Kevin Hilde - FixHepC

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1 October 2015 at 8:26 am in reply to: Ledipasvir or Daclatasvir #1631
klhilde
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- Guardian Angel
@klhilde
I’m in a hotel about 3/4 mile from Dr. Freeman’s office. He told me a couple days ago he should know what’s going on with Twinvir by tomorrow afternoon.
1 October 2015 at 6:02 am in reply to: Ledipasvir or Daclatasvir #1625
klhilde
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- Guardian Angel
@klhilde
Problem is, I’m on my trip and the clock is ticking.

Dr Freeman can’t ship to me out of country, and Australia is a more expensive place than my trip was budgeted for.
If I’m going to have to go to China or Bangladesh or India to get the drugs myself, I need to know soon.

Also, my employer won’t let me stay on leave forever …. I gotta do this now.
1 October 2015 at 5:51 am in reply to: Ledipasvir or Daclatasvir #1623
klhilde
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- Guardian Angel
@klhilde
Just noticed that I never replied …. yes, I’m 1a. I put more details in my trip thread.

At this point I’m going to go with whatever I can get my hands on …. sourcing this stuff is taking much longer than I had expected or scheduled for.
28 September 2015 at 3:23 pm in reply to: Shelf life of these drugs? #1519
klhilde
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- Guardian Angel
@klhilde
If this link works, look very closely at these pictures.

http://mesochem.en.alibaba.com/product/60097468783-210088640/99_High_quality_anti_HCV_APIs_CAS_1190307_88_0_Sofosbuvir_PSI_7977_.html
24 September 2015 at 4:00 pm in reply to: Incepta’s Twinvir #1467
klhilde
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- Guardian Angel
@klhilde
Thanks for the likely explanation Tim.
24 September 2015 at 10:32 am in reply to: Hep C Treatment Trip #1462
klhilde
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- Guardian Angel
@klhilde
Well well, look what I finally found ….. it’s not a great price, but I just booked a flight Bangkok – Melbourne rt for a little under $700US … and I can reschedule the return with no penalty …. and I get to fly on a Dreamliner!
24 September 2015 at 10:21 am in reply to: Incepta’s Twinvir #1461
klhilde
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- Guardian Angel
@klhilde
Thanks Petre,

My contact in Bangkok didn’t ever reply …. 3 days.

I also looked into traveling to Bangladesh to get it.
I tried contacting Incepta’s distribution office by email as well …. also no response.

And I tried contacting Lazz Pharma, the largest drug store in Dhaka, “open 24 hours a day, 7 days a week.”
http://www.lazzpharma.com/
No response to email, no response to online order info request, and couldn’t get through on the phone.

I guess Incepta doesn’t want my business.
Oh well, Bangladesh really wasn’t a very appealing travel destination anyway.
22 September 2015 at 11:15 pm in reply to: Hep C Treatment Trip #1446
klhilde
- Topics: 30
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- Guardian Angel
@klhilde
Yes, I had thought earlier of going that route rather than taking the trip to Singapore. I was originally planning to get the meds from Dr. Freeman. At the time I was finding flights to Perth at about $320 … going east gets much more expensive. I figured I’d decide after I got here. In any case, I didn’t want to have drugs shipped to me here in Bangkok, to a hotel address ….. just asking for trouble.

Then it started looking like it would take at least a week to ten days to get through the *wire money/import/test/capsulize/deliver* process … and I’ve still got it in my head to get a four week blood test before I return home. I suppose I don’t really need that.

In any case, I need to know exactly how long it will take before I go hunting airfares.
22 September 2015 at 10:11 pm in reply to: Hep C Treatment Trip #1443
klhilde
- Topics: 30
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- Guardian Angel
@klhilde
Update:

Some back info, in case anybody wants to try the same thing.

I originally purchased tickets to be in Thailand for six weeks. I wanted to be here long enough to get my four week blood work done. (In the US my co-pay for one visit to the specialist plus blood work was almost $500.)

Problem … A few days before leaving I discovered that Thailand is only granting 30 visas on arrival. Too late for pre-trip visa. Have to show a departure itinerary putting me inside that requirement.

No problem. I’ll just book a short side trip.
Problem …. how could I know how my schedule with the doctor/hospital would work out?

Whatever, gotta do something …. I booked seven nights hotel in Bangkok and then a five day trip to Singapore …. leaving me 29 days left in Bangkok. That oughta work. Tiger air offered the flight for only $95. Well, not really …. Tiger air has gotchas …. ended up $133. Non-refundable. But still, that left me ready to land in Bangkok.

