sick and tired of being sick and tired

[streamline569]

Two more weeks and off the incivek. Please tell me I'm going to feel some life come back into this body. How ever have some of you done this over and over???? My blood work good, just slightly anemic so this has to be the incivek, I'm sure hoping anyway.( Bad Week) seems as the drugs build up to get more stressful on the body. Is anyone else feeling this????

[streamline569]

It does get harder as time goes on, but not much. Mostly the fatigue for me and just the over all tired of being sick and tired I.Haven't been back to work, I don't think I could carry on a conversation at this point in treatment or stay awake for very long, but you what if you can take the time it's your time.This is going to be of hardest thing you may have to do, so why not just pamper and rest and take care of yourself. if you can. Life will be there when you're done with treatment and who knows maybe a different life that will be better then the one you have now. I refuse to believe we are going through this for nothing positive to come out at the end. Lets just all hope to get our health back and anything will be possible again. Good luck.

[pjhep80]

i feel fine... a little tired and takes me 2 hours to get out of the house in the morning because i have to go like 5 times lol but other than that, its not too bad at all, i have some metallic taste in my mouth some eye issues sensitive to light some nausea some body aches chills fever after the shot but all my sides have been no big deal really... im only 2 weeks in so i dont know how things will be down the road but right now  its not bad at all... im thinking thats because it is not working.. .hope im wrong... working full time, no problem, took the first day off but ok after that...

[spyderman370]

Thnaks for the kind words of encouragement.
Got my CBC last night, numbers are improving -
HGB 9.4,
WBC 3.4,
RBC 2.9
HCT 26.8
PLT 152.
still feel like goldfish on a carpet. No rescues yet and no RIBA reduction. My GE believes in toughing things out I guess...13 days to go on Incivek - counting hours soon.

[oceanblue701]

The whole treatment, regardless of whichever drug regime you are doing, is a complete drag through if you ask me.
  It is really tough to feel bad and look forward to more and more of the same.
The duration of treatment is the hard part that prolongs all the issues and makes the whole thing less tolerable. But, this is the most important part. Finishing, completely finishing cannot be overstated. Just drag on and on and on and on and on and on and on until you don't have to anymore.  
The time eventually does go by. Wishing you the best!

[spyderman370]

Thanks you all for your comments. Yes, I will demand the Procrit and try and maintain my Riba dose. And Billy, yes, I am now getting very spooked by my lack of energy - breathing is getting difficult just putting groceries away. Damn this anemia stuff is brutal.I hope I get my rescue drugs tonight.

[streamline569]

Darn I did it again. I started week 11 not 10. Geez good thing for pill boxes and having drug companies keeping track. So now week 11 of incivek. I'm almost done with it.

[working dog]

wait till you get to 8..thats when you'll wish you demanded the procrit....billy

[streamline569]

PS and yes I think 9.1 is low. I started on procrit at 10.8 and dropped to 10.4 it doesn't always work for everyone, but at least I'm holding.

[streamline569]

I think he should just get you on procrit before dose reduction, that's what my doctor did but I was only on 1000 Riba. Weight based. Be careful and don't be afraid to tell your doctor maybe it's best to do it the way you think best. Good luck.

[spyderman370]

Going to see my GI Monday and address the low hgb - should be on Procrit right? - I am a t 9.1. He thinks we should drop Riba dose - now at 1200. Not sure what to do here.

I think a lot of these doctors are not really into the response guided therapy thing and they are all on autopilot.

Also, the new drug and tx information is a lot to assimilate and these guys might be too busy golfing...not sure if the medical profession is up to speed on these new therapies...any thoughts?

[crossroadsec]

I need to drink more too. I'm hitting the coffee n even coke, which I never do and dehydrates me. We're just surviving. I've got 4 more weeks. And then I'm doing the whole 48.
I'll admit there are days I just DONT care any more. Then jst now my granddaughter text me and ask when I'm gonna take her out for a bagel. She wants Nan back. Hell to the yes, I'm going all the way.
Hang in there guys.... We can do it.
Eye of the Tiger,
Karen :)

[streamline569]

No James I think as treatment goes on I forget to drink as much water as I did in the beginning. Thanks for the reminder I have to start doing it again. I think you may be right. Sleeping more also so not keeping as hydrated. I'll work on it and see if it helps.

[James10500]

Just curious are you drinking 8oz of water every hour ?  I swear that helped my sides. I know it's not going to raise your HgB just seemed to help me thought I'd pass it along.

