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Avatar universal

VL up, Scared

Worried today, some of you may remember my VL at week 4 had actually gone up. I saw GI yesterday and we are going to continue till week 24 ( i am week 8-9 now)
This is my third time on TX,  I have relapsed. I am kind of freaking out,  I am very determined and stubborn.  But usually always hopeful.  I feel despair today.
I guess my question is has anyone else had a VL increase, then recovered from it and became UND?
GI did increase infergen to .3 daily, instead of 3 X a week.
Any info you can share would be great
Deb_C
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131817 tn?1209529311
Not sure where those Mtns are, but if you are ever in the Walnut Creek area we should meet for lunch. It's always fun to meet people we talk with everyday.  

I was on Neulasta for the WBC and the shot would put me in agony with migraines and joint pain for about 10 days. I hated it and begged my dr. to let my count go lower before that shot. It was the worst thing on tx.
Helpful - 0
Avatar universal
Thanks so much!  I am not loving the resue drugs much either!

Yes I am in CA, I know Walnut Creek, have been there a few times, it is a lovely peacefull area.  I am in the  Tehachapi mountains,  snowed in today, though it is melting.

Thanks again for your kind words!
Debby
Helpful - 0
131817 tn?1209529311
Sounds like you are on the right amt. of riba. I know some who haven't absorbed the Riba and their Hgb never went down much. They had a difficult time clearing.  

Thanks for the welcome home, I am in Alamo, CA. Near Walnut Creek.  Small little town near the big city of San Francisco. Are you in CA?  

Hope you have an UND on your 8 week PCR!  I didn't clear until after 12, so I understand the concern.  Also was on rescue drugs for both WBC and RBC.  I hated them!  

Take it easy!
Linda

Helpful - 0
Avatar universal
They started me at 1000,  and will most likely keep there, weight based wise I guess I should be at 800, BUT the drug company say below 800 is not effective.

I have had major problems with WBCs and RBCs,  I am off the procrit for now, but doing two shots of neuprogen a week now.  I went to alarm again wbcs with a weekly neuprogen shot.  I have weekly CBCS,

hemo globin is 11.7.

Was glad to hear your home and feeling better. Are you in  Solvang  Santa Maria area?

You as well Linda and thanks!

Deb
Helpful - 0
131817 tn?1209529311
I don't see how the riba is too much. How has your hgb been?  Did you have a big drop in it?  Most here do, and if not perhaps you may want to go to 1200 at the beginning at least so you can clear at week 12.  Knock those buggers out!  Sounds like your dr. is on top of it increasing the interfergon.  I didn't clear at week 12 and relapsed, so it is important to clear by then. Especially since you have 2 tx under your belt you need to be aggressive.  

wishing you the best.
Linda
Helpful - 0
Avatar universal
Sorry for the double posts, pc froze up i think,  
Doin I asked about Alinia,  Nurse said: she thinks you have to be in a study to get it, I am not.  
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Avatar universal
Thank you! You so rock!  
I have had a major headache and today I have to motivate to town, and it is snowing! NOOO! I do not like snow it is the devil!
I have some things to tell you all.
Hopefully later I can get on.
:)
Debby
Helpful - 0
Avatar universal
Thank you! You so rock!  
I have had a major headache and today I have to motivate to town, and it is snowing! NOOO! I do not like snow it is the devil!
I have some things to tell you all.
Hopefully later I can get on.
:)
Debby
Helpful - 0
179856 tn?1333547362
Hey Deb...............you liver enzymes are lookin really good..... :)

Just wantead to start off the Monday with a positive note for you!!!!!!!!!

AST                                      27
Alt                                        23


:)

Debby
Helpful - 0
Avatar universal
Maybe, I need to do some research on it, I am not sure what it is exactly.   I have read a bit about it on this forum, but have to look more in detail. I could surely use an edge@ this!
Thanks doin!
Debby
Helpful - 0
Avatar universal
Would you consider asking your doc to start you on Alinia?  St George is trying this in combo with infergen and riba.  It might just give you the edge you need,

best wishes
dointime.  
Helpful - 0
Avatar universal
Thank's again everyone,  Other me on the EC, >:) I can't tell you how glad I am to have found you all!  

I was looking back at my tx on peg last year and noticed I started slow then as well. So feeling more hopeful today.

EC  Deb you and wyn both have insprired me so much since I started popping in here, all of you have! I have a great support system at home, but at the end of the day, if you never been through it, you just don't get it. So I am glad to have you all.

The everyday shots I think are no fun, but finding them easier (so far anyway) than 3 times a week. Infergen leaves your system quickly, so  my body never adjusted. I am not saying this is fun, either!

Riba kicks my butt,  But like you my EC Italia  friend I am so determined to get through this UND.  I was going to nag you but thought i better shush! :>)

I have a lot of faith, I spend time in prayer, so all prayers are welcome and returned,

Wyn I called nurse and asked for my original BL  VL, and so hoping soon.

