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Searched for: treatment
15 Nov 2015 09:13
Guys - there is a little technical hitch that you need to think about.

When you start tx, your doctor will almost certainly take your baseline viral load and bloods. If you have already started on the generics (unbeknown to him) then you are going to have a bit of explaining to do when you come up UND before you even start his factory drugs. Worse case scenario, that anomaly could result is his withdrawing his treatment. I mean why would a doc treat somebody for Hepc who doesn't have hepC, let alone spend a fortune doing it? This would be especially unfortunate for you if you need his 12 weeks of drugs to supplement the 12 weeks of generics you have already gone out and bought. Plus, you want the medical supervision from him, at least at first.

So it's tricky. Good luck, however you decide to deal with it.
dt
15 Nov 2015 08:45
What stories guys I don't think I would cope well having to wait until my claim for life saving treatment was approved or denied. As for the question posed I know what I would do but wouldn't advise anyone else to do same.
15 Nov 2015 05:37
Thanks DT,
That's about what I thought. A roll of the dice. But at least we GET to roll the dice. So, I'm 62. In good shape and never been treated. I think I will go for 12 unless something weird happens with my four weeks labs.
Thanks for the input. It really helps when you can talk to someone who understands,
Until the next time,
Mike
15 Nov 2015 05:20
Mike,

Only 12 weeks and 24 weeks have been tested so we are into the realms of speculation here.
If the chances are linear with time then your conclusion would be correct, but is that so? I don't know. How long past 12 weeks does it take to eliminate the last group of resistant mutations capable of rebounding back into full HCV infection, if they are indeed still present at 12 weeks? There are different kinds of variants with different fitness levels, so which kind are still present and needing to be knocked off? Some kinds might go in another 4 weeks, some kinds might take longer. How long is a piece of string? In the 24 week tests we don't know if the last virions standing were still standing right up until the day before the 24 weeks were up, we just know that they were no longer infectious after week 24.

Wish I could give you more of the certainty you are looking for but I can only add that this virus is a tricky m.fucker and the one thing there's not a lot of in its treatment is certainty. Not yet anyway. For this reason I am doing 24 weeks rather than the 12 recommended for my circumstances. Even then, I won't be sure until I get my SVR24, so you are talking to the completely wrong person for an assurance that less than 24 should be fine. That's a roll of the dice I'm afraid.

So you can do the 12 weeks and take the 95% and see what happens, then retreat if you are unlucky. That is a valid option. Depends on how that fits into your life. For me I'm 65 with 2 failed treatments behind me. I really need to finish it this time, whatever it takes.

My very best
dt
15 Nov 2015 01:59
Wow, quite a story. I could almost be the mum. Did a lot of research, got my own fibroscan done, pushed my GP for VL 15 million, genotype testing GT1a and LFTs 139 and 235, no prior treatment and got an appt. with a GI specialist , After finding out the fibroscan was F4, 20.9 kpa, I was afraid waiting the two months and who knows how long before maybe be approved for Harvoni. It seemed time to take my destiny more in my own hands. This forum, emailing with Greg, Emilio, an online appt with Dr. Freeman have helped me decide. I have ordered APIs from Mesochem and they should be here within 10 days. Now my appt with the Liver doc is the 23rd of this month. So, I might have the generics and perhaps a script for factory Harvoni. Since I have been advised I need 24 weeks of treatment, and I think the docs here are only going for 12 weeks I might just do both. Next decision is if the generics come quickly, do I start right then or wait a bit so the GI thinks I'm taking his drugs and will be monitored. I feel blessed at least I should have some options on treatment. Thank you all who have spoke with me and helped sort this out, I feel confident I have a fighting chance to live a much healthier life. :)
14 Nov 2015 23:50
Hi Doc,
I have another Mum question.
Your mum is sick, diagnosed 18 months ago with HCV. She was shocked when she heard the doc's words. So shocked, in fact, her first words were "Is this a death sentence?" After being reassured she wasn't knocking on death's door, the lovable old gal gets a referral to see the clinic GI. Well, he doesn't know much about HCV, he's mostly a "tube pusher", sticking them in from both ends. Well, he tells old mum she is very lucky, some brand spanking new drugs have just come out, both are FDA approved, but not as a combined treatment. He tells mum how well they work and how lucky she is because, she's not that sick and the old treatments were expensive, long, hard to impossible to endure, and, for the most part, ineffective. So he prescribes Sovaldi & Olysio "off label" and tells mum, by the way, these are pretty expensive and your insurance may not cover them. Well, mum being mum, she has saved her pennies, has a fairly comfortable pension from working hard all her life and has "good" insurance. So she's not too worried, UNTIL the doctor says "I'm talking $1800 a pill expensive". When mum wakes up, she is in shock, but decides to get the script. She is not surprised by the insurance company's denial, appeals it and gives up after the subsequent "final" appeal's finding: Not an FDA approved treatment. Fast forward, Harvoni is approved, mum gets her script, mum is denied, denied again on appeal, but this time, she appeals directly to the "Board", explaining all her EHMs and how she has felt sick all her adult life, but just found out the reason. Appeal denied, not F-3 or F-4. So mum, not satisfied with her "plumber" GI, gets a referral to a liver specialist at the state's flagship university medical center. They are busy, so she has to wait 7 months just to see an APN. In the meantime, she educates herself, about HCV, about the insurance system, about all relevant things concerning her plight. She also demands one more script from the plumber. The plumber has an APN now that specializes in HCV-seems HCV business is picking up. Well, the APN says mum's vl has gone from 5 million down to 1.6 million in the past year and mum can be treated with 8 weeks of Harvoni instead of 12. (Mum's been known to enjoy a glass of wine or three, but has been a teetotaller since being diagnosed. VL? Hmmmmmm) Well, script written: denied, appealed, denied, appealed to the "Board": denied. So mum writes a letter to the Board asking to see the criteria for treatment. They won't furnish it (said talk to the plumber, but he was tired of wasting his time with old mum by now and simply ignored her requests. So mum FOIs the insurance (state) for the criteria, gets it and finds a person can get treatment based on EHMs, regardless of Metavir score. She also discovers Greg Jeffreys, Dr, Freeman, fixhepc and Mesochem generics. So, the now extremely well-informed old biddy develops a plan to get well: Go to India, Go to Australia or Get the meds straight from Mesochem. She also pursues the "ultimate" and final independent external review for her Harvoni denial as is allowed under new federal law, with little hope if a reversal after all the denials. So mum decides to import the sof & led, and begins treatment. After 3 weeks, she is feeling lots better now, she gets a letter saying the independent review overturned her denial. She can get her factory Harvoni for $5 a bottle. Of course, she is going to get it, but is in a bit if a quandry: Start the real Harvoni now, wait and start after being tested at 4 weeks. Finish up the 12 week course of generic and get the next $5 bottle of real Harvoni in 4 weeks. OR just take all 20 weeks worth, finishing up the generics and then, taking the factory meds. But then, testing issues come in.
Well, mum trusts her PCP to help guide her and also her new GI, who said "I don't care where you get the medicine, I just want you to get it and let me monitor your treatment".
So, 8 weeks, 12 weeks, 20 weeks?
What would you tell your MUM?
Thanks,
Mike

