HEPATITIS C COMMUNITY
Decision on stopping tx early is here

Decision on stopping tx early is here



Not to be 'all about me ' today, but with this forum change, learning it and being sick (er) past few days..... I have to get these posted before I loose the energy or mental clarity!

Brief on tx, scenario....

Geno 2b, stage 2/3 fibrosis (on the 1-6 scale).
Started tx Aug. at Shands, Dr. Nelson, one of the best, no slouch or idiot Dr.
Screening day VL was over 4 mil.
Starting day VL was 1, 550,000
UND at week 4 per Heptimax test ( <5) ...right jmjm?

Dosing through out:
Starting tx : week 1-6, 180mg Peg/800 Riba
Reduced week 6 : 135 Peg./600 Riba (had to)
Reduced week 11: 90mg Peg / keeping 600 Riba
Labs okay, doable since reducing, remained UND thru out.

  NOW.....16 weeks visit/labs Friday. I love Dr. Nelson as he seems to read my mind! (Plus my 1st comment to him and Susie were "I don't like you anymore", LOL)
I am just not one of the few that has taken tx well, and while lucky sides could have been worse and didn't get some, what I have has/is just kicking my once 'bad self' a*s! (as many here) I can say with all honesty, had I had 48 weeks ahead of me I'd have stopped and waited for newer, less harsh drugs. Even the 90 Peg hasn't made much difference, but some!
Soon as I 'looked' at him, he get's that grin, looks thru chart, labs, etc.  and says "OKAY....from this point on tx is 'just the gravy' for you, try to get as close as you can to the 24 weeks." To sum it up, he's confident in my SVR and knows I am getting worse by the day in this and at that 'dammit I quit stage'. Even stopping now... changes my chances by only @ 3-4 %. KNOWING I could never do 48 weeks of this .....I want to get to 24, but don't know. Is that 3-4 % worth the full 8 weeks of cramming more of this in me, the eyes getting worse and so on??? It's a hard choice, while a lucky, blessed to have it choice!

  My 'happy medium' thoughts are this.......
Do the doses on now until week 20, than reduce again to week 24. (45mg Peg/400 riba)
Labs providing when in Tuesday as I feel like when Hgb was 10. (no rescue drugs here).
While a bit unusual tx, the reasoning is keeping at least some of this in me for the 24.
Any input here?

Note: Just a curious note, I'd done the acupuncture, moxy, etc. treatment through out to help sides with my Acupuncturist…. that found the hep to start with!!....and a bit odd she's in India for a mth., haven't had any of her tx for sides in 2 weeks and I am at my worst thus far!

Thanks all and hope all are holding up!

LL
Related Discussions
41 Comments Post a Comment
Blank
Avatar_f_tn
I think sometimes when asked these questions we speak out of our own experience. As you may or may not know, I am a g2 relapser who was on weight based entire 24, never missed a shot or pill with the exception of stopping the riba 2 or 3 days after last shot, which I was told I didn't have to take the last week of riba at all due to accumulation.

But anyhow, if I would have stopped early, I would have been in the wrong statisic columm if there are any records kept that are outside of the "studies"(doubt it).

So I guess not only would I have thought I relapsed cause of 'short course" but my doctor may have also. So at least I do have peace of mind as far as knowing I didn't cause my own relpase by choosing to stop early.

Its very difficult at this time to make a decision. Many here know what you are going thru. It stinks. Decisions - so many medical decisions are left up to us with disease. I can't think off hand of any other diseases that doctors 'give their patient a choice as far as tx length, which only proves to me how much of a cr@p shoot this disease is. Its not only the doctor holding the dice, but he hands them to us to roll too.

You have to weigh it all and keep in mind that as far as 'newer drugs,' if you find yourself in the boat with me (God forbid) you not only have to wait for geno 2 studies to be complete, but g2 'relapser studies,' and that's probably so far off in the distance that I think by that time,I will be eye to eye with Jesus asking Him why he made it possible for certain birds to talk, but not dogs - that always bothered me, really,,,and I will ask. *smile*

But whatever you decide, its your decision and I support you in it.
I wish you the best.
Blank
Avatar_m_tn
The "gravy" remark is probably based on studies that show that geno 2 RVRs only need 16 weeks of treatment. That said, you've had your dose of Peg and riba reduced a couple of times, so really hard to say. Still, although some seem to disagree, the idea of treatment isn't to kill yourself, just to kill the virus while keeping yourself reasonably intact, therefore my opinion is to follow your doc and your instincts. Probably academic at this junction, but curious what week was your last UND? As to tapering off, seems to make more sense for those on interferon a longer time, so I'd try and keep full dose as long as possible and then stop. Alternatively, stay full dose until you say "Uncle", then taper but only keep the taper if bearable. If not, stop. But best to run all this by your doctor.