Hugs to you all!

WC Italian Debby!
Helpful - 0
250084 tn?1303307435
.....GI did increase infergen to .3 daily, instead of 3 X a week.......

I just can't imagine that :{
Can't help you with any answers, just sending 'keep the faith, stay strong' thoughts/prayers to you. Sorry it's such a frustrating/depressing time for you. Wyn, Alady, a few give you some hope to hang on to in fighting on to UND.
Hang in there Dear :{

LL
Helpful - 0
179856 tn?1333547362
West coast Italian Deborah

Debby

I was thinking about you last night.  I wanted to tell you - I had a totally different situation than you but I WAS NOT UND until somewhere between weeks 12 and 24.  It was hard and it really tested my faith because I wanted it SO BAD!

Just continue to believe and keep on fighting.  I had to do 72 weeks because of the late UND but it was worth it.  It was hard but again it was worth it.  You do whatever you have to do.  You're already on so much riba for your weight I can't believe that those stupid things could be replicating in there!  God I hate them!

Anyway I just wanted you to know I was thinking about you and said a prayer (I am a big believer in having HELP!) and just wanted to let you know that.  Having support, in here, helped me more than anything else during treatment - without this forum to keep me going...I would NOT have made it.

but you will.

East Coast Italian Deborah the other crazy one!  Ex Deb C. hahaha
Helpful - 0
Avatar universal
Deb,

I was on 15 daily of the Infergen.  It's hard, but it is doable.  I am 5'7 though, though my starting treatment weight was at that time around 142 lbs.  Of course, I lost weight while treating.   Susan
Helpful - 0
173975 tn?1216257775
VL increase from 610,000 to 900,000 is far less than 1 log so you still have time, maybe with med changes, dose changes to get vl under control,

1 log increase would be 6,100,000.

So you can see the VL increase doesn't much change your log.

VL increased by 290,0000.  Let's hope it keeps going down, now and hang in there.

wyn,
Helpful - 0
173975 tn?1216257775
VL increase from 610,000 to 900,000 is far less than 1 log so you still have time, maybe with med changes, dose changes to get vl under control,

1 log increase would be 6,100,000.

So you can see the VL increase doesn't much change your log.

VL increased by 290,0000.  Let's hope it keeps going down, now and hang in there.

wyn,
Helpful - 0
Avatar universal
Just keepfaith and trust in him he is the best physician, just keep praying.. I will pray for ya.. U will be fine...
Helpful - 0
173975 tn?1216257775
Congrats on your SVR and thanks for sharing.

What was your genotype and how many weeks did you treat?

i remember you posting when i first got on forum, over a year ago, but brain fog is very bad and memory is even worse.

wyntre
Helpful - 0
Avatar universal
I was undetected at week 12 testing.  I had detectable virus around week 20.  It went away and I am now SVR.  There is hope.
Helpful - 0
173975 tn?1216257775
I'm not the most medically astute person on forum, but after 15 months on tx, a few things have managed to seep in.

If the nurse said the "increase amount meant at log 10"  and your chart said;
HCV Quantasure Plus non graph       610,840   IU/ml
HCV  Log 10                                        5.786  Log 10 IU/ml

maybe there is some confusion abut the term 'log 10' and what the nurse was trying to say.

Keep getting copies of your bloodwork, read them over, compare one week to the next, log on forum, post results, ask questions and eventually this stuff will begin to make some sense.

i guarantee it.

if I can interpret any of this stuff that means there is DEFINITELY hope for everyone coz I am dense!  And although it can be very confusing, try not to let it overwhelm you.  the more you understand it the better off you will be, especially psychologically!

(the terminology thing is frustrating....i know.)

If you find the previous VL,  please post it.

wyn


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Avatar universal
Thanks so much wyn and you know I truly feel with out hope, we have nothing.
You do inspire me, I told ya, you did! From what Nurse told me, the increase amount meant at log 10, was that it went up to about 900000?  
I have big tears in my eyes, from all of you guys kindness.
thanks so much!
Hugs Deb
Susan thank you for your prayers! Back atcha!
Helpful - 0
Avatar universal
Thanks so much wyn and you know I truly feel with out hope, we have nothing.
You do inspire me, I told ya, you did! From what Nurse told me, the increase amount meant at log 10, was that it went up to about 900000?  
I have big tears in my eyes, from you guys kindness.
thanks so much!
Hugs Deb
Susan thank you for your prayers! Back atcha!
Helpful - 0
173975 tn?1216257775
Even if your VL went up from 610,000 to 650,000, that is not considered a huge increase.

A 1 log increase would be 6,100,000.  A 1 log decrease would be 61,000.

I had a couple of spikes before UND, one from 37,000 to around 60,000 and another similar increase.  i reached UND at week 17.

i'm just trying to give you some hope, Deb.  Do another PCR.  I had them weekly until I reached UND.

wyn
Helpful - 0
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