining this forum gather knowledge and share mine of how to win this battle. I know I have a strange genotype combo and could not find much about it, so every experience is very valuable to me.
Also I would like to know if there are some experience in acquiring generic meds from India or Egypt since the current price of new meds like Sovaldi or Harvoni are impossible for me to pay.

newguy1 · « **Reply #1 on:** July 19, 2015, 04:56:01 pm »

Hey waylander. The good news for you is that Harvoni works for both genotype 1 and 4. I am not a doctor but I assume it would be just as effective against both at the same time, and 8-12 weeks is probably all you need. There are some stories here of people getting it in India and Egypt (though I think that was for Sovaldi, Harvoni can't be far behind). Depending on where you live, you may be able to get it through clinical trials in Europe as well (just do a search on clinicaltrials.org).

lporterrn · « **Reply #2 on:** July 19, 2015, 05:16:42 pm »

Dear Waylander,
Welcome to the Forum. Sounds like you were diagnosed with hep C early, and you are being very proactive.

Regarding your multiple genotypes, it is actually more common than we realize. Many of us may have had more than one genotype, but in time, one become dominant, and by the time we were tested, only one showed up. The fact that you were tested early is likely why they were able to see both. In time, one may become undetectable.

Because this doesn't come up often, I'll use the opportunity to give info to Forum members. There are variations on this:

Dual or coninfection - these may occur when someone is infected with 2 or more genotypes at the same time - this tends to be common among those who received blood-based products, such as hemophiliacs, or people like myself who got massive transfusions

Superinfections - this is when a person is infected with one kind genotype, and then later is infected with another - this tends to occur with multiple exposures, such as with sharing stuff related to injection drug use.

If things aren't complicated enough, there's a thing called HCV recombination (in which the viruses exchange genetic material. Also, genotypes can "switch." In short, it is one big opportunity for confusion. So, let me simplify and make it relevant - You happen to have genotypes that use similar treatments, so when you can get one of the newer treatments, it won't matter that you have multiple genotypes.

As for access to generics, so far there is no generic Harvoni or Viekira, but India is selling Sovaldi - check out the Hep blogger Greg Jefferys for more info.http://blogs.hepmag.com/gregjefferys/

In the meantime, your minimal damage works in your favor, if you are patient.[/list]

waylander · « **Reply #3 on:** July 20, 2015, 03:15:15 am »

Newguy1 & Iportern: Many thanks for valuable information. I've stumbled on some research on double genotypes and they also confirm your info.
Unfortunately in Serbia it is not allowed to import meds via post, so for generics I would have to travel to some other country, probably India. Also there are no trials with new meds in Serbia probably cos they are not approved yet.
I've checked Greg's blog, and found very interesting information on how to get generics. Greg is very nice and helpful guy and he responded to my mail within hours. I'm thrilled that there is solution for us who don't have regular access to new meds, and really hope that Greg's effort in helping people will get somehow rewarded.

waylander · « **Reply #4 on:** September 03, 2015, 04:14:55 pm »

Well, after 4 months since Riba+Pegi treatment failed I've got my PCR and bloodwork.
Bug count has risen from 5500 at the time tx stopped to 74.000 and liver parameters are:
ALT 24
AST 89
GGT48
ALP 69
Bilirubin total 16

The plan now is to wait for generic Harvoni, since that option has highest success rate for my double genotype.
Interesting site where SVR percentages are based on clinic HCV trials:
http://hcvsvrpredictor.liverdoc.com/#/HCV

Can ppl who like me failed riba+peg treatment share progression rate of virus count and how that affected liver and overall health. I've heard on few occasions that bug is back with a vengeance

KimInTheForest · « **Reply #5 on:** September 03, 2015, 04:44:19 pm »

Hi Waylander. You have probably seen this blog post by Greg Jefferys. But he says generic Harvoni is expected to be available in India by December 2015. Elsewhere I have read January 2016.

http://blogs.hepmag.com/gregjefferys/2015/07/generic_harvonis_eta.html

Price is expected to be about $1,000 for a 3-month supply. And as others here have mentioned, that will work for your dual genotype - 1 and 4.

best of luck to you!
kim

waylander · « **Reply #6 on:** September 03, 2015, 05:03:07 pm »

Hi Kim, thx for reply.
I've been reading Greg's blog for a while and had also contacted him.
There are quite a few stories around about generic Harvoni availability ranging from October to 1st quarter of 2016. My personal opinion is that Gilead is doing their best to make harder obtaining Harvoni for non-Indian nationals then it is a case with Sovaldi now.

