9 Days left on Incivek but struggling

[Cyn621]

I have 9 days left on Incivek but honestly, I feel like I am dying a slow death.  I no longer go to work and I can barely breath.  My doctor is trying to get me to the end of the 9 days without having to give me Neupogen.  My WBC is 2.0 and my Platelet Count is 109.  


I am seriously considering just ending this now and taking my chances that the Incivek did it's job.  At 4 weeks I was undetectable.  This is my first time treating. I am genotype 1.  Had a liver bioposy at the start stage 1, grade 1.  Viral load was 6.2mil.  All liver tests AST/ALT in normal range  I keep thinking, what difference can 9 lousy days make and I am so sick at this point, I feel like I need to save myself.  HELP!

[Fightergirl]

I just finished 12 weels of Incevek and I too thought I was dying.  It was horrible, by week 2 I could not work and cried and threw up and shook and literally called my doctor everyday.  I cleared at undetectable at four weeks, but at week twelve test, my viral load was 150?????  They are keeping me on Peg/riba for 24 weeks and blood test in 6 weeks.  Did anyone else have the virus come back at week twelve and what are my changes on beating the 150 on Peb/Riba?

[frustrateddee]

thank you because i am on wk ten and feel like i am dying and at a crossroad of what to do. really wld like to quit now but dont wanna let close ones down. forcing myself to continue because of family and friends but am miserable and thinking irrationally at times. so tired of being this sick-crying way too much. dr. appt tomorrow........

[sunshine415]

well, I honestly hope within the next 24 hrs you would have to see some type of improvement. if during the nite or early tomorrow morning, YOU are still having that feeling of not having anything left in you. Only YOU and YOU only know what your body is trying to tell you... CALL that Dr. firmly let him/her know. That your experencing a horrible bout with some type  of side effect. and that YOU need to be seen immediately.... Today ,there are times ,where you need to be your own type of DR. (a bit)!!! and to be sure YOUR UNDERSTOOD ....it's your body of health ... and they certainly aren't perfect... please be sure to let them know that YOU NEED to see your physican tomorrow. and YOU know what YOUR body is wanting to do...... be sure and blessing your  way ...... even tonite ,go to the emergency room...even if it gets a tad worse.... take  care honey.....

[halbev]

I have been finished with Incevik for 4-5 weeks, and just now getting over some side effects that came on after I finished. Rash is almost all gone and rectal problem getting better

[ConcernedWifey2]

I was told @ the doctor's office that my husband is probably going through withdrawal, after stopping 12 weeks of Incivek treatment. I tried to get a length of time that it would last, but I couldn't get a definitive answer.

[Gizmo103]

In case anyone is curious about the AFP study I mentioned earlier, here's a link:

http://www.internalmedicinenews.com/news/gastroenterology/single-article/afp-level-predicts-mortality-in-hepatitis-c-related-liver-cancer/9089baeaa8.html

[Gizmo103]

I'm just starting week three with Incivek. This is my second time on treatment. And yes this new triple therapy is much harder than the dual therapy. For years my alpha feta protein were normal. I don't drink and i eat all organic foods, etc. Here lately my numbers started to climb right before starting this treatment. It's my understanding once the AFP climbs, you've only got a few years left. I'm not even 50. As horrible as this treatment is, I know dying from liver failure due to HCV's effects is much more horrible way to go. I wouldn't want to stop short and be left to risk damages if the virus returns. Work with your doctor, take the extra meds. I had to with my first round of treatment and I'm sure I will with this one. It will make u feel better I promise. Hang in there. You don't want to risk the alternative - trust me. Take it from someone who is a little more progressed in the disease of HCV,with  this stage I feel death nipping at my heals and I will stay strong and stay on this treatment just to have the chance to be rid of this. Remember drink lots of water!!! It will help ease some of the side effects.

[katla]

We can never know someone else's pain.

I just wanted to wish you a successful outcome whatever course you choose and hope that the remainder of your treatment is tolerable.

Sincerely,
kat

[redsurfer]

wow.. hgb @ 9 ..you need procrit girl .. forgive me but your dr sounds like a mess... i would go see an blood specailist asap and get that under control ..maybe you could call someone tomorrow as an emergency ..i know its hard to think when you feel like this but we are worried about you... my hgb continued to go down after i was off incivek and i was already on procrit .. and btw my wbc's were down to 1.2 and i didnt get nupegen ...

..unfortunately we all have to be really proactive with this tx ..it is a new drug ..my hgb went down to 7 at week 8 i seriously had colllapsed veins so i know what 9 feels like and its bad ...im at 9.7 now and i still feel really bad cant breath heart rate up ..all that stuff ..i went and got a second opioion cause i was thinkin i was gonna die.. had all these tests ..they said my heart was ok and things were starting to go back up ..man this is hard ..
dont be afraid to call your dr or get a new one if he /she wont respond... this is your life here !!! you are worth it  if you dont get the right helper drugs you may not be able to finish rx.. and since you already cams so far that would be as shame !
i really feel for you and i hope you are ok and feeling better soon

[OdinLovesLife]

Hey Billy. I think you are a unique human being who is experiencing some very common side effects of HCV treatment. You are kind and care about people. I repect that. Everybody needs to use their own judgement about advice given here.

[OdinLovesLife]

Hey Cyn I hope you are feeling a bit better after making your decision. The first thing I wondered when reading your post was that you might be anemic so why is the doctor talking about Neupogen? Something doesn't sound quite right. Others have mentioned that later in the thread.

