non-responder for second time

Question

I am a Hep-c non-responder 5 years ago to pegulated interferon and ribiviron, This last november I started triple therapy with interferon, ribiviron, and incivek, My Dr. stopped that after 7 weeks because he said I was not responding to that either. I have since been transferred to a different Dr. and hospital. During the course on my triple therapy I missed several doses of incivek, my question is, did I adversely affect the therapy by not dosing 8 hrs on the dot? and, is it worth trying to re-try the same therapy with the new Dr?

pooh55811 · Accepted Answer

First, I am very sorry to hear that you were a nonresponder 5 years ago and now seem not to have had good results with triple therapy (for whatever reason).

I am going to leave the detailed clinical responses to the experts. I have my own opinion and theory, but it is just that, opinion, so I won't exress it here. The experts on the forum are much more knowledgeable and can give you better answers backed by facts.

However, I will add my two cents about the timing and dosing. I am also on triple therapy with Incivek (finished Incivek Dec. 18th).It is very unfortunate that you did not have good instructions about taking the meds and the importance of taking the meds exactly as prescribed and directed. I did have good instructions about the dosing and was told to be certain I took them every 8 hours and with 20 grams of fat. I am also a registered nurse so I read everything I could about the meds and dosing because I wanted to be sure I did everything to enhance the success of the treatment and I know some meds must be taken exactly as instructed due to half life, absorption factors, etc. These factors (absorption/efficacy and half life) seem to be critical factors in dosing with Incivek. I knew I would never "just remember" to take the meds on time so I bought a portable hand held timer (which can also sit on a desk, table, counter). My schedule was Incivek and Riba at 6 am, Incivek at 2 pm, Riba at 6 pm, and Incivek at 10 pm. I set the bedroom alarm so I would get up for my first meal and dose at 6 am (got up at 5:30 to eat). I went back to bed after that but before I did, I set both the alarm and the portable timer for the next 8 hour dose time. I also set a timer to remind me to take the 6 pm Riba. Then I set the alarm and timer for the last Incivek dose at 10 pm. I took the timer with me if I moved from room to room and sat it in front of my nose everywhere I went. As I said, I never would have remembered to take them at those times without that timer and the alarms. A person, especially me, gets distracted and forgets. In addiiton, we feel pretty crappy on these meds and sometimes need to rest or lie down. I had a two week period of time in Nov. when I was in bed more than up and that alarm and timer were saviors because I did fall asleep (and would have missed the dose).  Some people get watches that have timers and alarms and they work well. (I did not get one because I am not gadget oriented and never would have figured out how to use it, lol. The timer was easy to figure out.) 

So, I guess, my advice would be that if and when you retreat, be sure that you get detailed and accurate instructions concerning the medications and dosing instructions. Also, it would be wise to get a timer and set it and some alarms for reminders. 

I hope other here can tell you more about your other questions. 

Best of luck to you going forward.

unclelarry · Answer

thank you so much for your reply, Yes I wish my Dr. office had explained all this to me in more detail. I can only hope the next time will be more fruitful.

willbb · Answer

did I adversely affect the therapy by not dosing 8 hrs on the dot? 
------------------------------------------------------------------------
The short answer unfortunately' is "yes" it is very possible this is what happened 

From the Incivek dosing label:.

To prevent treatment failure, the dose of INCIVEK must not be reduced or interrupted. Refer to the respective prescribing information for dose modification of peginterferon alfa and ribavirin.


Is it worth trying to re-try the same therapy with the new Dr? 
---------------------------------------------------------------------------------------

Your new doctor would most probably be very reluctant to introduce another protease(incivek or Victrelis ) at this point unless you went through resistance testing to ascertain the status of possible resistance profiles.

Anyone treating you now should be very knowlegable as it pertains to these new medications in order for them to properly advise you of treatment options going forward..

Best of luck...
Will


http://www.fda.gov/ForConsumers/ByAudience/ForPatientAdvocates/ucm256328.htm

.There are no clinical data on re-treating patients who have failed an HCV NS3/4A protease inhibitor-based treatment, nor are there data on repeated courses of INCIVEK [see Microbiology (12.4)].

unclelarry · Answer

Thank you for your reply, I am scared, confused and disappointed. I certainly tried to get better, went through the discomfort  of the medication, I even quit my job so I could withstand the side effects. The results have been less than stellar. At this point I feel I need guidance as to what to ask or demand from my Dr. as how to best proceed.

unclelarry · Answer

on three occasions over 7 weeks I fell asleep missing the last incivek dose. I really tried to keep a schedule of regular dosing but, it was not always possible. I realyy didn't get any personal instruction when I started the regimen. When I told my new Dr about this they wondered why I didn't get a timer? I think I'm going to need some help going forward so I can be a better advocate for my own recovery.

virt111 · Answer

I don't think anyone but a qualified hepatologist can answer those questions, and even they may not be able to give you definitive answers given the variables.  

Missed dosing, not hitting the recommended schedule, or both?  Hopefully, your new doctor can give you some encouragement, in terms of the next order of business.

Wish you the best...