When to stop treatment and how much ribivarin

[darlene]

My doctor lowered my ribivarin to 800 miligrams a day. I was nondectable after 6 weeks of treatment and ALT and AST in 20's.  This must be a good sign.  I only weigh 120 libs and I am 62 years old.  Can I maintain the 800 miligrams per day?  I want to stop treatment after 6 months.  I have read when you respond as fast asI have, it's posible to stop after 6 months.  Dose was lowered because I was so tired and counts were a little low, not threatening.

[zazza]

"This disease is so strange, everything I read and hear so depressing.  My husband, whos is geno 3, stage 2, is not responding as well as me.  I read his is the easiest to cure."

I just went through this myself, where I had genotype 1a and my ex genotype 3. I was lucky and cleared the virus with 72 weeks of treatment. My treatment was doable one day at a time, no extreme side effects. My ex responded to treatment but relapsed, and has just now finished his second round of treatment - this time 48 weeks.

I so hope your husband will be UND by week 12. The truth about geno 3 is that although the majority are easy to cure, about 20 % are not. Is he on weight based dosing? He should have 1.5 mcg pegylated interferon per kilo and somewhere between 13-15 mg ribavirin per kilo.

From your husband's viral load numbers - 10'000'000 and 10'000 IU/ml - I gather that he has at least had a 2 log decrease in viral load. This shows a response to the meds, so if he does not beat it this time, hopefully he will the next time, perhaps by adding a protease or polymerase inhibitor which are under trial now.

I do respect your opinion to stop at 24 weeks, I just think it is a bit of a shame when your treatment is going so well.

I must also join in with konyha: Congratulations to quitting the drugs!

[darlene]

I was one of the fortunate ones.  I had the opportunity to change my environment which affects my life style.  AA and NA never worked for me, but moving certainly has.  I love Taiwan, just hate treatment. No desire to do drugs.  Do miss a drink once in while, but no big deal.   My viral load keept getting lower and lower since quitting drugs and plus treatment.  Still work out almost 2 hours every every day or 6 days a week.  Difficult at first but getting easier and easier.  My counts are a little low, but not anemic.  I'm just a little tired and depressed.  Working out stops my depression.  I guess I should count my blessings and quit bitching.  I'm new to this and still haven't figured out how to handle it.  Everyone seems so up. I'm a 1a and the more I read, the more I get depressed.

Where did you go and how are you doing?  Arey ou on treatment?  Hope all is well for you.  Hopefully, you don't have a language problem like I do.

Take Care

[darlene]

I don't really know what my average viral count was in the past.  All I know is that it keep getting lower and lower while off drugs and my husband insisted on treatment for us.  I very well could have been undectable at 4th week or 2nd week, but had to change doctors end of 4th week. I'm from the States and don't speak Chinese.   My Taiwan doctor never tested my viral count that's why I changed doctors.   I hate this, but it's the only way for me. I don't think the variance is because of  the tests, I believe there is a difference between the tests, because I changed my living situation and that lowered my viral count but did not clear the virus.  As I said before, never had a biopsy but  I will get a biopsy at the end of 24 weeks and if at stage 1, with  low viral count and ALT and AST's normal, I will wait for new treatment.

This disease is so strange, everything I read and hear so depressing.  My husband, whos is geno 3, stage 2, is not responding as well as me.  I read his is the easiest to cure.  He takes more ribavirin and pegainterfern than I and his count is not undectable. His ALT and AST's (180 to 190's)  are almost the same.  My keep going down weekly (Week 6 ALT and AST's in 20s).. He just started his 10th or 11th week.  I sure hope his next test is clear. I believe his 10,000 viral load was 2 weeks ago.  I just don't know - very depressed.  Actually, side effects don't bother me that much - I just look awful - tired and super dry skin.

Appreciate your thoughts.  

How are you responding now to the side effects.

[konyha]

Congratulations:
     "I was still doing drugs (heroin) and finally had to leave the country to stop."

That can't have been easy

[zazza]

Being UND already at week 6 gives you a good chance of getting rid of the virus IF you go the full course of 48 weeks. If you stop at week 24 you will most likely relapse and your viral load will be back where you started - no reduction in viral  load. There really is not much difference between 1 million and 8 million IU/ml. These results might just vary within the variance of the tests used.

As a geno 1 you should only cut treatment short if you had a low baseline viral load, below 400,000 IU/ml, and were UND by week 4.

Since your husband who is a geno 3 was not UND at week 4, he should extend treatment to 48 weeks to get a better chance of clearing the virus, but to do this he needs to become UND by week 12. At what week did he have 10,000 IU/ml?

[darlene]

When I was in the States my specialist said I needed to go on tretment, 2005.  I was still doing drugs (heroin) and finally had to leave the country to stop.  Anyway, they do things so differently in Taiwan.  The first doctor I saw in Taiwan said he could see from my count that I needed treatment and it was not necessary to do a biopsy. That's an invasive process and why do we always overdue things in the States.  If your viral count is high and has  been for years, plus elevated ALT and AST then, of course, you need treatment.  Before I stopped doing drugs my count was approximately 8,000,000.  After stopping for 1 month my viral count went down to 1,000,000 and stabliezed until treatment.  Now, nondectable and ALT and AST's are in the 20's very, very normal for a woman.  My ALT and AST's  were slightly elevated while on drugs.  My count stablized at 1,000,000 until August of this year.  

