Hep C Discussion Forum

bcfish12 · Member

RE: Generic meds

Canuck · Guru

Yay Fish!!

THAT's how we do it! 3a's killin' it! But YOU did it especially well! I can't tell you how proud I am of you for going around the world to get yourslef the right treatment. Very impressive. None of it was easy, and 24 weeks was a long time.

Also impressive is the way that kPa has come down!! - very nice!

Good to get that SVR 24 milestone under your belt isn't it?

So, all in all, how are you feeling now?? SVR 24 is still early days, but, we would still all be interested to know what lags and what had improved the most for you. At EOT+12 you were already noticing improvements in discomfort, better fog and fatigue. Have the skin things, whatever they were, all gone?

Nice you got that last feedback from your fibroscan, and you already had a good results with the last U/S, so, what is planned for you for further follow-up going forward. Will you automatically get another U/S and fibroscan, bloods 6 months from now?

Congrats buddy, I'm very pleased for ya. biggrin C.

Tig · Admin

Hey Fish!! Congratulations is the Order of the Day! So glad you took the initiative and went after it. You are another example of the effectiveness these drugs represent. It has almost become fool proof, almost! That's our next goal and then eradication. It's possible...sooner than later I'd bet! Stay in touch and enjoy that hep free life!

bcfish12 · Member

Hey Guys

Saw the Doc today SVR24 !!!! biggrin and my liver has improved Fibroscan results 8.9.

A year ago Mar 14, 2016 was on a plane to Australia to get my meds, even happier now I made that trip.

Doesn't matter how you get these new meds they work so well so keep the faith and thank you.

bcfish12 · Member

Hi guys, Thank you all. Yes SVR12 was all I was hoping to get for Christmas and I am very happy about it.

Canuck I can say now that I did not have any side affects that I noticed. I no longer get any pains from the liver area and I am more focused and not as fatigued and my skin has definitely improved from pre-treatment. I want to get Fibroscan done but I would have to pay myself we are only covered for 1 a year by BC Pharmacare. I did get a ultrasound done results were good.

When I was seeing my old doctor he wanted me to get a liver biopsy but I told him no that's to scary for me its not like it was the first time that was recommended to me. A couple years later he called to say a technician was coming from Calgary to his office with a portable Fibroscan machine and all his patients were going to get the test done. Well that was the first time I had heard of this type of scan equipment so I looked it up and learned it had been around since the late 2000's. I asked why he had not offered me this scan before he had nothing to say. So when I had the scan done and saw 14.6 as a result I knew it wasn't good. My doctor told me I had maybe 5 years before I would need a liver transplant. Well that scared the crap out of me so I sayed what do I do. I said you will have to do 6 months of peg-interferon plus Ribavirin so I replied what about the new meds Sovaldi at the time I didn't know about Daclatasvir and he never mentioned it. My Doctor told me Pharmacare will not pay for Sovaldi until you have tried the recommended meds ie peg-interferon plus Ribavirin. I sayed that's crazy that stuff could do some really damage to me, like how sick do I have to be your telling me I have cirrhosis, can't I make a deal with Pharmacare. He said no they will just tell you suck it up. So I sayed ok and let my wife know. Well I was preparing my self mentally for the nightmare to come. My wife was so worried because of the skin problems I already have and how physical my job can be. When I went to pick up the meds from the pharmacy there was a problem with getting the Ribavirin so my head told me this is a message get out while you can so I told the pharmacist just to forget about it I don't need any of it. I knew there was generic sof&doc. First I tried to get into trial like you Canuck and did get contact with a clinic in Vancouver that does trials and got hooked up with a herpetologist who is my Doctor now. He did another Fibrosan and its results were 11.6 and said he was waiting for possible trial for geno 3 but I would have to wait. I talked to him about Generics and how I could get access to them from Australia. He was aware of this route and told me it is a good option. So I decided to go that route and get Generics. my Doctor did want me to also take a least 12 weeks of Ribavirin but from other Australian recommendations and from info from clinical trials I decided not to take Ribaviran. So here I am almost 1 year from where it all started and I am SVR12 with a very happy wife.

You may already know this with all the amazing work being done in Australia the Australian government has made a decision since Feb. 2016 to beat Hepc by treating all patients with the new DAA's. What is even more amazing is my friend who lives in Australia but is not a citizen. Even know he is not citizen with hepc geno 1 F0 was treated for free with Havana 6 months ago and is now cured. Its a good thing he wasn't living in Canada.

