I don't think i can do one more week,,,,,

[snowbyrd]

Been up for hours with fever and pain, I did my 15th shot on Monday and i feel like i just started tx. I started getting my riba rash back yesterday, which took me forever to get under control at the begging of tx. My eyes are so bloodshot i can barley see and my head is pounding. Funny thing is i got my labs yesterday and it is the first time that my nuetriphils and wbc counts are coming up on there own. I stopped the nueprogen 3 weeks ago, it was not working for me and too much pain. My poor hubby says my body has had enough. I still have a long way for my blood to get normal  ANC 1.1 and wbc 2.0.  I was only planning on doing 16 weeks tx but i think my body is saying enough. Does anyone know if i should continue until Sunday P.M with the Riba or should i stop it now? I was UND at week 4 and geno 2 no liver damage. Thanks Anita

[ladybug52]

You know we all have our own slants on tx duration, and you know how I feel!
I did 16 shots and an extra week of riba. That means I stopped shots 3-23 and stopped riba 3-29. I have no idea if I'll clear, but for me, the sides have not cleared. I have felt MUCH better, don't get me wrong, but the first two weeks I  was catching up on sleep, and the week-ends for some reason still have that shot -weekend feeling. Fatigue, intestinal disturbance, sleep problems. Really, not near as bad as shot weekend, but I was so looking forward to more immediate fun/activity once I quit. I anticipated immediate results, in spite of the fact that others have c/o post tx sides. I really thought my shorter course would eliminate that.  I guess I was wearing rose-colored glasses!
What I'm saying is, IMHO, if you're miserable now, stop because the meds are still going to be in your body for awhile and it takes some time to get back to normal.
I want you to be feeling good when you celebrate winning the group naming contest whether it's in Canada or the Islands somewhere. The other bird and I are not particular about where, right pigeon?
Bug

[snowbyrd]

Thanks for reading, I guess i will take the riba till the end of the week. I know it is going to take my body a while to get back to pre tx, i just can't justify putting any more of this **** into my body. I have a good feeling about staying UND, and i think you will be fine. You did 16 weeks of peg intron and i think you can do 12 weeks short course if und at week 4. You will be fine.
Ya I'm looking forward to the big Party, What Island do you and Pigeon prefer? It is fine with my hubby, at this point he just agrees with everything i say.
So have you decided when you will get your PCR? I can't get my done until July, we are only able to get one every six months in Canada. Two birds and a Bug......kinda sounds like a Bob Marley song......Jamacia is my favorite Island.

[Kalio1]

I don't think a week either way affects your chances very much.
Im not a big proponent of cutting tx short because I relapsed but a week either way doesn't make hardly a blip on the statistical chances of success.

Sorry to hear you are having such a lousy time, hope it improves soon.

[friole]

Anita, it is hard to justify continuing when you are so sensitive to the meds.  Your ANC, by the way, looks "marvelous, darling."  I don't see taht you even need the Neup.  Still, in the long run, it is better to do this once and suffer the week or two more, than do it again.  If it were me, i would do the full 16.  

frijole

[amommy]

I'm sorry things are so tough.  You have done a great job to get this far.  I know I'm in the minority, but I wouldn't think twice about stopping.  These meds are very toxic and it seems like your body has had enough!  I hope you are starting to feel better VERY soon.  Life does exist after tx, it just takes a while to get there.  Hang in  there!

[goldyn]

How are you doing? you did 20 weeks right? I go for my 6mth post in a couple of weeks, my hair is coming back but its a slow ride, Do you still have any sides? Good to see you post.......

[Myown]

sorry to hear you are having such a hard time.

I asked my NP "how long do I continue to take the riba after my last shot?"

She grinned and said that at the end of tx after last shot, I can stop riba immediately cuz it takes 6 months for riba to leave the body so there is plenty in my body at that point without having to take more.

That makes sense to me, but who knows what I'll do when I get to that point. I guess its best if you see what your doc advises.

good luck!

[sindog]

I went 48 weeks of shots but stopped riba after my last shot, so I only took 47 weeks of riba (I am geno 1a). My doctors said I had enough. I cleared 6 mos tx last week and am free.

[goldyn]

Just try to hang on as long as you can, you dont want to do this again!!!
your having a real down day, but you will get through it like friole said your ancs look good, sorry you feel so bad but most of us all have had days and weeks like that, I know when it gets to the end  its easier to just let go early,  but hang tuff ,
                                     Blessings
                                                   Goldyn

[jmjm530]

Sorry you're not feeling well. As an alternative, you might consider taking a few days off from the riba -- or cutting down this week, then taking your 16th shot and making your 16th shot the last day for everything -- the idea being that given where you are in treatment and your genotype, the peg is more important than the riba. That said, one week here or there probably won't make much of a difference, so in the end follow how your gut.

