Anyone else here quitting tx early?

I am a Geno 1a and quitting tx after 16 weeks because of good results.

I had no liver scarring at start of tx and a VL of 1.6 mil.

I took standard SOC drugs including 1400 mgs. of Riba daily.

I used 4000 IU's of Vitamin D3 daily as a triple therapy.

I was UND on all lab tests, weeks 4 through 12.

I expect to remain UND and reach SVR.

Before everyone starts ripping me to shreds and calling me delusional, please remember that Im not trying to recruit newbie forum members to my point of view AND that people do have a right to make their own choices.

My head is still spinning from taking 1400 mgs of Riba daily so Im not here to debate the issue or get in a fight with anyone. I just wanted to tell my story and see if anyone else here is quitting early for any reason?

[working dog]

thats great that your doing so well....i'm not but thats the way it goes....this i remember from some years ago on this forum...a member that was geno 2 i think..maybe 3 did 13 weeks of tx and couldn'ttake it anymore....she cured...i'm sure there are others....please keep us posted so we can follow your progress.....thanks....billy

[RonGilbert316]

Thanks billy, I will keep you posted.

Im a 140 pound man and have always had a very low tolerance for any type of drugs. Needless to say the Riba (and Pegasys) has had me "on the ropes" every step of the way. I would have quit early because of a "slow" response as well but only because of my baseline of no symptoms and no scarring.

If I had been stage 1-3 like so many others here I would no doubt find a way to stay on, even if I had to reduce the Riba and fight it out.  Ron

[can-do-man]

Hopefully there are not many people with geno 1 on SOC with a RVR risking SVR with only 16 weeks of tx...................I surely hope it works for you though.

Good wishes,
cando

[willbb]

Why would you not do the recommended 24 ..for G1 with an RVR  ..it is only another 8 weeks and studies show that your chance of SVR would not be that much different than 48
All the best tho on 16 ..hope it works out ..I heard of one guy that did 11 total and was SVR  .so .....yes as long as newbies don"t try this at home

Good luck

Will

[can-do-man]

140 lbs and they had you on a dose of 1400 mgs. of riba? No wonder your head was spinning, did they say why so much riba?

[willbb]

http://www.ncbi.nlm.nih.gov/pubmed/18508296


CONCLUSION: HCV-1 patients derive a significantly better SVR from 48 weeks versus 24 weeks of peginterferon/ribavirin even if they attain an RVR.. Both 24 and 48 weeks of therapy can achieve high SVR rates (>96%) in HCV-1 patients with low viral loads and an RVR.

[can-do-man]

Will, wasn't the 24 weeks for people whose starting viral load was somewhere around 400,000? Not the 1.6 mil. his was.

[Trish77]

I repeat can-do's question....why 1400mg of ribavirin for a 140lb man?  I suspect you're African American and that's to offset the lower odds to some degree?  Just the same...1400mg is a wallop.  What was that dosage based on?  I'd want to stick it out to 24 as none of the studies you've quoted have any data on stopping treatment at 16 weeks, only increased SVR rates when going the expected amount of treatment time per genotype.....however, having said that, people stop treatment when they truly can't take it anymore and we all hope for the best.  I'd look at dropping the riba and hanging in there awhile longer to 24 weeks anyway....if your hgb is taking a hit from all this.....but whatever you decide to do, I hope you get your SVR regardless.  

Trish

[desrt]

Reduce your riba to the correct dose and do at least 24 weeks.

[copyman]

Foolish but everyone has to do what they feel is right. I could see if you did triple therapy but stopping even before 24 weeks with SOC only is risky to say the least.

ribavirin is a drug that needs time to "train" the immune sys to kill HCV on its own. Not sure 16 weeks is enough.

Hope it works. At least you can always retreat with new drugs if it don't.

Good luck

[Bali05]

You need low baseline VL <400K and RVR to be able to consider 24wks.
It is done more frequently in Europe but not in the US. European Geno 1s
also seem to respond slightly better than American geno1s
I would not recommend to shorten tx for Geno 1 or 4 doing  Peg+Rib
only as last resort.

You could reduce your Ribarin dose.
What does your HgB look like ?

b

[willbb]

cando...yes it actually said it should be <400,000 if I remember correctly

[lynda607]

Did your doctor recommend stopping or did you make the decision on your own?  If your doctor is in agreement what did he base terminating treatment early on, particularly for a genotype 1?   If he is not in agreement, what are his thoughts?