Generics drugs have been around for years and most insurance companies will request generics unless there are none. Even the peg-interferon and Ribavirin BC Health Care wanted me to take were Generic.

Sorry to babble on I wish you all the best.

Canuck · Guru

Hey Fish,

Isn't this just GRAND!!

I agree with Wendy, your EOT+12 und is a really GREAT xmas present (to yourself) AND, for all of us too. All we want for xmas is a bunch of unds!

Another Canuck 3a CURED! (You killed it good, right from week 4).

I'm SOOO glad you took the bull by the horns, did all that hard work, and got yourself the best drugs you could muster (all the hard way), just look how ideal it turned out!

I am ashamed of our canada, not even making sof/dac easily available to you, or to me (and many other Canucks I am afraid). That they leave us with no recourses but to get our own, or luck into a trial, or settle for canda's first offered cheaper/lessor drugs. Just shameful.

I am so happy you had the gumption to leave the country to go get your own. Really well done man!

Nice Jaggles has you to receive import experience from if she too goes your route.

I appreciate that you have been filling us in on your journey/progress, all your stellar LFT improvements, and that you did not seem to have much in the way of sides? But, how have you been feeling, pre-treatment versus during treatment, and now, after - have you been experiencing any "improvements" in feeling better in any way?

We will all look forward to seeing your improvements, when they come, and by way of your fibroscans too.

I am SO pleased for your outcome. (BTW - because of your pro-activeness - I liked your "odds" right from the start!) biggrin C.

wendyo · Guru

Now that's the best Christmas present ever! Way to go Fish

Tig · Admin

Hey Fish,

Congrats Brother!! How sweet it is! I'm so happy to know this turned out the best it possibly could. Glad to hear about your good service from FHC. That's very good information to have going forward.

Stay in touch and share any news you hear in the future. We always enjoy good news!

OFFICIAL MEMBER OF

Pablito · Senior Member

Congrats bcfish!!! They are fine people over there (or down there) at FixHepC.

bcfish12 · Member

Hi Guys, Got my test results very happy to say I am now SVR12. March I will be shooting for svr24 and hopefully my Fibroscan results will also be improved from what I have read they should . I really like my odds now smile

Hey Jaggles I got my meds through Fixhepc so no worries if you go that route and Greg is another excellent choice too.

I know there are so many of us in this fight so keep the faith these new meds work.

Jaggles · Senior Member

Hi Bcfish, this is so reassuring for me....thanks for sharing your experience as I am now considering the same route but through Greg Jeffrey's or fixhepc....it's a miracle finding this site and every day I read on here and all the links people give...good luck and life love and peace biggrin

Canuck · Guru

Hey bcfish,

So glad to hear from you again.

I am thrilled you have finished your 24 weeks of dac 6 weeks ago. Us GT3's are getting cured just right, left and centre!! It's so grand how things are changing for all of us! Loopy (and our other lucky dac folk) will be thrilled with your news, another spectacular dac finish!

Most of us know what you say, about the feeling, the "comfort" of being "on" the meds, and then suddenly, not, and then the waiting ... but, you know in your heart, don't you - that your EOT+12 week VL will remain trounced, just like all your loads since week 4! I can feel it!

Big congrats, not just that you crashed your ALT, AST, and VL so stupendously right from week 4, and on, but you should be very much congratulated, on taking matters into your own hands, and doing all that wise work to get your own treatment via the Australia route.

It is a real shame in Canada that people are forced to have to do this (get their own drugs) - I am still so very disappointed with the system here (from federally, to every province, to every authority within each province) who dictate denying people good or better drug choices. It should NOT have had to be this way for you (or anyone), but I am very glad you chose your own route and destiny. Very wise, and brave too.

I cannot recall what kind of "following" you have arranged for Fscores and such, can you update us, on your past and future planned ultrasounds or fibroscans?

Good going man. biggrin C.

Tig · Admin

Hey Fish,

Thanks for the update. Sounds to me like you've got this in the bag! You did 24 weeks of a very effective protocol. Your numbers continued to look good, ensuring good perfusion and death to the little bastard cells!

Keep on a good hydration program and try to stay active. Diet is always important, so do your best. (As I sit here devouring a giant chocolate chip cookie, yum!) You have done a great thing, congrats. We'll be waiting for the SVR12 results, good luck!

bcfish12 · Member

Hi Every one,

I finished my treatment about six weeks ago now and still undetected. Have to wait till Dec. 5th to see if I get the early Christmas present I am praying for (SVR12). I was really nervous at first about finishing the meds because I knew the meds were killing those little bastard cells and now there is just me trying to live as healthy as possible. I know there are many other people waiting to find out if they are cured and I will pray for you all too.