-- Jim
Blank
Avatar_f_tn
my Acupuncturist…. that found the hep to start with!!....
----------------------------------------------------------------------------------------
I'm curious, how did she find out you had hep C -  are you saying without giving a blood test and just something else that she noticed while doing the acupunc?
Blank
Avatar_n_tn
my opinion is too shoot for 20 weeks of tx, at 20th week then shoot for 21 and keep going one week at a time....You'll probably want to quit real bad by week 20.....but i have a feeling youll just keep going for the full 24 weeks..........by spring time youll be dancing in the streets.............good luck!
ron
Blank
Avatar_m_tn
Anyone can do 48 weeks. I did 52 on 180mg and Ribo. You only need to make your mind up and do it. I did and a lot of my friends did also. I'm not going to say it's easy. I must admit it took me six months to make up my mind and actually take the last 6 months. I even blew some veins out in my eye. Everyone avoided me. I had every excuse to quit. No one in the family could stand me. The wife ignored me. The kids also ignored me. Work was a real trip - they put up with me also. I was a real Son of a you know what. Just live today - just live the minutes one at a time. It'll pass. Get that bug out of you, hang in there girl. Please, hang in there. I've been clean for over a year now. It was well worth the haul. My worse time during treatment was during the the fifth and sixth months. It really is hard. Before I knew it I was done -- ZOOM. Finished. Clean. It felt good -- I have two friends that had Liver transplants -- not fun. But there still living and caring for there families. It is not easy. Keep in there, you'll do ok. I hate to see anyone this way. It bothers me. Even if I don't know them. Life is to good to give in. There are people who do care about you. Take care Lady.
Blank
Avatar_f_tn
As a geno 2 like you, I had a heck of a time with tx.  Fortunately I was RVR at week 4, on weight-based riba,but I had anemia and a slew of autoimmune skin issues.  After 12 weeks of tx, the doc pulled me off the riba, and the following week said, "You are stopping."  Sometimes it's helpful to have a doctor assertively make that decision for you.  

If you trust the doctor implicitly, as I did mine, as him what he would do if you were his wife, his child or himself.
Blank
Avatar_f_tn
Forgot to say, I'm SVR.
Blank
206807_tn?1331939784
You do what you feel you have to do. Since this poison effects everyone different, nobody knows exactly what you are going through but you. If you can, please try to stay in the fight and make the next 8 weeks. I am sure, before it is over with, someone will be quoting these words to me. R. Glass.
Blank
Avatar_m_tn
I'm not sure that everyone can do 48 weeks. As MyOwn said, we tend to give our answers based on our own experience. Mine is that I've had an easy ride so far. Genotype 1, log 2 at 12 weeks and now UND at 24 weeks, 51 years old, 175 pounds. As a slow responder I luckily have had the option to add Alinia. I also tolerate the riba well (on Procrit for the anemia), so I'm able to take 1600mg a day without problems. I know that my chances for a cure are actually low, but given that I've had a lot fewer problems that many others, I'm going to 48 weeks. Not sure about extending (probably won't) because this stuff really isn't fun to take.

I like Poker Ron's idea. Go a week at a time. As someone who did the Ironman triathlon, I know what it's like to go mile by mile to finish. I'm also in Recovery, and the idea of a day at a time works for me, too.

In the meantime, we're all praying for a complete and speedy recovery for you.