Got here, everything went too easy with the hospital. Need to book my hotel before I land in Singapore.
Ummm ….. Wow! Singapore hotels are even more expensive than I suspected!
Anyway, I still haven’t booked because now I’ve got issues with the meds. May have to burn the ticket to Singapore and write a new plan.
_________________________________________________________

So, my doctor here in Bangkok chose to write me a prescription for Sofosbuvir/Ledipasvir …. told me Sofosbuvir/Daclatisvir wasn’t recommended for 1a. I wasn’t going to debate it with him, but it tells me where he’s getting his information.

No problem, a couple days later I was given an email address for a contact to get Incepta’s Twinvir for $1500.
Problem …. contact doesn’t answer.

No problem, I can fly from Bangkok to Dhaka for $388rt. I’ll get it straight from the source. And for only $1200.
Problem …. Visa on arrival costs $160 and there is no assurance they’ll grant it when I get there. Really? Really!
Problem …. Incepta’s marketing office, claiming to have their drugs in every drugstore in the country, isn’t answering their emails.
Problem …. Lazz Pharma, claiming to be the largest, most trusted drug store in Bangladesh, with four branches, all open 24 hours a day, 7 days a week ….. isn’t answering their email … or their online order request form … and I can’t seem to get through on the phone either.

No problem …. Bangkok to Beijing is only $270rt. Back to Mesochem and APIs ….
Problem … I’ll have to go to the consulate/embassy in Bangkok to get a visa.
Problem … I don’t know if Rachel will sell me the meds when I get there.

Oh, and if I’m going the Mesochem route, I’d really rather use the Daclatasvir.
Hmmmm …..
___________________________________________

To be continued …..
20 September 2015 at 12:29 pm in reply to: Fibrosis Cirrhosis kPa and F Score and Hepa Score #1384
klhilde
- Topics: 30
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- Guardian Angel
@klhilde
Ya, that’s exactly the chart my doctor here in Bangkok showed me.

12 weeks and no Ribavirin ….. YAY!
20 September 2015 at 12:19 pm in reply to: Incepta’s Twinvir #1383
klhilde
- Topics: 30
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- Total: 253
- Guardian Angel
@klhilde
Looks like I may be trying it here in Thailand.

What quantity do you need for testing? I’ll happily pay for it.

Edit: Testing was about $375, right?
19 September 2015 at 7:17 pm in reply to: Hep C Treatment Trip #1380
klhilde
- Topics: 30
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- Total: 253
- Guardian Angel
@klhilde
More details: (Including typos, etc.)
______________________

X-RAY REPORT

Ultrasound upper abdomen:
History of HCV

Normal liver size with normal parenchymal echo. Few cysts both lobes ,measuring up to 1.3 cm.
Small bright echoic spot at lateral segment of left lobe ,possible calcification.
The gallbladder is absence.
The CBD and intrahepatic ducts are not dilated.
The pancreas appears normal.
Normal both kidneys.
Enlarged spleen is seen ,measuring 1.4.8 cm . No space taking lesion.
Normal size abdominal aorta.

IMP: Few hepatic cysts, both lobes with possible small calcification at eft lobe.
Mild splenomegaly.
Post cholecystectomy.
Not remarkable otherwise.

___________________________________________________________

FibroScan

Observation Item Value Comment

Median stiffness (kPA) 6.2
IQR/Median (%) 16
Number of measurements 11

Comment

____________________________________________________
14 September 2015 at 6:18 am in reply to: Ledipasvir or Daclatasvir #1256
klhilde
- Topics: 30
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- Total: 253
- Guardian Angel
@klhilde
After looking at the data I’m going with sof/dac. And not really for financial reasons, I had thought of hitting it hard with sof/dac/led/rib.
I’ll know in another week or so what my liver looks like and I’ll skip the rib if it looks like I don’t really need it. And I’ve got a bit of an agenda now.

So Mr. Time, here’s what you can do to help humanity …. and I’m serious.

In the US dac is only approved for type 3. Gilead has been unwilling to participate in trials with BMS … not in their financial interest.
Essentially BMS is limited here to a small subset of HCV patients. As I understand, in Europe sof/dac is approved across all types, but just how many countries are following the US lead on this? I don’t know, but my understanding is that most of Gileads income so far has been in the US anyway. BMS seems content to not price compete and take their type 3 profits.

Let’s push them.

If the results are as good as anticipated, and if enough of us are tracked by our good doctor here, and if he publishes his results, that uncertainty statistic drops …… BMS just might decide to price compete. The Indian generic makers might decide to make sof/dac tabs hitting Gileads royalties. AbbVie might decide they have to price compete or miss out entirely.

What do you say?
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