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Tell Us Your Stats Part II

I think it took at least two threads last time for everyone who wanted to get a chance to post.

-- Jim
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Avatar universal
Thanks for coming out of Lurksville to share your story :)

Interesting about your hemoglobin (hgb) dropping when you started taking it with a  higher-fat meal. Your speculation that it has to do with higher riba absorption is shared by the Sweedish researchers who correlated serum ribavirin levels with the degree of anemia. In other words, the more anemic, the higher the serum riba levels. And other studies suggest higher serum riba levels correlate with a better chance of success in treatment. Unfortunately, precise serum riba testing is not readily available in this country.

I also try and take my riba with higher fat meals but I needed the rescue drug Procrit to compensate. In your case, you seem to be doing OK without it as we all adjust differently to decreased hgb levels. Being that you're almost half my age probably has something to do with it as well :) I'm sure you know drugs like Procrit are out there to discuss with your medical team if you need them, but with only ten weeks left hopefully you won't.

I raise a glass of grapjuice to your upcoming SVR!

Be well.

-- Jim
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Avatar universal
Hi, been a lurker here since week 3 or so. Been good to hear the theories and advice going around. Even the politics!

Male 32, 5'10" 158 lbs at start of tx, about 147 now.
Geno 1A, infected 13 years. Stage 1, grade 0, initial VL 450,000 IU, undetectable at wk12, only tested at wk 12, but liver
function tests have been in normal range since.
Pegasys 180, Copegus 1000. Increased copegus to 1200 at about
week 15, I requested it after pointing out studies and they said OK.
Hemoglobin started at about 12-13, now a little less than 9.
On week 38 of 48.

Felt bad about 6 months ago when the anemia set in, but
seem to have adjusted to it now. Still go for walks, missed a few days of work but not many. Only those mornings when dragging myself out of bed felt like a bit too much!
Supplements etc - I take the riba with a high fat meal, try to
go for 20-30g fat (hgb has dropped since I started that practice, I take that to mean absorption has increased). Also take apolactoferrin, multi-vitamin no iron, selenium, zinc, alpha-lipoic acid, blueberries. Have stayed with milk thistle throughout, have been taking 10 years and attribute that to the low liver damage, even after years of heavy drinking. Not sure about the studies on that, might have been best to stop the thistle, but figured I've gone this far, may as well stick with it. Quit smoking and drinking a month and a half before starting tx.

Sides - rash on chest, dry skin, hair thinning, blurred vision for a while, anemia, depression, extremely irritable, weak, tired. Accepted advice to start an AD (citalopram) after about eight months of feeling a bit crazy and it's good to feel normal again.

This site has been my connection, albeit anonymously on my part, to a lot of people who have provided humor, support and advice during some of the unpleasant times on this treatment. Thanks, and I wish you all the best.
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Avatar universal
M-almost 50 , infec. since 70's., VL- 750,000, Geno. 1a , Stage 1, Gr. 2 ,tx naive, plan to treat this year. note: encouraged by you other guys in my age group that you are reponders. hope i will be too. good luck and God bless you all.
antman
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Avatar universal
I forgot, very important! Full Spinal Manipilation, 2-3 times per week. Thanks
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Avatar universal
Hi Everyone, hope you are all well today

Male     55
Geno     4b/c
Stage     2
Pegasys 180, Ribavirin 1200, procrt 40K every 1-1/2 weeks
Week     35/48
HCV      27 years

pre-tx Vl         1.1 million
VL(week 4,12,24)  <10

Had my worst sx between week 8 and 22; headaches that words cannot describe. I am amazed that I continued with tx during this period. So to my surprise tx has actually became more doable.

Now, I do have lots of brain fog and fatigue and I seem to be getting more body aches. I am losing hair and have some new age lines on my face. But by next October I hope to be on a backpack to Thunder River in the Grand Canyon.

