I have to be treated..looking for advice.

[Jorah]

Hi Folks I’m looking for feedback, advice.. pointers

Like many others  I aquired Hep c in the 70ies,(not a spring chicken )   found out in the 90ies during routine blood tests at the time it was called “non A non B”.

Off.. I was sent to a specialist/researcher, who said a the time they had this drug interferon that should take care of the issue.  He also send me for a biopsy , that came back with steatosis and some fibrosis. Someone also told me that this Doc was in the pockets of the Pharma company. So I didn’t trust him.

Being suspicious I started looking on the internet for help and read horror stories about people suffering with interferon and it scared me , I’m alone and I was scared that I couldn’t take care of myself.  I hoped that new meds would eventually show up.  I used chinese herbal soups that took care of that feeling of low grade fever. My Ast/Alt appeared to fluctuate with my weight loss or gain, my counts went down as I lost weight. 

Over the years Gastroenterologists  were very eager to put me on interferon…I would  LOOOve to put you on interferon they use to say …lmao.
Well, new drugs appear to be here and here is some of my information:

Hepatitis C genotype 3A    Naïve/Never treated.
Fibroscan 12 I think that is stage 3
Alt 400-Ast200- Bili 10- Alb 42

I started seeing new Doctors and this was what was mentioned before seeing my blood tests:
Sovaldi/Riba/interferon  12 weeks
Sovaldi/Riba 24 weeks
Harvoni/Riba  12 Week study 

I don’t have to pay for these meds but with the sovaldi it is a one shot deal, my thoughts around this is: Because I had the virus for such a long time wouldn’t it be better to take the meds for a longer period of time ..like 24 weeks? This is something you pros can help me with.

Isn’t  taking more meds better? I have these scenarios playing in my head: how about I do 24 weeks Sovaldi/Riba and maybe the last month add interferon to kill it off? Or doing the Harvoni trial and adding some interferon.   Then I read here that side effects of ribavirin are brutal and I become fearful. … the doctor says people sufferd brutal sides with interferon because they were taken for a long time and people on sovaldi/riba can’t even tell they’re on meds..

I feel I need  to knock out this virus at the first shot.

At the first meeting with the new Docs, I asked one of the Fellow Doc, to advice me as if I was a family member and after a meeting with another doctor she came back saying that maybe I’m better off waiting a bit , (not their official position yet)as Daklinza should be approved in Ontario this summer (I don’t know how long after it will be available to me) and do 24 weeks of sovaldi/Daklinza/Riba that’s what I though she said.  If

I have to wait 6-12 months is it worth it?

I’m reading all over the place my head is going to blow up soon with info overload…LOL

Thank you kindly for your help

[KimInTheForest]

Jorah: Forget about interferon altogether. Absolutely not necessary these days, and you have other options.

If you have access to that Harvoni+Riba 12-week study (clinical trial) for treatment naive Genotype 3 people in Canada, then do that. You will almost certainly be cured, and it is not a hard ride at all.

That is the clinical trial I am currently involved in, in another province, and so is a 3rd person on these forums (@RightHere, or rather her partner is).

The link for that trial is here: https://clinicaltrials.gov/ct2/show/NCT02413593

If your doctor can refer you to the trial location in Toronto for that study (it is happening in 15 centres across Canada, but I recall you are in Toronto), then seize that opportunity a.s.a.p. There are only 100 seats total, spread across 15 different centres in Canada. And many of them are already full and underway.

In New Zealand, the ELECTRON-2 study with exactly the same profile and parameters (12 weeks of Harvoni+Riba for Geno 3, Treatment naive) had a 100% cure rate!! You will not beat that ever.

I am into Week 7 of 12 of this trial, and the drugs have been no problem. It has been an easy ride. Also, this is an Open Label trial with one group only, meaning no randomized arms, no placebos, no sub-optimal durations. Everyone gets the real drugs for the full duration. You cannot ask for better than this trial if you are Geno 3 treatment naive. It is the miracle we have been waiting for.

Act with some speed on that opportunity.

All the best to you, Jorah!
kim

[Jorah]

Hey Thanks Kim,

I can see you're very enthu about this study :-).

I don't understand why Gilead is not pushing harvoni for g3 if they had such a good result, I mean even on their harvoni site they only mention G1 and I called them out of curiosity and the person that answered today didn't know about G3. Gave me another number...I'll call maybe during business hours.

I'm curious on why My Docs didn't push this study if the results are so good. I think that study doesn't allow for cirrhosis, I don't know if I have it, I'm going for an ultrasound. I'm going to have to talk to them..and see what's up. I'm happy to hear the good news that its working it out for you...do you know if that was the only study with Harvoni for geno3 ?

Thanks again

[KimInTheForest]

Gilead isn't pushing or listing Harvoni as a treatment for G3 because it hasn't been approved anywhere for G3 yet, as far as I know. That's why we G3s now have these great trial opportunities. Harvoni has only been approved for G1 (and maybe G4 someplaces?)

You are right, I believe, that this particular Canadian trial of Harvoni+Riba for G3s does not allow people with cirrhosis. And the chart I have on file for staging fibrosis says that a fibroscan score of 12 or greater is Stage 4 (cirrhosis). HOWEVER, fibroscan scores are quite variable - even at stage 4, I believe (and you are just on the border with a reading of 12). Depending on whether you ate before the exam, whether they put you in a contorted position to get the reading, if your ALT was above 100 at the time, what machine is used, what operator does it, how experienced the operator is. In other words, you could go have another fibroscan (especially on a different machine and with a different operator) and quite possibly come in at Stage 3. Not that you are trying to cheat it down to get in the trial. There would be no point, because maybe that duration would not work on a true Stage 4. But what if you are really a true Stage 3? Then you would be perfect for the trial and would almost certainly be cured.

best,
kim