One other option I've recently stumbled on which sounds pretty obscure is purchasing Sofosbuvir and Ledispavir in API powdered form and get a chemist to make pills out of it (DIY Harvoni

).
Here is a thread of Aussie guy that has gone down that road:
http://www.medhelp.org/posts/Hepatitis-C/Hep-C-treatment/show/2720205

KimInTheForest · « **Reply #7 on:** September 03, 2015, 05:10:12 pm »

I have heard of that approach as well, Waylander - buying sofosbuvir & ledipasvir in powered form from China and having a pharmacist make it up into 400/90 gel caps for you. I say whatever works, and whatever route you can find to get these drugs into your body - so long as they are the real deal.

Good luck!

kim

waylander · « **Reply #8 on:** October 03, 2015, 03:58:48 pm »

If valid, this document confirms that generic Harvoni release date is not that close as all of us without regular access to meds hope. In short regulators in India recommends to some pharma companies that prior to starting marketing and sales of generic Harvoni and Daclatasvir, there shoud be clinical trials done.

Check under numbers 3,4 and 5.
http://www.cdsco.nic.in/writereaddata/14th%20SEC%20Agenda%20Gastro%2027_08_2015.pdf

Good news is that Bangladeshi Incepta Pharmaceuticals released Twinvir which is first confirmed generic Harvoni out there. Same company was also first on generic Sovaldi early this year.

waylander · « **Reply #9 on:** January 02, 2016, 03:25:20 pm »

Well, after definitely confirmed that meds cannot be imported by mail in Serbia, I've decided to fly to India and pick them up myself.
Loads of thanks to Mr.Greg Jefferys whom I owe eternal gratitude for giving me hope when I had to stop peg/riba tx last spring, and who helped me getting reliable contacts in India.
I'm flying in two weeks, and will post here all interesting details.

KimInTheForest · « **Reply #10 on:** January 02, 2016, 04:13:44 pm »

That's great Waylander! Sounds like you are on your way (almost).

I say, whatever it takes to get what you need to get yourself cured.

Keep us posted.
kim

waylander · « **Reply #11 on:** January 04, 2016, 02:13:12 pm »

Thx for support Kim. Valuable info from this and other Hepc forums gave me hope and encouraged me to take action and not to wait incompetent politicians and doctors to remember that my tax money are paying their salaries.
I'm thrilled about trip to India cos I love their culture and food, and return ticket is not so expensive (~600USD).
The price for 3 bottles of Ledifos (12 weeks tx generic Harvoni) I got quoted is 1000USD delivered to my hotel. I heard that prices for various brands can be even lower but this is trusted source Greg gave so I'm not going to search any further just to save few bucks.

lporterrn · « **Reply #12 on:** January 04, 2016, 02:25:31 pm »

India is a wonderful country to visit, and a special way to mark your journey towards being cured. Let us know how it goes. Maybe share your Hep Story? http://www.hepmag.com/hep_stories.shtml

jakas · « **Reply #13 on:** January 04, 2016, 03:43:33 pm »

Really glad for you. Hope it all works out well and you get well soon. Enjoy India. I love it.

HazelAustralia · « **Reply #14 on:** January 04, 2016, 04:37:34 pm »

Hi Waylander,

It's great what you are doing. In case you haven't considered it - I was going to India (for a holiday) when the opportunity came up to start treatment earlier than I expected (someone had pulled out of a trial and I got their place - I'm in Australia).

There was a problem with the typhoid vaccination - or any live vaccination - and the period of time that it would stay in the body and its interaction with the treatment (V-Pak & riba). Just a heads up to check out any vaccinations with your doctor for interactions.

When I was still planning to go, my gastroenterologist also suggested that i take a small esky to carry my pills in so they wouldn't get heat affected.

Have a great time!
Hazel

waylander · « **Reply #15 on:** January 27, 2016, 06:44:04 am »

Back from India, and still full of impressions from this vast country.
Had a great five days roaming huge polluted Delhi, where in this time of year is cold and foggy. Would selected Mumbai if I knew that before reserving my plane tickects

Greg's contact for generics is great and helpful fellow who brought 2x12 week supply of Ledifos to my hotel, so no fuss running around Delhi with wads of cash on me.
Additional 12 weeks therapy was for fellow countryman who could not get an Indian visa in time.

This morning first little reddish pill went down, so cheers to that

lporterrn · « **Reply #16 on:** January 27, 2016, 10:24:08 am »

Cheers to you and your treatment. What an adventure.

waylander · « **Reply #17 on:** January 28, 2016, 02:37:25 am »

Thx for all the good wishes and support.
Well after day one there are no side effects yet, and I just popped up second pill. Choosed to take em in the morning before breakfast on empty stomach.
After how many days/weeks on Harvoni tx side effects starts?

btw. maybe this thread should be moved to On hepatitis C treatment?

Mike · « **Reply #18 on:** January 28, 2016, 08:05:15 pm »

Best wishes for a cure!