A few simple tastes;

Good music:      Lorenna McKennit "Book of Secrets"
Good book:       Pema Chadron's "When things Fall Apart"
Good food:       is always organic
Good friend:     is beyond measure
Just war:        Has never happened
Good people:     All over this board, truly









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Avatar universal
hey everyone. i haven't posted in a while. i have been very tired and haven't been feeling up to par at all. but here is my history:
43 year old female
height 5'3"
starting weight 158
have had hepc for 15 years
geno 1b
starting vl 500,000
bx results grade 2/stage 2
0.04 pegintron/1000mg riba
svr at 20 weeks
currently on week 29 of 48 week treatment plan

side effects: severe depression, memory loss, rashes, mouth sores, severe lower back pain,inflammed stomach, nightmares, anxiety, hair loss, blurred vision, headaches, 38 lb weight loss so far, total loss of sexual libido, zombie like, insomnia.

into week 12 of tx i had severe bleeding and had to have a hysterectomy.
fell down on day of bx and had 14 stitches in back of head.
lost my aunt, my cousin and sister in law in a matter of 5 months

tx has put a big damper on my marriage but i have a very understanding husband who never complains and loves me regardless. i do not have a compassionate mother or sisters so i have had to do this alone with my hubby.

good things: i cleared at week 20, had large wedding for my only daughter, became a grandmother for the second time, found out how precious life is, made many many friends who understand me, quit all my bad harmful habits, received BA in human services and last but not least, i now fit into my jeans from high school and lo and behold theyre in style again! have a good day and take care

elizabeth
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Avatar universal
28 yo female
height 5'3"
starting weight: too much!
have had hepc since blood transfusion at birth- as best we can tell, I have no other risk factors.
geno 2
vl 5mil
just had 4 week pcr, am waiting patiently for next two weeks to go by for results.  
did not bx.  
I will do 24 weeks at most and if not clear, then wait for new tx.
Trying to clear this virus so I can continue to build my family and have more babies!  My dd is about to turn 2 and unfortunately, she is in the 5% who get hep c by vertical transmission.  I am praying she clears on her own by the age of 3, she has about a 30% chance of that happening.  
My take on it is  that if she can be in teh 5% who get it, she can most definitely be in the 30% who clear it!
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Avatar universal
In order to leave more room for people to list their stats -- these herbal discussions tend to run long :) -- I'll answer you in the thread titled "wanted to check in" about 11 threads down.

-- Jim
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96938 tn?1189799858
Don't want to freak you out with this question but have you had those Candyland-loving kids tested?  One more carryover suggestion, if you have the game Hungry Hippo you may want to put it away while on tx.  It's a nerve-wracking game.
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Avatar universal
Male
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Avatar universal
Hi Elizebeth, I am glad you posted...I think about you and wondered how you were doing...You were such a brave soul to have the hysterectomy and sounds like you have had some real hardships since then, so sorry to hear that...But, it also sounds like you have had some positive things too!  You're jeans from high school fit!  Holy macaroni!  I wish I had saved mine now...

Best wishes to you and keep slaying that dragon

Beth


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Avatar universal
Hey Y
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96938 tn?1189799858
Male, 54
Geno 3A. Self-inflicted in 70's
VL was 600,000  1/2
Completed 24 wks 12/05. Clear at 12 and 24.
Real PCR - May'ish
During TX had low hgb but not low enough for epo
Rescued for ANC's with neupogen, neulasta
SX's alomst gone - still have headaches
Interested in knowing state of liver 6 mos - year from now
Missed little work on TX. Tried to stay busy.
Favorite quote 'Try Ambien, it works'
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Avatar universal
-26 year old male
-got from blood transfusion at birth in 1979
-type 1b
- baseline VL of 178,000
-weigh 171
-mild stage 2, grade 3
-180 Peg, 1200 riba per day, 1400 riba every other day
- clear since 12
- clear on Heptimax (less than 5 copies)
-pre-tx ALT/ALT high
-ALT/AST normal as of week 2
-no real side effects
- I take shot 33 tonight
- will do 60 total weeks

--Robert
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Avatar universal
This answer to your question is not yet and believe me I have already freaked myself out about it.  They will have to be tested at some point.  And thanks for the Hungry Hippo info very important. (lol)
Lori


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Avatar universal
No No -- it's Mouse Trap you will want to put up during tx.