Zlikster · Guru

Hi Anna,

From Australia you can order via mail, but you must check with your customs what do you need from documentation. Usually it's only ID and doctor's prescription for that medication. Australia has a law that permits generics (even if not officially approved) for personal use to be obtained (amount up to 3 months of pills), so they can send you via mail and there won't be any problem on outgoing australian custom, but as i mentioned depends on destination customs. Some countries won't allow if it's not approved by governing agency for drugs administration. Whats great with this australian route, is that all the APIs and pills are tested over there (NMR spectroscopy and HPLC) so you do not have to do it on your own. As for Egypt, you can't export it or even carry with yourself (so smuggling is the only option), for India it is allowed, but there might be a lot of fake sellers. Bangladesh generics are even higher production quality than in India, they also send via mail, but i do not know exact details of ordering directly from them.

All good Tig buddy, still laying low. Soon to hit seaside. :)

singsong · Veteran Member

Thank you Tig. People just need to know the options. That all is not lost. That checking the options - and with the links, this HCV Friends board is one of the most comprehensive.

Tig · Admin

Hi Anna,

The non profits and organizations can offer a number of programs assisting people trying to obtain treatment. They generally work with the drug manufacturers to provide the coupons, funding, or the drugs themselves. I haven't heard of them assisting with the procurement of generic medication or assistance with travel costs to obtain them. I'm not familiar with those programs set up in countries offering the generics, like India, Egypt or China. The only assistance in obtaining generics that I'm familiar with is in Australia. We have some information here on the forum and a rather comprehensive list can be found using the link in my signature line.

singsong · Veteran Member

Thank goodness for generic meds for those who are in the middle of health insurance hell. There are options. Unfortunately it can cost a few thousand dollars (cost of flight plus cost of meds). Tig do you know if the nonprofits that help with insurance deductibles and other treatment costs might be able to help here?

Tig · Admin

That's great news Fish! Over the hump and downhill from now on. That 12 week undetected VL had to be a nice morale booster for you. You know it's working and all you have to do is continue on the way you're doing it. No real side effects is another bit of nice news. People following you will be reassured knowing the ride is an easy one. Stay in touch and keep us updated. It won't be long and you'll be screeching into the station. Good luck!

Good to hear from you too Zlick! What's going on in your world? How you feeling?

Zlikster · Guru

Hi bcfish fellow G3,

wise decision. I have done the same (tho my friend brought me from Australia Sof+Dac). Meds do work. My doc included Riba too since i was only on 12w. 24w is also a smart choice, since u r F3-F4 (i was F1, so i opted for 12w).Wish u all the best!

bcfish12 · Member

Hello to all,

I'm in the middle of week 15 now all is good, making sure I do not get dehydrated. Still no side affects. Got week 12 results still no HCV detected biggrin

robertsamx · Guru

Hi Loopy,

Nice to see your starting treatment. Yes your right, type 3"s progress downward faster so it's important to start treatment asap. You will do 3 months in a snap and it will all be over. RC

Loopy Lisa · Guru

Hi fellow G3,

It seems I read a lot more progress in the fibro stage faster for us G3's and it leaves us in a bad position when decent meds are not available.

I am really keeping it all crossed for you, but it looks like it is heading in the right direction - well done.

It is so unfair that people are having to access medications in this way, but at that stage, what choice is there really?

I was just about ready to take that route when yesterday I was approved for Daclasvir and Sofosbuvir. It was a long wait, but I too will be free after 3 months hopefully.

I am keeping it crossed and good to hear you are doing great!!! :D

-- Edited by Loopy Lisa on Wednesday 25th of May 2016 08:54:25 AM

Sydhanrahan · Guru

Hi Fish,

so happy to hear you have the meds you needed.

I live in Australia and also bought my first 12 weeks through Greg Jefferies. What a hero he is.

It must have been a huge step for you to come so far, knowing no one and also worried and anxious, as we all are, pre treatment.

