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Avatar universal

Ladybug...16 week short course

hey bug!
I saw in the hep forum that ya mentioned to Jim about the 16 week course. I am struggling with the thoughts of what to do also.

You're doc wants you to consider? I think thats what I read. too lazy to go back and look to see exactly what you said. I'm on my way out to do some errands, but just wondering what you feel about it.

anybody else that has opinions or has done the short course, I'd apprecaite your input.

thanks
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Avatar universal
i posted a new thread, it has a better link to RxHope this is more user friendly don't have to sign to the website to look.
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146021 tn?1237204887
Thanks, I finally got it all taken care! I should have gone on my husbands ins Feb 1 but had all kinds of paperwork problems. Got it all straightened out but my sister has no ins and I'm gonna pass this info on to her!
Thanks!
Bug
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Avatar universal
its called RxAssist.org
RxAssist offers a comprehensive database of these patient assistance programs, as well as practical tools, news, and articles so that health care ...
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146021 tn?1237204887
I think you are right about dying with this instead of because of it. I have a friend who is a geno 1 and quit tx after 12 weeks. He talked to his dr. and felt like he could get 30 more years on the liver, or die in a car accident before the liver wore out.
Really what can you do, worrying never solved anything. I don't know about your financial situation, but some people were talking about getting labs to reduce the price. Also, teaching universities sometimes have a sliding scale. You probably know all this and are just trying to get through day by day. Life is often more overwhelming than the disease!
Bug
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Avatar universal
hi,

i read that you can not get your a.d. covered by insurance. i know you said you paid, but for future refill have you tried (or heard of) patient assistance programs? most drug manufacturers have programs. just need signature from your physician (and probably financial qualify). physician faxes form to manufacturer and i think they are mailed to you (or the physician).

do a search. patient (prescription) assistance program see what you find. there is one i have seen before where you put the medication and they tell you what programs are available.

rose
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Avatar universal
I do not know about the ins. thing. I know I cannot afford out of pocket.
But what are ya gonna do?
I have read that most people with HCV die WITH the disease, not BECAUSE of it. Cold comfort to some maybe, but it is comfort.
How have you been feelin?
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146021 tn?1237204887
Lilmomma? Will you get ins anytime in the near future? I admire you for txing, doing your best and letting it go. I would be a wreck wondering I think. Then again I chose to deny it for about 12 years before I started tx!
Good Luck with svr.
Bug
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Avatar universal
MO:appreciate everyones input on short term, but knowing me I will probably do the 24 only cuz if the virus came back after 24, at least I know I did all I could have
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Not really. You could do 48 weeks like some geno 2's and 3's, or why not 2 or 3 or even 5 years?

I'm kidding on the latter, but to make a point. That beding that no one "does all they can", even the most agressive treaters. What they do is all that they determine to be reasonable after weighing the risks of exposure to the treatment drugs against the rewards of potential SVR.

No doubt we could probably get over a 90% cure rate with the current drugs if everyone treated let's say five years. But would that make any sense?

Not trying to give you a hard time (today at least :) ) -- and 24 weeks for you is a reasonable decision -- but the oft used phrase here "I'm doing all I can", with the logic being I won't blame myself if I relapse, has always irked me.

I think people who choose the short course are also doing "all they can" based on a reasonable weighing of the risks versus rewards. And like yourself, once finished with treatment, should never look back and ask "what if", because they simply came to a different conclusion after looking at the data and talkign with their doctors. And that advice also goes to those that treated longer (like myself) who sometimes look back and ask "what if" I only treated 24 weeks. Jim, grow up, what is done is done, 54 weeks was your number. Move on:)

Enough for my Sunday morning sermon.

Be well,

-- Jim
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Avatar universal
I'm right there with you hun. My brain was sharp as a tack before, everyone would come to me at work when trying to remember info, procedures, company info. now
its a challenge to make important phone calls. I sure do hope this goes away. I was going to take a course, but held off, good thing because I dont think I could do the paperwork that goes with it. Hubby laughs at me when I say "I lost a piece of paper with a name and address on it, did you see it" cause he knows I put it somewhere and forgot ;-)

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Avatar universal
I went 25 weeks out of my 48
It was too much for me to keep going, mentally and everything else. Just too many sx for me to cope with work and such.
I was undetectable at my 12 week PCR, and continued on at und. but do not know what my status would be today. I am 6 months post tx, and for the most part doing okay. I would love to know if the little buggers are gone or if their at it again. dont have ins. or the money for the test.I just pray for the best, and live my life the best I can. I cant lose any sleep over things I cant change.
I have come to this site most days just to read what you guys are doing, and how life is going. I have always liked this site. It is so full of info. I find lots of good ideas here, not to mention, some very uplifting messages to carry me through another day.
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173975 tn?1216257775
Duhhhhh!

See what I mean?  :-)
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Avatar universal
Purely anecdotal, but I don't remember one person posting here who relapsed who did the short course treatment. Must have been at least half a dozen geno 2's and 3's, and 1 or 2 geno 1's. All had one thing in common -- non-detectible at week 4. As to the risks of relapse with short course, keep in mind that there are also risk in taking interferon and ribavirin. The object isn't just to kill the virus, but to kill the virus with the least reasonable risk.

-- Jim
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92903 tn?1309904711
Not to say you can't successful SVR on a short course with low riba, but the protocols call wor weight basd dosing like geno 1. I didn't do the short course but I attribute my SVR at least in part to choking down the riba. I did 1,200 mg for 160 lbs of body weight and took every pill with fat.

There's a theory that hgb levels are an inverse guage of serum riba. With procrit I was under 9 grams hgb for nearly the whole trip - so that suggests I had a good saturation of riba going on.

I also wonder if my low hgb fried some brain cells as I have yet to recover good short term memory. I think this underscores Jim's point quite nicely - I probably could have cut back on a riba pill and still SVR'd - in fact my doc encouraged me to do exactly that. Maybe that would have been a better choice in the long run.  

BTW - not to alarm anyone, but isn't riba listed as a carcinogen?
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Avatar universal
yes Goofy riba is a carcinogen. I think i just mentioned that in another post too. That has been one of the things on my mind too. But a majority of people have had Epstein Barr(i had it too) and that is also carcinogenic, which surprised me when I read that. If we add everything up thats in our bodies between life time meds (for those who take them) virus's, some of which are carcingenic, our polluted air we breathe etc, its no wonder the cancer rate is so high.

This is why I cannot go to a MD that just says,,"oh if you eat balanced you are getting all your nutrients. Okay maybe, but it goes beyond 'getting nutrients and a balanced diet.'

We need to take antioxidants 'big time' to FIGHT all the free radicals in our body. Good eating alone does not do this.

I appreciate everyones input on short term, but knowing me I will probably do the 24 only cuz if the virus came back after 24, at least I know I did all I could have. I am not strong enough to 'let it go,' if it came back after 16 week short course. I probably would dwell on my decision from now to kingdom come.

I'm not a gambler. My father was.  They probably have errected a statue of him at Aqueduct Race Track.
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146021 tn?1237204887
Filled the prescription, back on a/d's going to take it one day one week one shot at a time. Congratulations on turning out the song.
I WILL SURVIVE!
Bug
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146021 tn?1237204887
Goof: Are you trying to say that 800 mg's is not enough riba to do the shorter course? You know I have a paranoid personality, and it's all about me! Didn't get my honey dew today, cause I'm taking that personal:) I weight 126 at the Dr's scale, with clothes and shoes. I don't care what you guys think, us women KNOW clothes weight at least 10 lbs. But even based on the 126 figure, is 800 mg enough?
JmJm: Last night I had definitely decided on 24 weeks. Now after your sermon, I'm definitely swinging to the more conservative side and shortening my tx.
MyOwn:O.K. I need some help from you. What are considered antioxidants? Do I have to drink powdered ruby red and all that stuff? All my money goes to my bills and my kids in college. Is there a cheaper way to get healthy than the Vitamin Shoppe route? Remember, what's cheap to you is gas money to my kids!
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Avatar universal
Its a cr.p shoot no matter what you do. Both my doc and Dr. A said if UND at 4 go 24 weeks, unless it is untolerable. I was <615 but still detected at 4 weeks, so they both said do more. Dr. A said if can handle it, add the 12 weeks and be done with it. I could have been UND at week 5 for all I know, but I will never know, so I will extend but not the whole 48 weeks. Dr. A said there would be no additional advantage between 36 and 48 weeks.

Ok enough about my senerio, my point is at this point if I were you, just do the 24 weeks, so you don't doubt yourself later, esp. since you are doing well.
Get it done girl and get done right!

You too Ladybug, you dont ever want to have to do this over again and end up with more time (like jail) ;-)


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Avatar universal
At least one of the shorter course studies was done with weight-based ribavirin as opposed to an 800 mg flat does. Don't remember, however, if they tested the shorter course with flat dose to see if any difference. Maybe Goofy would know. That said, if you cleared early and your hemoglobin had a dramatic drop, it's possible you may not have needed the weight base. Also, how much did you weigh going into treatment and how much do you weigh now? It's quite possible that 800 mg is weight-based for you.

Here's one weight-based scheme:

RBV based on weight:

< 65 kg
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146021 tn?1237204887
800 is weight based for me because I just converted lbs to kilo and came up with 57kg.
I weighed about 126 going in and weight about the same now. Who knows? My clothes still fit, clogged arteries from the food I eat but guess the smaller portions are keeping the weight the same.
Goof: My ins ran out the 31st of Jan. Can't refill any meds and am going coldturkey off my a/d's, so I'm acting and feeling paranoid. My poor husband!
Cindy: I don't know what to do. Based on this weekend I would love to quit at 12 and move on. I don't want to be a sissy. Maybe I'll wait and decide once I get on a/d's
Myown: Ok I am a wimp and take A/D's what's the healthy alternative?
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173975 tn?1216257775
"My ins ran out the 31st of Jan. Can't refill any meds and am going coldturkey off my a/d's, so I'm acting and feeling paranoid."