Jeff
Blank
163305_tn?1333672171
My opinion is its a **** shoot. Some tx the full length and relapse, others stop early and are SVR. And then there is everything inbetween.
I don't agree with the 'anyone can do 48 weks" comment. I couldn't. My body was screaming at me to stop. I have no doubt that my broken bones were from a change from tx and or/neup. What good is SVR if I break when I sneeze? I did what was right for me, my relationship, my life. You do what you feel is right in your heart and you won't go wrong whether you beat the hep or not.
Blank
86075_tn?1238118691
I think, especially with this issue....everybody is right, because this question is like a prism...there are so many sides to it, and they are all dependent on the cr*pshoot.....which way it goes for a person individually...so seemingly contradictory positions are just different sides to the same equation, to me.......But the real biggie to me, is what you said....it's a giant cr*pshoot, and you have to be ready to throw the dice...or not....all dependent on your particular case....some people have more wiggle room then others, because of these new meds coming out....
Blank
264233_tn?1216345915
i feel for you.  as you know i was asked to go 72 weeks but my body could only make it 56 weeks.  i was und after 12 weeks and stayed that way to the 56 weeks.  i had to decide if it was losing my life or continuing tx or stop with a pretty good chance of stayin or achieving svr.  i do not no what exactly what medical issues and all you speak o but my body both physically and mentally was literally shutting down.  i think you are on the right path to making a good decision. when you make it to 20 weeks you will have only 4 weeks to go to finish tx.  because of my blood  counts and all my doctor lowered my doses of inf  but kept the riba at full dose 1200 a day,  reason from doc was that the riba being the main fighter of the hep-c and the inf shutiing down my immune system i would still be getting the full effect against the hep-c.  i am sure as you can see some in here will say you can stop at 20 weeks  and some will say fight thru it and finish tx, but i will say this get all the info you can and find all the facts you can to make sure everything has been done to treat you for the side effects,  and that the only recourse is to stop tx.  

just getting tx takes a lot of courage and endurance, and the decision is yours to make.  i no i will be pulling for you either way,  as i no many in the group are as well.

see ya.  : O )
Blank
250084_tn?1303311035

Your all just awesome.....you make me tear up and it isn't the meds, it's feeling the warmth, caring all the way thru cyber space!

Myown....I well remember your case, which is one that made me keep going at 12 weeks, and I am so so sorry you relapsed, with the chances geno 2's are given.
   I don't understand on..."to wait for geno 2 studies to be complete, but g2 'relapser studies"....... I thought it was the standard to retreat at 48 weeks 2nd time with Geno 2? (easily could have forgotten if I heard that!) which of course is my fear as NO, I can't do this for 48 weeks! Not only physically but I just can't put my life on hold again that long, at least without a lot more preparation! (as many I am sure).
I really have taken some control in my own tx and each time I'd decided/figured to reduce, exactly what he did next app., without me saying what I thought I should do, so my 'gut' has been right thus far. But what a h*ll of a choice as it truly is a roll of the dice.
Your input AND support has been very helpful to me :}
P.S. My dog does talk, doesn't yours? Every night since @ 4th week of tx, lol.

Poker Ron....thank you as that is my 'plan'....'just get to 20 weeks', hoping than …..okay now 21. Only thing is if these particular sides get worse....still so hard to decide is it worth it with good 'odd's'??

Litchy... thank you for caring :} I am in 5th mth. and yup, it's a b*tch! My eyes are my biggest concern here in the decision. If I blew some veins I’d be done!  I do have to disagree all can do the 48 weeks...unless you get so 'out there' you think it's week 12. j/k...tho I would be! VERY happy you got SVR, that I LOVE hearing.

jmjm.....the idea of treatment isn't to kill yourself, just to kill the virus while keeping yourself reasonably intact......
I know, I know! Always agreed with you in that. That's what makes the choice so dam hard. All test have been UND since week 4, week 12 was, 16 week labs in Tuesday.  ‘Reasoning’ would lean towards no break thru with reductions., still achieve SVR.  I am pretty firm in believing Geno 2’s can do less of the med’s if sides intolerable TO keep on tx (and guess I’ll be proof of that soon!) I'm a fortunate one without other health problems and don't want to end up with more from tx when I 'could' do less for SVR. Where the h*ll is my glass ball?? !  Tho the chances of SVR 'only' reduced by 3-4% with Geno 2, stopping now.... I have the risk of the reductions in meds, and sure no studies on that! (other than going to 400 Riba.) That is what’s making the choice harder than had I slammed it the whole time.
We did discuss all this and he still seems confident in SVR and the choice is now up to me, with him saying 'get as close as you can to 24' for that 'gravy. Okay...UNCLE...I said UNCLE DAMMIT!

