Home › Forums › Main Forum › Media & News › Another lost 2B soul on US forum told to WAIT!
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10 December 2015 at 8:23 am #5782
Just checked on that stupid hepcentral delphi forum Near top of general discussion queue is a woman who is 2B asking if there is anything new for GT 2s without ribavirin.
she was advised to WAIT WAIT WAIT, was told the FDA hasnt approved sofos and daclatasvir for her GT yet (true) , but maybe in march something new might come out and might be approved, something even BETTER, i.e, that GILEADS VELPATASVIR might be out in March and maybe she can get it cause maybe it might get approved in March, so just WAIT!
I can’t advise her, theyve banned me from posting due to mention of generics, I tried, and post won’t go through, I tried a PM, but I think they are intercepting those too….the post talks about Gilead’s trial w velpatasvir and all, very ‘promotional’ it seemed.
GT 2b; since 80’s, no prior tx, sofosbuvir and daclatasvir compounded from API’s at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. I feel GOOD!! I knew that I WOULD!””
10 December 2015 at 3:14 pm #5811I’ve never registered there. Send me the link 2b and I’ll go over and PM her. Do you think they might have some sort of keyword filter on their PM system? If so, I’ll have to think of a work around.
They’re total Gilead sucks that lot. And a bunch of fascist pig dogs to boot with their censorship policies.
10 December 2015 at 6:50 pm #5825or if you type in hepcentral delphi it will take you to link on google.
There was a string on api generics too a few people got some stuff in, then most of it got deleted,
I put a post on that i was undetectable at 4 weeks from generics….deleted totally,old ratbag
GT 2b; since 80’s, no prior tx, sofosbuvir and daclatasvir compounded from API’s at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. I feel GOOD!! I knew that I WOULD!””
10 December 2015 at 11:21 pm #5843Hi,
I took a quick look at the delphi site… It seems to have been going for a long time. I suppose the moderator you are talking about is “Joy to You”? She has been a member since 1999, and is obviously quite used to waiting for a long time. About 60 000 out of the 360 000 posts are from her. So it very much looks like she is running a little kingdom of waiters.
But unless I am mistaken it is not a high volume site, with only a handful of visits / posts per day? And mostly it seems to be a place to swap kind messages of hope and support. Let’s not forget that some people need that kind of thing. So I would recommend we should not be too critical of this site. Let’s just hope that anyone who lands there has the good sense to keep moving if they are looking for real information or how to get a treatment.
I suspect that many more people are visiting sites like http://www.hepchope.com/ which is an official on-line marketing arm of Gilead (https://whois.icann.org/en/lookup?name=www.hepchope.com).
The above site clearly belongs to Gilead…. What bothers me more are certain “Hep-C information” web sits that give some kind of “LLC” as owner. So clearly they are commercial sites, but who is paying for them?
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable). Week12 (EOT): AST 30, ALT 26, VL UND Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND Ever grateful to Dr James. Relapsed somewhere after all that... Bummer! Jan 2018: VL 63 000 (still GT3).11 December 2015 at 1:03 am #5848I agree, let them rest in peace, the person who was asking for info, who i tried to provide information to, decided to “wait and pray” and wanted no part of those bad “illegal drugs”, as advised by the moderator.
Way back when I first looked at that site, which even began in another form before 99, it had more useful information at the time. It is what it is now, I will not be looking at it anymore, may they “wait” in peace.
GT 2b; since 80’s, no prior tx, sofosbuvir and daclatasvir compounded from API’s at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. I feel GOOD!! I knew that I WOULD!””
11 December 2015 at 2:38 am #5864Thanks Vororo,
That whois.icann link is very handy. Didn’t know it before.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
11 December 2015 at 3:10 am #5867You’re welcome. There are several “whois” services. Just type “whois” in Google (without the quotes).
Its always a good idea to check out a web site with one of these services before sending any money to an on-line retailer or posting anything personal. But its not foolproof. Quite a few on-line retailers hide behind an anonymous hosting service and all you will see is something like nobody@nowhere.com. Still ICANN (https://whois.icann.org/) is the central registry of all internet domain names.
Any legitimate company or organisation should have nothing to hide, and its whois record should show a real postal address and contact name.
A good example is https://whois.icann.org/en/lookup?name=fixhepc.com
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable). Week12 (EOT): AST 30, ALT 26, VL UND Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND Ever grateful to Dr James. Relapsed somewhere after all that... Bummer! Jan 2018: VL 63 000 (still GT3).20 December 2015 at 9:13 am #6792Hi 2b, I think you are talking about me. Although I know I didn’t say I would wait and pray. I am newly diagnosed about 2.5months ago and have only recently seen my gastro dr. Were you 2bDAD? I was wondering why I didn’t see you on the forum anymore cuz I wanted to talk with you since we are both 2b. Have’ been back there since I found this site. So it is good to meet you and any words of wisdom you can give me would be greatly appreciated.
