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There is one word I can get over my disgust to say, Joy: Obscene.
Chester wrote:…..IMHO doctors like yours who are peddling false hope to people about their chance of treatment are completely irresponsible. If and when the drugs go on the PBS, I’ll be very, very surprised if you can access them. Hell, I was told ages ago I’d only have a pretty good chance of getting them.
I think it’s time to start reporting doctors who lie to their patients to their regulatory body.
Got the result of my 8 week viral load test back this morning. Still Not Detected. No surprise there, but the reassurance it there.
Saw my Pall Mall Consultant this evening. He’s delighted with my progress: Last FBC results were spot-on; General health good, improved; Just wants me to send him a copy of my 9 week LFT’s that my GP will do next week. He’s pretty-much signed me off. Wants me to do a 12 week eot viral load test and, subject to that being satisfactory, he’ll do an eot report for my GP.
We chatted a bit about the generics situation. He’s still getting people turning up at his NHS clinic with them, asking him to monitor. After a series of meetings with the NHS Trust, the order has come down from on high: No NHS monitoring. UGH!!!!! He’s quite frustrated by the situation, having seen the good that these generics are doing.
He’d had a look at this site and the Buyers Club setup following my previous suggestion. He was impressed. He likes your work Doc James.
Your specialist is being economical with the truth, to say the least. And we hear this story time and time again. When the new DAA meds do become available through your healthcare provider, you (with your current finroscan score) will be at the very back of the queue. Unless the price of the meds drops to a fraction of it’s current price, or you become very ill, you will wait years for a premium treatment.
My advice: Get involved here and get yourself treated now.
mgalbrai wrote:…..Put some letters after your name, make your home address a chemical analysis service for a day. Where theres a will….
MikeOr you could even ‘open’ a compounding pharmacy.
It’s normal and only human to worry. Christ! I’ve just spent £230 on another vl test despite being undetected 6 weeks ago!
There’s an Aussie guy posting on Medhelp, Alex (a member under another name here?), who was G1 and F2, same as you Em. He was virus <15 detected after 4 weeks and undetected after 5 weeks. You'll be fine mate.
Welcome to the forum Puzzled. First off, your best option for Genotype 3 is Sofosbuvir (Sovaldi) and Daclatasvir (Daklinza), probably for 12 weeks with your fibrosis score.
Subject to Argentina’s importation laws, you can get your meds from Dr Freeman’s Buyers Club here following a Skype consultation with him (see the tabs at the top of the page for this). Or you can get them through Greg Jefferys: http://hepatitisctreatment.homestead.com/
But the first thing to do is have a good look around this forum and website. There really is a wealth of info and knowledge here
Great news for you Sir. You were already in the Buyers Club, and I’d like to welcome you to the Healers and Whinge About Side Effects Clubs.
Don’t wish to rain on your parade miko, but Riba sides normally kick in at about 9 or 10 weeks (anaemia = fatigue). But not everyone gets it. Hopefully, you’re the latter.
It’s all looking good Nadia.
I suppose it’s good that those of us on treatment have a few minor side effects to whinge about. We’d be suffering from ‘happy’ overdose otherwise
I only found out I should have had a fibroscan when I first went to see my private consultant. When I got my NHS case files through (which I’d obtained under freedom of information laws), I discovered that my NHS Hepatology Consultant had written to my GP earlier this year advising them that they were going to do a fibroscan. Instead, they did an ultrasound scan (but a very special one, as my NHS Consultant informed me). How on earth do places like that get to ‘centre of excellence’ and ‘teaching hospital’ status? Does Coco The Clown award the accreditations in the UK?
I read somewher (I think it was Greg’s blog) that Incepta uses Mesochem API’s, so no problem there. Incepta is an internationally accredited manufacturer and supplier using state-of-the-art industrial plant, so no problem there. I don’t know where Natco get their API’s (maybe make their own?), but the only ‘advantage’ (if that’s what it can be called) that they have over Incepta is that they are manufacturing under licence from Gilead (there, I managed to spit that word out).
So, I’m now just over 8 weeks into my treatment. It’s been mostly a doddle so far (he said, looking for some wood to touch). Had one very mild headache in the last week. Joint and muscle pain are still there but markedly improved from pre-treatment: I can now walk downstairs normally in the morning to get my cuppa and meds, as oposed to ‘crabbing’ downstairs sideways. I’m so optimistic about this, I’ve told my son and his best mate that I will probably be able to start taking them swimming again soon, which I’d had to stop earlier this year.
Just got back from having a fibroscan at my local hospital. I’d phoned them a few weeks ago to see if they did private consultations, and the clinic leader said that they’d be happy to do it on the NHS if my GP referred me. GP wanted a request from my hepatologist, which was easy enough to get. Handed it in to GP’s last Monday, chased it up this Monday, and I was in the clinic this morning. A big thankyou to my GP Practice and the fibroscan clinic leader at my local hospital (who went over and above the call of duty in tracking down the referral letter to the CT scan unit, where it had been sent by mistake. A letter to the hospital commending her will be going out later). Fibroscan result was 4.9, so finishing my treatment on 12 weeks looks good to go.
Had some blood drawn for a vl test yesterday at Pall Mall Clinic, more as a personal reassurance than anything else. Assuming that it’s still UND, I won’t bother now until 12 weeks eot.
I feel like i’m getting toward the end of a fairly long road now, and I’m feeling quite relaxed about everything.
If it’s from Mesochem, it’s the same product as the Buyers Club (and myself) are using. Just put 66mg into each capsule, and it’s ready to use.
66mg of Daclatasvir 2HCl provides 60mg of Daclatasvir.
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