My suggestion to you is why not get a second opinion on your treatment? Talk to another specialist. Take your test results and ask how you are going. Ask how that person would respond to changes in your blood counts and other side effects and why. If your current doctor has been doing the best for your circumstances, then you can walk away confident in your current doctor. If not, you can switch.

The right doctor makes a huge difference.

Best wishes.

[streamline569]

Billy you should tell your experiences as far as giving advice people should know not to take advice unless they talk to there doctor. I personally like hearing what you have and are going threw. We all seem to react differ to the drugs but Cyn has to get to her doctor because he is the only person who knows her history and what to do to make her stay on the incivek. If he's not doing anything to make it easier for her then he's the wrong doctor unfortunately. The risk we all take of getting the wrong doctor

[streamline569]

I don't know if there is incivek withdrawals but I had the worse week of my life when I stopped and I think it was because the incivek kept me sleeping and tired, fatigue and when I came off I felt the full force of the Riba that was obvious to high a dose for me. Reducing it straightened everything out. But waking up after sleeping for 3 months because that is what I did. I had very few bad sides from the incivek while on it. Just the itching and sores. It knocked me out for 3 months and I think that was a good thing to get through those months. I'm awake and coming more alive everyday. Still fatigue but nothing like on the incivek. Hopefully my anemia will get better too as I do take procrit but it just kept me stable on the incivek so now maybe it will actually bring it up to stop the fatigue. Some people who don't have the riba reaction will come off the incivek with no problem is my guess.

[working dog]

i think you can be a great help here..i'm not trying to say that i don't appreciate proven info....but i also think there should be a mix ...some old info...some new ....i worry about some folks not feeling like posting their sx...or how they feel...if theres a car accident i help first....i've helped many people in the past not worrying about if they would blame me for helping...i even carry fire extinguishers with me as well as all kinds of tools and medical stuff to help...as you can see i knew i would get pounded for trying to help cyn...i did the best i could to help...after reading many posts i like to think i can tell when someone is really hurting....the internet can be so misleading....sorry about that ...and again...thanks for the info.......billy    

[ceecee444]

thank you for directing me to that site it helped out.

[lynda607]

You certainly are an anomaly so I guess it could be said old proven info does not apply in your case.  If my asking you for supporting data seems like a cheap shot to you then I must be confused because I was under the impression you have benefited from old proven data provided to you by long standing and knowledgeable members.  

[hrsepwrguy]

http://www.medhelp.org/forums/search/75?query=itching

[ceecee444]

I'm on 6 weeks of the 3 combine doses of riba+pegas+incevik. I was wondering if anyone has had an issue of severer itching all over the body? Along with light headiness and dizzy.  This started about a week ago so I took some benadryl and it stopped the itiching but I don't like taking the benadryl ever day...but anyway my question is does anyone have the itching issue? I never had this issue when I was on the 24 weeks of riba+pegas so believing this could possibly be do to the incevik.

[working dog]

come one linda....this is my personal experience ...i thought thats what we are suppose to provide here....am i wrong??? thats what it use to be...whats changed??..pretty soon folks will feel funny writing their sx for fear of being attacked by cheap shots....thats not what the forum is about is it?? isn't it about text + new experiences??..if all we have here is old proven info we could just goggle that...why have a forum??? i'll keep being honest throughout my tx in hopes to help others using triple tx as well as get ifo for myself....billy
  

[can-do-man]

Lynda for as long as i been on here there have been quite a few, well really very very many that have done incivek though trials and i cannot recall any of those saying anything about "withdrawal" after stopping the drug.

If that would be the case one would think they would have to ween people off the drug instead of stopping cold turkey........ Also it would need to be listed as of of the side effects, i'll keep looking but it's my opinion this is just another one of those internet rumors be started that has no basis.

Hang in there and good luck when you do start......

[willbb]

You seem to have made a desicion on the stopping of Inci  a week early and no-one here   would give you any flax for that. Everyone makes their own personal decisions (hopfully with their doctors advice included)  about what they feel is best .
Everyone here just wants to see you succeed
I would concur with any folks above that said it may be best to seek out a more knowledgeable doctor  ,if in fact he  wasn't willing to discuss procrit for you at HGB 9   and thought neup would help that.
Please let us know how you are doing and good luck...
Will

[lynda607]

If you are saying that patients may experience "Maybe some kind of withdrawal" after stopping Incivek could you please provide study data or supporting medical data that indicates a patient may experience physical or psychological withdrawal upon cessation of Incivek,  I've only seen this stated as personal testimony from you and few others and would appreciate supporting data because as we all know speculation doesn't or first hand experience doesn't necessarily make it so.  In my quest for accurate information so that I might be better prepared for treatment and "learn something" so I will succeed this time as you stated previously, it may provide valuable insight, if of course, there is any supporting data.

Thank you

[working dog]

i was feeling great at day 2 and 3 after i stopped the incivek...i really over did it...then i tanked...hgb went way down...its taken a couple weeks to adjust back to the riba/interferon...maybe some kind of withdrawal...but the riba/interferon is so much better then the incivek for me...i can't tell you...i'm sick..have a bad rash...eye site not that great..throat sore...upped my procrit to 60000per week..but i'm having a much better time...these sx i can live with...mentally i feel so much better too...just be ready for an adjustment time after the incivek...take it slow when you start to feel better..and please keep posting...it will help everyone figure this new tx out....good luck....billy

[frijole]

I rather agree that ending the Incevik may not end the anemia.  It should not take a week to get the results for a blood test, but I am battling the same thing. Good luck with your treatment.  I recommend changing doctors.

frijole