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Emilio's Place 1 year 10 months ago #130

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Hi Everyone

Once I commence my treatment I will be providing a running commentary on how things progress for me, including baseline liver function (LF) and viral load (VL), start date, side effects, 4 week LF and VL. So in about 2/3 weeks I will be treating for 12 weeks with sofosbruvir and daclatsavir.

Daclatsavir is an NS5A similar to Ledipravir however it hasn't been researched to the extent of Ledipravir. Here is information on the Ally 2 trial which (www.nejm.org/doi/full/10.1056/NEJMoa1503153) which convinced me to give it a crack.

For a 12 week supply of both Sofosbruvir and Daclatsavir I paid $925 US ($1350 AU) and will be having both tested for purity and capsulised for approximately $450 AU in Tasmania. As I speak the APIs (powders) are in transit from China to Australia and should arrive next week. So welcome to Emilio's Place and I look forward to sharing my journey. Peace. .Em
Geno 1b F2/3 snce early 80s. Treated in 2008_9 for 63 weeks on INF/Riba. Commence Sof/Dac on 6 October 2015 and completed 18 weeks of tx. UND at 4-6 weeks, UND at EOT, SVR 2, SVR 6 and SVR 12 on 6 May 2016.
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Emilio's Place 1 year 10 months ago #155

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This is a great idea Emilio. I look forward to hearing how you get on, especially as you are a 1b like me. All my best wishes to you and all of us,
dointime
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Emilio's Place 1 year 10 months ago #161

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My API's arrived at customs last Friday after Mesochem forwarded them on Tuesday. Got to be happy with that timeframe. Confirmation from customs below:

From: Cargo Systems Support <This email address is being protected from spambots. You need JavaScript enabled to view it.>
Date: Friday, 11 September 2015
Subject: FW: FedEx Airway Bill 8066 5821 4688 Supporting Documents [SEC=UNCLASSIFIED]
To: "This email address is being protected from spambots. You need JavaScript enabled to view it." <This email address is being protected from spambots. You need JavaScript enabled to view it.>

I've also included both certificates of authentication just so others can identifiy if their APIs are from the same batch etc. I will have mine tested by GP2U in Tasmania and will let you know how this goes. Em
Geno 1b F2/3 snce early 80s. Treated in 2008_9 for 63 weeks on INF/Riba. Commence Sof/Dac on 6 October 2015 and completed 18 weeks of tx. UND at 4-6 weeks, UND at EOT, SVR 2, SVR 6 and SVR 12 on 6 May 2016.
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Emilio's Place 1 year 10 months ago #171

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Emilio

Either I'm going blind or there's something wrong with the website. I received email notification of your recent posts (within last 3 hrs) but I can't see them here on the thread. CAn't see any attachments either
dt
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Emilio's Place 1 year 10 months ago #175

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Hi DT

After work this afternoon I tried 4 times to attach my Certificates of Authenticity with no luck. I see that Alsdad has been able to upload a document/image but I run out of ideas to achieve this. I even tried converting the PDFs to JPEG but have had no luck. And yeah so that's me writing ...here are my attachments but then having to delete when they don't attach. Anyway I think I will upload these to my cloud and link that way? Em
Geno 1b F2/3 snce early 80s. Treated in 2008_9 for 63 weeks on INF/Riba. Commence Sof/Dac on 6 October 2015 and completed 18 weeks of tx. UND at 4-6 weeks, UND at EOT, SVR 2, SVR 6 and SVR 12 on 6 May 2016.
Last Edit: 1 year 10 months ago by emilio.
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Emilio's Place 1 year 10 months ago #182

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It took me four or five attempts Emilio. :blush:

I'd had to convert a PDF to a JPEG in Microsoft Picture Manager in order to redact personal info, but it still wouldn't upload. Lost all the accompanying post text the first time as well! So copied that before trying again.

I wondered if the file was too big, so I compressed it in in the Picture Viewer edit function down to about 140kb, and it uploaded no problem.
Last Edit: 1 year 10 months ago by Alsdad.
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Emilio's Place 1 year 10 months ago #187

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Hi Alsdad

Yeah it must be a file size limit issue, thanks. Em
Geno 1b F2/3 snce early 80s. Treated in 2008_9 for 63 weeks on INF/Riba. Commence Sof/Dac on 6 October 2015 and completed 18 weeks of tx. UND at 4-6 weeks, UND at EOT, SVR 2, SVR 6 and SVR 12 on 6 May 2016.
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Emilio's Place 1 year 10 months ago #189

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Hi all,

I'm on day 20 of treatment with Greg's Indian Sof/RIBA and Dac (compassionate access from RHH and thanks BMS!) I think the doc added the RIBA as a bit of insurance. I'm F3/4 (probably closer to F 3 because good platelets and albumin) and GT1b.

