Finally! Got my 2 log drop

[ladywhy]

It's taken 15 weeks..but it has happened. Got my 2 log drop. I'm pretty sure that the ins. co. will continue to pay for the 48 wks. Yea!...i guess... I'm getting some serious aches and pains...and all i wanna do is rest and sleep. I've been going in late to work on a regular basis.  I am wondering if that now that I got the log drop...maybe of lowering the dosage of riba?  Weight based..i should be taking 1000 mg., but aggressively went up to 1400 mg. Any advice..would be appreciated. I just want to kill these critters...and I am glad that the vl has gone down..I just wish i was feelin' better. Anyone else experiencing severe lower back pain? i never had a problem with my back before..so I'm assuming it's tx related.

[Proactive]

CONGRATS!!!!! on your 2 log drop ladywhy.....Just my opinion, I think you should continue on at the higher dose riba at least until you reach undectable...I also was a late bloomer and am doing 400 mg riba above weight-based dosage..My decision has been to continue the higher dose for the full 72 weeks of my treatment as long as body and mind hold up (g)...some weeks I get the aches and pains (hips, thighs, and oddly my shins-never upperbody, strange) I believe it is from the peg, although I have to admit to achey (achy) hips prior to treatment......
again congrats, I think your insurance co will be satisfied....;^)

[katerika]

Good for you. I just got a call bloodwork at 8 weeks I made the 2 log drop. It does feel like a milestone. How is your Hrmrglobin?
Teri

[ladywhy]

Thanks for the congrats. My hmgb is holding at 11.9...so no need for rescue at this point. I'm startin' to feel like a wuss. I can't imagine holding down a job AND going home and taking care of kids and running a household. Me. I just gotta take care of  my 17 y.o. dog and cat...and that is an effort. He doesn't need/want a whole lot of exercise.  I just don't know how so many are able to do so much. If I could afford it I would try the provigil..but it's 300.oo a month...yikes! I'm gonna see my hep dr. tomorrow. A 5 hour trip on public transport...jus' the idea makes me weary. He has been giving me a b shot..but it's a monthly shot...didn't seem to do anything for me last month...I betterstop complaining...i should be happy about the 2 logs. Gotta find my gratitude!
Yvonne

[ladybug52]

Congrats! You didn't post the exact numbers, shame on you! I really want to know where the virus is in the number count these days. I'm so glad you can move forward with your tx/life!
I was going to post my profile and add a picture but the silhouette looked so much like me I decided against it, it kinda removes my anonymity;)
HUGS!
Bug

[ladywhy]

I left my labs at work. I will try to make contact tomorrow. Didja do the profile  thingy. I am beyond curious...possible tx paranoia ..i don't know. I see the wink, so I'm guessing I'm way off base? Anyway..i just barely made the log drop..it was something like 28984 whereas the exact 2 log drop needed to be 29000.  Incredibly close. Of course I was hoping for UND with all the extra riba...but hey...this will do. and it is going down, down,down. Thank you Jesus! How u doing, sweetie? Hope you're taking some time for yourself..kickin' it back? Yea right ;) I hope so., or else I'm gonna have a word with Michael..make him put his foot down and if necessary tie you down. I gotta get some zzzzzzzz..tomorrow I have to go to Philli...:(
good night.
Y

[dlr2007]

That's awesome!! I don't know a lot about the #''s on tx, but I know that great! And hey, just the fact that you're able to work on tx is pretty good- never mind being late!
Best wishes and prayers,
-Dee

[ladywhy]

Proactive: I'm gonna discuss w/ dr. tomorrow...but I think you're advice is right on. I looked at your profile and it seems we are at the same liver stage and pretty much started at the same vl. The only thing obviously different is that your a guy.

Katerika: Congratulations to you...8 weeks and having a 2 log drop is GREAT! Sounds like your responding at the right pace. All the best>

dlr2007: Thanks for your prayes and good wishes! That's what I need the most. Good night, Dee

[tulips27]

congratulations how wonderful is that. i can only imagine!!
enjoy the news!!

[nygirl7]

PS I did the 'extra riba route' too - until week 46 when Dr. Jacobson made me go down to the proper amount (for me 800).  It REALLY gave me SEVERE anemia FAST (I dropped six full points in just over a week) and then even with Epogen I stayed only at about 10.5 until week 72.

