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1b svr's??

It seems we have had some bad news on some latest posts, which is so regretful.  Are there any 1b's willing to share there svr experience and stats?  Need some encouragement here!

I am 1b, 2/3, vl 1million  clear at 12 and 36 weeks.  7 more weeks to go.  Having alot of anxiety this leg jaunt!
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Avatar universal
I agree with your approach to this subject and the belief that too much information too early can lead to unecessary anxiety. I will say that if I were facing the prospect of TP I would try hard to eradicate the virus beforehand or at least knock the VL down as much as possible. The Vertex drug looks promising and that might incline me to try and wait for VX-950 but otherwise I'd treat ahead of time if I had the option. I wish you the best and hope you'll post your story as it unfolds. Mike
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Avatar universal
Mike,

Thanks for the reply and the link. I have an associate who has a similar story as yours, except for the SVR part. I've always had the motto to learn on a need to know basis when it comes to my situation since getting too far ahead can result in info overload, or worse, fill your mind with worries about things, many of which will never come to pass. But as I inch closer towards tp I am gathering info from all sources. Thanks for sharing your story.

Best regards,
PK
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Avatar universal
Here is a medscape article on managemnet of HCV in liver transplant recipients:

<A HREF="http://www.medscape.com/viewarticle/523521?src=mp/">LINK</A>

Mike
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Avatar universal
Hello PK, I was transplanted June 18, 2000 and started treatment in late July or early August of that year. I rejected twice before I started TX or I should say I was diagnosed and treated for rejection 2 times. Looking back on it I'm not positive that I was rejecting. The biopsies for rejection and reinfection with HCV are indistinguishable and the protocol in 2000 was that if the episode was close to transplant they'd call it rejection and if it was further way they'd call it HCV. So I was treated with  intravenous solumedrol(steroid) on those 2 occasions. My first treatment was with regular interferon 3x per week. I can't recall the dose but I could find it if you need to know. My recollection is that it was a reduced dosage due to fears of rejection. I took 600 or 800 mg. ribavirin with the injections. I treated for 48 weeks and never cleared. Then I waited for 5 months I believe and started on Peg-Intron and 800 mg. ribavirin. Again the dosage eludes me at the moment but I'm sure I have it written in my journal. I cleared late in treatment - week 46 I believe - and stopped at 52 weeks. I relapsed within 3 weeks. I waited 1 month and started 180 mcg. Pegaysys and 1000 mg. ribavirin. At that time my weight was around 150 lbs. I cleared at 12 weeks and remained undetectable per Heptimax (<5 IU/ML) for the next 61 weeks at which point I stopped TX and am still clear today. I never rejcted while on TX and it is my understanding that interferon doesn't generally prompt rejection. That was a serious concern when I started this journey but today I don't think it's thought to be an issue for concern. I researched this a while back but can't recall why it is that rejection isn't an issue. Like everything else I can probably locate it if it's important to you. My biggest problem during TX was anemia and I treated with Epogen 40,000 once or twice per week depending on my hemoglobin and the bone pain that I attributed to the drug. I think that about sums it up. If you have any questions don't hesitate to ask. I wish you the very best of luck. Mike
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Avatar universal
Hi Mike,

If I read your post right then you have treated twice post-tp ?
If so, how soon after tp did you start each tx ? If not, then how soon after tp did you treat ? Any prob getting the right dosages for all the meds ? Any rejection episodes ? I appreciate any answers you can give me. I may have to make a decision regarding this subject in the future and I'm sorta collecting any info including personal experiences. Thanks in advance.
Best regards,
PK
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Avatar universal
Wow, it's a reunion!  Hi to all my old friends.  Galen, best wishes for this new adventure; lucky Scott.

