Incivek? Taper to reduce sx?

Hi I have tried to find this answer elsewhere so hope someone here can give me some insight/advice.  Approximately 5 days ago I finished my 12 weeks of Incivek, I am wondering if I was supposed to taper off of it a I seem to be having withdrawal symptoms.  Horrible anxiety, can't sleep or think.  After thinking about this all day I also realize that the nausea was very bad so they put me on anti nausea, then the itching became unbearable (benedryl did not help) I got two or three drugs for that.  Very dry mouth, fever blisters, canker sore, maybe the dry mouth added to it.  Right before stopping Incivek I was producing no saliva at all.  In the 5 days I have stopped the saliva is producing again, I do not feel the itching so stopped the prescription which I think threw me into withdrawal, the orange burning discomfort is slowly getting better but still there  I guess you can't just stop the fat lol  I am trying to keep my humor here.  I assume that there is a time of adjustment.  Unfortunately since I took my last 12th week dose on a Saturday night I had no one to ask (In hindsight I should have)  I saw the doc the following Wed, he said nothing about tapering however did tell me that all of his patients are having very similar sx and he does not know why.   All that can be said is that there might be an adjustment period after the 12 weeks of Incivek (for me anyway and I see others asking the same)  I read in proscribing information for doctors to be careful of certain drugs as Incivek could increase or decrease any other medication s by 70% either way.  I thought the doc was keeping track, now I do not think he was.  So I believe (not a doctor) that the symptoms after stopping Incivek is similar to when I was pulled off of Peg/Riba back in 2008.  I remember people asking then if there should be a taper.  So, in my long winded post I am asking if perhaps I did this the wrong way by just stopping, that I should have tapered. I am asking for more experienced people what they think.
Thank you all for your support for the 12 weeks on Incivek, I do not think I could have gotten through the 12 weeks without all of your help and support and I am hoping for one more question regarding tapering off of Incivek
I was UND at 12 weeks, thank God, now on week 13 shot 14.  My Hgb is 9.9 while it is normally 14.8 I can only think that the doc did not give me a rescue drug because I finished the Incivek and it could have added to my low numbers
Thank you

[hrsepwrguy]

Elimination
Following administration of a single oral dose of 750 mg 14C-telaprevir in healthy subjects, 90% of total radioactivity was recovered in feces, urine and
expired air within 96 hours post-dose. The median recovery of the administered radioactive dose was approximately 82% in the feces, 9% in exhaled air and
1% in urine. The contribution of unchanged 14C-telaprevir and the R-diastereomer of telaprevir towards total radioactivity recovered in feces was 31.9% and
18.8%, respectively. After oral administration, the apparent total clearance (Cl/F) was estimated to be 32.4 L/h with an inter-individual variability of 27.2%.
The mean elimination half-life after single-dose oral administration of telaprevir 750 mg typically ranged from about 4.0 to 4.7 hours. At steady state, the
effective half-life is about 9 to 11 hours.

http://pi.vrtx.com/files/uspi_telaprevir.pdf

A you can probally tell from the time of post I am having trouble sleeping as well. It took about 10 days for me to start feeling better after the incivek but now my anxiety has kicked into high gear and insomnia seems to be gitting worse. I have been thinking it is because the incivek keep me feeling worn out  and tired, I was on promethazine as well and stopped when I finished the incivek which also made me tired now that I am not taking those anymore I feel like the sx of the Inf/riba are more prevalent. Just a thought and what I am expiriencing.

[working dog]

i talked about withdrawal sx from incivek too...thats what it felt like to me...i had a few good days right after stopping the incivek then tanked...took a full couple weeks to kind of level off....there doesn't seem to be much info on this problem yet...but since i went through it i've see others say the same type of stuff...good luck.....billy

[Livinontheedge]

Oh Gosh Dee, I surely hope I dont have this to look forward to also.  Tomorrow is my last day of INC and I am happy but somehow dreading it.   During the last 12 weeks, I could always tell a difference in me about the time a new dose was ready to take.  Seems like I get more anxious until I take it, and it wasnt that way in the beginning but only for the last 4 weeks.   I think I will slowly decrease the fat or at least keep at least 10-15 grams with each dosage with Riba afterwards and slowly deplete it.      I know today I havent drank enough water because I am so flippin nauseated and I will be dry mouth in the morning, so I am not looking forward to that either.  
I havent had to hit any rescue drugs either for low cbc, so for that I am greatful.     Hopefully my labs will be UND as well.    
Congrats to you girl and I hope it gets better.   Keep us informed as I am right behind you.    C

[HectorSF]

Incivek? Taper to reduce sx?
NO. INCIVEK should NEVER be stopped or tapered during treatment. All clinic trial data is based on stopping, not tapering. Even in the PROVE 3 24 week arm.

"HIGHLIGHTS OF PRESCRIBING INFORMATION These highlights do not include all the information needed to use INCIVEK safely and effectively."

"2.2 Dose Reduction
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 [see Warnings and Precautions (5.7)]."
...
"5.7 General
INCIVEK must not be administered as monotherapy and must only be prescribed with both peginterferon alfa and ribavirin. Therefore, the prescribing information for peginterferon alfa and ribavirin must be consulted before starting treatment with INCIVEK.

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)]."


