emo Any help for US citizens?

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6 years 7 months ago #2643

Genotype 1a, 1.6 million viral load. F0 metavair/fibrosure score. Prescribed Harvoni, insurance won't cover it. That's not exactly the whole story. I was diagnosed 10 years ago and I have been living in fear ever since. I have, or rather had, a hands on job that caused me to cut my hands several times a day. Racked with anxiety and fear that I am infecting others. Became a shut in and cut all ties to friends and family. Haven't been intimate with anyone in over 10 years. I definitely think I am better dead so at least loved ones will stop worrying. I can't bear it any longer. November of last year I thought I was getting Harvoni, but insurance denied it. I was told by my doctor that they would assist me in obtaining the meds and they had a 90% success rate in bargaining with the drug companies. Started planning my life on the outside. After the second denial it was apparent I wasn't going to get them.

Today I was told I should accept I probably won't get Harvoni, ever. My doctor put the idea in my head that a new treatment is coming out, and maybe I will get that. I can't go through this again. I have some funds, and can borrow some more from family.

I want to live, but I don't see the point. With all due respect, I don't need kind words, I need a blueprint. Instructions to follow. I will go to India, Bangladesh or anywhere. Looking at trips to Australia but I don't think I can afford it. P,ease help. Thank you.

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6 years 7 months ago #2648

Henry, people are flying to Dhaka and buying Twinvir (generic Harvoni) from Incepta. Some Americans on here have imported/carried back their cures. Please see US Importation legal or not.
It's all on here and at Greg Jefferys' site at hepatitisctreatment.homestead.com/index.html
Once you commit to treating yourself, I think you will work it out.


M, 57, Live in Wellington,NZ.
Genotype 1a diagnosed in 2013.
Treating for the first time since October 31 with Buyers Club Sof/Led. Thanks so much guys. Minimal side effects apart from sore throat at the start..
Viral load 5.4m when treatment started, Undetected at 4 weeks, 8 weeks, End of Treatment and 12-weeks post EOT. Yay!
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6 years 7 months ago #2649

Hey Henry,

Very similar numbers to my own, except I was only diagnosed 2.5 years ago.

The anxiety and fear is normal for the situation, but understand that it's also a symptom of the disease.

First off, while there doesn't sound like a reason to panic, there's also is no good reason to wait. Take action NOW! Get your life back.

Let's start at the beginning.
You've had your blood work done, you know your genotype and viral load and you've got your fibroscan score so you need no further testing. Your doctor has already written a prescription for Harvoni.

So, first question. Will he write you the prescription for generic meds and oversee treatment (basically just order your bloodtests)? If he will you're almost there. Either just order the drugs from Mesochem directly or contact Greg Jefferys to go through his channels to get Twinvir.

I'd personaly go the Mesochem route as it will be faster and I'm not sure Greg's channels from Bangladesh are fully in place yet. He can also help you with the Mesochem products, but there's probably no need and he's overwhelmed at this point anyway. Dr. Freeman has been testing every shipment of the Mesochem product and there has never been a problem. Just order them and get on with it.

The Mesochem meds are in API form (powder) which you'll need to put in capsules. Don't worry about the difficulty, hundreds of people are doing it and there are instructions for doing it in this forum as well as on youtube and many other places online.

You'll want to order 84 days of:
Sofosbuvir at 400mg/day (400x84=33600mg) ... order 34 grams (or maybe a little extra) ~$1000US
Ledipasvir at 90mg/day (90x84=7560mg) ... order 8 grams (or maybe a little more) ~$950US

OR ... if your doctor will agree, you can get the better drug (my non-professional opinion) and save money by getting Daclatisvir instead of Ledipasvir.

Daclatisvir at 60mg/day (60x84=5040mg) order 5.5 grams ~$250US

(So either Sof 400mg/day and Led 90mg/day OR Sof 400mg/day and Dac 60mg/day)

You'll want blood work done somewhere between the fourth and the sixth week by which time your viral load will likely be "undetected," and then again at end of treatment, and then again at either 12 or 24 weeks after end of treatment.
_________________________________
However .... if your doctor will not write the prescription or oversee treatment there will be a few more steps or decisions to work through.

Let us know on that score and if you need the other steps we'll walk you through them.
If you're ready to order we'll walk you through that too. Check out Mike's thread ... he just did it a few weeks ago and has already helped another person do it so he can give you all the details to get it done.

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6 years 7 months ago #2650

I have everything and I already have the prescription. Pretty sure my doc will do anything I ask of him. The miscommunication of me being told I was going to get the meds was from another department at his hospital, not from my actual liver doctor. I will check out Mike's thread and I'm sure I will need help. If my understanding is correct, do I simply email Mesochem and order the appropriate amount and it is shipped to the US? You don't have to answer that, I'm really confused what is allowed and what isn't.

Thank you.

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6 years 7 months ago #2656

Start by reading the thread "Hopeful in the US"

Find it in the "Patient Stories" section.

You'll find Mike posting with the name "mgalbrai"
_______________________________________
That's
Click the Index Tab
Click on Patient Stories
Find topic "Hopeful in the US
_______________________________________

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6 years 7 months ago #2697

I emailed sales@mesochem last night and have yet to get a response. I emailed Gregg this morning. I will be ready to go with payment in 2 days, maybe 3. I have my prescription, my two denial letters from insurance, fibrosure tests(not the fibroscan, awaiting response from my doc) genotype testing(1a), viral load tests, full metabolic panels, cat scan and ultrasound tests and I have the support of my doctor.

Am I being too greedy or do I need to wait longer for responses? I am in the US, and I stated as much in my emails. Do I need to not mention my location? Really afraid things will change on the 15th so I want to get the ball rolling.