Other things for you and your doctor to take into consideration with the shorter course are how much liver damage do you have, the sensitivity of the week 4 test, were you on weight-based or flat 800mg dosing, did you have good compliance up until now; and of course the symptons you're describing.

Hope you feel better soon,

-- Jim

[orphanedhawk]

If I had no liver damage I'd stop tx, yesterday. My thighs are already aching this morning just knowing its another nuepogen, day.
     I think part of our confliction is from our bodies which speak to us saying," stop poisoning me!"    
    If you feel good about your decision, then go for it. Good luck.

[l-horn]

Hang in there !!! I just saw my doc today ( I do shot #33 tomorrow ) and I feel great but I felt pretty bad for a while. It peaked around 24 weeks. Just hang in there. Things will turn. You're body is just getting acclimated to the meds. Just HANG IN THERE !! You can do it !!

[snowbyrd]

Thanks for all the support. I drugged myself at 8:30 this morning and it is now 2:45, i just got up. My head is pounding and i can't seem to move my eyes to the sides without going crazy with pain. I can't just keep drugging myself, that can't be good for my liver. I have a fever again and if the kids were not coming home from school i would be back in bed.

Jim, it seems like all this started when i took my interferon on Monday, you mentioned that maybe cutting back the riba for the last week, should i do half dose. I have no liver damage and i feel like i did the time i ended up at the ER in Feb. The DR there told me that when your nuetriphils start to rise from such a low number...it's a good thing to have a fever because it helps bring them up.
Does the Riba really stay in your system for 6 months? And how long does the Interferon stay in our systems?  Jim i have been sick through this whole tx process, i can honestly say i have not had one day without an issue. I'm no wimp i have given birth to four children and never really been sick but this is NUTS. The other issue is my weight, i had something to eat when i took my riba this morning, and i know i could not put one thing in my mouth right now,just drinking gatorade. I can't go the rest of the tx without eating.  thanks for listening everyone.

[anise]

We all have sympathy for you here.  The treatment is nothing to laugh about, that's for sure.  I must say I thought I was lucky to only do 24 weeks (compared to 48+ weeks) - only having to do 16 weeks is amazing.  Is that what they are recommending for 2b's these days?

If I were you and it is only 1 more shot, I would go for it.  That way you will have no regrets.  Just my thoughts.  Hang in there it is almost over.

[jmjm530]

Based on what you just said --  not only regarding how bad you feel, but the fact that you have no liver damage -- then maybe stopping everything now makes the most sense, if you and your doctor are onboard.

As others have said, one week here or there probably isn't going to make much difference and given you were non-detectible at week 4, the odds certainly have to be in your favor for SVR even stopping at week 15.

I just mentioned an alternative approach before, but I'm not going through what you are, and it also seems clearer that it's the interferon making you sick, not just the ribavirin. How much added benefit you would get from going on half dose ribavirin for a week may not be enough to warrant making yourself even sicker by taking it. Yes, the riba stays in your system awhile so even if you stop today, there will still be some in your system for the next weeks/months, although hopefully the anemia and other noticiable riba side effects will start to disappear within a few weeks.

Hope you start feeling better soon.

-- Jim

[woogie dog]

I went on well butren after week 26 completed tx48 svr after 72 go for blood may2 all the drugs play a mind game, Ican see that now that i am comingdown from them.but i still cant type  

[crazycanuck]

hope you can hang in there. maybe the warmer weather coming friday will give you a lift.  this dull cold wet stuff is depressing enough without what you are going through!!!
all the best to you!
laura

[snowbyrd]

I'm stopping now. I'm not myself, my husband is scared that i'm killing myself and i yelled at my 7 year old when she came home from school. Hubby say's i look like I'm dying and i can't remember things and i get to the point where i start pacing. The other night i apparently was speaking some other language in my sleep and i hit my hubby in the head, then he said i would just bolt out of my sleep and sit up. I ask people the same things over and over and i forget things that are very important. I know what brain fog is but this is some kind of freak show. My DR is not in until Monday and i have an appointment at the clinic so i will let them know then. Thanks for all your help Jim. I will still be posting and trying to support others.