Hector

[his3707]

i just stopped cold turkey.  No one ever said to taper off after completing  the 12 weeks.  certainly like hector said not before the last day of the 12th week.
If I  was having withdraws Iwouldnt have known it because I just felt like cr@p.  It was a week or two before I felt better and it just got a little better each day.

[Dee1956]

Thanks so much, I thought I had done something wrong I am feeling a little better I had no one to ask
Thank you
Dee

[Dee1956]

Thank you for commenting, I have been feeling really bad since a couple of days after taking the last dose of Incivek and was looking for any information
Thank you so much
Dee

[hrsepwrguy]

Elimination
Following administration of a single oral dose of 750 mg 14C-telaprevir in healthy subjects, 90% of total radioactivity was recovered in feces, urine and
expired air within 96 hours post-dose. The median recovery of the administered radioactive dose was approximately 82% in the feces, 9% in exhaled air and
1% in urine. The contribution of unchanged 14C-telaprevir and the R-diastereomer of telaprevir towards total radioactivity recovered in feces was 31.9% and
18.8%, respectively. After oral administration, the apparent total clearance (Cl/F) was estimated to be 32.4 L/h with an inter-individual variability of 27.2%.
The mean elimination half-life after single-dose oral administration of telaprevir 750 mg typically ranged from about 4.0 to 4.7 hours. At steady state, the
effective half-life is about 9 to 11 hours.

http://pi.vrtx.com/files/uspi_telaprevir.pdf

A you can probally tell from the time of post I am having trouble sleeping as well. It took about 10 days for me to start feeling better after the incivek but now my anxiety has kicked into high gear and insomnia seems to be gitting worse. I have been thinking it is because the incivek keep me feeling worn out  and tired, I was on promethazine as well and stopped when I finished the incivek which also made me tired now that I am not taking those anymore I feel like the sx of the Inf/riba are more prevalent. Just a thought and what I am expiriencing.

[JasmineT]

It was about a week and a half before I started feeling better too.  I think the incivek sx had started to really peak a week or so before I finished and my system was very taxed so part of this may have been my system recovering a little.  The riba rage is hitting me harder now and I think I would cry at pics of puppy dogs.  It may be without the incivek hitting me so hard I now am alert enough to react to the rest of the meds.

I don't know how bad the victrelis sx are but I am glad I started with the big bang with incivek from the start, but only taking for 12 weeks.  It makes the second half of treatment seem so much easier.

Hang in there, there seems to be a pattern with feeling better within 10 days to 2 weeks.  Hopefully this will hold true for you too.

[Dee1956]

Thank you so very much I have been very afraid, I did not go through this when I did a triple trial back in 2008.  Of course I relapsed but my point is that I am just so afraid, I appreciate any responses. @ Hector Thanks again, as always you are spot on.
@ Hrswspr Thank you

[frijole]

Dee
Hang in there.  That hemoblobin has to be getting you down.  I think you did everything like you were supposed to and you should be seeing some relief soon.  There is no tapering with Incevik.  That is clear from the dosing information and the FDA submission information.  Hector and Horsepwr have provided that.  

You should be feeling better but, Dee, how anemic did you get with your first treatment?  It could be that you may need some rescue drugs for your last 12 weeks.   I think what all the doctors are doing is thinking that since there are only 12 weeks left that the patient can get through it without them.  However, first, are you getting weekly CBCs?  If not request another one now and push for the results the next day.  Ask you doctor for Procrit if it is still in the 9s -- you still have a long way to go.

frijole

[Dee1956]

Thank you all for your responses, I did not know where to turn, I saw my doc on Wednesday and he said many people were experiencing problems and they did not know why.  So, that is when I realized how low my HGB was (the day I saw him) I bet he was not worried cause he feels it wil now go up without the Incivek.  I am calling this morning to get blood work.  Last night I could not get enough oxygen and thought I was having a a stroke or something.  No they are only doing every 4 weeks draws, last draw Nov 23 showed 9.9 hgb as well as low everything else.
Thank you so very much.  I thought I had planned this out but obviusly I did not and you are right I still have a way to go and can't do a thing now, I thought it would get better without Incivek.  Yes I did get anemic on last tx however I continued to work, no rescue drugs were allowed.
Thank you so very much
Dee

[desrt]

Hector / hrsepwrguy
Thank you for your responses.

I believe as the anecdotal reports of the PIs additional sx become more widely reported it's inevitable that people are going to start playing with their dosing. If FDA approval took into consideration the risk of creating resistant strains of HCV, I believe it was done with the assumption of full compliance. Maybe not a reasonable assumption.
Perhaps the doctors who Rx these drugs need to be made more responsible for educating their patients. It certainly isn't practical to dispense them one dose at a time, ala methadone maintanence.

[Dee1956]

I realize this is an old post however just saw this.  Wanted to agree with you that doctors need to be more responsible with the medication and not prescribe until they know what to expect and how to help.
I am much better, still UND, now and know much more than I did, all thanks to this forum and the assistant at my docs office.

[micheall]

Tapering off is a good question for someone here to answer.Do you taper off before or after tx?My wife told me after stopping Incevek that I looked like I was withdrawing from some drug.The after effects I had after Incevek were short lived.From a few days to a week.If longer I would of called my Dr.My senses returned back to normal and I had to return to taking my high blood pressure pills(sadly to say) when I got headaches and dizziness.Wishing you SVR.