start with two or three?

[CherylBarton]

I am just about to start treatment. I have one of the harder genotypes to cure, so may use a third medicine. Has anybody in this forum used the third, just approved last month? Does anyone know if it is better to start with the two traditional medicines and if my viral count doesn't respond, then add the third, or to just start with the three?
Thank you for sharing any knowledge on this subject.
Cheryl

[CherylBarton]

Wow, you are a wealth of knowledge, Will, and thanks for taking the time to respond.

You've clarified for me that because of the two new medications, there are two ways of treating. I am assuming and will verify the third med my doc is thinking about is Victrelis--this is what it sounds like.

You make two really great points: 1. wait for other options because I can (actually this is what I've been doing for the last 12 years). This is still a consideration, but it stresses me out so much knowing I have it...and not being able to have a drink here and there without great guilt has gotten to me. But the real reason is that my doc said 'just do it,' this is good timing for you now. Also he did not seem optimistic about better drugs any time soon, where he has been in the past. Stilll...I know.

and 2. lack of access to timely care. This is really a wise thought. My primary doctor is very accessible, and probably knowledgeable enough...but I willl talk to her about it. good idea.

thanks so much.
Cheryl

[fredpacc]

Hi Cheryl,
I'm pretty sure there are strict guidelines set by the FDA as to the administration of the therapy. Your doctor really can't decide to add medication after the fact, the protocols are usually adhered to. I agree with all the comments and will be going on the triple treatment with Incivek soon.
I wouldn't even consider just the two treatments, I did it once and relapsed - You really don't want to go through this twice if you don't have to. Best of luck, get well soon - Fred

[Trish77]

I'm going to step outside the box a bit, at least outside the "more drugs is better" box.  The cure rate for a Genotype 1 with an RVR is equivalent to adding a PI.  So I think your doctor is saying that if you have an RVR, then you don't necessarily need a PI.  I'm sure that point of view will be a little controversial however when the cure rate is about the same, I don't see the benefit to a treatment naive person in adding a 3rd drug that brings resistance issues, extra cost and side effects with it unless there is good clinical reason for it.  If you had relapsed in a prior treatment, I'd say that would be different but you haven't.  Your doc is already agreeing to starting a PI if you don't have an adequate response at Week 4.  I'd discuss with him what he means by that - does he mean RVR?  UND for virus at 4 weeks?  I'd also ask if he's willing to do a viral load test at 2 weeks.  That RVR is a great indicator of SVR but going UND earlier in that 4 weeks than later in that 4 weeks is an even greater indicator of SVR.

The other piece of information I think you should consider that would have some bearing on whether you start out from the gate with a PI is an IL28B test.  There are three results to that test - CC, CT and TT - best to least response, respectively. If you are a TT, I would most definitely start with a PI from the outset, as the chances of a TT getting an RVR are virtually zero.  If you are a CC, the most responsive IL28B allele, then your chances of RVR are much higher and you may not need the PI, which is where seeing what the 3 - 4 weeks of SOC treatment results are.  

While you only want to have to do this treatment once, you also don't want to take any more - or less - drugs than are necessary.  I think ribavirin is magic but I wouldn't increase it beyond what is reasonable and the same goes for treatment drugs overall.

Now...that's an opinion only and I welcome input on that from others and perhaps some input would have me changing my view on that, however that's how I see it at the moment.

As for your Doc being far away...in my community we have a Hep Nurse Practitioner who travels to this community and represents the doc who is an hour away.  It helps if you have good communication with your NP though...since she's the one you're going to communicate with the most and if you disagree with her and want to consult with the doctor, you want to know she's going to be open to your concerns.  So she may be curt, but now is a good time to plunge in anyway and see how she responds if you express concerns or have questions you think might rile her.  Not everyone who is curt is lacking in compassion.  Just sayin'.  :)  

Good luck with this.

Trish

[screaming48]

Cheryl I believe the reason for my Doc not doing a lead in is because of the teleprevir (incivek) protocol you start all three at once, with the other one Boceprevir I believe there is a lead in of 4 weeks then add the Boc... ditto to what everyone else is saying..

[willbb]

Cherly...no one here is a doctor.. like I  said above what treatment to do  or not to do  especially dosing advice should only come from your doctor....,ours are just laymens opinions.

best ..Will

[Trish77]

Ditto on what Will said, Cheryl.  No doctors here, only opinions as I said.  You'll get plenty of support and the best suggestions we have to offer you and then it's you and your doctor who will determine what is best for you.  It's a serious undertaking to go through treatment and important to choose a good treatment team.  

Incidentally, I didn't see my Hepatologist very often throughout treatment either and his office was down the hall from my NP. :)  I saw him a handful of times and never for very long of an appointment but always when it counted and there was always a great deal of value in a short appointment.   Again, good luck with weighing out all the information and deciding what is best for YOU.

Trish