Any direction is appreciated.

ps-I also messaged mike about mesochem

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6 years 7 months ago #2698

hi Henry,
I think there is no need to panic. Both Rachel & Greg always respond within 24-48 hours, at leasts they did when I contacted them in the past couple of weeks, they never ignored any of my emails.
If you're based in the US I assume there could be a significant time difference between China, Australia & where you're located in US ?

have a look at the world time calculator here:
www.timeanddate.com/worldclock/converter.html

Yes, do give it a bit more time,
what is changing on the 15th ??

Hope this helps,
jolie xxxx


Geno 3, Fibro 8.7 pKA, tx experinced in 2005 - Peg/Riba, relapsed.
Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
5 weeks result all normal, ALT 18 - down from ALT 73 at the start of tx.
5 weeks HCV PCR RNA - UND. - down from 2 ML
9 weeks HCV PCR RNA - UND.

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6 years 7 months ago #2699

you might be more successful emailing Rachel directly, this is what I did & got her response very quickly:

This email address is being protected from spambots. You need JavaScript enabled to view it.


Geno 3, Fibro 8.7 pKA, tx experinced in 2005 - Peg/Riba, relapsed.
Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
5 weeks result all normal, ALT 18 - down from ALT 73 at the start of tx.
5 weeks HCV PCR RNA - UND. - down from 2 ML
9 weeks HCV PCR RNA - UND.
Last Edit: 6 years 7 months ago by Jolie.
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6 years 7 months ago #2701

First, remember the time zone differences. I don't know where you are in the US but here's this ... (Rachel is in Beijing and Greg is in Tasmania)
www.timeanddate.com/worldclock/

I don't know if Rachel works alone or has a staff, but she is certain to have a large work load. As for Greg's response times, I've seen them run from a couple hours to a couple days. Remember this is not his job, he's doing this out of his home on his own personal time with no financial benefit. And he's being swamped with people's requests for help.

In your emails to Rachel you want to keep it as simple as possible and not put information that is unnecessary or could get you rejected. Technically she's only supposed to be shipping to other drug manufacturers and to researchers. Make her life easier by not saying anything that implies you're not one of those. Another form of don't ask, don't tell.

In your first email simply state you would like a price quote for X amount of drug A and Y amount of drug B shipped to location Z.
Likely she'll just send a price quote. You then send a message saying you want them and ask for payment method details. She may ask various questions ... answer them but don't go into any extra detail beyond the shortest, simplest answer. Make it easy for her to do this.

Edit: Funny, Jolie and I must think alike.

Last Edit: 6 years 7 months ago by klhilde.
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6 years 7 months ago #2702

1. Email Rachel at: This email address is being protected from spambots. You need JavaScript enabled to view it.
2. Tell her you are a researcher with a university in your home state
3. Put the university name on the line below your name and above your home address
4. Wire the money to the Mesochem bank account Rachel will furnish
6. Be at home 5 days later to sign for your package
7. Make sure to put the US international code in front of your area code
8. Order AWS digital mg scales from ebay-$20
9. Order "00" profunnel from www.torpac.com


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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
Last Edit: 6 years 7 months ago by mgalbrai. Reason: typo
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6 years 7 months ago #2703

5. Sit and quietly contemplate all of the awesome things you'll be able to do with your life when you've rid yourself of this disease.
:woohoo:

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6 years 7 months ago #2704

Address example

Henry H. Sufferer, RLC
Utah University Research Group
your home address
phone number

Rachel will value the package very low.

set up and weigh out 28 caps of sofosbuvir. just make sure to get the weight between 400-405 mg. Put them in a labelled empty vitamin bottle with a desiccant pack

do the same for the 90-95 mg ledipasvir

Took me about 3 hours total.

Take one of each each day at the exact same time
Mike


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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
Last Edit: 6 years 7 months ago by mgalbrai. Reason: addition
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6 years 7 months ago #2713

From an earlier post for Henry

On Compounding...
(I seem to be on a roll here)
Go to: torpac.com and find the profunnel. You will need the 00 size. $75.00 and includes 1000 capsules. 400 mg of sofosbuvir, packed with the included tamper, fits perfectly in the half of the cap you fill. Buy a mg scale from AWS on Amazon-$20. It has to have three 000 after the decimal to measure mgs. Then, one of those straws you get at the Sonic with a little spoon at the end.
Set up and weigh out and fill 28 caps with sof. Put them in a labeled bottle with a small silica dessicant pack. Do the same for the led or dac. Nothing tricky, take your time. Zero out (tare) the scales once in a while and get the weight within 5 mg on the plus side. These are amazing scales for $20. I have reweighed several caps (empty weight 116-8 mg) and they are always right on the money. Keep everything in as dry and cool a place as possible and store all your stuff with some dessicant packs-again:Amazon-large bag of small packets-$12)
Do your weighing on a smooth, clean dry surface to help salvage any shaky hand spillage. 2 hours for me to do 28 caps. I smiled the whole time!
Cool and dry place-the led is "clingy" in high humidity.
It is really easy, but I was daunted at first by the thought of making my own doses.
Simple answer-don't
Mike


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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
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6 years 7 months ago #2723

This post and other "how to do it" posts like it should be put in stickies at the top of the forum with comments locked off.


Huon Valley, Tasmania
Hep C+ since 1980s
Genotype 1b
F3/4
VL 480,000
Started Indian Sof and Riba, BMS Dac (comp access) 28 August 2015
UND at 4 weeks
Finished treatment 19 November 2015
12 February 2016 UND SVR12
The following user(s) said Thank You: Joy, mgalbrai

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6 years 7 months ago #2735

From what I understand the 15th is the date some rules for generics may change. Perhaps I'm wrong.

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