Not looking for sympathy (yet- saving that for later)

[AjaLee]

Anyway, I'm treating for the second time, this time with Incivek as well and I feel incredibly worse than I did after MONTHS the last time  
It's only been 10 days!  I have no intention  of quitting, but wonder if anyone else has had such an experience.  

I'm in the maybe half hour a day I don't feel absolutely horrible, but I've had constant, splitting headaches headaches, no appetite and have given up trying to force more than 10-15 gr of fat down for the incivek (it will come back up) sleep for  18 hours a day if I  can and occasionally start sweating profusely and run to the bathroom and lose something from every orifice (sorry - too gross!?!)  Last time, I managed to work for 7 months , now I 'm counting down the  days until the end of December to take a leave of absence and then will  retire at the end of the year.  I'm 10 years older now, but still...

[streamline569]

I disagree that the sx have to be bad to know the drugs are working. That's were you partner up with your doctor. He should have a solution for each side so you do not suffer as much. I don't understand doctors who let you hemoglobins drop to low low levels before they get you on procrit. My hgb dropped on my 4 week labs to 10.8 and my doctor was able to get procrit delivered the next day by my special pharma. week 8 they dropped to 10.4. where would I have been without the procrit and an emergency room? Good call on my doctors part. I stabilized at 10.8. I am off incivek and my next blood test week 16 will be interesting to see my hgb levels. Good doctor good management before a crisis happens. Good luck to you, it's not easy.

[redsurfer]

i treated twice before with interferon and riba.. this time with incivek addd... much worse this time and i got "the rash" ..im at week 16 now and feeling alot better ..getting that incivek out of the system was a relief..  

make sure you check your labs often if you feel really bad .. ! the drs dont  know everything yet ..its a new drug you have to be pro active and call them if you feel horrible ..or they will assume you are ok ..and you may need helper drugs..and it sounds like you might need anti nausea drugs ..i take zofran it totally keeps me from vomiting ..

its hard ..but hang in there this drug is curing so many of us .. its worth it...

[scoleman]

My worst side effects were during the first 5 weeks.  I'm beginning my 10th week on Incivek  During those first 5 weeks when I wasn't sleeping or just staring into space in a mental fog.  I would remind myself that I felt so bad because I was taking some very powerful drugs that would obliterate my HCV.  I guess I'm willing to suffer if there's a purpose to it like SVR.  I also liked my nightly visualization of the sniper-rifle toting anti-HCV drugs killing the virus.

Hang in there, Sherry

[dreamcat]

I had read that somewhere on this Forum about the sicker you are, the better the drugs are working --- it was a bit disconcerting to me, as my sx have been generally mild, compared to some other people, so I called the specialty pharmacy where I get my meds (Vertex/Incivik) -- they told me there are no studies to support this theory, and she herself had never heard of anything like that.... needless to say, i felt much better hearing that... :)

[crossroadsec]

They dropped to 5 hemo n 11 platelets. Yikes! Whattamess! Karen :P

[slideman]

Just wondering what your cell counts were when you got units of blood.  My health care provider hasn't even mentioned it that option.  I have inquired about epogen and/or neupogen to combat this but was told I had to have cell counts below 10.  

[JasmineT]

By the way, the pharmacist told me the worse the sx, the more it's working.  Hopefully the meds are kicking some virus but. :-)

[crossroadsec]

I tanked weeks 8-10 or thereabouts. Barely crawled out of bed to work. OMG. it was kinda insane... Then one by one the se started dropping and I got 3 units of of blood and heck! Week 15 is here.
I know exactly what you're describing. It's a matter of survival. And hopefully won't last that long. I've only seen one person on the forum have a lot of sides long term. There seems to be a trend that it's toward the middle to end of Inhibbies that it gets really bad. Hang in there. It DOES get better. I'd even promise you that.... xoxoxo karen

[joemc34606]

Like working dog said have your blood levels checked you could be anemic already and need some rescue drugs. Good luck. Joe

[working dog]

maybe get blood work done every week to keep a close eye on if you need to bring in rescue drugs...the incivek for some is really tough...it was so hard for me...the good thing is a couple weeks off of the incivek and soc is a piece of cake ...at least for now...way easier....this was a great week for me....just kept getting easier....but i don't know what to tell you about the rest of the time on incivek....can you take off now and go back to work a few weeks after the triple???good luck......billy

[JasmineT]

I am sorry to hear you are feeling so poorly.  I have had many bad days, foggy, dizzy, exhausted, headaches, muscle aches, nausea, sweats, but have not had the orifice issue.  Very lucky I guess.  I still had some days I could not get out. Of bed.  

I just started week nine, week 8 was probably my easiest so far.  Don't know why.  Week 7 was the worst.  I was worried it was all downhill but it's been getting better.  Prior to that I had up and down days, mostly down Sunday and Monday and starting to get better until Friday shot day.  So the good news is you may not stay this bad, hopefully.

I have not treated before but have seen a number of posts from others that have and have said this time was worse for them.  A number have also said they did much better after week 12 when the incivek was done.

Glad you are hanging in there, this time will be the last time!