My story thus Far is that my labs are very normal, latest AST=24 ALT=18. My VL=214,070 so low.i had a liver u/s and cryoglobulin level done this week and waiting for those results. Basically I told the gastr doc I would prefer not to take riboviran and wanted to try the sof/dac combo and he was fine with trying to get my insurance to cover that. But in the real world you know and I know my insurance is never going to approve that esp with such normal labs and low VL. Gastr doc says it will take about 4weeks after he submits all my results before hearing back from insurance. So in the mean time I am here trying to get as much info on this option, all advise and info greatly appreciated. Thanks for listening…CC
GT2b diagnosed 10/2015
since: unknown
11/20/15 VL= 214,070
12/4/15 ALT=18 AST= 24
1/16/16 started sof/dac
2/13/16 @4wks VL=UND ALT=13 AST=22
3/12/16 @8wks VL=UND ALT=10 AST=18
4/9/16 EOT VL=UND ALT=11 AST=19
9/23/16 SVR24 ALT=11 AST=2220 December 2015 at 11:02 am #6806Hi cc2b, yeah 2b is (was!) 2bdad. Trying PMing him to get his attention in case he misses your post. Also mgalbrai and klhilde (and others) are other US citizens who have got the meds and can give you the low down. Or indeed any of the mods.
You can Pm from the private chat tab above or from your profile (just select the name of the person you are PMing).
20 December 2015 at 11:45 am #6810Thanks Chester, will f/u later need to take my butt to bed now
GT2b diagnosed 10/2015
since: unknown
11/20/15 VL= 214,070
12/4/15 ALT=18 AST= 24
1/16/16 started sof/dac
2/13/16 @4wks VL=UND ALT=13 AST=22
3/12/16 @8wks VL=UND ALT=10 AST=18
4/9/16 EOT VL=UND ALT=11 AST=19
9/23/16 SVR24 ALT=11 AST=2220 December 2015 at 9:16 pm #6836HI CC2b, no it was not you that said they would “wait and pray”, that was ANOTHER lost soul on there, who did take the advice to stay away from generics and said they would just wait and pray.
I tried to reply to you on that forum, but the mod won’t let any of my stuff through, I am effectively ‘banned’ for mentioning generics. I was trying to tell you on there, what you already know, that your insurance company will AT BEST, approve you for Sovaldi and ribavirin because our FDA does not recognize sovaldi and daclatasvir as an approved therapy for our genotype (although I and many others are proof that it works and the rest of the world recognizes that). Moreover, give your ‘good’ condition, its very unlikely they would even approve you at this point for the sovaldi, probably tell you to wait and get sicker.
Welcome, I replied to your pm too, there are many, many more options here now to get your meds than even just a couple months ago in October when I did it, so finding your way here is the first step, you can probably be undetected very soon now. Good luck to you.
GT 2b; since 80’s, no prior tx, sofosbuvir and daclatasvir compounded from API’s at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. I feel GOOD!! I knew that I WOULD!””
20 December 2015 at 10:59 pm #6841thanks for your response 2b. i have looked at some of the threads by mgalbral and klihide and it seems being able to have the meds shipped to the US has come to a halt, but i will follow thru and talk with them and see what my options are at this time. if need be i will take the route you did and just go to australia, been there once many years ago, great place. the main problem with that is getting time off from work in order to travel. may hit you up again for more specifics if i decide to take the same route you did.
GT2b diagnosed 10/2015
since: unknown
11/20/15 VL= 214,070
12/4/15 ALT=18 AST= 24
1/16/16 started sof/dac
2/13/16 @4wks VL=UND ALT=13 AST=22
3/12/16 @8wks VL=UND ALT=10 AST=18
4/9/16 EOT VL=UND ALT=11 AST=19
9/23/16 SVR24 ALT=11 AST=2221 December 2015 at 7:46 am #6872No, no … the only shipper we lost (or MAY have lost) is Mesochem from China. There are far, far more options now.
Check the map at MonkMed.com (check the thread) to see where they ship Indian Meds … the US is clearly on the list.
Also, check the threads for Incepta, Beacon and Julphar for contact info for trusted shippers … I suspect you can find a way to get your meds from any one of those three to shipped to the US.21 December 2015 at 8:00 am #6873i did send a couple of emails to some of the pharmacy’s you have listed and I did hear back from an Adam Kennedy from Kingwood Compounding Pharm. Are you familiar with this person? He told me all I needed was a prescription and gave me prices and also told me it would be $40 for shipping to the US. I did send email to parvez and Incepta I am pretty sure, getting into that brain fog right about now. Anyway I will check out the others you have provided and try and figure it all out and will probably have more questions…. Thanks very much…CC
GT2b diagnosed 10/2015
since: unknown
11/20/15 VL= 214,070
12/4/15 ALT=18 AST= 24
1/16/16 started sof/dac
2/13/16 @4wks VL=UND ALT=13 AST=22
3/12/16 @8wks VL=UND ALT=10 AST=18
4/9/16 EOT VL=UND ALT=11 AST=19
9/23/16 SVR24 ALT=11 AST=2221 December 2015 at 9:14 pm #6983hi cc, both kevin (klhilde) and I bought our medicine in person from Adam at Kwood pharmacy, I know others have too, just can’t think of them all off the top of my head. He’s a good guy, no problems there, I paid for my medicines ahead of time while still in the US and when I got there, just drove up, walked in and picked them up. I did not know he was able to ship though, as Klhilde said, there are many more options now some may be more suited to shipping, I’m not familiar with the Monkmed folks but have read good things with respect to them too.
Let us know how you do, there will likely be hundreds (thousands?) following in your path.
GT 2b; since 80’s, no prior tx, sofosbuvir and daclatasvir compounded from API’s at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. I feel GOOD!! I knew that I WOULD!””
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