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Searched for: treatment
21 Oct 2015 04:02

mgalbrai wrote: I live in Arkansas and ordered my sofosbuvir and ledipasvir from Mesochem. I paid them on Monday and the package was delivered to my door on Friday. I will get my blood work done tomorrow and start my treatment then. Not more than a 10 day process from start to finish. Sealed, straight from the manufacturer.
Mike


Hi Mike,
That is really great news! congratulations.
It's good to know that you obtained your API's without any paperwork & got them through customs OK,

Do you feel confident using the API's without testing? or will you conduct your own testing in the US before starting the tx ?
best wishes,
Jolie,
Category: Patient Stories
21 Oct 2015 03:47
Nothing like that at all. I just said I was with the local university doing research, which is true, since I am with the university and I am researching the efficacy of generic HCV treatments-on myself.
Category: Patient Stories
21 Oct 2015 03:25
I live in Arkansas and ordered my sofosbuvir and ledipasvir from Mesochem. I paid them on Monday and the package was delivered to my door on Friday. I will get my blood work done tomorrow and start my treatment then. Not more than a 10 day process from start to finish. Sealed, straight from the manufacturer.
Mike
Category: Patient Stories
21 Oct 2015 00:24
Hi Zlickster,
I take fish oil, but not at the same time as meds because it may interact with the absorbtion. I take Dac/Dof first thing in the morning with planty of water and the fish oil sometime in the afternoon.
With regards to checking your bloods I think 2nd and 4th weeks are important to see how well your are responding to the treatment and after that if everything is fine and you get negative result you should maintain your SVR until at least the end of the treatment.
Category: DAA Side Effects
20 Oct 2015 23:48
Hey Zlikster!! Welcome to the club...Sad you had such a bad time with the previous treatment...Check out with others if omega 3 and stuff is ok...I'm not supplimenting at all, I did it before treatment. I'm curious about your results! Thanks!! Keep us posted!
:)

Zlikster wrote: Hi folks!

When i get my hands on Sof+Dac i will post detailed info (blood charts) of progress. My plan is to do PCR @ pre tx, 4w, eot, eot+12w, eot+48w. Liver enzymes (ALT/AST) @ pre tx, 2w, 4w, 8w, 12w, eot, eot+12w,eot+24w, eot+48w. Since i am not insured, it will be a bit stretch on the budget, so i might reduce number of PCR tests to 4w, eot+12w, eot+48w. Regarding supplements, probably nothing. Maybe vitamin D and fish oil. Regarding diet, i will most likely go with same one as i when i was on Peg+Riba. No fatty foods (pork/lamb), from meat mostly turkey/fish/chicken/veal, no sodas, steamed veggies as much as possible, lots of green tea (which i drink anyways), no spices except ginger and turmeric. Thats the plan :)

I had really bad permanent damage from PegIntron (damaged left ear, severe tinnitus), so i do not intend ever in my life to repeat interferon based tx. Was pretty ok with tolerating Riba tho. From what i heard from people that went on Sof+Dac clinical trials, which were long time ago while Gilead and BMS were cooperating, sx were negligible and all got cured.

glad to see you all doing good on Sof+Dac!

best

Category: DAA Side Effects
20 Oct 2015 21:57
Hey Joy!! I'm as well 6 days into treatment...Keep me posted...I feel good aswell... :) :) exciting

Joy wrote: Yes welcome Joan. It was a long 3 weeks for me - but well worth the wait. More energy already, and I'm only 6 days into treatment.

Category: Patient Stories
20 Oct 2015 19:23
BIG LOVE TO EVERYONE!!! ESPECIALLY GREGG, OUR REBEL HEART FOREVER AND DOKTER THE FREE MAN!!

Vicki wrote: 3 weeks ago I was the 1st patient on HCV generics that the Geelong Hospital Liver Clinic saw. Their initial reaction was horror. I was berated for being irresponsible and told I might not be able to be monitored by the clinic for my actions.

I was surprised that the clinic was so far out of the loop with what was going on considering the recent media attention.

I phoned the Melbourne St Vincents clinic and the Nurses there were very reassuring and told me of many rebel patients who are having great success. I could here the happiness in her voice as she spoke about this compared to the angry rebuke I experienced in Geelong. They also told me that Geelong Liver clinic had contacted them about a patient (me) for advice.

During last week I received a phone call from a lovely nurse at the Geelong Liver Clinic. She had been given the task to do the research and bring the clinic up to date. She apologised for the clinic saying, "We are just country yokels in the dark" .

Geelong is one of Victorias biggest regional cities an hour from Melbourne!

We talked for a while about the treatments and the frustrations the doctors and nurses face due to lack of access to both regulated and generic life saving drugs. She was concerned about the many folks who aren't computer savvy or don't have enough money to even buy the Generics.

Nurse also told me after the recent meetings in Sydney with doctors and the Government. The word amongst her colleagues is, that the "HCV DAA's would NOT be listed on the PBS in December for administration early next year".

The nurse asked if she could give my phone number to a few people who were interested in curing themselves with the generics but were nervous of taking this path.

"Oh well I'm not a doctor, I'm not sure about giving people my phone number at this stage. but I would like to help". I answered with bewildered caution.

So it seems they are up to speed and have been empowered with the knowledge of the success of the Generics and the approval to monitor patients like us.

This has given me much food for thought. Things are changing rapidly and hospitals are obviously getting on board with the the Generic Rebels. But still their hands are tied until they can prescribe these drugs themselves. this must be somewhat disempowering for them

How much of a load can the Buyers clubs take and how long will it be until everyone has access to drugs that could eradicate the HCV virus?

And....what about the many who don't have a computer or the 2 to 4K to buy generics? - What can we do to help?