Actually, FL, I bought both of those Christmas for the grandkids and wanted them to keep them at my house but they took them home.

oh well, it is quieter
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96938 tn?1189799858
Always thought Hungry Hippo was a great gift for nice kids who have annoying parents.
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Avatar universal
male-56
5'9' 165
tonight 20/48
peg 180 riba 800
infected late sixties drugs/tatoo
geno 1b
grade 2 stage 2-3
vl at tx 3 million- 4weeks 377000-12weeks 11000-16 weeks 4400
platelets hanging between 37-26, alts in range since wk 4
taking procruit and neupogen
sides: occasional headaches/low grade fevers/night sweats/achy bones and muscles/some rasch/hair loss/always metal type taste in mouth
no wieght loss and so far good appetite
Reside in sunny Ventura Ca. (always)
hobbies: surfing, golf, traveling, fishing but for now watching TV
Helping me through tx in order of importance, wife, dog, and medical staff.
good luck to all!
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Avatar universal
My son is having a birthday party next week.  You know now if he gets hungry hippos as a gift, I will be crushed.(lol)
Lori

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Avatar universal
Male, 53, HCV+ probably since 70's

Dx 3/05: geno 1a

pre Tx VL: 1,140,000

Bx: stage 2 grade 2

Meds: Pegasys 180/Copegus 1200 started 7/29/05 (week 27 starts tonight!)

Week 12: "undetectable" (>615)

Week 24: "undetectable" (>5)

Sides: Aches/nausea was worst in first few months. Depression, irritability seems to have increased in last month or two. Last 6-7 weeks I have had cracked skin on corners of mouth and one eye as well as flaking dry skin patches on sides on nose. Have gained 8 lbs since week #2. Have slacked on exercise but have yet to miss work. Consider myself lucky with the extent of my sides and glad to see more & more geno 1 people with SVR!  -Lee
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Avatar universal
Hi all,

I thought I would jump in here also.

female-40 infected 24 years
stage 2
vl-75,000
starting tx in 3 weeks.
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Avatar universal
41 yr F ...geno 1a viral load 15,000,000
infected almost 21years stage2 blood trans. with birth of twins
peg/riba 1200 7/48
i have to keep an eye out for white cells-neutrophilswent down
to 0.8 now at1.0 some anxiety take ativan for that
Have 5 kids Thank God all are negative!
teach 20 2yrolds in two different Churches 24 hours a week
Raise my own backyard chickens for fresh eggs.... have 2 ducks
and 3 dogs
Favorite Bible vrs John15:12 My command is this:Love each other as I have loved you.
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Avatar universal
54 year old Female. genotype: 1B, stage 2/grade 2. Diagnosed in 1989. Probably self inflicted in the 70's. This is my first shot at treatment. I hope it's my last. Treating with Pegasys/Riba 1200 a day. Started treatment very overweight but getting svelter by the day. Not due to side effects as much as effort although I do find that drinking a gallon of water a day had dramatically reduced my trips to dunkin donuts, soda machines, juice machines etc. I think foregoing all those empty calories may be what is doing it.

Currently on shot 28 of 48. Starting viral load of 2,500,000. 12 week viral load: 3,500. 24 week viral load: 20. My insurance company was making noises about not approving the last 20 weeks of treatment because I wasn't undetectible at 24 weeks but I guess even they were embarrassed and backed down. I too have been switched to generic RIBA but it has lowered my co-pay so what the heck. I take generics whenever they are available.

My frustration these days is that while I am indeed responding I'm not what anyone would call a fast or early responder and everything I have read suggests that I increase dosages and/or treatment time but my insurance company (and by extension my doc) is having none of it. I'm thinking of confessing to my doc that for 18 days prior to my 24 week PCR I upped my RIBA to 1400 with no huge problems. I wondering about asking him to write me a generic scrip for RIBA that I can fill outside of my insurance to up my dose as long as I can stand it.

Any thoughts or suggestions welcome!
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Avatar universal
Cleared for take off and can start tx anytime after next Tuesday; probably start Friday.

STATS:
55 YO M, 5'-10", 185lb, infected for about 35 yrs
Genotype: 2a
VL: 600,000's
Stage:  Initially told high stage 3, but doc said I have cirrhosis     last Friday - so I'm getting a second opinion

PERSONAL:
Location: Colorado
Retired Eng (Thank Gawd)
Hobbies: Too many

Glad I found this group!

Good luck to everyone!
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