Former 1b here, as well. Started with VL 8.3 million IU; stage 1, grade 2. I started twice with PegIntron & Ribavirin and had to stop early due to adverse events (ER, 3 days in ICU, packed red cell blood transfusions...)  I washed out for six months and switched to the best doctor in this area; much, much thanks to those who helped me through those times. On the third go, Feb.03-Jan.04, I was able to complete 48 weeks therapy with Pegasys / Copegus. Most of the time I was riding at WBC around 1.4-->1.7, and HGB in the low 8's, although I dipped below 8 some of the time. I was using Procrit and Neupogen most of the way through; 2x/week for about the second half. In addition to the Procrit and Neupogen shots, my ribavirin dosing was greatly modified during the 2nd half: 16 days totally off in weeks 25-27, and reduced from 1200mg to 600-800mg most of the time after that. In the end, I pushed it to 1000mg for the last month on my own... I don't remember precisely, and don't have the papers in front of me.  
I got my 2-year SVR just 2 weeks ago.
Lasting effects: biggest challenge is dry eyes; seems permanent now, likely Sjogren's.  Gained all the weight back and then some; having thyroid rechecked.  Joint, skin, and memory problems remain; the arthritis stuff is more under control.  I probably had HCV since my childhood (I'm 59 now), so that's nearly five  decades of rampage; of course, I have to reckon with aging, as well.  But now I feel frisky, and much more energetic and well than in many years.  
I value the lessons I learned and the friends I made, including here at MedHelp.  Like it or not, dealing with HepC contributed to who I am today.  Good luck to all of you who are stil fighting the dragon.
Majneni
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Avatar universal
Hi, Galen!  I'm glad to hear that you are doing well.  It seems to be reunion week here.

Mike, someday we'll get together and have a beer or whatever strikes your fancy.  I'm buying.
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Avatar universal
Wow!!  I don't come here too often any more.  Once in a great while I check in when I hear about someone who has just been dx or starts tx.

Hello to chevygal55, MikeSimon, Pharoh, Cuteus, Susan400, Madbyron, and honey11.  Long time, no see.

For those who don't know me, I'm now 52, a former 1B, had hep since 1972 (needle stick working at the hospital, got sick at the time but blood test said probable hep b??), dx in '94 finally.  Started tx with Peg-Intron in 10/02, started neupogen and procrit at week 9 for the duration, added in lexapro, protonix, ultram, benadryl, ambien, imitrex, and lotsa vitamins along the way(seems llike there was other stuff, but I no longer remember what) Tested negative at 12 weeks and remain so today.  I got my two year all-clear last September.  Just found out last week that all the vomiting in early tx gave me a hiatal hernia, and I've cataracts from tx.  Other than those minor pests, life is wonderful.

This coming weekend I will be inviting to my home, hopefully permanently, a 13 year old foster kid, a boy named Scott.  Here we go into a new phase!!

I wish all of you the best!  Kill the dragons!!!



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Avatar universal
No skydiving and I am seriously considering never riding my bikes again and even selling them both. I hate to give up motorcycles but it seems to me that the drivers out there are worse and worse every time I drive a car let alone a bike, so that might be it for Chopper Mike. I have to say that I haven't ever heard of anything like your story. I am thrilled that this incredible thing happened to you. It couldn't have happened to a nicer guy. And believe me, your research helped me immeasurably and it was you and a few others that are partly responsible for my determination and good outcome. So thanks again Pharaoh and stay well my old friend. Mike
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Avatar universal
Mike, I've got to keep checking in to make sure you are still in one piece! Have you taken up skydiving yet? :) I'm flattered that you found my information searches worthwhile, but knowing that you were on your third round PLUS a transplant was truly inspirational to me.  I looked up the word "determination" in the dictionary and one of the definitions was "mikesimon".  


Chevy/Cuteus - Yep. Go figure.  Undetectable at week 2 and every check after that until after my last shot.  I was crushed and my doctor was flabbergasted.  It had to be a false positive, so we checked again just two weeks later.  Not only was it positive again, but the increase was what you would expect in two weeks.  I did not have a biopsy before I started tx, so I decided that since I had failed tx I would see exactly what the status of my liver was.  I waited ten more weeks to do the biopsy because I was busy moving and I was so bummed out about failing tx I just didn't want to think about it anymore.  When my doctor ordered the pre-biopsy bloodwork I asked him to order a PCR to see how high my VL had climbed and he thought that was a good idea.  Can you imagine how I felt when that PCR came back undetectable?  Well, I was happy and mad at the same time -- I was afraid to believe it.  So was my doctor, so he ordered another PCR.  It came back undetectable, too.  My doctor had never seen anything like it, so we tested again in two months -- clear again. Then again at the one year mark -- clear -- and again at two years -- clear.  Three years will be in June and I'll get tested again.  I believe it now, but there is still a tiny little bit of doubt hanging on.  If you could have been inside my head when I had two positives followed by two negatives in the three months AFTER my last shot, you'd understand the lingering doubt.  Oh, I almost forgot, the biopsy came back Grade 1, Stage 0.

