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Congratulations on UND JimmyK! Proud for you brother!
Those test results are fantastic news, Ariel! So happy for you mermaid!!!
Go yew!
I feel another happy dance coming on. Congratulations Momo!
Non-allegorically speaking, for me at least it looks like the generic DAAs (Sofosbuvir/Ledispavir) from Mylan India, through Monkmed and the REDEMPTION 3 Trials are killing the snot out of HCV without the apparent necessity of another ‘magic bullet’, or 3rd antiviral agent.
Thanks for the well wishes RHF. Right back at you brother!
”James-Freeman-facebook” wrote:Hi Fitz,
Thanks for the I am my own trial info!
Hi Bob,
The HCV replicons take 6 weeks to break down so for anything to have use you need 6 weeks (ish). Monotherapy with anything like DAAs is a bad idea. For chlorocyclizine it probably won’t hurt because it is host based but it is unlikely to be effective.
The “I am my own trial period” has come to a conclusion.
After receiving an 8 week UND result I decided to continue with DAAs only. Had the 8 week result been other than UND, my plan was to continue Chlorcyclizine, and possibly extend DAA therapy as well.
However, the response to DAAs alone has been excellent, and at this point I see no reason to mess with a good thing. So, will continue until EOT with DAA therapy only. If it turns out I need to re-treat I will consider going back on Chlorcyclizine at that time, but for the time being – I’m done.
Fantastic news FHN & JamesF! Happy dance time!!!
Considering that is roughly the price for an entire 12 week course of Sof/Vel (Sofosvel) that’s a tough choice. 12 weeks of medication or a test which may or may not inform ones choice as to which medication to use.
Perhaps this is a simplistic suggestion, or a course of action you have already taken…. If I were in your shoes, I’d be booking an appointment with Dr James to help sort out the dilemma.
Whatever your decision, you now have options and good ones Splitdog.
Thanks Sven, Beaches, RHF, London Girl, Pat1, Ariel, Meg, and all of my friends here for the tremendous supportt and heartfelt well wishes along the way to UND! Also, to Dr. Freeman of GP2U Telehealth, Dr. Debasis of Monkmed, and my physicians here in the US who stuck their necks out, and cared deeply enough to follow my treatment and order tests (you know who you are, and you are the best!)
I know ‘Undetected’ is not the endgame, but it is a very, very important milestone on the way to ‘Cured’. After decades living with the knowledge that HVC was silently and insidiously at work inside my body, UND feels nothing short of MARVELOUS!!!!
OK, promised I would update this thread with my personal experiences. So here goes.
Chlorcyclizine is stinky. When I removed the first pill from the blister pack the smell was sort of surprising.
Started clorcyclizine mid last week in addition to ongoing DAA treatment. This was around the time I had blood drawn for 8 week labs.
The starting dose was one 25mg tab at 8 hour intervals during the day, and a nightime dose of 50mg for a total of 100mg (or 2/3 of the trial dosage referenced in previous posts).
By Sunday I had cycled up to 150mg per day. This IS a big 24hr dose. By late afternoon I realized there was so much of the stuff in my system I could actually taste it (tastes like it smells), and decided to immediately scale back. Aside from the taste, the sedative effect was also noticeable. Was still fully functional, but glad I chose a weekend to try the 150mg dose. My personal impression is that the 150mg dose was too much.
So Sunday night, scaled back the nighly 75mg dose to 50mg, and broke a 25mg tab in half for the 8:00 AM, and 4:00 PM doses (12.5mg each).
Its Tues. and the 50mg dose at night and two 12.5mg doses during the day seem to work well for me. The nightly dose seems to help a little with sleep, and the two 12.5mg doses during the day are theoretically large enough to maintain decent serum levels, but don’t seem to have the sedative effects of the larger doses.
The math for my dosing works out like this. 8:00AM 12.5mg + 4:00PM 12.5mg + 10:00 PM 50mg = 75mg per 24 hour period. So overall – the same maximum recommended dose (75mg per 24 hour period) as hay fever.
Right now I am planning to continue at this dose until 2 weeks past Sofosbuvir/Ledispavir DAA EOT. So EOT + 2 Weeks. Might stay on another couple of weeks (or longer) past that. Just haven’t decided yet.
NOT recommending this to ANYONE. Simply reporting my own experience.
Just got a call with the 8 week viral load results (blood drawn 5 days ago). UNDETECTED!
YESSSS!!!
Will post lab results when I get the hard copy.
Welcome to the forum Whaemmel!
We’ve got a couple of other guys from the Pacific Northwest here as well. I’m sure Sven and Matt will be along to introduce themselves when they see your post.
Look forward to hearing more from you!
Fitz
Candicealex29 wrote:I want to be a part of this trial. I can’t get the medication to cure my hep c bra cause I don’t have thousands of dollars and my insurance won’t pay for it until there is liver damage, but I am extremely sick and have a low viral load (which doubles every other month) it is now over 10,000 and rising. I just want this to be over and to not have liver damage (if I don’t already). I can sleep for days and sometimes do, I hate it! The pain is extreme and debilitating. I have 3 children to take care of and at times it is impossible. I took being healthy for granted, you don’t know what you’ve got until it’s gone. Please help! My gene type is 1a or 1b.
Hi Candice. So sorry to hear that HCV is affecting your life in such a dramatic way. Many of us here can relate very well, and have been in your shoes.
You can find information on the REDEMPTION Trials here: http://fixhepc.com/redemption-imagine-freedom-from-hepatitis-c
I can’t tell you how to proceed, but will tell you what I did.
1) I got my lab results together and made an appointment with GP2U Telehealth: https://gp2u.com.au/
2) I made an appointment with monkmed.com, and got signed up for the REDEMPTION Trial.
3) I paid for my medication ($1,600 altogether), and received my medication by US mail from India less than 3 weeks later.
Tuesday will be my 9th week of treatment with MYHEP LIVR (Sofosbuvir 400mg/Ledispavir 90mg). In the first six weeks my viral load has gone from over five million, to non-quantifiable.
Welcome to the forum
Fitz
Good luck, Fred and Bob. Good vibes going your way!
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