Shot down twice today

[GP7852]

As a Harvoni relapse I was hoping to get into 1 of 2 trials that I was waiting to hear from.I got a call from the University of Pennsylvania.They were 1 of the trials I was waiting to hear from but she just had some medical questions and told me the trial which was being done by Gilead was for only 1 person and I wasn't 1st on the list.I then called my doctors office who told me they would be having a trial from Merck for Harvoni relapsers but when I got my call back she said I wasn't eligible because I have done other treatments and it was for people who have only done Harvoni.I am back to square 1 again and would appreciate it if anybody might know of or hear of any trials that might be on the horizon for Harvoni relapsers who have had previous treatments.
                                               Thank You   Glen     ***@****

[Dee1956]

Hey there! I did a search and found this, I hope it helps you.  This is run by a registered nurse

http://forums.hepmag.com/index.php?topic=2212.0

[Dee1956]

With Greg Jeffries, all that is required is a prescription from the doctor.  Then he has medications shipped directly to you.
He has been in the news.
It is like the Dallas Buyers Club was for AIDs when people were dying.

Good luck no matter what you decide

[GP7852]

Can you give me the information on this trial.I would like to apply for it.I would travel if its a reasonable distance.And please,any other info you can give me on this trial,the meds involved.
                                                     Thank you   Glen

[Dim37]

Glenn please try again.  Google "my hep c diary " and cleak to the latest post.

[GP7852]

I agree with what you are saying.You also must know that desperate people go to desperate measures.If you have been completely shut out of all possibilities of getting meds in the near future and your health is fading you grab on to anything you can get your hands on.I am not going down without trying.
                                                 Glen

[GP7852]

Thank you for that info Dim.It does sound hard and I don't know how I would get a pharmacist to write me a referral letter but you make a valid point.If you are dying from cirrhosis you have to do whatever you can.I have been shut out of the trials and my insurance company has swept me under the rug and I cant blame them.They spent an awful lot of money on me to no avail.I do want to survive and if this is my only shot I must try it.
                                          Glen

[SurfsideGal]

I meant to add that when there is resistance to sofosbuvir, which happens rarely, it does not last very long as it is a very wimpy resistance. Please discuss resistance testing with your doctor before embarking on another course of treatment. Also for harvoni failures, the NS5A inhibitors  likely will not work. I am told that the NS5A part of the Merck combo that is expected to be FDA approved in January, is not a good choice for harvoni failures. But docs may start to use part of separate drug combos. Of course, insurance is always an issue.

[susan400]

Just to remind you, I didn't do the Harvoni. DId do the Sovaldi.  The trial nurse said that this trial takes Sovaldi and Harvoni failure patients and this trial has no Sofosbuvir in it.

[SurfsideGal]

I am not a scientist, nor am I a medical person. However, this thread scares me a bit. First of all, how do you find out if the meds being sent are pure and safe? Secondly, for harvoni relapsers, the drug sofosbuvir along with ledipasvir, is what makes up harvoni. Those who have failed to achieve SVR, may have resistance issues and any drug combo that uses either sofosbuvir or ledipasvir, or any combo of drugs that uses other drugs in the same "fclass" may not work and you may be causing permanent resistance issues. Please be careful. Please talk to your doctor before undertaking something like this. It is very risky.

[Dim37]

SuSan you sure have a point. But not all of us are so lucky to be able to participate in an official trial. Not in Greece anyway. Sof+dac  cost about 120 thousands of dollars in Europe and you only get them trough insurance if you are almost dead from cirosis. In the Ally trial this combination cured almost 100% of all previously treated

[susan400]

I can see where some people may choose this route, but for me this would not be something that I could do.  I know I also take a risk with trials, but it's a risk more to 'my convenience' than anything else.  Figuring out some formula like that would absolutely give me a meltdown. I know it sounds weird, but all the treatments I've done have fried my brain and I can't do simple math problems anymore. Get confused and frustrated trying to learn new things, etc.  A couple of years ago, I wanted to return to work and went to a job rehab place, they did some function/education type of tests on me and I had lost so much in the way of that. I graduated from high school and yet, on my math testing, I tested at grade 5 on part of it and grade 8 on the other. On the comprehension of reading, I was testing on grade 8.  I felt like,  I was going to need to be putting in too much effort (when I'm still not SVR-and will have to treat again), to try and rehab my brain back up to 12 grade level, so that I could start 'training' to do something new for working.  So, I basically, just said, thanks, but no thanks. Until I finally get SVR, (then,I will try to get some serious brain rehab-if it's not too late for that), then I'm staying on disab.  I mean, trying to figure out ordering drugs from another country and how much of what new drug and amount and talking intelligently to a pharmacist about what I'm trying to do and etc., seems harder than just going to a trial site, handing them my medical history and having them tell me exactly what I have to do and when.., everything is all written down for me laid out and I don't have to pay anything for it. I've done trials before, so I'm aware of what's involved and how it works.  Susan400

[Dim37]

Was thinking I 'll be robed. But in 5 days I received trough FedEx my medicines.  You can find the company on the Internet and you need to email Rachel. They didn't ask for prescription. I thing now they ask for a letter from a farmacist that he confirms that he will encapsulates the drugs.

[Dim37]

Hello again Glenn. The company in China is called Mesochem. They only sell api's . This is the active ingredient of the medicine.  I bought 40 grams of sofosbuvir and 6 grams of daclatasvir in a pure powder form. That makes 100 doses each. I bought a digital scale and empty capsules and made 100×400mg of sofosvubir and 100×60mg daclatasvir. Is very simple. Hundreds of people around the world did the same and they reaching car. I live in Greece.  I ordered the drugs send the money, although I

[GP7852]

Hello Dim
I am very interested in what you said about purchasing those meds from China.Can you give me some information please.For the $1228 how much medicine are you getting in terms of months.My other question is will my doctor give me the bloodwork if I am doing this on my own,if not how can I get my bloodwork done to know how I am doing.I would guess you sent your money to China first before you received your meds so you feel that these people are trustworthy I would imagine.Will they accept a credit card?I am definitely considering this off of your results.Looking forward to your reply.
                                 Thank you very much     Glen

[GP7852]

Thank you Susan
The lady at the u of Penn said that there might be another trial coming from Giliad soon.She didn't give me any dates.I have also received some info on here from Dim about purchasing drugs from China that might be a good fit for someone like myself.I am going to look into that as well.There is nothing available at clinical trials.gov.
                                 Thank you   Glen

[susan400]

I'm surprised that they told you that about the Merck trial.  I have been told by my trial site that there is a Merck trial starting in Dec. and this particular trial site, I've been to before for a previous trial, so they KNOW that I've done many treatments. They also have all my records documenting the other treatments. This is a reputable trial site that told me this.  Maybe there will be more than one Merck trial coming up, or maybe that particular trial site that told you that, is just being selective at that site? I was contacted by this trial site about three months ago, asking me if I'd be interested in the because they had though about me and that it was 'very inclusive' as far as allowing someone who had been past treatment failures, including my Telaprevir and even my Sovaldi exposure.  Just saying, I would check with multiple trial sites that are in the driving distance that you'd be interested in doing for the duration of the trial.  One time, years ago, I was turned down by one trial site, then, for the SAME trial, I tried a different trial site and was accepted.  If you lived about 600+ miles further south, I'd recommend my state, but don't think you'd want to drive that distance every week!!  It wouldn't be practical.  In looking at your profile, I notice you live in New Jersey.  Would you be anywhere close to neighboring states?  I honestly know nothing about NJ, as I've never been anywhere up in the New England states. But, like say for example, if I was 'just over the border' from GA and I lived in Ala, I'd check out GA for trial sites.  It's something only you can decide for yourself.  Susan400

[Dim37]

Hello. I have followed your posts and I am really sorry about the torture you are going through. I thing is worth checking a different path . I bought daclatasvir and sofosbuvir Api's from China for 1228 dollars  delivered . I am geno 1a with 6.5 million vl. Day 32 not detected , alt and ast normal. It seems that this particular combination in 24 weeks cures almost everything. You can Google  Greg Jefferys site. You will find all the information you need. Good luck.