ANYONE SVR ON 800MG OF RIBA?????????

[dodger1]

Has anyone ever taken 800mg of Riba and been svr?  I am 140lbs and 5'10.  I am on week 33/48 and every post I have read people are all on 1000 to 1200mg of riba?  I hope that everything I have been through that the doctor did not screw up and only gave me 800 verses the 1000mg.  I have been having nightmares about this the last week.  I have also been having stomach problems alot. I just cannot wait til this is all over.  I am down to 3 to 4 days a week at work.  I have to work some to pay my bills and keep up the insurance.  Have a great day to everyone!   If it wasn't for this site I would have quit already.  You guys have been wonderful.  Sheila

[MajNeni]

Dear Wasabi Pea,
Thank you.  I'll hold you in the Light that you, too, can prevail against this virus.  Since this thread is getting old, and since I am not a frequent visitor here these days, please contact me at yahoo... and tell me a little more about when you cleared, etc. You're a tough lady, to be at 50 or 51.  I'd like to know about your decision to extend; is it entirely because you're doing the second round?  When did you do the first round?  etc....

Cuteus, I'm sure someone who needs it will speak up for your leftovers.  I had more than a month's worth of ribavirin left at the end of tx, and sent them to a friend from this board who is now SVR.  These meds are all worth a lot, especially for those with insurance problems.
Yes, we made those "I survived Hepatitis C" pins ourselves on my hubby's badge-a-minit gizmo.  This spring, our new supervisor said on everyone-in-the-department's evaluation that that teacher was not student centered enough... so hubby made buttons that said "I'm not student centered enough."  Unfortunately a whole bunch of us got laid off in January, but due to lower enrollments.  Now I have a lot more time.  
I can't get over it that your hgb stayed around 12, and you could go to the Y! My doc would never give Procrit above 9.5 MG. I flopped around on 7 with 40K Procrit 2x/week, holding up the walls wherever I went, LOL.

Chev, you're amazing, you remember everything about everybody!  My memory is still playing games, but I'm beginning to think it's age related.  Maybe the cumulative ravages of decades of hep-c.  So have you been studying the ways of George Fox and company?  Wish more would put down the swords... Glad you're keeping well.

MajNeni

[GoofyDad]

I'll be thinking of you and your PCR. Best of luck WP!

PS - You probably know that low hgb is suggestive of higher serum riba levels? That you were anemic seems to work to your favor as far as riba concentration levels go.

[Wasabi Pea]

I always look for your name because you always give me a little more hope.  I am type 1B also.  Second round of rx.  Week 50 or 51.  Scheduled to stop in April.  I pressed for the extension.  Due to anemia, went from 1200 riba down to zero, back to 200, 400, and I'm finally back to 600.  (I'm 156 lbs., 5'5", female.)  I wanted to push to 800 in the final two months, but I'm not sure I can handle it.  I feel wrung out and seem to develop tinnitus at night.

But on the hopeful side, my last qualitative PCR in November showed nonreactive.  I get another one done next week, both qualitative and quantitative.  So my fingers are crossed.

Thanks for still popping in.  I'm so glad you're going on two years SVR.  May it last a lifetime! :)

[FlGuy]

Am in the Ft.Lauderdale area. I hope you get the last 3600. Although we all get HCV-literate here the understanding of what some folks go through is hard to grasp. In your situation I wouldn't know if I would welcome, or fear, an upcoming pcr.  You sound like a focused, determined person and I hope that your pursuit pays. You've paid your dues, now it's time for the payoff. Get 'em Susan.

[MajNeni]

Dear Sheila,
I was a type 1b and in the 1200mg weight range, but had severe riba reductions, especially during weeks 27-48.  I think I was off riba completely for 3 weeks, and on about 600 or 800mg for many more weeks; altogether I was ordered off about 1/3 of my riba because of the blood counts... even with Procrit 2x/wk.  I am now due for my 2-year post tx PCR; was SVR as of 1 year.  Trust your doctor, it sounds like he knows what he's doing.  Maj Neni

[susan400]

Thanks FLGuy for understanding that what I'm going is rough.  I've done this for 6-1/2 mon.  My red cells have not been a problem as my doctor started me on the Procrit from day one.  My white cells have been an on again off again problem, but my doctor says that they're affected by the Interferon more than the Ribavirin.  I am close with my viral load getting undetected, but not close enough yet.  My last VL was 3,600 copies.   If I don't clear this time, then, I'm done.  Thanks again for thinking of me.  BTW, where in Florida do you live?

Susan400

[OkieJim1]

Hey congratulations!!. I love your handle. I was 2b beginning chirossis. I've been post TX now for two years. Hope we get more rain soon.

[jmjm530]

There are two genotype 1 weight-based dosing schemes I know of for Ribavirin. The first doses at either 1000 or 1200mg/day -- and at your weight it would be 1000mg. The other goes from 800mg to 1400mg I believe and with that scheme 800mg sounds about right for your weight.

That said, some of us are dosing higher (I'm doing 1200mg/day at 155lbs) -- just as some of us are dosing the Peg higher -- the reason being some studies suggest better SVR figures at higher doses. My doctor is onboard and supports the higher dose while my NP thinks I should be on 1000mg/day. This is not a science yet.

The trade-off with higher riba dosing is more sides with an increased risk of dropping out of treatment.

One Sweedish study found a postive correlation between the degree of anemia and serum riba levels. Therefore the fact that you became anemic (hgb 9) is positive in the sense that it suggests you have a decent serum riba concentration.

All said, if you're uncomfortable with your riba level, definitely discuss with your doctor or get a second consult. I don't see a right or wrong decision in your case.

All the best. Are you eating too close to bedtime? That sometimes can cause vivid dreams/nightmares.

-- Jim

[Mister beagle bailey]

Dodger---What geno type are you?  I'm geno 2B, VL befor tx was 318000. and on Peg-intron and 800@ riba a day.  Did shot #5 last night. The ones who take 1000 & 1200 riba are usually geno 1&4.

Flguy---Congrat on finishing tx, how are youdoing now?

  The Beagle

[NYgirl]

Well as far as I know Beagle is right I am a Geno 1A and 1B - so two very resistant strains instead of one.

My doc put me on 800 but I asked to be upped to 1000 due to the two strains. OTherwise I'd be on 800 too.

[dodger1]

I cleared the virus at week 4 which is excellent.  But you know when it starts getting closer to time you start questioning everything.   Its just that you went through a year of hell and you hope and pray that it works.  sheila

[cuteus]

I believe there are two schools of dosing. One that does it by wt and the other by a formula for genotype one only. My dosing was done by the latter formula at 1000mg for a wt of 135lbs. I did not clear at wk 12, even with that dose. The formula for geno one <75kg is 1000mg, over 75kg is more(not sure how much). This formula recommends nothing lower than 1000 for G1.

here is an abstract that played with dosing in three different groups.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12386637&dopt=Abstract

note that the <65kg wt group got 1000mg. I believe you are at that level, if my math is correct. At this point in your tx, I don't know that changing it will make a difference, since you have been negative all along, right? WHen was your first negative?

[Lynne5477]

Sheila,
I was a 1B, 48 wks tx, and was on 800mg Riba the entire time.  I can't imagine having to take more as my Hgb stayed around 10 thru the whole of tx; anymore and I'm sure it would have dropped lower and caused me to reduce dosage and have to wait for approval of the Procrit.

You'll do fine.  I remember getting concerned toward the end of tx and wondering if I would remain clear and how slow time seemed to pass til I could get the next PCR done.  Keep the positive attitude and you'll cross the finish line soon.

[tulsatime]

Hi, yes I am SVR on 800mg. I am 165lb and 41 years old Female. Hang in there you are doing great! I was type 2 so I was only on it 24 weeks. I have had hep C for 20 years or so. Mine had already reached cirrosis before I found out I had it. But thank God only beginning stages. I go back for my 6 month after treatment check up on March 1st. Take care and God Bless.

[NYgirl]

AHHHHHHHHhhhhhhhhhhhh the nightmares........man oh man........the strangest darn dreams I've ever encountered in my life.

Anyways - what I posted yesterday correlates to what Jim said above, if you have all the classic sx of Riba than you have to figure your serum level is nice and high enough.

I think the level is the important thing - and not necessarily the amount you take ... as long as it gets in there and stays there ... you are doing fine.

But talk to a different hepC doc if you need to have peace of mind.

[can-do-man]

Clear since week 4. Sounds like 800 is working just fine. 'If it ain't broke don't fix it'

[friole]

Hi Shelia, nice to see you.

I tried a little googling, but am not coming up with much different than wht has been said.

<75kilos = under 165 pounds (1 kilo x 2.2 + 1 pound) = take 1000

>75 kilos = over 165 pounds = take 1200

I found one vague reference to 15mg per kilo of body weight.

140 pounds = 63.64 kilos x 15mg = 954

However, you have had dramatic anemia problems and it would hve been hard for you to get the anemia under control with 1000 mg.  The fact that you were clear at 4 weeks is wonderful.  Don't sweat it - it is almost over.

[NYgirl]

Friole is right - I am on 1000 and I do have terrible problems with this anemia unless it appears I am on mega does of Epogen.

While "more" seems to sound like it makes sense nobody is really sure it does anyway - so considering your anemia situation it's probably best you ARE on 800/

My doc only put me on 1000 with the caveat that IF the rescue drugs weren't working well we would drop the dosage in the first place.

But dumbo me again has convinced him not to drop and just up the Epogen which I hate but what can you do.

At 20 weeks I dont think I could change anything really - just waiting for the 24 week pcr.

[bobbyullc]

THE FORMULAR I GOT WAS 10.6 X WT/KG OR 10.6 X 64KG =668 (800).MOST OF US 1'S ARE ON 1000 OR MORE/

[Mister beagle bailey]

It sounds like it's working, you have been clear since the 4th week and that is great. My first 2 weeks on meds my HGB fell to 9.6 and then was given procrit 40,000. units every 2 weeks, after just 2 weeks on procrit my HGB went to 11.8, that's higher then before starting tx.

I understand that now your getting closer to the finish line and your worried, I think you'll be fine and you'll be telling all of us soon your SVR.

   The Beagle

[FlGuy]

Just completed 24 wk tx. Am (was?) 3A with starting Vl 600,000 at 173 lbs.  Was on daily 800 mg riba and Peg Intron .  Non detect at 12 and 24.  See what happens in few months. Started at 173 lbs, finished 162.  Like you, I also noticed that there are a lot of folks on a lot of riba and that stuff is nasty.  Assuming you are properly rx'ed at 800 mg - be grateful and good luck.

[RobBetz]

I am on 1200 RIBA per day with 1400 every other day...I weigh 175 and counts still stable....

[cougareyes]

What were the reults of your 12 and 24 week pcr.   Peace

[FlGuy]

While we're on this subject..I think of Susan400 everyday. On 1600, I don't know how you do it.  Good luck Susan.