I will attend the clinic tomorrow for my 4 week blood test results. I'll have to wait a bit longer for my 'Viral Load count' Exciting!!!!

A huge side effect from these drugs is love and compassion and the renewed energy to give something back as Dr Freeman and Greg Jefferys have shown us is possible.

20 Oct 2015 16:33
3 weeks ago I was the 1st patient on HCV generics that the Geelong Hospital Liver Clinic saw. Their initial reaction was horror. I was berated for being irresponsible and told I might not be able to be monitored by the clinic for my actions.

I was surprised that the clinic was so far out of the loop with what was going on considering the recent media attention.

I phoned the Melbourne St Vincents clinic and the Nurses there were very reassuring and told me of many rebel patients who are having great success. I could here the happiness in her voice as she spoke about this compared to the angry rebuke I experienced in Geelong. They also told me that Geelong Liver clinic had contacted them about a patient (me) for advice.

During last week I received a phone call from a lovely nurse at the Geelong Liver Clinic. She had been given the task to do the research and bring the clinic up to date. She apologised for the clinic saying, "We are just country yokels in the dark" .

Geelong is one of Victorias biggest regional cities an hour from Melbourne!

We talked for a while about the treatments and the frustrations the doctors and nurses face due to lack of access to both regulated and generic life saving drugs. She was concerned about the many folks who aren't computer savvy or don't have enough money to even buy the Generics.

Nurse also told me after the recent meetings in Sydney with doctors and the Government. The word amongst her colleagues is, that the "HCV DAA's would NOT be listed on the PBS in December for administration early next year".

The nurse asked if she could give my phone number to a few people who were interested in curing themselves with the generics but were nervous of taking this path.

"Oh well I'm not a doctor, I'm not sure about giving people my phone number at this stage. but I would like to help". I answered with bewildered caution.

So it seems they are up to speed and have been empowered with the knowledge of the success of the Generics and the approval to monitor patients like us.

This has given me much food for thought. Things are changing rapidly and hospitals are obviously getting on board with the the Generic Rebels. But still their hands are tied until they can prescribe these drugs themselves. this must be somewhat disempowering for them

How much of a load can the Buyers clubs take and how long will it be until everyone has access to drugs that could eradicate the HCV virus?

And....what about the many who don't have a computer or the 2 to 4K to buy generics? - What can we do to help?

I will attend the clinic tomorrow for my 4 week blood test results. I'll have to wait a bit longer for my 'Viral Load count' Exciting!!!!

A huge side effect from these drugs is love and compassion and the renewed energy to give something back as Dr Freeman and Greg Jefferys have shown us is possible.
20 Oct 2015 10:25
Can Greg Jefferys' blog be considered to be "well documented"? I think most of us here read it?

hepatitisctreatment.homestead.com/generic-daclatasvir.html

10th October entry.
Category: Patient Stories
20 Oct 2015 08:37
The trials are simply to gather evidence that Generics do work they also provide
an opportunity to offer access to treatment to as many people as possible.

I don't think the plan is to add in anyone who has bought over the last few weeks.

Two reasons stand to mind; 1; The price point for the buyer club is not the same
as the Redemption Trials.
2; The Buyers club was only offering two drug options from one
source in China. The Trials are offering more drug choices from a variety of suppliers in Bangladesh.



What information are you looking for London Girl?
20 Oct 2015 08:30
Hi Cindi,
I had a natural birth but with some complications. My viral load was sky high I guess. I didn't know about it at that time.
I'm on my 3rd week of treatment and looks like I'm responding well. Once the safe doses have been established for the youngest group, I hope our remarkable doctor James would organise a trial for us.
Category: Experts Corner
20 Oct 2015 07:58
Hi Dointime,
I am in the US, and recently sent an email to Rachel as Mesochem. Here is her reply (received today) to my inquiry:

Dear Sir,
Good day!
Thank you so much for your email, we are supplier of daklatasvir
But our product is powder form API, not medicine, can't be used for treatment directly, sorry we can't sell.

Best wishes,
Rachel


It seems that it's getting harder to access from this company now. Anybody else heard anything? Also does any body know if the new TTP is a signed, done deal? I read that it looks like 8 years on patented drugs before generics can be made. Are we in danger of losing the India and China suppliers? Would These countries be required right away to stop making generics? Not exactly sure how this works, if someone could send a link, so am better Informed?? Thanks.
Category: Patient Stories
20 Oct 2015 06:57
Yes welcome Joan. It was a long 3 weeks for me - but well worth the wait. More energy already, and I'm only 6 days into treatment.
Category: Patient Stories
20 Oct 2015 06:35
That's great news for you Nadia. When we start treatment, we are looking for anything that's different than before we started. And we try to latch onto any positives, and worry about any negatives. But then we get the first blood test results and the figures don't lie: There's the hard copy proof printed on paper! And we know for sure that the treatment is working.

Looking good Nadia. :)
Category: Patient Stories
20 Oct 2015 06:16
Welcome to the club, Joan :P Good luck!

Joan wrote: Hello All

My name is Joan and I am awaiting the arrival of Sof/Dac. I have been informed that the order was placed last Monday, hopefully they will arrive in 2 weeks 3 at latest. I have been HCV for 40 years and have been affected with fatigue, nausea and weight loss. I had to give up my part-time job a year ago. My specialist has suggested I start treatment meaning the only available one being Interferon. Which I have never taken because the side effects were too harsh. I am grateful to Dr Freeman and team for having set up the Buyers Club as I would still be waiting for the announcement of the 'new drugs' on the PBS. Now I have the opportunity to have a cure sooner rather than later and prevent more progression of HCV.
I have been reading peoples stories of their experience of Sof/Dac and find it very informative and helpful as I prepare my mind and body for the 12 week treatment. Thank you all Joan

Category: Patient Stories
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