I have had Hep C for about 20 years. My viral load is very low--about 5,000. My enzymes are elevated. My liver biopsy came back as stage 1-2. My question is: With such a low viral count, do you think I should seek treatment? Thanks in advanced.
The 64,000 dollar or should it be the million dollar question?
The answer comes only from you. How comfortable are you about waiting for something worse to show up, about wondering if it will or not, and how long before it does? Read the answers in questions posted before yours and you decide what is best for you. read what I just answered to kaoticbttfly on the post "scaredforher" of july 11. the reasons why we treat or not are many.
suerte, and best to you
People decide to treat (or not) for different reasons. I also had a low viral load. My liver biopsy showed close to zero damage. But I have most likely had this almost 30 years and don't want to take chances when progression will change. I have a friend who had similar stats as me then within 2 years he suddenly had 2 to 3 damage and his VL jumped. I also hate feeling contagious and wondering if every little thing is from HCV. I have allways kept in good shape and ate very healthy and felt it would be better to do this while feeling better and I believe SVR chances are better when your younger and healthier. It also states right on my meds that it works best when viral loads are low. Well that was my decision. I wish you the best in making yours. It's most important your comfortable with your decision. LL
This is such a personal decision for you to make only after you have researched and researched. Even then,,,,you may still not have a clear reason for treating or not. You are in a good situation now with biopsy and viral load is low,,,however,,viral load is by no means a result for liver damage. The plus side of lower viral loads is chances of svr are better on treatment. Also viral loads flucuate so much from day to day,,year to year. I personally am treating now,,,just to try to clear this out of my system so it won't be a skeleton in my closet! I have read and researched so much and honestly you just never know when hcv is going to start progressing quickly or maybe maintain for years. I don't want to take the chances....
your virul load is not what you want to look at as far as treatment is conserned its how much inflamation is there and it sounds like you have some.and there are other things to worry about too like cancer the longer you have this the greater your chances of getting it is. and the better your health is the better your chance of clearing the virus the first time and keeping it gone. treatment is not a easy thing to do so you really have to want it.you should talk it over with both your doctor and your family and make sure you have the saport of both because you will need it.i wish you luck in what ever you deside
And let us know how you are doing.
Depends on your Genotype, very big difference in relapse rates, response rates, SVR rate, etc.
I couldn't hack the treatment despite being highly motivated. Alot of people can't. Then there's the chances of permanent side effects that you should factor in as well.
I'm not trying to scare you, or add to your burden of the decision, but you should base your decision on as much factual information as you can while considering all factors.
I hope that whatever decision you make is the right one, and I completely understand the "I just want this thing out of me at all costs" way of thinking. Let us know what you decide.
Predictors of good response:
-non-type 1 genotype
-<5 yrs of infection
-<2,000,000 copies/ml viral load (850,000 IU/ml)
-low iron liver stores
-<45 years of age
-negative or 2 log reduction at 12 wks
Good luck with your research and in making your decision on whether to treat or not at this time. We are all here for you so come back often and ask questions.
Do you have stats for relapse rates for type 1a's after six months post tx? Any for after a year?
I don't think that these commonly referred stats include the relapsers, do they?
(I just would like to know)
The only thing I have is that my dr had originally told me that 1's start with a 50% chance. If 2-log drop or undetectable at 12 wks, the % increases to 60%, then up to 70% if undetectable at the 24 wk mark. However, I have not seen anything in reports/studies to document this.
Hey there! Glad to see you doing good these days! Yes those rates take in all,,,,people that don't finish,,,relapsers,,,My dr said same thing as Hph5477 on 1's...We start at about 50% and then if 2 log or undetectable at 3 months,,then jumps to 60% so jumping up to 70% at 6 month mark if no detect isn't too bad of odds for us 1's is it?
LOL I don't know why you are doing extended tx? If your biopsy was good and you are not trying to reverse,,,and also if you cleared at 3 month or had the 2 log drop,,,48 to 52 weeks should get it for you! Alot that relapsed,,,extend or if liver damage,,,trying to reverse..
what i've read state those stats for ALL genotypes not only ones, I am not sure what studies these drs are quoting but the ones I read do not support those stats for geno 1, maybe someone can show us the links?
now, go play.
If you apply the 32 and 36 week 'add-on' theory, from the study mentioned above, you should then go for a minimum 59 weeks for 80% odds of SVR, or 63 weeks for 90% odds. Of course this is 'soft and fuzzy' data to apply to your case, BUT it is a guideline, with some validation behind it. The principle is the more important point: after clearance on PCR testing....go for a long time...at least 36 weeks, or more. For tough cases, like type 1 relapsers, slow responders, and previous partial responders, many patients will go for about ONE YEAR, AFTER initial 'undetected' lab result. I went for 13 months after my first 'undetected'. Longer helps your odds, clears the liver of infected cells more effectively, and reverses damage better, even in your situation with relatively minor or minimal damage.
