Treatment duration

[Scuddy]

Hello,  I have been checking this sight for a few years and found it to be informative, valuable and reassuring.  I was first diagnosed with Hep C in 2001 after probably contracting virus in 1969.  Genotype 1.  As my health was generally good I have waiting for improvements in SOC treatment success.  Levels generally around 400,000,  ALT 55.  at I have taken the leap and am now 12 weeks into SOC & Filibuvir/placebo clinical trial. I had >2.09 log reduction at week 4 and < 15 at week 8. Undetectable.   No RVR but EVR which is quite the difference in treatment duration. I feel I will never make another 36 weeks of this hell.  Depression is terrible,  started Wellbutrin last week, not sure if it has helped yet. Have had quite the rash but find psycological sides harder than physical

As I could have been only a week or 2 from RVR arm of study (tx 24 weeks)  I am questioning adding a extra 24 weeks SOC treatment. No testing between week 4 and 8.  I am going to have a hard time going another 12 weeks as it is.

My viral load at test screening was 896000,  highest ever by far,  which I thought was odd

I am open and welcome any comments, suggestions or what have you.

Thanks

[HectorSF]

"Depression is terrible, started Wellbutrin last week, not sure if it has helped yet. Have had quite the rash but find psychological sides harder than physical".

Anti-depressants take many weeks to work. They don't work in a week or two. Surprised your doc didn't tell you to expect it to take time to be effective.

"When Will Wellbutrin Start to Work?

It may be 4 weeks or more to feel the full effects. Do not stop taking this medication without the approval of your prescribing doctor or therapist.

Many patients experience a period of increased restlessness, especially when first taking the drug. This may take the form of agitation, insomnia, and anxiety".

As others have said, finding a anti-depressant that works for you can take trying many different ones as we are all different and responded to some and not others. By the way, should you try other anti-depressants, you must first give the current anti-depressant time to clear out of your system before starting a new anti-depressant.

  

Good luck!
HectorSF

[GreatBird]

I was in a trial that included boceprevir with SOC. Also didn't RVR (they added the boceprevir/placebo at wk4 and I went UND at wk 10 but had been <25 at weeks 6 and 8). I felt awful at the point in the trial where you are now. My sx were more physical--nausea and digestive issues, headaches, weakness, etc. I wasn't depressed, maybe because my DH was taking care of the world for me and also taking wonderful care of me. I did go through a weepy period, but I can do that without medication (just show me something poignant and touching and I'm a faucet).

Because I didn't clear by week 8, I lost the opportunity to be out of the trial at week 28. This didn't mean I couldn't quit whenever I wanted, but I'd be doing it without a net. (Although--if you look closely--you'll see there is no net.)

At any rate, I started to feel better around week 15. Just a little. My hair started to come out not long after that, but I did find a new equilibrium and my sx started to form into a pattern that was *usually* predictable. When week 28 came, I stayed in the trial. I took it day by day. Didn't plan ahead. Just handled what I had to and kept going.

In the end, I finished the trial at 48 weeks. I think it helped to know I could quit whenever I wanted. I guess it might have been my stubbornness that kept me going. Plus, I had a fervent desire to *never* go through that again.

I'll find out in May if I'm SVR.

I hope the AD helps, and if it doesn't, keep trying different ones until you find one that works for you. Hang in there. And remember, every day that you stay in the trial, you're fighting that virus. And you want to win.

[Scuddy]

Trinity

Does treatment get easier after first 12 weeks.

[newleaf09]

Sent you a message.  Check your inbox.

[Trinity4]

Scuddy,

Thanks for the link, I'll check it out.  

In my humble opinion (we all have one which you will find out if you stick around) your viral load wasn't low going in and without that RVR and given you're pretty sure you're in the placebo group you need the full 48 weeks for the best chance at SVR.  The decision is yours and only you know what you can endure but the stats are out there and anything less than 48 wks is not advised under the circumstances you present.

Keep posting and reach out to others who can relate.  We'll hold your hand or drag you by the ear, whatever it takes.  The first 12 wks are tough on everyone.  Hang in there, things will level out.

Trinity

[Scuddy]

Phase 1 study of Filibuvir showed no major increase of sides. I am in Phase 2 trial. Here is a link to Phase 1 study results. This is a very promising PI and might interest you down the road.
www.natap.org/2009/EASL/EASL_34.htm

It would appear that I am in placebo group so I am definitely delighted with UND,  and loved hearing your words of encouragement.

Thanks

[Scuddy]

Ouch Exactly! I am in Canada and the protocol is the same up here.  The question for me is do I really need 24 more weeks of "treatment" because of missing rigid RVR by a few weeks. It's a tough decision to make, I will attempt to get through next 12 weeks and decide then.

In regards to the Wellbrutin, it just occured to me that it must be doing something or I would not be engaged in this conversation.

Thanks for your comments

  

[Trinity4]

Hi Scuddy,

I'm not familiar with your trial so I don't know what kind of side effects are associated with your trial drugs.  I know interferon and ribavirin can cause psychological problems and hopefully the AD will provide some relief soon.  

Having failed 72 wks of SOC and speaking for myself I would have been delighted had I been UND by 8 weeks and given the fact you are responding so favorably I would go the distance even if I had to crawl to the finish line because you don't want to have to this again.  
I have no other choice but to give it another go when PI's hit the market but you do have the opportunity to make this a one time deal.  Use all the helper drugs available, counselling, leave of absence, whatever it takes to get you through to the end because we aren't getting any younger and the older you get the harder it gets.  Take advantage of that trial and that EVR.

Hope you feel better soon,
Trinity

[newleaf09]

Ouch.  The only way to get an American doctor to sign on for 24 wk. geno 1 TX is to be undetectable at the 4 week PCR (RVR).  Since you are in a study, you are guided by their protocol.   Talk to them and see if there is any wiggle room, but I doubt if there will be.  They must follow their protocol.  

If the Wellbutrin has not modified your mood by 2 weeks, you may want to switch to a different AD.  I went through 4 or 5 before I found one that was appropriate for me (I could not sleep on Wellbutrin or Zoloft).  Anti-depressants are not a one-size-fits all drug.  Stick with it until you get the right one for your own brain chemistry.  They really do work and can make a huge difference in handling chemo.