Mike

waylander · « **Reply #19 on:** February 22, 2016, 01:49:17 pm »

Tomorrow will be 4 weeks into Ledifos (gen Harvoni) treatment and aside from few little headaches, stomach gas issues and almost non detectable hair thinning there are no major side effects.
Liver enzymes are significantly lower then before tx so I presume chemistry is working:
before tx: AST 41, ALT 59, GGT 39
@ 4weeks:AST 14, ALT 14, GGT 19

For PCR confirmation I will wait EOT. Reason is that my good doc from public hospital is monitoring me off the record because Harvoni is still not registered in Serbia.

HazelAustralia · « **Reply #20 on:** February 22, 2016, 07:48:07 pm »

Hi Waylander,

That's great you found a doctor in the public hospital who was prepared to monitor you - good people all around us! Like you, I think you could move to the 'on treatment forum.'
Best wishes
Hazel

AussieRosa · « **Reply #21 on:** February 22, 2016, 09:44:15 pm »

Waylander, congratulations on taking treatment into your own hands and starting. So glad the LFTs are looking good now. You know it's working. All the best. Hope you continue posting and letting us know how you're doing with treatment and beyond. You would be more than welcome in the On Treatment forum too.

Rosa

KimInTheForest · « **Reply #22 on:** March 21, 2016, 02:13:55 pm »

Excellent news, Waylander! You are on your way

kim

waylander · « **Reply #23 on:** March 25, 2016, 04:45:01 pm »

Just opened 3rd and hopefully last bottle of Ledifos. My first on tx PCR is scheduled on EOT, so right now just to report what side effects I had experienced.
The most noticable is very dry skin and some rash mostly on wrists. There are some hair thinning but nothing dramatic as with pegi/riba tx. Also I noticed that my vision is sometimes blurred, especially when reading text on screen, like there is a halo around letters. Hopefully that will stop after tx.
Aside from that there was some mild headaches and bowel issues but nothing big. I stopped taking all supplements and vitamins during tx just to be on the safe side. My main ally is lots of water and good music.
Will report again at EOT.

waylander · « **Reply #24 on:** April 19, 2016, 05:02:20 pm »

Well, there goes the last orange pill today. Little confused and scared about ending tx, but hoping for the best. My first PCR on tx is scheduled for tomorrow, will probably wait for week or two for the results.
Will start milk thistle again, and try to get as low on carbs as I can. During tx I avoided all kind of supplements and artificial vitamins just to be safe, but now will try to boost my defenses in case any of the bugs left around.

HazelAustralia · « **Reply #25 on:** April 21, 2016, 04:08:33 am »

Good news waylander,
glad to hear you've made it through and am interested to hear your post treatment plan and your EOT results too,

best,

Hazel

KimInTheForest · « **Reply #26 on:** April 21, 2016, 11:43:37 am »

Quote from: waylander on April 19, 2016, 05:02:20 pm

Well, there goes the last orange pill today. Little confused and scared about ending tx, but hoping for the best. My first PCR on tx is scheduled for tomorrow, will probably wait for week or two for the results.
Will start milk thistle again, and try to get as low on carbs as I can. During tx I avoided all kind of supplements and artificial vitamins just to be safe, but now will try to boost my defenses in case any of the bugs left around.

Congrats on finishing treatment, Waylander! Good luck on results. Odds are very much on your side.

kim

waylander · « **Reply #27 on:** May 08, 2016, 04:49:39 pm »

Finally my PCR results from a blood drawn after 12 weeks of Ledifos (generic Harvoni) tx has arrived, and it says:

UNDETECTED

LFT's also looking great: ALT 13, AST 17, GGT 12
Now feeling relaxed towards next checkpoint at SVR4

KimInTheForest · « **Reply #28 on:** May 10, 2016, 09:51:35 pm »

Nice going Waylander! Congrats!!

kim

waylander · « **Reply #29 on:** September 15, 2016, 07:23:18 pm »

Well it has been awhile since my last post. In the meantime I felt better and better, and 17 weeks after EOT I did PCR.
Results are still negative, and hopefully now I can say that both dragons are slayed

LFT results has never been lower: ALT 15, AST 12, GGT 6, ALP 39

I was really worried because of my double genotype and very little info on cases like mine, but for now generics magic works great.
Want to thank everyone here for support and valuable info, mr.Parag Jain of Bullpharmachem who provided Ledifos and was great friend and tour guide for me in Delhi, and of course inspiring Greg Jefferys, with whom I started this amazing escape from dragons den last May.

Mike · « **Reply #30 on:** September 17, 2016, 11:17:50 am »

Hi Waylander,

Looks like you slayed a double dragon! Congrats!

Mike

jakas · « **Reply #31 on:** September 19, 2016, 07:19:51 am »

Congrats

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