The other side of the coin is the potential for more, or prolonged side effects, but my attitude was CURE FIRST, worry about the fallout after. Eradicate your virus completely, so those issues will never again pose a threat to your health and your liver. Keep up the good work and the great attitude!
Humor goes a LONG way with this tx...and I used to laugh at my crazy behavior, nasty symptoms, and weekly rituals all the time...to maintain a lighter approach toward the pain and suffering. My wife appreciated my irreverence, and lack of self-pity...and enjoyed doing things to make my life easier. Many, many nights of relaxing body massage allowed me to sleep deeply, for awhile, even during the very worst side effects. It's been almost ten months since ending tx, and I can barely remember the feeling....your mind blocks it out and moves on. Life becomes hopeful, relaxed, and fun again! It's all worth it.
Rafael, I started with a VL of 141,000. I let tx go for about 7 years. When a biopsy in 2002 showed damage was progressing, I decided the time was now. I am 52 and in good physical shape so I figured that I should treat before it and my health got any worse.
If you decide to wait, definately stop drinking (if you do) and avoid blood-to-blood transmission with anyone. There are a lot of herbs that seem to help symptoms, but others are bad for the liver. Many here know which is which and can help on that. Stay in touch with your doctor.
If you decide to treat, welcome to the club. Remember that no matter how good or bad you're feeling, someone here has probably been through it. Stick around and ***** or help, as the spirit moves you--either one is OK here. Good luck, whatever you choose.
Want2Live, I thought that the cure rates included relapsers, those who didn't finish, and those who did finish. I could be wrong.
There are studies out there showning lowered dosing does lower your odds. Doing extended tx is also a personal choice and it seems to me people are pro or con depending if they are deciding to do it or not. There just aren't enough studies out there on this yet. I had more than a two log drop at 3 months but was not clear and I had low dosing the first month so chose to do extended tx. I would make the same decision today if I had to decide again. To me 50, 60 % isn't very good chances or at least not good enough for me. I couldn't say I would recommend it to anyone. It's a long time to extend tx and the extra risk is really personal. It just happens to be a risk I find worth it, or hope it will be. I did get my end of tx PCR today. Undetectable. One more shot then the real wait begins. LL
The reason you should seriously consider extended dosing in your particular case is as follows: The response curve over 12 and 24 weeks indicates how quickly oe slowly (also effectively or ineffectively) that the interferon and riba are killing off the HCV virions....while they, as always, continue to replicate. Even when you read 'undetected' by the most sensitive tests, there are usually scattered virus copies in your blood and liver, living and reproducing at lower and lower levels. It's like the half-life of uranium...even though you cut the strength in half every week, there continues to be smaller and smaller amounts left, beyond detectibility, until that very important ZERO hour is reached...when the last particle is finally eradicated. In slower responders, or those with much higher loads, that ZERO hour comes much later than in very rapid responders.
Point being: If you stop a month or a week, or a day before the real ZERO hour...YOU WILL RELAPSE! It must all be gone, everywhere in the body.. to remain undetected for the long term...or as we call it SVR!
Please look at all your pertinent variables and make a decision with yourdoctor that maximizes your odds. You do not want to have to treat again! You have read about my experiences, and after a 14 month first round, and relapse, I did 72 weeks at high dose with lots of Riba full term, and the necessary Procrit. It did the trick. I wish they had been using Procrit in 1999 when I did the first round...I could have stayed on longer, and kept the Riba at full dose.
Good Luck, and I hope you beat it this time around...for good!
Just wanted to clear something up that was posted above. The stats posted for geno 1's is correct, but other factors add up to, like age >30, female, and few others I can't think of right now. But the stats, or percentages, DO NOT include all people, only those that complete full treatment. This was one of the questions I specifically asked my Dr before. The people that wash out, or just cannot finish are not included. What I was told, was that if you can tolerate full dose the whole 48 weeks, % for geno 1 is like 70-80. That was from actual patient accounts in my dr's office. Reducing dosage dramatically effects SVR%.
Personally Rafeal, do your research, and make a decision you are comfortable with. I would do the lifestyle changes, take my herbs, and wait. Better drugs are on the horizon, and you have some time to figure out what to do. Best of luck
The two end of treatment (EOT) studies I have seen show SVR odds for geno 1's being between 75% and 84% for those going 48 weeks. The 75% and 84% figures apply at week #48. As you remain clear post-tx, SVR odds continue to rise well above 90% - to the point of 98%+ at 6-months post-tx.
Factors in the studies: 1.) - the results include patients who had anywhere between a two-log drop and undetectable by week #12. 2.) - the PCR they used to measure viral blood levels had a lower limit of 100. 3.) - I don't have the studies in front of me right now but I think they may have used a lesser dosage of riba in at least one of them.
These factors make me believe the EOT odds are somewhat better for those who are completely clear by week #12 and somewhat worse for those who have not cleared, but have met the two-log drop criteria. Though that's pure specualtion on my part - I have seen no study that breaks the data down this way.
I have an article that states the below about %SVR and extended tx's.
Continuous Non-Detectable Viral Levels
In the end, the model predicted that patients infected with genotype 1 must have continuous non-detectable viral loads during treatment for at least 32 weeks to achieve an 80% SVR. To achieve a 90% SVR, patients must have non-detectable viral levels in their blood for a minimum of 36 weeks.
Of course, we all know that many of the studies being done consists of very small patient groups so is there any real reliability to the data? My VL at 12 wks was 370 and undetectable at 24 wks. My PA had suggested possibly extending my tx an additional 12 wks. The PA relocated and now I see the NP. The NP was pretty emphatic about NOT extending tx, however, she has lightened up some since and is now leaving that decision up to me. Also, I'm told that had they used the same test as was being used a year ago, I would have tested as undetectable at 12 wks. What do I do? I haven't really made up my mind yet.
Good luck with your continued successful treatment.
There is a significant drop in one's ability to respond to treatment that occurs after the age of 40 yrs.
If you are around 40 yrs. old it might be better to treat now rather than to wait until you're 50 yrs. old and 20 lbs heavier.
Thin people seem to respond better than heavy people.
Your dr. may suggest that you wait to see what kind of new treatments come out in the next yr. or so, but don't wait too long.
Consider clinical trials, but be carefull. Some trials offer a way to reduce medical costs.
Consult a G.I. and/or a hepatologist, then get a second opinion if you don't have compleate confidence in the first dr.
Consider all of your options.
Considering your low viral load, I would lean towards recommending that you treat now, however...
I'm not a dr., and I don't have your chart.
You can contact The American Liver Foundation @ 1-800-223-0179 for a list of QUALIFIED drs. in your area.
Hey "dudette"....LOL I'll never forget that one!!!!!!! But if I were YOU...I'd go as long as I possibly could.....See, I was EVR @ undectable thoughout 48wks...then BAM!!!!! I relapsed!?!?!?!? I can't keep from thinking IF I had gone futher I might have made it the 1st time. But life goes on and here I go again!!!!! I hope one day my doctor can tell me WHY this happened...my new doctor that is. I was so dumb to the virus, that when I was referred to dr.goofy, he told me he only treated for 4wks and one time only. I said okay. I was SO STUPID!!!!!! So just my 2 cents worth....GO FOR IT GIRL!!!!! I wish I had known rev____, when I first found out about this horrible virus!!!!! I love ya girl!!!!
I also told my GP who referred me to dr.goofy about him and some of the things that he did and didn't do for me...like letting his recept. tell me I had relapsed in the parking lot!!!! And my GP is wonderful. He said I'm glad you told me these things...otherwise I have no way of knowing...and he also said he wouldn't be referring anymore patients to HIM!!!!
See I'm a "extra special patient to him and everyone there". I almost raised his "prized nurse"!!!!!!! LOL So I get Special Treatment there!!!! YEAHHHHHHHHHHHHH!!!!!!! He gives me samples when I am sick...even those expensive yeast infection pills...diflican, and I think they're about 15.00 each, even w/ my insurance! See I AM SPECIAL!!!! LOL
BTW where did ya get your new toys???? I order a lot from QVC. But I have vowed not to watch it anymore until I get my one and only credit card paid off!!!! I only owe them $600.00!!!! Yikes!!!! But I'll have it paid off before Christmas. I do have 2 more things coming. A beautiful jewerly box..that jewerly kept in it will not tarnish for 40yrs. I always have worn GOLD, but I've ordered a lot of white gold and sterling this summer. My jewerly box is a birthday gift from my in-laws.....my B.Day is Saturday! 49!!!! OUCH!
And I still have a denium top coming. I got the most beautifil sweater from there on the computer....under Clearance...it was 70.00 and I got it for 23.00!!!! I love QVC!!! Shopping delivered right to your front door!!!!
Talk to you soon. Let me know what you decide on extending tx. I'm sure you'll make the best decission!!!! (((((HUGS)))) Cindee
Hey friend! Funny you are dwelling on those thoughts, I am too...big time. see, i got on this bus..."tx 48"...began wondering that if i got off at stop 48 will that put me close to my destination of svr?...so, when that stop came, I did not ring the bell...I stayed in that seat peering out the window...wondering which stop places me closer to SVR...hum stop60, 62, 66, 72? agghh! I passed #55 on Monday...at this rate I might go around the world in two years...I don't know when to ring the bell! lol maybe I'll just bang on the doors...let me out, let me out! or when I see Indy's svr bus intercepting mine...I'll climb out the window!
We'll figure it out soon enough, huh?
Happy Bday Cindee!!! My first born is 30 today! Happy bday baby.
WOW! a 30yr old child. I have the crow's feet to prove it, and the stretch marks...
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