So make SURE you are very very good about getting those CBCs at LEAST every other week - every week if possible.  It happened to me in only ten days - between my two pcrs and I thought I was going to die, quite literally.

I would NOT drop anything just yet - you still have a long way to go to UND and you MUST be by week 24.  You are responding but  very slowly and you need every bit of help you can get right now.

[nygirl7]

Technically because you haven't yet hit UND at week 15 - (but you didn't post your numbers so I don't know any particulars) you might want to start thinking of extending to 72 weeks.  It does all depend on the fact that you HAVE to be UND by week 24 (I'm sure you will) but because you are late hitting UND and even 2log well the latest studies have shown that it will (could) decrease your chances of relapsing from a half down to a third. That is a HUGE difference.

I was not UND at week 12 but I was by week 24 and so this is what I did.  I went to the doctor that was the lead investigator on one of the studies that I used to come up with this plan and what he said was if I wanted to know I did everything I could possibly do - then it was a good idea.

50/50 chance of failure to me was too high - I only wanted to do this ONCE.

I have my 6 month PCR in two weeks to see if I am SVR but so far at month 4 I was UND still.

Good luck with your decisions.  Watch your hemo closely and if you can possibly get another PCR done before week 24 go for it.  

[jmjm530]

Unfortunatly, NYGirl is correct. Your chances of SVR are not very good with 48 weeks of treatment. With 72-weeks they will be significantly better but still in the 50-50 range if I remember correctly. Anyone have the numbers?

All this, of course, depends on your being non-detectible by week 24. If not, then the recommendation of most doctors is to stop treatment.

You seem very positive and motivated to get rid of the virus now, so I wish you nothing but good luck moving forward into what most probably should be extended treatment territory.

That said, I'd be remiss if I didn't state my opinion -- for others in your situation, perhaps less motivated -- that the option always exists for those slow responders without significant liver damage to stop treatment, cut their losses, and fight again another day. Already, we're seeing some very good preliminary results from the Telaprevir trial that suggest what appears to be a 80% SVR rate with 24-weeks of treatment.

All the best,

-- Jim

[mustangshelly]

thats great news and I'm very excited for you..I also didn't have a 2 log drop..slow responder then came up undnect at week 17..decided to do the extended 72 weeks and only have 1 left after tomarrow....not an easy ride but this tx effects all in different ways...I wish you the best hugs :)shelly

[nygirl7]

The 72 weeker club is very small but very cool.....we are chicks (so far) with ATTITUDE ;)  Right Shelly?

Darn we still need a name hee hee.

[mustangshelly]

Okay I went to post then my computer acted up...threw it around a little now back online;) I agree ny we should see how many have gone through the extended tx and we of course are the mighty warriors and very kewl chicks;) ..It is all attitude and like yourself trying to beat the odds and never go through this again!!! 1 left after tomarrow...of 72/73??? feeling better and very excited for the end!!!!  I think we should call ourselfs " THE EXTENDERS"..like the terminators?? we should have special suits made up with super antivirus protection ;) lmao...I'll try to start a stat post...hugs:)shelly

[jools57]

you all are just amazing!!!...i'm a geno 3 on week 8 slow responder, and when i read your posts i am just so encouraged at your strength, and senses of humor as you go thru or have done tx. You all Rock!LOL

Ladywhy...congrats on the drop, and hang in there!!!
Blessings, Julie

[orphanedhawk]

  Congrats. 15 weeks may seem slow but I've heard of others taking longer and still clearing. Although I had an early viral response, there were still a few buggers hanging on. Then my doc raised my riba. He believes the higher riba helps to get the strays.    I can't even imagine working while I was on tx. I was lucky to eat!     Good luck Ms.Y.

[geterdone]

Congratulations Ladywhy on your 2 log drop, yea for you. I took you from going from 1000mg to 1400mg to accomplish the log drop, wow, guttzy lady for sure. It sounds like the lower back pain will stay with you until you decide to lower the riba but being an aggressive lady such as you are why not wait to you get to UND before lowering the riba, if tolerable. I recently hit a personal quandary back at week 18 on similar issues and took all into consideration and decide to reduce the riba at week 20 to 1000mg’s through the month of August mainly because of the heat. A 400mg hike above is a lot harder on the body than 1000mg but if that’s the kicker you needed to achieve the log drop your getting er done!

jasper

[NYCMark]

Not all chicks. I'm on week 60 of 72 right now. But I AM cool!

Mark

[NYCMark]

[zazza]

Congratulations, Ladywhy! You are responding, but you need also think carefully about what Jim says in his post above. Preferably you don't want too high a viral load at week 12. MD Berg mentions a number of 30'000 IU/ml. You must read all you can and find out your odds, discuss with your doctor, and consider how motivated you are. Only you can make the decision that is right for you. I wish you all the best, Zazza.

[zazza]

Have you read the full study text of "Extended Treatment Duration for Hepatitis C Virus Type 1..."?

[ladywhy]

I was mistaken. I had PCR done at 18th week and dropped 2 logs. I never made it to dr.s office today..going in next Thursday instead. I guess I'll just see what happens at the 24th week. Zazza, i haven't read the full study but this blurb seemed key.
"Based on these findings, the authors conclude, "Extended treatment duration generally is not recommended in HCV type 1 infection and should be reserved only for patients with slow virologic response defined as HCV-RNA positive at week 12 but negative at week 24."
24 wk will be the deciding factor. Jim: I appreciate your feedback...but 2009 seems a long way away..if then. At the same time, I don't want to be doing this to my body/brain in vain. 18 weeks to still have a high vl doesn't look promising. So, like all of us, it's a wait and see...patience is  a virtue...kinda thing. I'm really grateful to you all for your support and advice...you all really are lifesavers. Good night and God Bless You.

[ladywhy]

Thank you...from your mouth, to God's ears. His will be done!

[Forseegood]

just wish you the best of luck with this...

[zazza]

Sounds reasonable to go to week 24 and see if you are UND then. I probably would have done that myself. I don't remember, have you had a biopsy done? If you want that full study, just send me a message to my screenname underscorejonesathotmaildotcom. There is nothing like reading it yourself. Take care! Zazza

[zazza]

Numbers from the Berg study:
> or = 50 IU/ml at week 12:
48 weeks: SVR 17%, 72 weeks: SVR 29%

>or = 50 IU/ml at week 12 but < 50 IU/ml at week 24:
relapse rate 48 weeks 64%, relapse rate 72 weeks 40%

It also says:
"Mainly patients with low-level viremia at week 12 achieved a benefit from extended treatment duration."
"In conclusion, the present study supports the concept that extension of treatment duration can reduce relapse rates only for a limited proportion of type 1-infected patients (about 20%, ie, slow virologic responder). Individual tailoring of treatment duration may be one option in the future to reduce relapse rates in HCV type 1-infected patients."

[zazza]

> or = 50 IU/ml but < 6000 IU/ml at week 12 and UND at week 24:
relapse rate 48 weeks 57%, relapse rate 72 weeks 32%

[nygirl7]

or = 50 IU/ml at week 12 but < 50 IU/ml at week 24:
relapse rate 48 weeks 64%, relapse rate 72 weeks 40%


Those are HUGE number difference and what helped me decide that it was worth extending big time.  Since nothing is really a 'set' number because all our bodies are different...I didn't feel I had any choice but to extend.  

I'm very glad I did.  Logically you'd think the longer you took the interferon to kill the creeps the less chance there is of any of them left to hide out and then come back to multiply again.

I fit perfectly into this subgroup though (4 week VL was 411 12 week was 419 so by older tests I would have appeared UND even though I wasn't).  I think that anyone who is still positive at week 12 with grade 2 or higher really needs to consider strongly doing the extension.

[meki]

I'm sitting here with crossed fingers for you lady!!!

Super hugs - and chill --- baby chill... Life is splendid.

Meki

[ladywhy]

Thanks Meki....
It is a gift.
hugs back atcha!
Yvonne

[wyntre9]

Congrats on your 2 log drop.

I'm a slow responder, too.

Think you're excited, now?  Just wait 'til you get UND in the next few weeks.  :)

(I got UND at week 16 - 18)

Wyntre

[ladywhy]

I am hoping and praying to hear that elusive word.."UND"..Wow that would be awesome!
Thanks Wyn.