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

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

It took me four or five attempts Emilio.

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.

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.

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

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?

Had to check where you were at because I thought you were waiting for meds to arrive but I’ve confused you with someone else, dointime.

Uh! What is going on in the UK? I’ve posted a bit on a UK forum. I thought it was bad here but the UK seems to be in the dark ages on this stuff. They still seem to be prescribing interferon combos at a furious rate. What’s up with that? Yesterday’s drug AFAIC.

I’m in Tassie and happy to extend the same offer as emilio. You can come stay here if you want. Plenty of room. TBH I have a bit of a kind of “survivor guilt” over all this. Doesn’t feel right that I can get on with the rest of my life while others hang in limbo or worse.

The initial resistance to people going with generics has pretty much disappeared here. I’m being monitored through the local public hospital (I think they’re actually finding it quite helpful to be getting lots of experience with people on the new drugs before they finally get funded). Apparently even BMS who supplied my Dac under compassionate access know people are getting the Sof from India and China and no longer care. Although I think that’s largely because they’re being cut out of the action by Gilead’s pricing.