I suppose it's possible that I got two false positives back-to-back and that I was really clear all along.  That would be the simplest explanation.  The other explanation, which is just a theory, says that there is an optimum effecacy level for the drugs that was realized, in my case, as the drugs receded from my body, which in turn caused the desirable bio-chemical reaction that rids the body of the virus.  That's an over-simplistic description of the theory, but I think you see the point.  Whether I was the victim of sloppy lab work or unwittingly identified a subject for future research, I don't know. In either case I have five consecutive PCRs done over the last two and a half years that are undetectable and I like that.

GT
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Avatar universal
I don't think its just 1Bs relapsing,,,,,There is and has been 1As relapsed.  My dr told me at one time,,,,not much of a difference in A or B,,,,It was the big #1,,,We didn't want as geno lol

My hubby and I both former 1A's

Probably had from 70's,,,,,My viral load before starting tx was 8.5 Million
Mr. Honey was 630,000
his enzymes were high at time and mine have always been normal,,,,low normal.
No biopsies either one of us due to dumb dr we had in beginning!
Both cleared at 12 weeks,,,,continued on for 52 weeks!  That was the normal weeks that our dr had geno 1's go,,,,Why? Not sure but we did that and probably missed our meds maybe once or twice during the whole year,,,,,Never once skipped a shot.  I was put on procrit towards end of treatment for low hemo.

Robert said it well,,,,,Stay the course!  Use your tx time to get well,,,follow the schedule,,,,tiresome,,,,but you will get there!
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Avatar universal
lots of veterans making a quick visit, nice feeling! madbyron, pharaoh( I always forget it was you with the positive VL who cleared on your own post tx, like Daryl). I will make a note this time! glad to see your body battled the last of the remaining stubborn bugs.

HCA: couldn't you extend past 48 wks since you were not clear at wk 12? One of the presentations of a recent AASLD conference was on the higher relapse rate on detectables at wk 12. Some of them did not even know they were still detectable. Blood samples were re tested,  after they relapsed, with a more sensitive  test. THese folks were not really negative at wk 12 into tx.
Is there a reason you can't go a tad longer since you have relapsed before?
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Avatar universal
just wanted to jump in & offer vigorus agreemnt to all;reading last couple of days has really made me think about maximizing SVR...comments about diet & exrcise& keeping active w/ life&family-i am grateful for positive reinforcemnt! and i really mean that...I am taking steps to stay on THE PATH,but it's about a K-10 (whatevr they call tuff mountain climbs! )and it sure helps having Guides who have been there & done that! Not to mention the invaluable support,info,insights & humor of everyone on this forced march togethr--THANKS & GOODLUCK to ALL
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Ha friend, how is life treatin ya today? I to have been thinking , how can I increase the odds of attaining svr. Started increasing my intake of raw veggies and fruit. Grapes have a good anti-oxidant effect and helps to flush toxins out of the ole body. I'm doing some suppliments, whey and n-acetyl cystene. This helps us maintain good glutithione levels in our systems, glutithine which is a natural liver anti-oxidant flushs toxins and is also clinically used for tylenole poisoning. Look at Rocker with his diet.He ahieved rvr.

Dyce
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Avatar universal
1B infected in 76, diagnosed in 02. Initial vl was ~ 500,000. 2/2 on biopsy. Treated in 03 with 180 mcg pegasys weekly and 1000 mg ribavirin daily for 48 weeks, except for a brief peg reduction to 135 mcg due to neutropenia. Started Neupogen at week 16 or so and resumed standard peg dose. Undetectable at weeks 12, 24, 36 and 48 and at 6, 12 and 24 months post. I credit dose compliance with the result, particularly the Riba, which at my body weight of 63.5kg or 140lb throughout the year of treatment, amounted to 15.75mg/kg of body mass. I now weigh 175 lbs and feel better than I did at any time in the previous 30 years. My immune system wrecked my thyroid and gave me psoriasis, which is now gone, before tx. The thyroid, of course, did not recover.