Hoping the rest of your journey is as productive as the first bit's been.

cheers,

Syd

bcfish12 · Member

Thank you Shadowfax, The cost of the 24 wks of Sof/Doc was $2,800us so approx. 4,000 Canadian dollars. I have been making a trade mans salary about 60,000 a year which put me at the max for the BC Medical deductible so for the peg/rib they wanted me to take was going to cost me $3,150. So if our dollar was at par with the us dollar it would of cost me more than the peg/rib.

I have a friend living in Australia so I was able stay at his place for the week I was there. Plane ticket cost me $2,200 I am fortunate that I am healthy enough to take a 15hr flight with a 3hr delay on the runway, on the return flight it was a nightmare I must say. But Australia's Gold coast is a amazing place to visit.

If our government would allow us to import personnel prescription medication like so many other countries our medical system would save a lot of money don't you think. Greed is a sickness.

Shadowfax · Guru

That is good news Fish and a route that others might consider if they are denied treatment or told to try something that is just not as effective as the current protocols. I am from Canada as well and was fortunate enough to get 12 weeks of Harvoni. Why does the govt. not want to spent the relatively small amount on these drugs compared to what they could face in the event things go wrong later because of no cure.

It was great you had the means and ability to travel so far but considering the costs of these drugs, it was a minor investment in your health. Please do keep us posted.

SF

Canuck · Guru

Hey fish,

Thnaks so much for letting us know more - I do hope you keep posting, we will be delighted to follow your progress. I agree with RC, lovely labs. And good choice, 24 weeks sof/dac for a F3/4 3a. I can only imagine the stress involved in getting yourself to treatment. Well done man! C.

bcfish12 · Member

Hello thanks guys,

I have had pre treatment blood tests and only the 4th week tests I will have blood work done at 12 weeks and then maybe not till the end of 24 weeks. I started week 9 of treatment today and no side affects.

My pre-treatment results were Gamma GT 27 AST 76 ALT 172 Viral load 318638

Yes I am not taking any chances I will be doing a full 24 weeks

It was a stressful voyage, having to trust people you have not even met is a difficult thing to do. But I now only have good things to say about the whole thing and recommend Fixhepc to everyone. I brought the whole 24weeks meds back with me the one trip.

robertsamx · Guru

Hi BcFish,

Big welcome to the forum! I hate to see it when anybody' gets to the F3 F4 stage. The sof-Daclatasvir (is) a good weapon to use on 3"s and the triple mentioned by C below is the bomb, so going for the generic drugs now is a good option. The triple won't be avaliable until mid 2017. so you will have a good back up then. You know it's harder for us 3"s with F4 scaring,so be sure to get it for 24 weeks. The lft's are really low, that's good!!

I'm glad you were able to dodge the RIBA - Peg bullet. It's tough. RC

Canuck · Guru

Hey bc fish,

A HUGE congrats. on your 4 week UND!!! And on your very pro-active measures that you decided on. Wise decision making I say in your case! I was in the same BC boat as you. As a 3a, it was looking like my BC option was 24 weeks of sof/rib. Lucky for me, I did manage to grab the tail-end of a sof/vel/vox trail here which I pursued hard. Plan B for me would have been to do like you did, generic sof/dac. Really, a shame in Canada/BC, that it is still a lot of work to get cured here, without choices in drugs.

A lot of work and effort you went through. I am happy for you and your result. Good for you to take charge of your treatment choice.

Glad to hear your story. Tell us more please if you have the time - details, such as - were you on a 12 week course? You were UND at 4 weeks, so I assume you have your 12 week UND now too, or will soon? How many sets of VL's and bloods did you get in BC during your treatment, and how many will you get for follow-up of your treatment? smile C.

JimmyK · Guru

Happy for your UND.

This Forum uses the following folder for such information.

http://hepcfriends.activeboard.com/t62115233/links-to-hep-c-related-web-sites/

Regards

JimmyK

bcfish12 · Member

Hi there, I have geno 3a and I am cerotic F3-F4. Started treatment Mar 28, 2016 with Sof&Dac Generic through Fixhepc. 4 week blood test results Gamma GT 15 ALt 19 AST 20 VIRAL Load Undetected biggrin The trip to Australia was well worth it. I am from Canada Health Canada wanted me to go through the not recommended peginterferon/Rib. Which my doctor told me was 85% success rate. He was lying may be 50%. Fixhepc and Greg Jefferys are doing great things for the world and should be applauded at the least. Call Fixhepc and take charge of your health.

-- Edited by bcfish12 on Tuesday 24th of May 2016 04:19:36 PM

Hep C Discussion Forum

Legal Disclaimer: