lowering riba okay if dropping weight on tx?

[Myown]

I know from what i have read on forum that lowering riba instead of using rescue drugs (for hemo) is not a good idea,,,but i was wondering if someones drops lets say 20 lbs in a month while tx,but hemo is good, would lowering riba dose be advisable in that situation? I know i have read that many of you lost weight during tx, but i never noticed whether you had your riba lowered to go with your lowered body weight. The reason I ask is because I am right on the border line of taking 1,000mg. if I loose any weight on tx, i will be in the 800mg category. thanks

[ladybug52]

I asked my doctor that question before tx. I take 800mg daily. He said I would have to lose a lot of weight to lower my dose, it was a pretty wide range. (I didn't see the weight range) I weigh about 126, flucuates a litle, not much.
I had kinda hoped to see an immediate weight loss but these darn holidays are picking up the slack for days when my appetite is off.
Bug

[Myown]

http://www.medhelp.org/forums/hepatitis/messages/44258.html

hey bug, how ya doin??

yeah,,see with me, i am just on the entrance gate of 1,000.I fall in between the 2 ranges.I guess i'm like a cusp ha! for those who are into horoscopes (not me,yester-year but no more)
(above) NYCmark gave me that website showing the ranges,,,but of course another one of those things,,,if i don't write the question down befor i go to doc office, i forget one or 2 of my questions,,,sorta like going to the grocery store without a list, i always forget something.

how are you feeling these days? how are you doing with the injections? hope you're feeling good.

[compulsive]

I started at 1000 and was about your weight - I lost 25 pounds w/in the first month - I had a few other things (anemia) going on too. Doc reduced my riba to 800.   I think it depends on if your "boarderline" weight when you start (145 is kind of boarderline), and if you lose weight (some people gain weight I've heard), and how much trouble you have tolerating the Riba, and what your Doc's policy on Riba is...  Best I can do for an answer.  ;-)

I wish I'd asked more q's at the start like you are - there would have been a whole lot less panic on my part during those first weeks if I had....

[Myown]

hi,
ya know what though,,, asking the questions doesn't make the 'easing' into tx 'that much' easier though, so don't feel bad that you may not have asked enough questions.

i think the anxiety is always going to be there at some level, no matter what. i don't feel like doing this climb, but you guys have all helped me to see it can be done.

i know that alot of people have lost weight on this tx, but maybe most of them were smack in the middle of their range and the dose would be the same.

i will have to find out at the doctors next visit, but the curiosity is what has me. I would guess that lowering it for the weight loss in my case would be the way to go, but i'm just guessing.

thanks for your answer.

[ladybug52]

LOL, I'm on the cusp too, virgo on the cusp of being a libra! I remember those days. What sign are you?:)Actually I feel like being on the cusp of the seriously mentally ill list! I would bet your dr. drops the riba if your weight drops, it's weight based right? Oh my, horrible thought, what if he ends up increasing my riba after he sees me for the holidays? I am taking that 'take your riba with fat to help absorp it" pretty seriously!
Ya know, I really was not ready to do tx till SFBay girl said "Just do it! you know you have to treat" Now I'm so thankful I am through with the waiting. I feel like I'm in control of my life again. I do hate feeling weird and anxious but I felt weird and anxious before tx!
What is you start date?
Bug

[Myown]

just wrote you a post and it didn't go through,,of course it had to be one where i had a real talking jag and so all that typing down the drain,,,,let me see if this goes through

[Myown]

i guess that other post is lost. i'll give you the edited version.,,,
hopefully start tx next week, but haven't heard from office as far as my question with riba,,but its only one day past holidays, so who knows

the horoscope thing is not my thang anymore, but i am aries/taurus=thick as a brick and pain in the neck.

in the post that got lost i asked you aobut that wierd feeling you experience....is it a constant?? or a now and then?

[Lady E]

I saw my dr last Friday. I have lost about 30 lbs since beginning tx. week 17/48. He said I am now on the fence for reducing my riba because of my weight. He also mentioned that some of his patients keep up with the larger dose regardless of their weight loss. I think that's what I'm going to do. I only want to go down this road one time.
Best of luck to you.
-E

[ladybug52]

On again off again weird feeling. Sometimes I feel like I'm in the twilight zone DO-do-do do. That's my twilight zone music. It's hard to explain, but it's akin to anxiety. I just talk myself through it. I kinda chant this mantra: focus on the positive, focus on the positive. And I pray a lot. BTW I  used that word mantra as a joke also, but I do repeat that line to myself a lot.
No I'm not into signs either I guess that went out in the 70's for me, you're probably not that old.
Take care
Bug

[jmjm530]

I think that answer will present itself only after you start treating; find out whether or not you lose weight and how much (not everyone loses weight); see how you manage your side effects, including possible anemia; and, have the benefit of knowing your viral load drops. In other words, changing your ribavirin dose will be in the context of how your treatment progresses and how you and your liver specialist evaluate things in total. The important thing is that you start on a weight-based dose out of the get go, which you are at 1000mg/day and have a medical team that monitors all aspects of your tx (including dosage) carefully.

In my case, I started tx at 176 pounds and 1200mg/day of ribavirin. At one point I was down to 140 pounds and still on 1200mg/day of ribavirin. Yes, it would have been easier for me (and my doctors) to rationalize lowering riba given my weight loss, but the decision was made for me to stay at 1200mg/day as long as I could tolerate it. Very late in tx both my Dr. and NP suggested I could reduce if I wanted, but left it to me and I decided to continue at 1200.

I understand you're going over lots of future scenarios in your head now -- especially as you read things here -- but what I found useful was to concentrate on the here and now at my doctor visits given the limited amount of time you actually have to ask questions. That doesn't mean you shouldn't ask important questions such as frequency of blood tests, helper drug intervention, etc, -- but it does mean to keep most of the discussion to events that are currently or may soon be happening. For example, I wanted to have a prolonged discussion with my doctor on whether or not to extend treatment but decided not to use up my 'question time' on that early in treatment when it really didn't matter. The discussions were held as I approached week 48 when they mattered more.

All the best and hope you enjoyed your holidays.

-- Jim

[Myown]

wow thats alot of weight you lost. well i'm starting out a good 20 lbs over my normal weight, so i feel like its no biggy if i loose 20-25,,,i was afraid that if i started at my normal weight and dropped alot of weight,they'd pull me off tx or something. knowing what i know now, which is a little more than then, they probably woudn't have pulled me off. i HATE throwing up and if that starts, i'll be Miss Puek America 2007 (and of course i want world peace),,yeah my own pueking makes me puek more,but maybe i won't get nausea. i have all the remedies everyone listed, ginger etc, so at least i know what to do, thanks to you guys.
So thats interesting that your doc said some stay with the same dose,,,every opinion we share with one another helps us to make decisions when left up to our own choice, if that in fact happens.

hope your tx gets easier and easier for you and that you svr for ever and ever. thanks for your help

[Myown]

i'm glad that the you don't have the wierd feeling all the time. that would be crumby. twilight zone,,well at least it goes away. i'm hoping i don't feel like the old orange sunshine days. speedy paranoid trip,,,yuk. hippie days,,so may years ago. yes I am old,,menopausal,so that puts me in the old people category. ha

so hopefully staring soon, just have to get a few things ironed out. office must be closed for vaction or something,,couldn't get a hold of them to get the answer to my question. i really don't feel comfortable about getting injection without riba flowing through my system first. i am really staring to loose it with one loose end after another. I don't like these days of how things are done. I am from the old school of ' getting it right the first time,' but its hard to find like minded people in todays society.

see ya later

[Myown]

you made valid points. i do have a habit of jumping all over the place and wanting to know whats down the road,,but questioning whats in the here and now is much easier to deal with and does lessen anxiety. i usually like to jump ahead when talking to doctors because i like to know we are on the same page,,,but you're right,,,i still need to focus on the immediate.

i like to have the personal experiences of some from forum to weigh with what may be presented to me at a doctors office. lets face it, the medical people hate these forums, but as far as i am concerned i have received VERY VALUABLE information from many people here, so I won't stay off site, though they would like us all to.

so you stayed with the high dose. i could have guessed that. lol you pushed it to the edge for your entire tx from what i have gathered,,,but it did pay off, thank God.

its a gamble, this whole thing from start ot finish and then even after that. A calendar is our bible sort of. It is always being studied and held on to (with hope of not seeing doctor appointments written all over it someday.)

thanks jim....is your skin okay yet. i know you said it was getting better a while ago,,but was wondering if its norm yet?

see ya later and thanks again

[jmjm530]

Yes, I stayed with the high dose but you have to understand that when I started treatment I was under the impression I was between stage 3 and stage 4 (cirrhosis). Less liver damage and I wouldn't have been as agressive, in fact would not have treated as a genotype 1. That said, I think people generally stay with the initial riba dose regardless of weight loss unless their sides get bad and then reducing the riba comes up for discussion. Nothing wrong asking your doctor about stuff off in the future, just that it cuts down the time you have to discuss the more hear and now. You know how it is, one minute you're having a conversation with them, and the next the nurse walks in and your 'meeting' is over :) Trick is to get the important/relevant stuff answered before that nurse pops open the door.

-- Jim