[streamline569]

I don't know if the people doing boce are getting slammed we don't hear much from them. I guess the incivek people started first with the triple therapy. Not to scare the people who are just starting. It's the fatigue and being tired all the time for me that's really bringing me down. The anxiety and hating the site of people, let me not forget that side effect LOL. Pretty much not having any kind of a life for three months now, but really I thought it would be worse, but worse in a different way. I thought I have more stomach upset and physical pain. That hasn't been the case at least not at this point. I think I still would have chosed the incivek over the boce. I don't want to discourage the people just starting, just know the beginning is the easiest. It does get harder as time goes on. Well I guess we'll soon see what no incivek brings soon.

[James10500]

With stage 4 liver, I Hope you can hang in there and do the 48. Sou ds like Riba and INF alone a re a walk in the park compared to 3x.  I bet you'll feel a lot better.  

Are the people doing Boceprevir getting slammed like this too ?

Hang in there, you can do it !

[gstorm55]

ive had tx 3 times before and it came back,dr wants to try 3 drug tx but says i have to quit smoking and loose 30 lbs first which smoking will be an issue i no.I have fibromyalgia and the other tx caused me pain.could you give me a list of things i might have to deal with starting the first day of tx.ill have to continue to work during tx so i need to prepare mayself

[Dee1956]

You will get relief once you stop the Incivek.  I did a triple trial and once we dripped the 3rd drug there was a difference.  Of course it takes a bit since the meds stay in your system for a bit but just the psychological feeling of not having to take those huge 6 pills a day was a relief.  
I wish you all the best, hang in there, you are doing great!
Dee

[nygirl7]

Why no Procrit yet at 9?
And dont worry even on old SOC food tastes like crap, it will get back to normal after treatment.

[spyderman370]

I too have 17 days remaining of Incivek and I have a calander that I mark daily with an X. These are kick *** drug regimens.  My last shot Peg #10 floored me good. I am trying to hang on. Everything tastes like s&%$t, metalic, rusty, and chaulky crap - I have come to hate all food. Can't breathe anymore, hgb in low 9's now - no Procrit yet...and a daily NYC commute  - arrrgh. Have not lost a day of work, yet...jackass that I probably am. Thanks to all of you for co-miserating and thanks for the encouragement...I needed this.

[shanro]

Ugh!!!  I was just told it's a definite 48 weeks... this was a good thread to read... #1 I don't feel alone in this dread and #2 it's worth it to go the 48... What's a year of this when compared to the consequences... I'm gonna just keep on keeping on one day at a time... one moment if I have to... I want to be around for my daughter a long time...

[toby47]

I hear you. I was starting to think about being off the inciviek in 4 weeks myself.But that last # 8 shot was a throwback to my first shot only alot worse.Now I mix in the low blood counts,a sore throat,nausea and I'm back to taking one day at a time.You think you've felt everything it has to throw at you but it finds a way to bring you to your knees.However we have no choice.

[taccs4]

I start week 10 tomorrow and this time around I have had some pretty rough days. I have done tx twice before but only with interferon and riba, and I never felt like this. I am also looking forward to the end of my 12 week run with Incivek, but since I have cirrhosis I know that it is in my best interest to do the 48 weeks with the other medications. Although it is tough, it is a short-term loss for a long-term gain. Hang in there, you can do it!

[willbb]

his3707....says it perectly .you want to give yourselves the absolute best possible chance of success...If you don"t, and happen to relapse while taking a P.I..then you may not be able to treat until another new drug is approved. It may be years away..

You will  almost surely feel  .  at least ,somewhat better when you stop the P.I ..it is strong and doing a great job for you...but with a price

If you are chirrotic....this is your best shot .

Best to you .....
Will

[streamline569]

I just told a friend the same thing. I don't think I'm doing the 48 weeks. The odds are still good with 24 and if I don't feel well after 24 I'm just not doing it anymore. I'm early cirrhosis. When I asked my doctor just what shape my liver was in and about the portal hypertension. He looked at the MRI and said well he really couldn't say. It's all so iffy how it reads. nothing definite. He said he never found any varice. So I'm thinking I have stage 4 child cirrhosis. My platelets jumped to 85 on treatment. Going to see where they are at week 24. That' s a good sign to me that the liver is pumping the blood without less obstruction. I started tx with 60 platelets . I'm treatment naive, I'm a ILB28  CC. I have great odds so far for 24 weeks. If I can't get back to work and get living again. I'm done at 24. My choice and I'll take the consequences. 48 has  risks too. with other things going wrong.and I'm wondering if some docs are just over treating, the truth is they don't even know for sure.