But getting 24 weeks worth…?

This topic has 5 replies, 5 voices, and was last updated 8 years, 6 months ago by hepCat.

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30 April 2016 at 12:37 pm #16427
hepCat
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- Replies: 4
- Total: 7
- Novice
@hepcat
After getting my dx of active virus present, I started reading everything about treatment. I thought I had this all figured out – mostly, anyway – thanks to the amazingly helpful experiences and information posted here and on Greg Jefferys’ blog. Lots of options to obtain the meds. I’ve always wanted to go to India, not exactly under these circumstances, and though I’ve been to New Zealand I wasn’t able to get to Australia so that was attractive too. And importing/shipping the meds still seemed viable. Options. Little bits of risk, maybe some hassle, but all completely doable.

Then I got my genotype results. 3a.

And now everything seems complicated again.

From what I have read, the best odds for the best results with GT3 is the sof + dac, no Riba, for 24 weeks. Which is fine. But how do I finagle that when I’m restricted to a 3 month/12 weeks supply for meds either imported or carried back with me?

It seems the easy answer is that I have to go through the process of procuring the meds twice. Which, again, is fine. Do what you gotta do, right? But the specter of TPP making all this infinitely more difficult if not downright impossible at a moments notice has the red flags flying.

I have ideas but I’m not sure they’re workable, let alone sane. Like: sign up for the Redemption-2 and (assuming it’s still open and I’m accepted) while the meds are in transit hop on a plane to India to secure the other 3 months worth to bring back to the U.S. with me. Or, can I do the Redemption-2 twice – either simultaneously or consecutively? Or…???

I’d hoped to spend my treatment time popping pills, feeling good, braving sx, and swatting away fears the drugs wouldn’t work, rather than worrying about failure because I might not be able to complete the necessary tx.

Any thoughts on this that would help me straighten out my head would be greatly appreciated.

GT 3a, tx naive, dx 4/12/16
4/12/16 V/L 824,000
2/03/16 AST 119 ALT 239 platelets 109
4/12/16 AST 87 ALT 164 platelets 118 (different lab)
5/5/16 FibroScan 8.9 kPa F2
5/16/16 AST 86 ALT 157
5/16/16 Fibrotest 0.6 F3 Actitest 0.79
5/31/16 VL 14,413,000 (uh… YIKES)
Y93H @ baseline
6/20/16 Started Redemption 2 Sof + Dac
7/516 QUANT VL: NOT DETECTED
7/5/16 AST 34 ALT 60 Platelets 128 (diff lab though)

12/06/16 EOT VL UNDETECTED
1/03/17 EOT+4 VL 12,222,000
no new RAVs; IL28B = CC
30 April 2016 at 1:18 pm #16431
Gaj
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- Guardian Angel
@gaj
Hi hepCat and welcome,

Just as a quick summary for now. Assuming you do need a full 24 weeks treatment for now then you can participate in Redemption trials, which are still open, once as a 24 week patient. For the purposes of import you would need a 12 week script with one repeat. So you import the initial 12 weeks medication then use the repeat for the second 12 weeks. I’m not totally familiar with the US import requirements but know that for myself in Australia last year, although I was only able to import 12 weeks at a time, I didn’t need to wait until the first batch ran out to get the second batch. No doubt one of our US members can provide further input.

If you are keen on the Redemption trial then your best move is to make contact with help@fixhepc.com and ask their advice.

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
30 April 2016 at 4:11 pm #16436
mgalbrai
- Topics: 28
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- Total: 1,326
- Guardian Angel
@mgalbrai
Hi HepCat,
Gaj is right. REDEMTPTION-12 weeks with a refill. There won’t be a problem at Customs. They might call and ask for a copy of your prescription, but I doubt it.
There are two other very good options: Mesochem and Incepta.
Each option has its advantages: Price, delivery time, convenience.
Good Luck!
Pretty soon you will be HepfreeCat!

Curehcvnow@gmail.com
http://forums.delphiforums.com/generichcvtx

G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
30 April 2016 at 5:31 pm #16440
Defeat10
- Topics: 2
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- Total: 13
- Acolyte
@defeat10
Hep Cat,
I joined Redemption 3, first though I scheduled an appt. with a GP2U Dr. I did this because I wanted to explore all tx options. The I scheduled an appt. with Monkmed Dr. Between the 2 we came up with a treatment plan of 24 weeks. You will need to scan all current lab results. Monkmed will walk you through the rest,they a great.It took 4 weeks from the initiation by me until my package arrive(that was with a week delay of shipment) Monkmed is very careful and want your meds to arrive without a glitch.Just get going!