Much appreciation all...now on to the next replies :}

LL


Blank
250084_tn?1303311035

I'll look thru my post for the whole story.....
had said 'ironic as smoking sort of saved my life'!! Fast summation...carried over 30 yrs. Had same Dr.s office past 10 years, several Dr.'s there, ALL had all records of labs, etc. for that 10 years. Last 2-3 yrs. kept going in...'SOMETHING is wrong'...'oh your fine, your depressed, etc'. Ex sent me to Acupuncture/Chinese med Dr. to quit smoking...her 1st 'exam', no history what so ever...she said "something is very wrong with your liver, go back and tell the check it'! No labs! Did....LFT's have been bad for YEARS... no one ever checked! Way more to this but I'll find the post. (She got me into Shands within weeks also, sent me straight to Dr. Nelson, and urged me to treat ASAP.)

LL
Blank
250084_tn?1303311035

Pigeonca….Know your SVR story well too :}, Myowns and yours gives me both sides to think of. As you,I am having a hell of a time with tx (don't we all, or most) and being 2b is a blessing, but gives you more choices as geno 1's have such a longer tx, struggle to go thru and not the 'early quit' options. (God bless you all in fighting soooo hard). I do trust this Dr. and the decision is now of 'how much more I can take and do'.  Of course he wants the 24, but is assuring me if I can't take it, it's at a safe time frame if I stop. Thanks.

Rglass..... I am sure, before it is over with, someone will be quoting these words to me......
  And I'll be there coaching you on when/if it is you :} I am shooting for 20. I try so hard to say 'buck up, it's only 24 weeks, your sooo lucky" but d*m, it still 'hurt's'!

Jeff.....yup, going to have to do that 'one week at a time' from now forth. Very glad your handling so much Riba well and HUGE wishes you do get SVR, even with lower odds...it DOES happen.
Praying for a complete and speedy recovery for you ALSO and in strength in your battles each day.

OH...You do what you feel is right in your heart and you won't go wrong ..............
Always have so need to apply this here also.
Agree some can not handle the 48, even 24 as it just affects all so differently. Glad your feeling better :}


Blank
250084_tn?1303311035

Yes, all are 'right' in this, Hard to be 'ready to roll the dice' tho when it's time as things change so much thru out. Sides, dose's, labs, mental clarity, etc. I say now..."getting to 20" but next shot, week could make me roll the dice! The never ending uncertainty’s in this make it as said...just gambling on your health and outcome, in every area. Geno 2's do have more wiggle room tho, so that gamble/odd's are at least....better odd's on the dice.
Blank
250084_tn?1303311035
.K said......lowered my doses of inf  but kept the riba at full dose 1200 a day,  reason from doc was that the riba being the main fighter of the hep-c.............
All......is that 'true' as for the Riba is what is keeping it from replicating,etc? Can someone explain that more detailed?

Kcrandy.... 56 weeks!! YOU did good girl, with all the suffering. I haven't been able to follow post much past week, between new forum and sick, and this is taking me hours, lol...how are you now??
I have researched a lot, and  much info. from here and with all that...I would decide to quit anywhere from 18-20 weeks (extra push past 16) but my reductions thru out put a real dent in those 'studies' showing good chance, etc.
Hope you are getting better and remain UND. When's your next labs, test? Thanks for your help, concern :}
LL
Blank
Avatar_m_tn

The answer is ....there is no sure answer.  The best people can do is to explain your options, explain their opinion and their expeience and when it all shakes out you'll have a broad base of information to help you make your decision.

In terms of weight, your doctor gets top billing.  They are familiar with your case, your labs and other situations that many of us don't know.  This guy knows you and HCV better than any of us. I think when you ask you are just trying to be thorough and see if there is any last minute things to think about.

You are in a group the routinely hits around a 80% SVR rate.  You've got a few things in your favor; good health, fit, under 50 and female with no other major extra-hepatic issues.  You hit an RVR.  Your prognosis is very good for an SVR.  Your liver staging is such that you needed to treat but if you were to rebound you could probably wait for better treatments but the odds of that happening should be very slight.

In a nutshell all that I can suggest is to wait to quit as long as you possibly can.  IF you were to SVR, in a year or two the actual number of weeks that you spend on TX may be forgotten.  IF you cut treatment short and experience a rebound the number of weeks that you treated could be something that you remember for quite some time.

The final provision is that if there is an issue such as your eyes which cause you to need to quit I think that would be reasonable to cut TX short, particularly if you are into the "anything extra is gravy" portion of TX.  Your doctor or opthamologist are the guys to ask about that.

