Can't get to UND

[BThompson4]

Reporting in with last pcr.  Not a good one.  I seem to be hitting a wall as far as killing virus goes.

geno 1a; post-transplant; 5'10", 200 lbs; age 51; liver age 57; mild NASH; diabetes; viral load greater than 3.5 million pre-tx; peg-intron, 1200 ml ribavirin.

week 10:  1430 iu/ml
week 12:   561 iu/ml
week 15:   447 iu/ml

PCR's are pointing to tx response that does not look strong enough to SVR.  Not suprising, as geno 1 high viral load big people relapse at a very high rate after ostensibly being UND for long periods of time.  I am willing to go 72 weeks but its a mute point if I can't get UND.  Thank god I have been getting fairly sensitive pcr's and not the less than 600 iu/ml variety.

Get week 18 pcr tomorrow; if I don't clear by week 24 I see little reason to go on with SOC with vertex in the works.  A maintenance dose of interferon sounds like it could limit the damage until vertex approval.

[LvdByGod]

the fatty liver decreases your chances of clearing... by losing weight you could definately increase your chances... i know easier said than done, spoken by one who tries weightloss and fails...

i went 2 1/2 yrs on tx cause i had a viral breakthrough at 6 months into tx...  i went from <600iu to 2,000iu... it was very sad... but it eventually went back down and stayed gone... i finally got off tx in april and have been clear ever sence... so it is possible. i do consider my being clear a miricle from God but He is available to everyone!!!

sandi

[NYgirl]

I understand how you feel but DONT GIVE UP.

I had the SAME problem!
week 4 - 411
week 12 - 419

No testing until week 24 because my doctor would NOT let me give up...and at week 24 I was FINALLY UND.

Because it took me longer I decided to treat for 72 weeks - it gives us much better odds for SVR.  It's POSSIBLE to still get UND you know - this has happened to a bunch of us!

Wait until you get to week 24 before deciding anything. That really is the breaking point - you have so few of those damn damn DAMN things left - you just have to zonk them and be done with it!

My prayers are going to be with you. I nkow how frustrating it is to do everything right and still just NOT be able to accomplish it. Frustration is an understatement isn't it.

Debby

(Did you talk to the doc about upping the Riba or something for a few weeks to see if it just MIGHT help?  I don't know any real info on that but crazy me...if it's only for a feww weeks maybe it could help?

[friole]

It does sound like you need to do something.  How has your hemoglobin been doing? If you haven't had drops in hemoglobin it could indicate that you are underdosed with ribavirin.  I think you should at least increase the riba, but I like double's suggetion of increasing the INF too

YOu really are responding - just not fast enough. I would want to do at least 36 weeks after clearing.
frijole

[DoubleDose]

Here is a current link to a study being reviewed at the Liver Conference (AASLD).  It is relevant to your situation.

http://www.hivandhepatitis.com/2006icr/aasld/docs/103106_a.html

This will provide some scientific support to your situation, if you decide to pursue revised dosing strategy with your doctor.

DD

[DoubleDose]

My bet is that with a slight bump in Peg-Intron dosage (about 20% to 40% increase), and a bump in Ribavirin to 1400 mg. you would probably get undetected in a few more weeks, and with a 72 week tx, would have a great chance at getting the SVR.

I got undetected at week 19, and did double doses of Peg-Intron, along with 1,200 mg/Riba.  I went 72 weeks, and got the SVR.  I weighed about 175 lbs at the beginning of tx.  You weigh 200 lbs.  You are a responder, you may just need an incremental kick in dosing to get really undetected.  Any way you cut it, you will need 72 weeks of tx.  Get the undetected before week 24, and you are in business.  Do not give up just yet!!!!!

Talk to your doctor about the possibility of getting a higher Peg-Intron dose (do you use the vials,... is there any excess left in the vial???? )  Also explore using 1400 mg. of Riba.  You are big enough to tolerate it, and may even need that level of dosing....especially if you are not seeing a significant decline in your red blood cell count...to the 9-10 range.

Customized treatment is really the name of the game, and you are very close to having the right dosing.  If your doctor is smart, flexible, and experienced, he may let you try a bump in both drugs.  Do a few PCR's over the next 4 to 8 weeks to see if and when you get undetected.  Adding horsepower to the dosing can really help!!!!  Several AASLD studies being released currently at the annual conference bear that concept out completely.  Higher dosing =  higher SVR rate.

Good luck.  Keep us posted on your progress!!!!

DoubleDose

[BThompson4]

It is agony being close but not making much progress!  Seems to go with the geno 1 and high vl.  Not quitting by any means but some good numbers would be nice.

Congratulations on your continued undetectable.  Hope your last 12 weeks goes well!!

[BThompson4]

Thanks for the encouraging words.  I am hanging in there, but spirits have taken a hit with last two pcr's.  In no way thinking about quiting.  My thinking is actually clearer on treatment and neuropathy [in my case, numbness] is better now than in the last five years, no doubt thanks to massively reduced viral load.  I am really enjoying the increased concentration.  I might be better suited for maintenance with vertex so near.  I will post my week 18  pcr in a few weeks.  A big drop would be nice.

[wonderingwhen]

I also had a problem clearing at 24 week, I was soo close that it was minimal, but I did clear between 24 and week 28. I and my Dr decided to extend tx to 72 weeks instead of the 48. I am currently at week 60 and still undetected. Tx is miserable but hope to see a good outcome.
I was depressed when I didn't clear at 12 weeks and was soo close at 24, I think I know how you must feel. Hang in there and I am sure you will clear.

[Penelope1911]

I have been thinking about you for sometime now...your story so inspired me a few weeks ago. DONT LOSE HOPE IN THIS THING!!! To be a 1a and be UND by bDNA,(<615) at week 12 is remarkable!! At least wait until your "1/2" way mark at 32wks before making up your mind that you can't get to UND. LOOK HOW FAR YOU HAVE COME!!!!! I am believing this for you, YOU CAN DO IT!!! Please make sure and post your results for 18 tomorrow. You are so in my prayers. Bless your heart.