Hi Bug.

Excuse my ignorance, but what is a/d's?
BTW, as I read through this thread my first reaction was;  Yah!  She'd doing great.  She's UND already and has the option of even considering the short tx vs. the long tx.

that's a great position to be in.

(If it wasn't for having to make a decision about it! - sometime in the NEAR future, that is)  :-)

Hope you're feeling better.

And, one more thing, if it's any consolation, we started tx almost the same time, I think.  (I just did week 8).  And I'm nowhere near UND as of last bloodwork)

My second reaction was, Damn!  The stinking insurance issues.  As if we don't have enough other problems to deal with.  That makes it really tough.  

I don't know what a/d's are yet but it sounds like something you should try NOT to go cold turkey with.  (easy for me to say, right).
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Avatar universal
It was 16 vs 24 weeks
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146021 tn?1237204887
A/d's =antidepressants. I'm really mad that I'm so miserable without them. My prescription is $48 without the ins, and I decided I need to refill more than I need the money. It just makes me mad because I paid out of pocket last month too and I had ins. then, just no card. Just hard trying to get switched over to my husbands since mine ran out Jan 31st. I was suppose to get the Celexa filled on Feb 3rd and I'm tired of trying to wait out the ins co. on getting me updated to my husbands plan.
Wyntre, I really shouldn't whine, you are so sweet. I am lucky, I get the shorter tx, have had less sides than you and luckily und at week 4. Thanks for the kind words, I needed a wake-up call to get off my pity party today!
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146021 tn?1237204887
You're right, I don't have to make a decision today. I may not be as lucky at my 12 week pcr or my dr may really want me to keep on since I'm able to work and play on tx. (Just a little play time, but at least it's not just couch to bed like some who are so sick)I need to count my blessings today. And once I get those a/d's filled, I will! I'm a wimp!
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Avatar universal
Bless me father for I have sinned and these are my sins, I'm sorry to have irked you Father Jim. lol
___________________________________________________
You said:

I think people who choose the short course are also doing "all they can" based on a reasonable weighing of the risks versus rewards. And like yourself, once finished with treatment, should never look back and ask "what if", because they simply came to a different conclusion after looking at the data and talkign with their doctors. And that advice also goes to those that treated longer (like myself) who sometimes look back and ask "what if" I only treated 24 weeks. Jim, grow up, what is done is done, 54 weeks was your number. Move on:)
--------------------------------------------------------
But here is the thing,"I will look back."

If God forbid I got cancer, there is no real way of saying 'where it came from,' so that I wouldn't necessarily blame on the meds, but I know that I will be so ticked off if I relapse and think it was something that I CAUSED myself.

Lets face it how many studies did they do for the short course for geno 2's? How many people were in these studies? I think I remember reading the study once and the odds of clearing were lowered by the shorter course.

I still feel like I am getting a placebo because I literally have NO sx, thank God. IF that changed next week,and I started pueking and needed procrit cause my hemo dropped and if I developed a rash head to toe, this lady will be the FIRST and ONLY participant in the 'Do it at home clinical trial of the 6 Week Itty Bitty course.

Believe me I do tip my hat to all you guys who pueked your way thru and continue to puek their way thru. I'd probably quit.

I don't see myself being able to get thru that. I then would just pull myself off, believe me, no way am I pueking everyday and feeling like **** when I'm a stage 0 and can wait, ya know? Its great to feel good on tx, but the down side is it makes me want to stay on meds longer to help increase my odds.

Believe me I know the risks of the meds, these are dangerous meds and I hate putting them in my body.But at this time and even years down the road, it will still be chemicals, so i wouldn't have been happy waiting to 'still use drugs',,plus my liver would have more wear and tear, which then would lower my svr rate. So many things to weigh. Yeah okay, maybe the course would be shorter, but maybe the meds would be even worse for my body.

There needs to be more of integrated medicine involved. Problem is that most 'conventional doctors,' think holistic doctors are 'quacks.'

The first liver guy I went to when looking over my blood work saw that I had a 'hair analysis' done at a holistic doc. He then says,'excuse me a minute,'leaves the room, he then comes back and hands me a paper with a website on it 'wack watch or something like that.

He told me I was wasting my money getting these tests done. Well guess what? IF he would have read my hair A, he would have seem that it said excess calcium was in my hair and 'this is seen in people with hepititus and cirrohsis (amongst other things).'(And the H.A. was done BEFORE I even knew I had hep.)

This is just one example of how closed minded some doctors are.

(BTW since many folks with Hep have bone pain, some have osteoporois, maybe its caus the hep causes us to lose the calcium as seen in my HA)

Where am i going with this? I don't know. I'm rambling on.

see ya Pastor Jim.

Thanks for you opinion. Even it I don't 100% agree, I'll still come to your church .lol

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