I don't know, 62 years old, I don't want to extend treatment even if my viral load elevates a little and if my liver biopsy is stage 1, I will stop at 24 weeks.  As long as it's under, 1,000,000.  I am going to wait for a new treatment with a better results.

I'm not anemic, my counts are a little on the low side, but I'm in good shape.  If I feel too tired, I stop exercising.  Now that I'm on the 8th week, I haved more energy.  When I first started exercising after starting treatment, OMG, it was difficult.  I do Yoga, cardio (arobics, step, combat), power weight class, etc.  Of course, not on the same day.  Even if I were not in treatment - I'm not superwoman. Plus, my diet, vegetarian, is really good. I just started eating fish, which I don't like to do, but I know it's necessary.  

My husband is genotype 3a, and is not responding as fast as I have. His liver biopsy is at stage 2.  I think he was  10,000,000 and is now down to 10,000 (approximately)  but his ALT and AST are still elevated.  This is such a weird disease - no pain until the end.

Thank you for your input and Merry Christmas to you.

Darlene

[CMcH]

People usually get a biopsy before TX but is always good to have a guideline. I too am 1a and have probably had this for over 20 years. It is my understanding that 1A rapid responders within 4 weeks and a low starting VL >400,000 have cleared at 24 weeks.
I spoke about this with my NP and she said she would not risk it and I agree. I do not want to waste another year of my life on the TX. I have found that just when you think you can't take it anymore it gets better and when it seems like it is not so bad it gets worse. As you read from many of us somehow it is doable.
Careful pushing your body to exercise to much it is already worn down by meds and needs energy to heal. I used to run everyday do Pilates and Zumba so I understand not wanting to loose your fitness. I am unable to ex. now because of the Anemia but I hope in about a year and 1/2 to be back into shape and HCV free.
It must be hard to be in a foreign country and unable to speak the language while undergoing this TX. Try to stick with it and let your body heal.
Wishing you a happy holiday and a healthy New Year.
Connie

[darlene]

Thanks for your comments.  Sorry it took so long to respond.  I am living in Taiwan, but I am from the US.  I am seeing, of ourse, a Taiwanese specialist.  Unfortunately, I don't speak Chinese but my husband does.  Communication is the problem.  The first doctor I had seen started me on he interferon and ribavirin, but my husband had me switch to a hospital which is much better.  So at week 4 changed doctors.  That's probably why not tested.  Just started 8th week of treatment.

Anyway at my age, 62, with not having had a liver biopsy, I plan to have one at the end of my treatment - 24 weeks.  If my liver is in good shape, I plan to quit.  I don't know if this is realistic or not but I have been living with this disease most likely since the late 60's before testing was available.  I am going to base my decision on the results of my liver biopsy whch I am not looking to having.  Plus, since so many of us relapse, I would rather wait for more effective treatment.

I am a vegetarian, haven't done drugs for 2 years and exercise like crazy.  Even with this medication, I still force myself.  I work out at least 2 hours a day. I use to work out 4 hours a day.   I really believe that my change in lifestye and the medication is the rason I have responed as I have.

What do you think?  I really can realy relate to you and appreciate your thoughts.  Good luck to you.

Darlene

[nygirl7]

Good post. Like always, right on the money :)

[portann]

I see from your profile that you were not tested before six weeks. You don't know if you cleared earlier, only that you cleared BY six weeks.

I believe the strategy of shortened treatment for 1A's is becoming more mainstream in Europe but that is on the basis of clearing at week four. It's now too late for you to know what your status was at week four, so do you want to take the risk of reducing, having come this far?

I'm almost your age and weight and it sounds like you were fit before starting. For me, treatment dragged in the earlier months and I didn't much like its impact on my life. Now, in week 30 of 48, I've adapted and manage fairly well and actively.  If I'm tired, noone notices and I live much as before, except for exercising. And I can't talk as much.  It still makes me breathless but noone complains about my talking less.

When this is over, I'm going to exercise like a fiend and talk my heart out. And week 48 doesn't seem far away because I only take it a day at a time and hope I come out on the right side of my 50-50 % chance to SVR.

If you decide to do the full 48 weeks, it won't be as hard as it seems to you now, with the tempting idea of 24 dangling before you.

I wouldn't consider it, if I hadn't officially tested clear at four and might be reluctant even if I had. Anyway, your doc would have tested at week four, if he were considering it as an option.

[karaszt]

My first time in treatment, I had been UND @ 4 weeks, stayed on tx for 36 wks, and relapsed within a month of quiting. There are just no real guarantees with this stuff. I know it gets really hard, but this time I will stay the whole course, even if I have to take a med leave from work. Just so that I can say I gave it my best shot... Good luck, but just hang in there.

[nygirl7]

As noted above an UND at six weeks is not considered a really rapid response really - that would be week 2 or 4.  If you are a geno1 you should continue onwards to 48 weeks. You're doing great but with only 50/50 odds in the first place it makes no sense to me to drop them down any lower.

Being UND at week 6 is a good sign but you will need to finish treatment.  800 is weight based for 120 pounds so you are fine there, I'm not sure why he started you higher but the more the better during the first twelve weeks which are the most crucial.