Can't say I have any side effects so far. In the first few days, I had a few very, very vague things that might have been due to the drugs but were so mild and barely perceptible that I decided I couldn't classify them as side effects. Started off keeping a treatment diary but abandoned it because I simply haven't had anything to write in it. Of course, I realise this doesn't mean things will continue this way.

The healing effects have been dramatic though, especially in the last week. Energy that I haven't felt in years and less muscle and joint stiffness in particular. My mood is actually up, possibly because of the change in my energy levels.

I was talking to the hep nurse at RHH yesterday and this response is typical. Interestingly, if I understood her correctly, she said they're starting to think a lot of the Ribavirin side effects might be mostly associated with taking it with interferon. Apparently those who have experienced side effects report mostly sleeplessness, headache and nausea and they now think this could actually be due to the Sof and not Riba.

Had LFTs and FBC done last Thursday. Everything within normal limits.

Hope you have as little to report as I do about bad side effects, emilio.
Huon Valley, Tasmania
Hep C+ since 1980s
Genotype 1b
F3/4
VL 480,000
Started Indian Sof and Riba, BMS Dac (comp access) 28 August 2015
UND at 4 weeks
Finished treatment 19 November 2015
12 February 2016 UND SVR12
Last Edit: 1 year 10 months ago by Chester. Reason: Punctuation
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Emilio's Place 1 year 10 months ago #190

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Hi Chester

So glad you're doing well, here's hoping for UND next test hey. Keep us updated Em
Geno 1b F2/3 snce early 80s. Treated in 2008_9 for 63 weeks on INF/Riba. Commence Sof/Dac on 6 October 2015 and completed 18 weeks of tx. UND at 4-6 weeks, UND at EOT, SVR 2, SVR 6 and SVR 12 on 6 May 2016.
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Emilio's Place 1 year 10 months ago #197

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Hi Everyone

Well just got word that my APIs have arrived in Tassie, so off to the laboratory for testing then to the compound chemist, Em
Geno 1b F2/3 snce early 80s. Treated in 2008_9 for 63 weeks on INF/Riba. Commence Sof/Dac on 6 October 2015 and completed 18 weeks of tx. UND at 4-6 weeks, UND at EOT, SVR 2, SVR 6 and SVR 12 on 6 May 2016.
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Emilio's Place 1 year 10 months ago #202

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Hi Chester,

That is very good news about the ribavirin side effects, thanks. I hope it proves to be the case because I got a really bad riba rash last time and I don't relish a repeat, or maybe even having to discontinue. I'd appreciate your updates on this as you go along,

Best wishes,
dointime
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Emilio's Place 1 year 10 months ago #203

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Hi Em,

Great news that your meds arrived safely. That's one source of stress out of the way at least. Are you still trying to upload your meds data? Maybe you could just post the batch numbers if it is not working? Would be interesting to see the whole documents but the batch numbers are the most important part, or are they?

dt
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Emilio's Place 1 year 10 months ago #205

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Hi DT

I'm going to give it another try right now. It was a file size issue which has now been increased so here I go:




Geno 1b F2/3 snce early 80s. Treated in 2008_9 for 63 weeks on INF/Riba. Commence Sof/Dac on 6 October 2015 and completed 18 weeks of tx. UND at 4-6 weeks, UND at EOT, SVR 2, SVR 6 and SVR 12 on 6 May 2016.
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Emilio's Place 1 year 10 months ago #208

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Great to hear your meds have arrived emilio. Very exciting. How long does all the testing and prep take?

What combo will you be on dointime? I see you're 1b and treatment experienced. Are you doing Sof/Riba/Dac too? If so, for how long?
Huon Valley, Tasmania
Hep C+ since 1980s
Genotype 1b
F3/4
VL 480,000
Started Indian Sof and Riba, BMS Dac (comp access) 28 August 2015
UND at 4 weeks
Finished treatment 19 November 2015
12 February 2016 UND SVR12
Last Edit: 1 year 10 months ago by Chester. Reason: Punctuation
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Emilio's Place 1 year 10 months ago #210

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Hi Chester,

Not sure what I'll be doing yet. Short answer is that it will be what I can get my hands on despite so many interests which seem to want to prevent me.

dt
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