[willbb]

If you haven't already stopped...there is lots of data...that says do at least 24

Good luck
Will


http://www.intmedpress.com/serveFile.cfm?sUID=246a4a78-2a19-4926-a77e-3011cf5e450c

[joemc34606]

If it all works out great, but if you short yourself eight weeks are you going to start over or then do 24. Doesn't make much sense does it? Good luck. Joe

[RonGilbert316]

Thanks Everyone,

The Oxford study I saw said <600.000 Vl so it does not apply to my case. I am of English decent so maybe that has been a helpful factor.

I am white and I think 1400 mgs. Riba is some new standard for Geno 1. No sure.

I was willing to take whatever he told me to take, and I did, But now Im beyond done.

[curiouslady1]

I thought it was 1000 mg. if you are below 75 kg. and 1200 mg. if you are over 75 kg.  Would you be willing to reduce it to a lower dose?  a much lower dose?

[Trish77]

Has your doctor been monitoring your ANC - absolute neutrophil count for your white blood cells and your HGB - hemoglobin for your red blood cells?  At that level of ribavirin for a 140 pound white man, I'm curious what your HGB is at and what it's been all along?

1400mg is not a new standard of ribavirin dosing for a Genotype 1.  It's weight-based dosing and you'd have to be over 200 pounds I think before being given 1400mg of ribavirin on a weight-based dosing regimen.  You're way over the standard weight-based dosing for Genotype 1.  If your hemoglobin is very low, you'd be amazed how much better you feel when your hemoglobin comes back up to normal levels.  I would seriously consider dropping that dose and riding it out a bit longer.

[Anne1717]

I took 1200 mg for 130 woman with a starting VL of 72 - yup just 72.   Do I get  sympathy too?????  HUH ??????? LOL

[indy531]

Since I havent begun tx yet is 800mg for a140lb woman too little? (the OP seems to be taking a lot of riba?) My hep doc is speaking to me about triple therapy 24 wks. w.Vic. TIA.

[curiouslady1]

***** Anne.  Back to the vampire thread.  

[Anne1717]

Hah hah

[flcyclist]

Ron,
Thank for sharing your story and presenting this decision for others to learn by your experience.  You certainly aren't the first one choosing to stop trt early, some because of very serious side effects.  Considering your weight and the amount of Ribavirin/day, no wonder you were "on the ropes" this whole time.  I'm also curious if you needed rescue drugs for either the ANC or Hgb levels.  

I truely believe that everyone on this forum including me wishes to see you continue to SVR. Would you mind sharing what ultimately made you decide that 16 weeks will be enough?  Is it mainly the side effects you can no longer tolerate, or a combination of this along with the other factors you listed above?  Also, did your doctor agree with this decision?

I also a  started with a low VL of 24,000
Was UND at 4 and 12 weeks - currently at end of 17th week
1200 mg ribavirin/day, 180 mcg Pegasys/week.  I'm 185 lbs.
My Hgb is hovering around 12, ANC tanked to 360, so on neupogen 2x/week.

Although it sounds very tempting to stop at 24 weeks and some of the studies support this, I only want to go through this one time and avoid a repeat.  It might happen, but I'm willing to continue to 48 weeks as long as I'm able to tolerate trt and things don't get worse,   If they do, I may reconsider.  But I'm very conservative and don't like taking shortcuts and risks.  

I'm not trying to talk you into anything, but just sharing my personal decision.  In the end this is a bit of a numbers game and a crapshoot, but if I'm going to play, I want the cards stacked in my favor with the best shot at winning.  

I wish you the best of luck all the way to SVR.  Please do let us know how things work out.

[meakea]

Good luck with your decision Ron...keep us posted!!  1400 riba at 140 pounds sounds ugly...very ugly.  I took 800 riba at 120 pounds and it was enough to get me SVR after 48 weeks.  I don't think I could have tolerated a higher dose of riba for one week, let along 16 weeks.

Flcyclist...  I started with a VL of 30,100.  I was UND at week 4 and continued UND throughout TX.  I was so tempted to try to get my doc to agree to let me stop at 24 weeks but he was against it.  I was actually relieved when he disagreed because I then didn't have the burden of worrying if I did the right thing - if I had stopped at 24 weeks.

I finished the 48 weeks and SVR is the word...the happy, music-to-my-ears word!  If I had stopped at 24 and relapsed...well, I would not have put that mistake to rest very easily.

[ptz]

Ron, I'm in week 13 of my tx.  I have gone from a 3.3 million viral load to non detectable in week 8 and 12. I have some bridging fibrosis..I have had C for 40 years and have been through 2 failed txs.  Up until a couple of weeks I was able to still go surfing but in the last 2 weeks my energy and balance has gotten so bad it just isn't fun any more.  so  I understand the wanting out...I think the side effects are cumulative..but I'm sticking with it..I hope it works for you...keep us posted please.

[curiouslady1]

Oh well, maybe if it comes back you can treat in a few years with ever newer drugs being discovered.  Anyway, you give your liver a break by treating as much as you did.  

[streamline569]

I don't get what I'm reading here at all. I'm doing 1000 Riba and I only weight 107ibs on a good day. I'm sure I'm stopping at 24 weeks. I doubt I'll do the 48 weeks for cirrhotics and just hope for the best. The odds are still better then the old standard of care and there is only so much one person can take. If doctors know they can lower your riba dose to keep you on and they are not then something is very wrong in the medical community. I'm now going on week 12 half way done and just the thought of another 12 weeks of this is hard unless this lightens up after the incivek.Still what news stats on cirrhotics doing 24 weeks, We are the stats. They still have trials going on don't they?????

[ptz]

I'm 190 and I take 1200 mg of Ribavirin daily...It is my understanding that there is a direct relationship between the level of Ribavirin and successful tx. In my second tx because my red and white blood count went so low they twice reduced my Ribavirin...the tx was unsuccessful....this time they sent me to a hematologist and I'm getting a shot of procrit and 3 shots of neuprogen weekly...before they started that I was so out breath and weak I could hardly walk from my car to my office...don't get me wrong it still ***** but it is much better...I'm doing the Vitrellis and it is for 36 weeks so 24 sounds like cake to me

[curiouslady1]

I don't recall where I read it now but there was a recent study suggesting that there is a direct positive relationship between clearing the blood of the virus and becoming anemic.  

[ptz]

Yes but that doesn't mean you don't treat the anemia

[curiouslady1]

No it is simply an observation made by researchers as to the relationship between the two.  

[cursed180]

what do you mean?do you mean if you get anemia your more likely to clear.
i had low white and red blood cells all way through and i cleared.i was reduced dose too but only the interferon cos white cells was extremely low.wish we had rescue drugs here,but luckily i cleared but i was gen 3and i was on full stregth for 8 wks and then lower for 16 weeks.

[cursed180]

oh ron oh dear i hope you are going to stay clear but honestly i would try dropping your dose first and at least doing 28 wks as every1 is saying your on high dose and thats why u feel yuck etc but u will be kicking yourself 4 ever if it doesnt work,if it was me id stay on it as long as possible but id just get doses lowered if its too much as when they lowered my dose i felt so much better so i would really try all options b4 you quit.
what if u dnt clear and then next time u go on tx it doesnt work as well and you might have to do 48 wks anyways.sorry to be blunt with u but just concerned thats all,i wish u all the best and il prey it works but just hope others dont think like this as the tx has these time limits put there for a reason.
fingers crossed 4 u

[ptz]

there is a positive relationship between developing anemia and a successful tx outcome.  12 years ago my red and white cell count got very low and instead of treating the low blood count they reduced my ribavirin dosage..at 3 months I was non-detectable, after the ribavirin reduction, at 6 months it returned and tx was terminated...I guess what I am saying is that don't lower your Ribavirin instead of using other drugs to treat the anemia or neutropenia.
Ron 1400? I be asking some questions..there is a recommended protocol

[oceanblue701]

Ron,
I wish you SVR.
I do not know what your chances are for SVR with stopping at 16 weeks.  Your results are wonderful now, but might not last without the continued treatment to suppress and kill the virus. I cannot imagine stopping where you are stopping.
There is a lot of good advice here about decreasing the Ribavirin and dragging through until at least 24 weeks. I was so desperate to be rid of the virus I could not allow myself to go a shorter distance than 48wks despite RVR, very low viral load etc. etc...  You are taking a big chance.

[RonGilbert316]

My decision to stop treatment after 16 weeks was based on a personal belief that I no longer needed to continue in order to achieve SVR. Here is a recent quote: "Genetic variations have long been sought to explain the differences in host antiviral responses, and it is now well established that host genetics plays a role in the response to IFN-based therapy in HCV infection."  and a link: http://hepatitiscresearchandnewsupdates.blogspot.com/2012/01/il28b-genetic-polymorphism-testing-in.html

Absence of liver damage, RVR, and high RBV dosage also played a role in supporting my belief. I am now 6 months post treatment and still testing UND for HCV. I still take a Vitamin D3 supplement and drink 4-6 bottles of water each day to help minimize various types of treatment caused fatigue, stress, anxiety, itching, dizziness, and general brain fog. I do intermittently feel as though I have more energy and feel a sense of relief that I no longer carry HCV. Thanks for being kind and understanding toward me and my battle with HCV. Ron

[orphanedhawk]

Your experience supports my thoughts that this virus is so variable that there is no one correct protocol for all. Our doctors err on the side of caution.

Thanks for posting and congrats on staying UND.

[flcyclist]

Wow, 16 weeks for a Geno 1a and SVR.  Congrats Ron!!   Thanks for following up and sharing this wonderful news.  Great to have this behind you.

[pooh55811]

That is really good news. Thanks for sharing and congratulations on SVR.

[JasmineT]

Ron, that's wonderful!  Congratulations!  I am so glad it worked out.

[crigger]

Congratulations That is something else.

[ClearJake]

Where do you folks get your information about you have a higher rate of SVR at 24 than 16 and there is not much difference in SVR for 24 or 48 weeks?  I would like to see this chart or graph.  I start week 18 today.  Im very seriously thinking of stopping at 24 weeks but some folks say I should go 48 weeks.  What about 28 weeks, 32 weeks, 36 weeks, 40 weeks and so forth and so on.  I was clear at 2 and 12 weeks.  My therapy was triple with Incivek.  Started on 1200 Riba but doc pulled me off for two weeks and started me back on early this week at 800 mg.  I was bad bad anemic with Hgb of 8.7 I believe.  I don't want to compromise my tx but if the SVR between 24 and 48 weeks or somewhere in between is non-significant, why continue.  This tx is poison and my quality of life is non-existent.  Sitting around the house or sleeping for 24 extra weeks is not helping  me mentally and emotionally.  BTW, Im 1a and 60 years old and had this disease 35 years or so with some moderate fibrosis but overall not bad. Liver is correct size, texture, non tender, no jaundice, no ascites, distention, bloating, or any of the major issues associated with cirrosis (cirrhosis) or liver failure.  Doc wants me to go 48 weeks because I attempted peg and Riba for 3 or  days in 2004.  I dont even think it should count but he says it could have built up a resistence.  If I had a resistence I don't think I would have been a fast responder at two weeks this time with a beginning VL of 5 million and ALT and AST in 300 range which is down to 50s now.  One is normal and one is a few points high.  So, what you think and where is this material I can show my Doc concerning difference between 24 abd 48 weeks.

[spectda]

Congrats on your success Ron. It seemed risky but in the end you won with less detriment to your body. This is wonderful news.
-Dave

[80mecheng]

I am a little confused, you quit because you had a tough time with the side effects?  I assume your doctor recommended against it.  I am on 3X treatment with Vic and because I was UND at 8 weeks, I finish at 28 weeks 4 weeks from now.  It's been a grind but I don't want to do this more than once and oh by the way, Vic and Incivick are one shot treatments.  If it doesn't work you can't try again.  Best of luck, be interested in hearing your results at 6 months post treatment.

[RonGilbert316]

As I said in my origanal post, I am not suggesting that anyone stop tx early based on my experience. Read the link I posted and start searching for information. Google rvr hcv and you will find lots of info. This link gives an actual chart of who the doctors at Oxford believe can be Geno 1 and stop at 24 weeks with SOC inf / rbv combo..I found it origanally by googling rvr hcv. http://cid.oxfordjournals.org/content/46/1/78.full

[frijole]

RonGilbert - you played the odds and won. You are one lucky - and I do mean lucky - fellow.  Congratulations on your SVR

[Dee1956]

Hi there was someone on here who stopped at 4 months, I think it was Michael?  Not positive however he is still UND after stopping early
I have no paperwork however have read they are doing trials on 12 weeks, what a miracle that would be.  There were many times I wanted to stop but I did not want to be treating for a 3rd time
Good luck to you
Dee

[orphanedhawk]

I remember a couple of people, genotype 2 and 3, who did SOC, stopped early and cleared the virus. One had to stop at 7 weeks, the other quit at 16.

I sure don't want to do my last two shots, but I will.