G1a
Fibrosure F3
VL 6.6mil
Alt151 Ast111
All labs/Nov 2015
May 5th tx started Hepcvir L. Redemption 2 trial
May 19 2 week labs VL 27, Alt 25 Ast 24
30 April 2016 at 10:17 pm #16455
MtGoat
- Topics: 5
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- Recovery Champion
@mtgoat
Hi HepCat,
My story is under patient stories “US/AUS Fix”. I’m 3a. GP2U will give you a script for two 12 week supplies. I simply sent the script by email to Kingswood Pharm in Australia & they shipped 12 weeks worth right away. Actually, I had to follow up with a phone call & they are very nice to talk to. Anyway, I could have filled the second batch anytime. (Who would know what the timeline was? I don’t think anyone is paying that much attention).
I was only planning to do 12 weeks. Made a last minute decision to go a few weeks longer so, simply called Kingswood and they filled it. The script was already on file. I’m sure redemption would be just as streamlined. The reason I chose the KW route was I was anxious to get started & at the time, the thought of making one phone call to make it happen was very alluring to me. When I did fill the second round, I only wanted to add 6 weeks to the original 12, and KW was kind enough to accommodate that with the appropriate price reduction. Some others on here have gone the KW route too & seem to be doing well.

Cheers
3a for 35 years
Dx 1996, tx naive, ALT 46 AST 38 VL 140K
Started Sof/Dac 1/23/16
Kingswood generics AUS
2/19/16 4wk lab HCV Undetected ALT 14 AST 19
EOT 6/1/2016
TX was 18 wks (w/some 1/2 doses & 1 skip dose after 11 wks
while waiting for +6 wks to arrive)
SVR4 6/30/16
SVR12
SVR24 Redeemed
1 May 2016 at 1:11 pm #16473
hepCat
- Topics: 3
- Replies: 4
- Total: 7
- Novice
@hepcat
Thanks to everyone for the replies. They really helped soothe my troubled mind.

Gaj –

Thanks for the rundown and the welcome. I am assuming 24 weeks simply because of (a) being GT 3 and (b) my AST, ALT and platelets plugged into the SVR calculator on this site says F4 with 24 wks on sof/dac.

I have yet to get a Fibroscan. My appointment with the specialist isn’t for another two weeks though I do call the office every day to check for cancellations that will get me in sooner. No luck so far but I asked if, since I was pretty sure I needed/wanted a Fibroscan and/or ultrasound if that would be done in their location or if I’d be referred somewhere else and was told it would be another location, which means making another appointment, which means more waiting. I’m not feeling terrible patient with all this. I actually called another clinic to ask about the wait for a Fibroscan and was told I could get in within a few days. I took the weekend to consider it but I’ve decided to do it already. Hopefully the specialist won’t be too sore when I hand him the results.

Thanks for the link to get advice for the Redemption trials.

mgalbrai –

I’ve read so many of your posts very carefully. Definitely helped me make the decision to pursue generics.

Much appreciation and a deep bow of respect for your considerable efforts to get information about treatment options to others.

Defeat10 –

I’m leaning towards the Redemption option since it feels like it offers the best chance of success even if something happens to complicate access (e.g. TPP). It is reassuring to read of your success with this route.

MtGoat –

Actually, I have read your story already. I went to make an appointment on GP2U but couldn’t find any for Dr. Freeman and it wasn’t clear who else would be appropriate to schedule with. Then mgalbrai posted the TPP warning and I got concerned about access beyond the first 12 weeks. Prior to that, you’re path was pretty much on the top of my list. It still might be if I have reasonable certainty that the second batch can be refilled without a hitch (except, I’m so anxious to start that my head keeps telling me that in less time than it takes to ship, I could hop on a plane and pick up the meds with a bottle of water in hand so I could down the first dose on the spot). Your thoughts on an early refill are intriguing. I have a friend who does that.

Thanks for your help.

GT 3a, tx naive, dx 4/12/16
4/12/16 V/L 824,000
2/03/16 AST 119 ALT 239 platelets 109
4/12/16 AST 87 ALT 164 platelets 118 (different lab)
5/5/16 FibroScan 8.9 kPa F2
5/16/16 AST 86 ALT 157
5/16/16 Fibrotest 0.6 F3 Actitest 0.79
5/31/16 VL 14,413,000 (uh… YIKES)
Y93H @ baseline
6/20/16 Started Redemption 2 Sof + Dac
7/516 QUANT VL: NOT DETECTED
7/5/16 AST 34 ALT 60 Platelets 128 (diff lab though)

12/06/16 EOT VL UNDETECTED
1/03/17 EOT+4 VL 12,222,000
no new RAVs; IL28B = CC
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