Many other 1A&B SVRs, who evidently no longer frequent the board, have similar stories.
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Avatar universal
I don't mean to suggest that other 1s who have not had the good fortune to achieve SVR are less than fully compliant in their dosing, but that of the controllable variables, this is an important one. Lucky genes, however, seem to make at least as big a difference.
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Talk about a name for the past!!! It is so nice to see your name here again. In case I never thanked you for all the information you provided back in the day allow me to thank you now. You and a few others made my life a lot easier in the old days and I really appreciated it. Pop in once in a while why don't ya. Good luck Pharaoh. Mike
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Avatar universal
I'm geno 1 (don't know/care if a or b).  I had a VL of 1,380,000 IU/mg, stage 3, grade 3 when diagnosed in Oct of 2004.  Started 48-week combo treatment in Feb of 2005.  2 log drop at 4 weeks (6,700 IU/mg), undetectable at weeks 12, 24, 36, & 48. Finished on 26 January 2006. In my heart, I know that I'm going to beat this thing.  

I learned during treatment that the only thing that I have control over is my attitude.

Stay the course and remain positive.

Robert

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Avatar universal
I'm like NYgirl.  I'm a 1A/1B too.  I haven't yet obtained a clearance. This is my 8th attempt at it.

Susan400
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Avatar universal
Wow!  There's a name I haven't seen for a while.  How are you, madbyron?  I guess I'm not the only one who still lurks on the site.



Began tx in September 2002, 1b, VL 750,000.  Peg-Intron and Ribaviron.  Double dose of Peg for first eight weeks, then standard dose.  1000 mg Ribaviron throughout tx.  Tested clear at weeks 2, 4, 12, 24.  Stopped tx after 42 weeks (36 weeks after testing clear).  Last week of tx, VL 750.  Two weeks post tx, VL 7,500.  Ten weeks post tx, clear.  Twelve weeks post tx, clear.  Six months post tx, clear.  Eight months post tx, clear. One year post tx, clear.  Two years post tx, clear.
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Avatar universal
Well, as a 1b, I certainly hope the problem isn't with 1b's, but to be honest it has crossed my mind.

I'm a 59 year old 1b, pre-tx 1.5 million, stage 3, clear at week 6.
Based on age and histology, decided to extend beyond 48 weeks and am now about to enter week 55. The doctors I've spoken to in this regard are somewhat divided with most recommending only 48-weeks based on my early viral response but others suggesting that my genotype, age and histology put me in a higher relapse group. Can't say I ain't sweating it out. LOL.

BTW, cgd, how old are you?

-- Jim
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104550 tn?1237913591
I know I posted my relapse a few treads ago but over the course of the last couple of weeks I thought a few good reports were coming in of people getting to svr. The good ones are the ones that keep me trying knowing that people do clear and I WILL BE THERE SOME DAY. Don't ever give up
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Avatar universal
HCA
I am 1a/1b,and take my last shot {48} on Monday.
I was 1.3m pre-tx
606 at 12 weeks
n/d at 24 and 36.
Don't ask why but I feel I shall relapse.
I'm not negative-I've treated four times since year 2000,and this is the first time I've tested undectable(<25).
I've studied the odds as much as anyone,and immersed myself in internet study.
I feel that all responders have a 50/50 chance of SVR-you either relapse or you don't-it's a lottery.
Yes ,we have had some relapse posts recently,but they are self selecting.
Most patients are not as well informed as the community contributing to this site.At my local support group I meet patients who don't know their geno-type from their personality type.
The point being that there are thousands of SVR's we never hear about and users of this forum do not represent patients as a whole-only patients who are not ignorant or in denial.
There are 1b's achieving SVR every day.
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Avatar universal
I hate to say it but I am about to waddle.  A very slow and steady weight gain (22#) since tx stopped and still don't smoke, so I got a double whammy there with the metabolism being slow.  I will see an endocrinologist in a couple of weeks in hopes he can get my thyroid straightened out.  I feel pretty good since these days.  Layla told me once she got her thyroid leveled out she dropped 6# without even thinking about it.  Anyhoo, I can think straight and function without gasping for breath.  

Once in awhile I stop by to see what is going on here, glad to 'see' ya and hear that life is treating you well.  Take care Chev.

Tx is so difficult and no one really understands how difficult it is except those of us who have been there.  Sometimes I look back and wonder how in the blue blazes I did it.  I wish this tx cured everyone without the sides and worked the first time.  Good luck to everyone.
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