I think you are going to be fine.  You've taken good care of yourself, got a great doctor, good friends and good advice;  you can't miss.  ; )

You know....best wishes....

Willy
Blank
Avatar_m_tn
What willy said. Just want to add that its your call, stop when you cant take it anymore. Your odds are still good but they are just stats.
You will only know for sure 6 months post EOT.
Until then best of luck
CS
Blank
Avatar_f_tn
Hi Lauri,
yes it is standard to treat for 48 weeks after failing 24, but the reason I mentioned that it looks like it is going to be quite a wait until g2 relapser studies are complete - meaning for g-2 - tx now, sorta no choice but to tx with SOC is because you said,,"I can say with all honesty, had I had 48 weeks ahead of me I'd have stopped and waited for newer, less harsh drugs." And so your dog talks since week 4 of tx? lol

Btw, thats amazing that your acupunc noticed that.
But anyhow, I'll see you later. My washing machine broke and I have the service guy coming in a minute. Gotta herd the dogs into a room so the guy won't be afraid to come in. Thats always so much fun -especially the loud barking that makes everyone think I am harboring killer dogs.
Blank
86075_tn?1238118691
yeah, the posters are right, and Willy is right, there isn't any answer, only you know the answer LL, what's right for you to do, and yes, you don't want to kill the dog while trying to get at it's fleas....you know what's right for you to do, along with your doc, but ultimately you...your doc is going to play tennis after he sees you...youre the one to do the time....
Blank
144210_tn?1273092382
What was the sensitivity of the test? If you get the test that shows you clear at untrasensitive test down to 2, well then........
Blank
Avatar_f_tn
Hey there.  Try to do it for as long as you can!  But, I also totally understand.  Coming from the perspective that I don't want to see such a nice person end up w/a viral rebound....I want you to succeed.  My fear for anyone treating is that they get that news, as I have over and over again,...that your virus is detected.  Trust me, that news is so hard to hear.  On the other hand, you've been blessed w/an early undetected status and are a geno 2, which I haven't had the fortune of being, so my perspective would not be the same as yours.  Also, whenever I'm not treating and my LFT's and viral load go up, I want to be treating so that I feel like I'm doing something to fight this.  When I am treating, all I can think of is 'getting off of these DARN DRUGS'.  I have to say though that I have always stayed through the whole treatments as long as my doctors would allow me to.  I can think of one time that I had to quit (but, I hadn't cleared the virus anyway and it had already been 8 mon. on TX), and that was when I had to have back surgery.  There was another time that I'd already been on TX for 52 wks and I still had not cleared and I was SOoooo anemic and my WBC was in the toilet and at that point, I had to quit.  There didn't used to even be such a thing as rescue drugs for those of us treating.  Nobody ever had them available until in the past 4 yrs??... you just didn't hear of anybody treating Hep C who was on Procrit or Neupogen.  I've been doing these TX's on and off since way back in 1997 and even on the 1st TX I did, that included the Ribavirin (I was in later stage trial w/the Riba).  Anyway, all I'm saying is...I understand.  You do what you need to do for you, friend!

Susan
Blank
264233_tn?1216345915
lots of good post for you to read.  i am pretty sure you will do whats right for LL.

my next lab is march 11 08.  and i am gaining strength every day after tx stopped.  

h%@ll if i am und after 6 mths i might just treat myself to a fat boy and a lot wind in my face with all my memories following close behind me, lol

hang in there Lady. : O )
Blank
264121_tn?1313033056
Poker Ron....thank you as that is my 'plan'....'just get to 20 weeks', hoping than …..okay now 21. Only thing is if these particular sides get worse....still so hard to decide is it worth it with good 'odd's'??

jmjm.....the idea of treatment isn't to kill yourself, just to kill the virus while keeping yourself reasonably intact......
-----------------------------------------------------

LL - I wish I had some good advice for you but I am still trying to figure this thing out myself.  On the one hand, I am COMPLETELY committed to going 48 weeks at full strength no matter how bad I FEEL because I don't want anything to jeopardize my being around for my son and my future grandchildren.  I even feel bad about a lot of the whining I do (and honestly, I do a lot of whining here at the house, you guys just can't hear it) - but I feel bad because I figure there are little children suffering through radiation therapy and here I am whining about my hep c treatment and I feel kind of silly.