ps: this is s long post snd you are a busy man. I really want to know your feelins on this, but would like to hear others as well. Been one hell of a fight. The specialty pharmacy people were amazed. They said, of the hundreds of people seeking approval from my insurance company for the new DAAs, only those on the transplant list have been approved. She also said I was the first to go all the way to the external review stage. I am F-1.
14 Nov 2015 16:33
Have been taking Sofos+Led now for 4 days and receiving Daclatasvir today I am changing to Sofos+Dac. After I made the decision and ordered Ledisavir I did more research and decided perhaps i should have chossen Daclatasvir with my acid relux problem.. Now I realise it was a big mistake for me in the first place falling for what treatment was being given where Insurance companies are funding treatment. When you take the distortion out of what is the best treatment to use caused by Gileads vested interest in Ledisavir its looking more and more like Sofos+Dacl is the smart choice.
We will know for sure in the near future as the results from Fixhepc data stacks up.
14 Nov 2015 13:36
Just a caution that the sof/dac/sim arm of this trial (reported in AASLD LB #23) comprised 6 people from the easiest group to treat and they were further selected as being in the 66.7% with the highest RVR during the initial 48 hrs of the trial. So, promising for the future!

And I do believe that we will hear a lot more about triple DAA treatments and hopefully they become the "silver bullet" for this horrible disease. The idea of fast, sides free treatment is fantastic!

OTOH as of now, extended treatment +/- Riba has been shown to improve the odds in difficult to treat cases such as those who have relapsed and particularly those with high fibrosis/cirrhosis.
Category: Q & A
14 Nov 2015 13:35
Hi jolie, that is fantastic that you have found an NHS consultant to monitor you! I hope you don't mind me asking, but is it a northern hospital? As I am northern and just wondering if it could be one near me! Thankyou, that really is groundbreaking!
All the best with your treatment.
Category: Experts Corner
14 Nov 2015 13:06
Well, it sounds like longer is better to a certain point. If the svr rate is 95% for 12 weeks and 100% for 24, then its looks like you get about a 1.3% increase in your chances of achieving svr for each 4 week extension of treatment up to 24 weeks.
Does that sound right to you or am I missing something here?
Thanks
Mike
14 Nov 2015 12:41
PS- extending the 12 weeks to 24 weeks has been tested and shown to give 100% success, so that's a better chance.
dt
14 Nov 2015 12:36
The test is not really available yet so I'm afraid it is really pot luck. No other way to estimate the probability that you will be in the 95% who achieve SVR with 12 weeks or the 5% who don't. Current data says that the 4-week test is not a predictor of success. So you pays your money and you takes your choice. I hate it but that's how it is.
Good luck,
dt
14 Nov 2015 12:03
Hi DT,
And thanks. I will pass the link along. It's too late for me to test, since I am in my 4th week of treatment as of today. We'll see next week how things are going when the test results come back.
Thanks again.
Mike
14 Nov 2015 10:30
Mike,
A significant cause of tx failure with Harvoni is the presence of baseline NS5A RAVs. The only way to tell if you have them is to test for them before tx. This is being talked about but it is not yet being done. For example, if you knew you had these RAVs you might want to think about extending tx.

Here is a link to a discussion about this.
www.clinicaloptions.com/Hepatitis/Confer...%20Thoughts/CT1.aspx

dt
14 Nov 2015 09:23
Hi,
I have had a few folks ask this:
Is there any better chance of achieving a lasting SVR by extending a 12 week course of harvoni treatment by 4 or 8 weeks for treatment naive genotype 1a patients?
Thanks,
Mike
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