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Last week on Incivek! Have a question...
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Last week on Incivek! Have a question...

Hi!

This is my last week on Incivek!  Yippee!  So far, I'm kicking Hep C's *** with this treatment!  Of course, this treatment has been kicking my *** as well.  However, my doc says every blood test result has been "perfect" and I'm responding "beautifully" to tx.  Only have to do this 24 weeks!  Which means I'm about half-way through.  Thank God because the constant nausea, skin problems, and fatigue have been getting to me lately.

My question is this:  I know everyone is different, but in general, will some side effects get better w/o Incivek?  Which ones?  How long after Incevik will I feel better?  

Thanks!
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1815939_tn?1377995399
I was also on Incivek. I felt better within a day or two of stopping Incivek. I am not sure I can pinpoint exactly which side effects were improved (less severe) other than the rectal issues, which did improve rapidly. I guess I would say that generally, most of the side effects decreased in severity and intensity except for the rash, which was/is probably due to one of the other drugs and not Incivek. (I got it in about week 10 and I still have it. I have been off Inc since Dec. 18th.) I know that generally I felt much better (more energy, less fatigue, more motivation, etc) fairly quickly. I still had most of the side effects, but they were so much less in intensity. I am now at week 37 and feel even better (not 100%, but definitely better).

It may be a good idea to ask for a prescription for the nausea. I have found that the side effects snowball if not addressed. I had bad nausea and, after getting quite ill, I finally insisted on Zofran. The Zofran worked miracles.

If you have a rash and itching it might be a good idea to get on prescription meds (Hydroxyzine oral, fluocinonide ointment). I found the over the counter stuff to be totally useless but the prescription meds really helped, especially the Hydroxyzine oral (50 mg every 6 hours). I also found that if not addressed quickly, the rash will snowball.

Hopefully you will feel much better soon.
14 Comments Post a Comment
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1815939_tn?1377995399
I was also on Incivek. I felt better within a day or two of stopping Incivek. I am not sure I can pinpoint exactly which side effects were improved (less severe) other than the rectal issues, which did improve rapidly. I guess I would say that generally, most of the side effects decreased in severity and intensity except for the rash, which was/is probably due to one of the other drugs and not Incivek. (I got it in about week 10 and I still have it. I have been off Inc since Dec. 18th.) I know that generally I felt much better (more energy, less fatigue, more motivation, etc) fairly quickly. I still had most of the side effects, but they were so much less in intensity. I am now at week 37 and feel even better (not 100%, but definitely better).

It may be a good idea to ask for a prescription for the nausea. I have found that the side effects snowball if not addressed. I had bad nausea and, after getting quite ill, I finally insisted on Zofran. The Zofran worked miracles.

If you have a rash and itching it might be a good idea to get on prescription meds (Hydroxyzine oral, fluocinonide ointment). I found the over the counter stuff to be totally useless but the prescription meds really helped, especially the Hydroxyzine oral (50 mg every 6 hours). I also found that if not addressed quickly, the rash will snowball.

Hopefully you will feel much better soon.
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Avatar_f_tn
My nausea got a lot better, almost went away, after I quit Incivek.  Some foods started tasting better (i.e. vegetables).  Other foods still didn't taste right but oh well.  My digestion (bowels) was better too.  My rashes got better too. I just had remnants of them on my upper thights.  I still was fatigued but I wasn't glued to the couch all the time.  I continued to itch (not dry skin) as an allergic response to the Riba so I started taking Zyrtec during the day and Benadryl at night (with Gold Bond triple action lotion too).  The brain fog got a little better too.  I wasn't forgetting EVERYTHING anymore, just some things :)
Good luck!  Way to go!  You are doing great!  
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Avatar_m_tn
I just completed incivek last saturday night!  Have had trouble with increased anxiety, sleeping trouble, and itching since quiting. today (day 3 off incivek) seems better so far... but generally I still feel about the same as before finishing... hoping that improves!!  good luck to you!
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2054929_tn?1333949470
Thanks for the info!

Even though I've been feeling worse lately, I'm excited to be at the half-way point and looking forward to no more Incivek.

My doc prescribed Promethazine for the nausea.  I don't really like it so I will ask about the Zofran.  He said just to take Benedryl for the rash. I'm not thrilled with it, either and will ask about Hydroxyzine.  

A friend suggested Dramamine.  Anyone have any luck with that?

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1815939_tn?1377995399
I know a few docs order Promethazine but I think Zofran works a lot better and it prevents the nausea. I also think Zofran has fewer side effects. Of course, it won't work for everyone, but it is worth a try.

I found the over the counter meds (benadryl, zyrtec, loratadine, hydrocortisone cream) to be useless. They are not strong enough if your rash and itching is more than very, very minimal.

Both the nausea and the rash are systemic. They tend to get worse and they tend to snowball into other problems (in addition to the nausea,  rash, and/or itching) unless treated immediately and aggressively.  Many docs don't seem to get this.

I was miserable for months before getting proper treatment for the nausea and rash and itching. I cannot tell you how much better I felt once they were under control.

I hope you find something that works for you.
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2054929_tn?1333949470
Hi.