And I completely do what Poker Ron said and just go week to week, a little bit at a time.  Because if I looked at the thirty some odd weeks I still have to do, I would have a nervous breakdown right here and now, I'm in so much pain and so tired and miserable.

But then I see what Jim is saying too because on a couple of occasions I actually HAVE been afraid I was going to take things too far, or that I almost have taken things too far in a way that could have irreperably damaged my general health due to the gravity of some of the side effects I've had, particularly vis a vis my blood count.  There is a constant struggle in my head about how much is too much, which risks are too high.

And as Myown noted, there is much left to the patient by the doctor on treatment decisions, I've noticed that as well.  My doctors have told me point blank (just today even) that they are at a loss and don't know how to advise me.  (I am going for a consult with Dr. Gish)

So anyway Lady Lauri, I really don't know anything good and solid on this topic myself.  My own personal bias is always for staying the course and not reducing the dosages, but everyone has to do what is right for them, and as you said, it sounds as though you have a good doctor advising you.  My hopes and prayers are with you for a permanent SVR no matter how you decide to proceed.
Blank
Avatar_f_tn
I haven't taken the elevator down to hell yet, although it's getting closer.  So I shouldn't even be saying anything here.  Anything I say is purely academic not experiential. But of course I'm gonna say something anyway.  I would say don't even think about quitting or getting to Week 24.  Just get to Week 20.  That's your goal.  Just get there.  Then make the next goal.  Don't even think past that. Grab the encouragement you need from others here as needed.  Your labs are terrific.  I'm encouraged by your results.  You've done this with such good grace so far.  I'm a runner and on some runs there's a point where it's like "oh man...this is deadly...."  (sometimes there's an "effing" in there too :) and that's the point where I start setting little goals along the way.  I'll get to the next goalpoint...I made that, so I set the next goalpoint....and then finally I hit a point where I've gotten far enough that the end is in sight and there is so much behind me and the goal is so close that I don't even consider stopping anymore, I just push on through to the end.  I'm not suggesting you should go the distance.  Only you get to decide that because only you know how you feel overall.  I'm suggesting that this is the hard part of your race where you just set small goals for yourself as you've suggested you want to do.  You've directed yourself very well so far.  I think what you've already decided to do works for you.  And decide at each goalpoint what your next goal is.  It's your own race and ultimately you need to do what's good for you.  I just want to encourage you so that you get as far as you want and need to go.   Anyway..my running gear is on and now I have to take my own advice... lol  :)  Thinking of you, LL.

Trish
Blank
250084_tn?1303311035
Kcrandy.....thanks dear, and you'll love a fat boy :}, wait awhile as I want my 'Halloween paint job' Dyna low rider w/ screaming eagle package after tx, I'll sell ya' mine :}

ala......You, my dear, have plenty of reason to whine....so you go ahead and whine all you want! Your going thru pure h*ll in tx-ing and your strength is BEYOND mine!
I was in the room in Mn. when a 2 yr. old got his donor bone marrow put into him! And I can't tell you how watching his battle, staying at the children’s Ronald McDonald house....woke me in many ways. I was never a whiner, always grateful for what I have, but that truly brought much to who I am and how I live daily. Cole lost his battle, but that two year old brought a lot to this world in his short 2 years, and much to me as it was very odd how I came to know and  love him. So your thinking is right on the money, we HAVE to look around us, always. But I still say YOU have reason to whine! :}
Thanks for your thought and prayers, it's just such a tough call knowing I could well be SVR, yet as Willy said.....if I was to relapse the weeks will be in my head, and I'll be kicking myself. For today...doing shot 17 tomorrow and waiting on labs. :}

Trish, I am at the 'efffing' point for sure! (love that...effing, lol)
I am setting my sights on the 20, as all said...looking that longer distance is too much (when problems, feeling this way) and tho 8 weeks is not usually a 'long' time, as we know, in tx a few weeks feel's like a long time. I am counting my blessings every time I read 'only 32 weeks left'!  Thinking the 'whole' picture can be hard in the fog. Had I not reduced along the way, it'd be an easier choice, while even with reducing, seem to be getting worse...what to do??
Shot 17, that's what I'll do for now :}
I admire anyone who 'runs'! While I did gymnastics, yoga, etc. running was never my thing, and than came smoking :{ , but always wanted to be that lady running down the road for miles :} Good for you! Will help when your on tx, being so healthy.
Thanks for your words, thoughts Trish.....off to do the EFFFING  Riba!
LL
Blank
250084_tn?1303311035
4c......you don't want to kill the dog while trying to get at it's fleas....
Now that I can understand,lol. If my doc is playing tennis and I'm not SVR, I may have to mess up his ball's! (tennis balls that is, maybe!)