[jmjm530]

I don't see how anyone could find fault with your decision. Hopefully you will start a little better within in days and maybe a whole lot better in a week or two. Just be patient but it should be uphill from here. Wish you the very best. Just try and rest, keep up the fluids and try and eat at least a little. You should also try and force a big smile if possible because you made it -- maybe not to the proverbial 16 or 24 weeks, but certainly close enough not only to have an excellent shot at SVR but to be very proud of how much you were able to endure. Not sure many here would have lasted that long considering your side.

-- Jim

[ladybug52]

I'm so glad your quitting and support you completely. I know everyone wants the same thing--for you to get better. But our perception of 'better' is influenced by our belief in the tx meds vs our fear of the tx meds. Personally with your severe, debilitating sides, your dark thoughts at times and the anorexia you've gone thru, it's a no brainer to me as to what is best for you. It's not as if you have severe, moderate or minimal liver damage, you have none. And you have a family that needs their mommy back, a husband who will start feeling better when you feel better, and most importantly, a bird and a bug waiting on a party!
Hugs, Kudos for the choice,
Bug

[rosebud57]

well if that is what you decide, who could blame you. i can't do this anymore, i was able to stay withit with hep supporters the last 4 weeks or so.  this is not easy. my last inj 4-10

hopefully you've had enough to remain svr (same to me).

rose

[pigeonca]

I've never been to Vancouver, always wanted to go.  Same with the Islands, never been.  I'd really love to go to Cuba, but we Yanks aren't allowed to, but I just love afro-cuban music so any place with Cuban-quality music would be terrific.  Jamaica, yeah!  Or even Las Vegas, which is very affordable if you don't gamble.  (I'm good for about an hour or two of nickel video poker, and then I get bored with it.  Lose about ten bucks.)  I also love to visit places of natural beauty with hiking trails and good restaurants.  Santa Fe, Sedona?  Colorado?  And I love Montreal in the summer.

But I'm sorry you're feeling so rotten, Byrd.  As you know, I could only tolerate 12 weeks of riba and 13 of Peg-Intron before my immune system started attacking my skin.  And like you, Bug, I reckoned that such a short duration would result in milder post-tx sides.  Ha ha!  Yesterday marked 4 weeks since last shot.  Although I'm feeling much better, even going to the gym (doing way less that I used to before tx), I'm in no way ready to work full-time.  I'm still not able to sit at a desk for 8 hours straight and work productively.  Still having concentration difficulties, fatigue, skin rashes (but abating day by day), and my hair is still falling out.  Also, post tx I developed extreme dandruff, which I've never had in my life.  But it is kind of fun to muss my hair and watch the snow fall.  Have a derm appt. on 5/9, can't get one before that, it seems, unless I see a doc who doesn't know my history, which scares me.  So I'll wait.

Re PCR timing, I'm having blood drawn tomorrow and will see hep doc Tues. 5/2.  Since my last shot was 3/21, i guess this is the 4-week test.  After that I don't know their schedule, but I do know that there are at least 2 more PCR's, culminating in the 6 month test, should I have the good fortune to continue UND for that long.  Sweet dreams, talk at 'ya guys manana.  (Mexico's cool with me too.)

[pigeonca]

Congratulations on calling a stop to suffering.  I didn't mean in my last post to frighten you by describing the continuation of sides after tx; believe me, within just a few days of your first omitted shot, you will feel the difference.  Improvement is slower than I expected, but I can clearly feel myself becoming myself again.  

The way I figure it, if I don't stay UND for 6 months, then I'll gather up my resources and try again next year.  In your case, being younger and having a healthier liver, you could probably wait until they have new meds.  But I believe we will all be SVR.  From my lips to God's ear....

[friole]

I respect your decision.  I hope that your body and mind heals.  The interferon has a relatively short half-life and your body should be rid of that soon.  However, it is correct that the ribavirin will leave residual side effects for as long as 6 months.  Maybe longer if other damage has been done.  I hope that is not the case. I don't knwo how you have done this with 4 young children.  You are a champ.  Happy healing.
frijole

[rosebud57]

i stopped too. so as bug describes i have joined the 2 birds, a bug and a bud club...
rotten sides.  sad to hear that at 4 weeks post tx still have troubles.  

hope you feel better soon.
rose

[GSD]

Sorry to hear you're having a rough time of it.  One must do what one must do.  Only the individual can ascertain what they can or cannot handle.

Hope your feeling better soon.
tata
GSD

[illo]

I'm not going to suggest you do this, but a friend of mine went SVR by cutting the dose behind the MD's back after a few weeks.  He was having a very rough time of it.  He has been SVR for 4 years now.  Instead of giving up, maybe you can try cutting down the dose.   Just a thought.  Sorry you're having such a difficult time of this.