I don't post much here.  Mostly, I look for info.  I'm on my last week of Incivek and have been UND since week 4.  Doc says all blood test results have been "perfect".

Most sx have been relatively mild.  Recently, things are getting worse.  Constant nausea, NO appetite what-so-ever, itching with weird rashy sores.

To make matters worse, not only am I very cute and popular amongst my friends and family, I am also very vain.  I have been looking like SH*T more and more lately.  Pasty, sickly, awful complexion.  Sores on my corners of my mouth.  Big pimple-like sores on chin, mouth, chest, front of legs that are VERY visible.

I'm the kind of person that my friends and family look up to and rely on.  Lately, I can see a lot of shock in people's eyes when they first see me.  The only reason I'm not freaking out about the looks thing is I know I'm kicking Hep C's ***.  Plus, I'm trying to maintain some dignity through all of this.

My "philosophy" on it is if I know how much I'm loved and how much people rely on me then it is my responsibility to be the best me I can be in life.  

By the way, I'm not conceited, I swear!  I'm just not very humble!  (Heh, heh).  Hey, I'm smart enough to know that I'm cute and that I'm a strong person on the inside.  And like I said, I'm vain enough to know it, too.  Not conceited.  Vain.  There's a difference, right?  Guys?  Hello....anyone?

Oh, I'm funny, too.

OK.  Just wanted to reach out a bit.  I feel very alone sometimes in spite of my supportive loved ones.  It's hard for them to understand.

I'm grateful I found this forum.  Best one out there!
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1116669_tn?1269146866
I felt better nearly immediately. In terms of functioning the contrast between being on and off was dramatic!
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2061362_tn?1353283118
I felt much much better. Got my appetite back, no more nausea, best of all no more fat fests and just simply freedom. My rash got much better as well. I was hoping my hgb would also improve, but it has not so far. I did not stop the fat fest immediately, I kept that up at the same times for about 4 days, then slowly weaned myself off the fat. I did not get the  incivek "hangover". FYI, my Dr. finally relented and prescribed fluocininide for my rash, it worked fairly quickly to relieve the itching, and others mentioned Zofran for nausea, it was a blessing to me.
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Avatar_f_tn
I understand how it changes your looks, with the anemia it makes you pastie and pale, many break outs and I have horrible bloating! Can't fit in most of my clothes! And my hair is falling out and getting very thin. I get tired of the shocked look on people's face at how bad I look, I can assure them I feel just as bad as I look. The anemia and respiratory problems and fatigue are unbearable. But I will keep the hope that it will all be worth it when I'm cured, thanks for listening to me whine! ; )
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Avatar_f_tn
My nausea was gone within 2 days. lost the zofran in the bathroom drawer sonewhere. more energy...anal stuff left completely in 3 weeks but was better instantly. skin and hair feels better.
Lossed all the weight i gained in 9 days by a high protein diet filled witg veggies and fruit.

incivek saves lives, and i would take it again in a heartbeat even though I have some choice words for it!!!!

I am still dealing with anemia:( (from riba)

Best of luck! And congratulations. looking forward to your SVR:)

Best wishes,
Laura
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Avatar_m_tn
I am going to start my 11th week with Telaprevir and now I can see the end of the tunnel. The PCR at week 4th was negative and I hope that at week 12th will remain negative. To me the effectiveness of the triple therapy compensates by far the side effects and there is no doubt that Telaprevir is a revolution in HCV treatment.

Carlos
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Avatar_f_tn
I am 2 year post op liver transplant.  Received by first shipment of the Incevik, interferon and ribavirin today.  Yikes!!!!  You would think they were shipping out plutonium.  I have been on this site for about a month and have found the information and suggestions to be invaluable.  Did the 2 drug tx several years ago and couldn't tolerate the mental and physical side effects.  I had no support, supervision or dialogue with my "team".  However, this time it is completely different and feel confident I will be closely monitored.  Have my lists of suggested otc meds and prescription meds ready, have contacted a Compound Medicine store for "rectal rockets" availability, am on anti-depressants, have a grocery list with foods that have a high fat content. Please keep posting and sharing.  Also, how do several of you know about all the lab results and what else should I be aware of?   I don't know if I should share (or warn) my co-workers about my tx.  Would like to know how you handled this.  Hoping all of you are getting good results.  
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Avatar_f_tn
Oh my, you are not whining at all.  I am sad to hear how this is affecting
you, and I appreciate your honesty.  Hopefully you are being treated well and your doctor/coordinator are being sympathetic towards your symptoms.  I start tx this Sunday.  Keep posting, you are not alone.
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Avatar_f_tn
Amen!!!  I pretty much lost my vanity when I had liver cancer, followed by a liver transplant.  I knew I looked like hell but couldn't have cared less.  I know how I will look once I begin tx (Sunday), very humbling indeed.  I can relate to you feeling as if no one understands, when I know they really care.  I think they are afraid for us and are aware that this could be the last chance we have of surviving hep c.  I am 1 of 3 transplants being treated with Incevik and have been told they are doing well.  Wish I could talk with them in person.  I refuse to play the part of martyr and when I feel lousy and ugly I will allow myself those feelings.  Just keep in mind that they do not last forever.  Keeping it real in KY. hugs
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