CS...couldn't take it anymore about 10 times past 2 weeks,lol, but I am still here :}

Myown....understood (on 48 retreating,etc.)
Yup , my dogs been talking since tx, bare in mind this is the one I took his 'white capsule' instead of mine and he may have gotten a few of my Ribas! J/K! I also have to put the herd away when service guys show up, big dogs, big barks, one bites!
How was the service guy...err, the washer fixin'? :}


Blank
250084_tn?1303311035
Wilson...I mean Willy :}

OKAY....following and posting IS harder now! (or is it tx??)
Good point, I'll hate myself 'if' and all, quitting early :{

........The answer is ....there is no sure answer............
SOMEBODY make up my mind for me :}!

I do have a good doc, and he would really push me forward if he had 'doubts', at this point he's also saying 'go till you can't take it anymore'. Just the reductions worry me.

The opthamologist that I have pd. over $500. to doesn't seem to know much on chemo and eyes! (and I went to 'the best' in my area??) and seem's to think it's 'okay' for now but glass's I bought 6 mths. ago don't work well now, contact in rt. eye I've increased twice, sore eyes,blurry vision, etc. and this in 'only' 16 weeks and my vision is very bad already. Expect better advice there, not getting it, on to another one, but hate paying that 1st fee, etc.

...........I think you are going to be fine.  You've taken good care of yourself, got a great doctor, good friends and good advice;  you can't miss.  ; ) ....................

Think so too, on all the above. Thanks Willy ; )

Zeus   :}
Blank
250084_tn?1303311035
Forgot this reply!

The 4 week test was heptimax (<5)
The one trial is using is..and I totally quote....

COBAS Ampliprep/COBAS Tagman HCV test with a dynamic range of 43 IU/ML and a lower limit dtection of (LOD) of 10 IU/ML.

HUH?????????
And which should I get that you mentioned?
I will pay for it! Want it!

  Thanks, LL
Blank
233616_tn?1312790796
you are terrific for hanging in as long as you have, and no one can know until they go through this what it does.
Having said that, ....OK, do you think it is all the blood work making you want to stop...or the physical/mental sides.
I think the physical/mental part has played a large part with me...(although I didn't know gall bladder was part of all the pain)

but from everything I've read more folks quit because of the mental emotional exaustion, which can also be severe.
So, while we are all glad to have at least "been" anti-drug before this disease, there is a time and place for everything.
We both know how speedy stuff can effect people, but honestly I don't think this drug Riba is much different...it feels like the worst thing since I tried No-doz for a college midterm...and worse than any street drugs...   (all of the coming down, none of the fun!!)
so my guess is if you are consuming any other stimulant substances you may be double whammying yourself.
for instance, one INCh of coffee kept me up for an extra 8 hrs last week....so in addition to posibly adding sam-e or an antidepressant...I'd tell you to at least give yourself a chance to detox from other things, be in tea, cigs, or anything that may be making your symptoms worse.
For me, even animal dander is making me worse, so for you that may mean letting someone else do the riding and/or grooming for a while.
Hope you start doing better!  maryB
Blank
212705_tn?1221624250
MyOwn said it best..."It's a cr@pshoot"...I pray you reach SVR..no matter what. It is an awful burden....these many decisions that come with this virus....those alone can be mindblowing and then add the drugs!
Take it an hour... a day...or a week at a time. Do all that you can....
I'm in 40 odd weeks DD...i see it as the biggest fight of my life and with 'not so' good odds....
but in the end...i'll say, Hey...I did what they told me...I did the best I could...now let the chips fall where they may...........
I wish you good health.
y
Blank
212705_tn?1221624250
I know I'm biased. Knowing MyOwn and what this relapse has cost her....I don't want that for anyone else. Her odds were something like 90 odd %. I'm getting a massive headache just thinkin' about this...
then there is Ladybug who did 16 wks. her 6 mo. PCR showed a clean SVR...
Woman, if you pray, ..do it now..and ...I'll be doing it for ya on this side.
y
Blank
Avatar_f_tn
Been interesting reading.  I'm geno 2b, diagnosed 3 months ago.  Had one very tiny tattoo 9 yrs ago, ~ no other risky behavior, low viral and will schedule a biopsy now after reading here the past few days. (Dr said not necessary, but now I see it is).  I've been gobbling up info her from those currently treating hcv and those who have completed. treatment. I will continue to read as much as possible over the next few months.  This is interesting and really appreciate those treating sharing their experiences - it can't be easy.
Blank
250084_tn?1303311035
Y....it's 1:05 am in Fl, just saw this , just prayed 'with' you.
And for you too :},  Thank you :}

