This might be a useful site/open thread too!

[eyehavegr8life]

Good morning....hope everyone is well! I have to rush to work but wanted to post this FREE patient advocate site address. It has alot of info that can help us!I'll be back here tonight! Positive thought your way, Annette
www.patientarepowerful.org

[shebee]

Ok...these things happen.  Hubby has been so unreasonable at times that I was ready to send him to his mother.  LOL!  Oh, hell, I was ready to send him anyplace!  LOL!

At first I took him to heart and was crushed.  Soon I realized that it was the meds.    Of course if I mentioned this, it made things worse.  LOL!  Now, I just agree and say, "Yes, Honey."

He is taking off work for a while to do tx.  Last time he worked at least 60 hours a week, and was very sick and exhausted.  This time around, we decided that I would work for a while and he would play Mr.MoM.  Ha! Ha!  He is still very sick and sleeps non-stop. He is on stronger meds now.

Some days he cannot even function.  (This is not his normal nature.... he is a work-horse...so I know that he is not taking advantage of the situation.)


Anyway...he was supposed to manage the checkbook and pay bills, too.  It was a great plan, but not a viable one.  Soon I realized that he could not even make it to the bank to put a deposit in on time and our bills were late.  This is not like him at all...it is the MEDS!  I took back this duty.  
He has had a few riba rage fits concerning this.
HE WAS "GOING" TO DO IT...I did not give him a chance.  
(One time I waited 1 1/2 months.  LOL!)  

Educate your family.... let them know that at times you will be totally unreasonable.   Please let them know that you are really a normal person.  Let them know that at times, you will be horrible.... AND LET THEM KNOW TO BE   N I C E    TO YOU!  nOTHING soothes riba-rage like a kind word of encouragement and a cup of hot chocolate!  ...and if all else fails...tell them to LEAVE YOU ALONE FOR A WHILE!!!  ...AND WORK IT OUT FOR THEMSELVES!

Don't stress out because you are brain-fogged.  Don't feel unnecessary guilt. Soon tx will be over and you will be ok.

Tx will pass...
Shebee

[cuteus]

Thanx everyone for your input and ty for the links, hepguy.  
downthisroad: i went from 376,000 to 5760  at 11 1/2 weeks and cleared at 24.  I don't think they will extend even if I ask.  but i got rx for extra pegasys,  sooo... I will make sure of checking blood work through PCP, because of the anemia.
I still got time to look for someone, if I need to,  I guess.
\\\

TY again

[Revenire]

Without significant damage -- stage 3 or worse -- I can't find any data that would suggest extending tx IF you had an EVR/2 log drop etc at or before 12 weeks. The recent AASLD conference presented a paper where they found no benefit to doing 72 weeks over 48.

<a href="http://www.hivandhepatitis.com/2003icr/03_assld/docs/pegasys/102703_h.html">Preliminary Data Do Not Support Hypothesis That Higher SVR Rates in Genotype 1 HCV Patients Result from Extending Treatment from 48 to 72 Weeks</a>

Dr. Ben Cecil is for going longer than 48 weeks for 1s, as are other doctors, but the medical community as a whole is still in the 24/48 week mode of tx. Science will eventually prove who is right -- let's hope it isn't too late for us.

I am stage 3 and ended full tx at week 50, then went to half dose of peg -- for the histologic response of fibrosis reversal.

[ms.star]

Good morning everyone.  Need some input on this rage stuff that happens.  Last night was terrible.  Without going into too much detail about the actual events I'll just say that the kids got into some fighting and I had just had enough and started yelling, although my intentions were aimed at protecting my step daughter who had been wronged by my daughter well somehow everyone got offended and my husband and step daughter ended up saying that I had somehow wronged the two of them.  My husband and I went to bed not talking after argueing several different times over the matter.  He says my outburst was out of line and I'm sure that it was at times but I really got my feelings hurt when his daughter and him somehow twisted it on to me.  I can not stand these "Riba Rages"  any more.  How do I control them.  I am on 19/48 feeling better than past days but still bad.  The dr. increased my AD three weeks ago up to 150mg. a day of Ellexer (sp)and I can take up to 20mg xanax in a day but usually only take 5 - 10 mg. daily.  The riba rages are not that offten because I really bite my tongue a lot so there are no problems but that is just so hard to do and then I open my big mouth and every time it comes back on me that it was me out of control.  Help! Please tell me how I can stop these and do they get worse as we get further along.  How do I stop myself from hurting those I love.  Thank you all for listening to me and for any input.
Starla

[Revenire]

I had the same riba effects, I hate that stuff. I used Xanax to smooth my moods out, it generally worked but there were times when I flipped and nothing could control it until it passed. Little things bothered me: a dishrag left on a counter, a comment made by my wife or children or a co-worker (and work was the hardest place to compose myself but I had to). It is hard for the families to see their loved ones sick but when we are in a riba mood patience, after X amount of episodes and months of tx, wears thin. I wish there was something else I could say to you except hang on and talk it over with your doctor. Maybe a different AD might help?

