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Hi panamajo – fancy meeting you here!
Yes our trip to India seems less likely by the day. Amazing what can change in a few short months. Time to get the lab gloves on methinks,
dointimeHi Chester,
Many thanks for the offer to stay. So kind, survivor guilt notwithstanding. Yes, I think it is marvellous what is happening in Oz and Tasmania. Feels like a renaissance taking hold over there in the midst of a sea of darkness all around.
Sometimes I even find it funny how closed UK society still is. For example I found out that there are no compounding pharmacists here for individuals to access. Why? My guess is that Big Pharma doesn’t want people making their own formulas at a fraction of the cost. So I looked all over the internet to see if i could get hints and tips on the basics of successfully encapsulating the Chinese APIs myself. The most useful advice didn’t come from pharmacists or herbalists, it came from the illegal substance users who are well used to manipulating small amounts of various powders. I now know how to scoop, weigh and fill the caps and have been duly warned not to try it while on LSD.
dt
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
I got more or less the same story from the NHS as you, except that I am in Scotland where they will treat you when you get to F3 – it’s still advanced liver disease and who knows how many other related maladies I might develop by then which will be irreversible even if I subsequently get to SVR. And in the meantime I have to live with chronic fatigue and restricted quality of life. So NO, waiting really does not bear thinking about. We do what we have to do,
dt
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
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,
dointimeAnd from the same study:
CONCLUSION:
Data from phase III studies demonstrate that with SOF-based regimens, with or without interferon, SVR12 and SVR24 correlate closely. Thus, SVR12 can be used effectively to determine “cure” rates in trials and in clinical practice.Hi Alsdad,
Well, that must really have given you confidence that they know what they are doing – not! Thank heavens you did go private.
In my experience, doing tx can be a real emotional rollercoaster for many reasons, not least because stuff like this happens all the time. If you were doing ribavirin it would be worse still because that drug has psychoactive properties that can make a monster out of the meekest person on the planet. It may all look like a soap opera from the outside but if you are the one living through it it can get challenging. You are on the bus now so that’s one decision behind you. Hopefully, with a bit of help from your pals you’ll go the distance and reach your SVR.
dt
My own doctor told me roughly the same thing – that almost everybody taking sofosbuvir gets to UND.
In this connection I must say that I have been taking note of some of the ‘success stories’ going around lately. Of course people feel reassured when their viral load declines, especially if they are using the generics. However this is not an indicator of future SVR, as all of us who have ever had a relapse or a viral breakthrough know to our sorrow. So these stories, while very encouraging and wonderful to hear, are premature if they claim that there has been a cure, unless enough time has elapsed after end-of-treatment for at least SVR12 to be established. As things are moving very fast we may get info in the future to say that SVR8 or SVR4 are good enough points with the new DAAs to assume a cure, but I have not heard of that yet.
dt
Dr Freeman
Point 2 has been a question in my mind for some time. I am glad to get a definitive answer on it, thanks. As you say, things are moving very fast in the hepc world. I seem to find out new info daily, and lately from this website which is turning out to be a very valuable source.
dt
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
dtHello Dr Freeman,
I looked at your online site gp2u.com.au and the FAQ. I would like to ask more about this Q/A please:
“Can I use GP2U from outside Australia?
Yes, although certain services will not be available.”I am UK resident. I may not need a prescription to source my drugs but if I do could I get one from your practice? I have copies of all my recent hospital tests available.
dointime
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,
dointimeHi Live life
I am glad you posted this because I also have questions about encapsulating the Mesochem APIs.
1.
What size capsules are needed for 400mg sofosbuvir / 60mg daclatasvir?
2.
I am doing it myself and I understand that fillers are not required. Is that correct?
3.
Once encapsulated, do the capsules need to be stored in the fridge? Once stored correctly, can they be expected to remain viable for 6 months from date of encapsulation, provided that the dry bag of powder as shipped had an expiry date of at least one year?Thanks,
dointimeEm,
I find that really interesting Em. For myself, I don’t feel I want to risk a 12 week duration without riba, even though for my hepC profile the AASLD recommends it. I read the Gilead trial results for ION2 and Sirius, which are the trials most interesting for me, and it seems clear that for 12 weeks I could expect <100% but for 24 weeks it would almost certainly be 100%. The 12 weeks with riba option would for me probably also be 100%, but based on previous experience the riba would give me a repeat of the rash from hell, which I don't fancy. Like you I am favouring the sof/dac combo rather than the sof/led combo.
Therefore, as there seem to be no safety issues with the 24 week option, even for cirrhotics, I am going for that if I can get it. I don't care if it is more than necessary. The recommendations are meant to be for everybody but each individual has to look to their own circumstances. I do wonder if more doctors would be willing to prescribe 24 weeks if it were not for the swinging price of the drugs and the fact that their hands are tied. I wouldn't do 2 NS5As either, for the same reasons as you. The thing I am not sure about is how good an indicator it is to be UND or not at week 4? So because I am not sure I would just carry on to 24 weeks regardless. Do you know of any research which can tell us more about this? My thinking around it has been to have a PCR before EOT and in time for the results to arrive before EOT. IF I were not UND at that point then clearly I would carry on, but if I were UND then what would I do? I'm not sure.
I am genotype 1b
no cirrhosis
treatment experienced with Telaprevir (NS3 protease class)I would be most interested to hear how you go with your tx.
Best,
DT -
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