LL
Blank
288609_tn?1240100356
Trish are you on TX and are you still able to run? What are your stats?
I have been running for about 7 years now. I used to do distance running 75 miles a week, 6 marathons. I only run about 3x's a week now just 5-8 miles ever since my joints got to stiff and I was diagnosed  with RA. I still like being physical with dance classes, Zumba and Pilates. I keep hoping I'll hear from some one on TX or post TX SVR that is able to keep active.
I will probably start TX in a couple of weeks and will try to cont. as much as I can. I have a very physical job, PT on a brain injury unit, and one of my priorities is to be able to keep working. I know of course that this could kick my butt and put me on my back.
ANYONE out there able to keep active?
Blank
250084_tn?1303311035
While wanting to wait a couple years for newer tx....my biopsy made my decision for me! Stage 2/3 fibrosis (1-6 scale) and wasn't a daily drinker, pretty healthy life style. HATE when Dr.'s say 'no need for bx'!
Please get one! We are 'blessed' with Geno 2b, rarely would I ever suggest a geno 2b not to treat. (despite I want to quit now,lol, it IS worth is ALL!)
Keep us posted and good luck!

LL
Blank
250084_tn?1303311035
  For me, it is wayyyyy more the physical than the mental, emotional...I have done pretty good on that, luckily.

BUT..... as for the coffee...I love my coffee! tho do half decaf now, please don't say it has to go...it's all I got now :{

Good points tho. I know eating nothing isn't helping and even drinking water a 'chore' now?? Labeled me 'anorexia' sides or something like that? Not sure what that was about and forgot to ask in the end of talk. I don't have that problem so assuming it means...not eating, can't eat, etc. Do MAKE myself drink things :{

Thanks for your points. How are you doing ??

LL

Blank
250084_tn?1303311035

Wish I could help you there :{
Some do tho, and some work just fine. You should post that as a seperate post and you'll get a lot of replys to help. Unfortunalty, it varies so much that you just don't know until your on it. I was convinced I could do P/T work, convinced I'd handle it well. Very little of this is mind over matter tho, my brain is sore from trying that!

Good Luck ahead, LL
Blank
Avatar_f_tn
When my anemia is under control I'm able to scuba dive.  In fact, being in the water and not fighting gravity feels great.  Its the only time that physical activity (even just walking around the house) doesn't leave me completely exhausted, short of breath and with a racing heartl.  When I'm in the water I can believe I will oneday feel normal again.
Blank
Avatar_f_tn
Thanks so much.  Agreed, I need to know what the biopsy says. I've spent some time reading and have received a lot from your posts, as well as post from others treating.  Appreciate your insight!
Blank
Post a Comment
To
Comment
Post A Comment
Go
Blank
Weight Tracker
Reach your weight goal faster
Start Tracking Now
MedHelp Health Answers
Submit
Top Hepatitis Answerers
Avatar_m_tn
Blank
willbb
Avatar_m_tn
Blank
copyman
Avatar_m_tn
Blank
jmjm530
223152_tn?1321976790
Blank
frijole
Midland, TX
Avatar_m_tn
Blank
mikesimon
179856_tn?1333550962
Blank
nygirl7
Planet Earth, CT
RSS Expert Activity
1741471_tn?1336957856
Blank
LIVE WEBINAR TOMORROW!-SUPER BODY, ... Blank
May 22 by Michael Gonzalez-WallaceBlank
2126606_tn?1335910182
Blank
Fibromyalgia Awareness
May 11 by Clare Waismann Kavin, RASBlank
2126606_tn?1335910182
Blank
Opioid-induced hyperalgesia reduces...
May 03 by Clare Waismann Kavin, RASBlank