Scott

[cindyazure]

does your husband &/or kids know that u r on this tx and that it has terrible side effects.  It's right in the med insert.  Maybe u should show it to him so he understands it's from the meds and not u losing your temper.  I'm not proud of some of the riba rages I've had but it's not my fault.  I hope he has a nice talk w/ the kids and maybe they can all learn to lighten up on mom and also among themselves.  It's hard to deal w/ the tx plus the stress of everyday living.  Good luck to you.

[cuteus]

Does anyone knows any site where I can find out if there is any basis/data for extending the tx over the 48 wks in geno 1?  My PA says there is no reason to extend if liver damage is mild, that there is no data that suggest tx extension will benefit us at all.  any ongoing studdies with preliminary results.  i really do not want to repeat tx if i relapse.

[simpleman]

I'm not really sure they are controlable. Mine got worse furtherinto tx. I didn't realize how bad until I finished. I told my wife and kids to try not to argue with me and I tried to bite my tongue but that will only go so far. Talk to your doc to see if you can do something. My wife called doc with 3 weeks to go and he called in Zyprexa but it only made me real sleepy. I wish I had done something sooner because I think I did long lasting or permanent damage to my relatiomship with my wife and kids. I wish I had a better answer for you but I never found one for myself. Good luck.

[CARUU]

Wow, you are getting close!  Hang in there and keep your eye on the prize.  You have been an inspiration to us.  You will make it!!! caruu

[jonihs]

Have several people w/ riba-rage experience, use 1 link to write their experiences down. Either have him read it or print and and have him read it later. I'm sure he'll see ones much worse than yours. One of our gals broke her husbands front tooth (for real) some shoot badgers,etc. I'm sure you'll get no shortage of stories!!   Joni

[DownThisRoad]

When did you clear the virus during treatment.  Were you clear at the 12 week PCR test?

I'm female, 46 years old and my biopsy showed that I was stage 1, grade 2.  I am genotype 1a.  My GI will have me do a 6-8 week extension after I finish my 48 weeks.  I am on week 37.  

I've read and heard that some doctors are extending treatment time for genotype 1's.  There are articles that will state through study that pro-longed treatment for hepC or extended treatment for hepC does not up the chances to stay clear.

I think that in my case an extension of 6 - 8 weeks is a very, very small price to pay if indeed my chances are greater to stay clear of this virus.  I'm going to go for it.  Just can't bear to think if I don't and the virus comes back that I didn't do, in the end, my ext. treatment that my GI wants to see me do.

Will not hop on this present treatment - Pegasys/Copagus - for a second round if I don't stay clear.  Already have my mind made up that I gave it the best try possible and will have to wait for other treatment and medicines to be introduced that may be more patient friendly.

[cindee]

OKIE JIM.......Way to go!!!!!!! Keep stabbing that nasty 'ole dragon!!!!! ((((hugs)))) @ prayers, Cindee

MS STAR....I hate to admit it, but I was the one that broke my husband's tooth...I immediately called my shrink, went straight there the next day. She gave me a sample bottle of ZYPREXA. I have never hit anyone in my whole life, and I still can't believe I did this to my husband. I didn't even have to take the whole bottle. I learned to control my "Rage", with the help of my husband. He kept reminding me...it's the meds. They do mess with your mind! BTW it was 15mg, once a day. I was already on klonapin and still am, after almost 3months post tx. I still take my antidepressants too. So "RUN" and get ya some, it will work! Love and Prayers, Cindee

[hepc_avenger]

I am also having my treatment extended beyond the 48 weeks to 60 weeks.  This was my choice and the Dr. agreed to do it.
I had the two-log drop at 12 weeks, but didn't clear until the 24th week.  I'm a 1A and will do shot #46 on Monday.  The extra weeks don't really matter to me at this point, as I've gotten used to feeling lousy anyway.  If it gives me any advantage for a sustained response, it will be worth it.
Take care!

[eyehavegr8life]

Thanks for correcting the link to the site I posted. patientsarepowerful.org! I was in a hurry to get to work. Annette

[Revenire]

<a href="http://www.patientsarepowerful.org/index.cfm">Patients Are Powerful</a>

Great site! Thanks.

[OkieJim]

This link didn't work for me???

Getting closer you guys. Doing #21/24 tonight.  Going for bloodwork Monday. I hope all stays well this time around. I saw the bottom of the bottle of Riba last night when I re-loaded my pillbox.  YaHooooooo!!!