TREATMENT UPDATES

[frijole]

Happy 2012.  I thought I should update the spreadsheets for our treatment statisics.  For those of you who don't know, I have been keeping a spreadsheet since the summer when the protease inhibitors hit the market.  You can view them by clicking on my profile and viewing the pictures.  For the most part this spreadsheet is people doing triple therapy, therefore all genotype 1s.  However if you are in a trial or a different genotype I post that information too.

I would like your pretreatment VL, whether you treated before, and what your status is - relapser, nonresponder, break through, liver biopsy results, start date

Please list all your VL tests and results (not just 2 log drop) and if you are anemic, how low the hemoglobin got and how it is being treated.  What are your side effects, if severe.

If you are already on the spreadsheet, please check it and let me know if any corrections need to be made besides updating.  You wouldn't believe how easy it is to get on the wrong line!

I am frijole
My last Vl was week 12 and it was UND by QuantaSure sensitive to 2.

[pooh55811]

Keeping the stools firm is the key, not hard as a rock, but definitely quite firm. The minute they get soft or loose, they burn like fire and they irritate both the internal and the external rectal and anal areas.

I used loperimide at the first sign of soft stools. As long as I kept them firm, I had no problem.

Before I figured this out, I did get a couple of episodes (day long)of craping glass shards. I used loperimide tabs at that time as well as Prep. H cream and xylocaine/hydrocortizone cream to the external areas. At night I put in Prep. H supps and that seemed to help heal the inner irritation.

I had two glass shard episodes befor I figured out how to prevent it. I was a bit conservative the first time around and waited too long to use loperimide and also did not use enough (for fear of getting constipated). Because of that, it took longer to clear up. The second time I was more liberal and used the correct amount of loperimide at the outset. That episode was a lot less intense and cleared up faster. The third time it started (with lose stools), I nipped it in the bud  at the first inkling of loose stools and it never got bad, went away almost immediately.

Some people use commercial fiber but I did not as I read it binds with the (Hep C) pills and that is not good.  Maybe there is a type of fiber that can be used safely, but the loperimide worked so why try something else. I also did not need the loperimide every day, just at the sign of soft or loose stools.

I got hemorrhoids almost immediately after starting Inc. so that is why I was using Prep. H and also why I was at first afraid to get the stools very hard. Trial and error corrected my misinformation about how soft/hard the stools need to be to not have this side effect, lol.

[Revalation]

what did yoou do?

[Tekelcat]

Don't know if you want this data but here it is:

Genotype 1a
CC allele
Tx naive
On a Gilead randomized blind 2 arm trial ... Arm 1 SOC, GS5885, GS9451; Arm 2 SOC, GS5885, placebo
Week 6 of Tx
Baseline VL 10.7 million
Week 1 VL 2780
Week 2 VL 360
Week 4 VL 36
Week 4 HGB, 9.5 Week 5, 10.5
Extreme fatigue, some cognitive disorder, severe bone pain in pelvis and sternum
No rescue drugs, but taking Lexapro 20 mg a day to prevent mod disorders and Hydrocodone for bone pain

[belle19]

also i forgot to say i'm only on SOC now.  thanks.  belle

[belle19]

i'm still UND at week 24.  riba reduced 12/14/11.  hypothyroidism confirmed 12/16/11.  started synthroid.  hgb at 9.5.  thanks for doing this.  it's really nice of you.  best wishes.  belle

[blondie717]

bms791325 , riba , interferon. Double blind on viral load till wk 12, 2 B trial 36 Guinea pigs.
stage 0,grade 2 , vl was approx 200k? starting HGC was at 16.9 WBC was also high everything else norm
TX Naive started tx approx Nov  2010 did 48 wks  finished in Oct 2011.  HGB stayed around 11.8  till the last 2 wks dropping down to like 10.2
wk 12 was UND. remained UND throughout , was UND 1 mo PT. I am late on my 90 day PT.
My sx were 1 day of sore mouth (1x ora-gel took that away for good)
aprox 7 days of inner bone pain not in joint but deep in the larger bones (hips, femour and arm bones) (treated w/alieve and that went away for good).
I guess that counts as 0 side-effects.;-)
Oh and my alt's and ast's @ start were aprox in the 60's or 80's to start. they went down right away and came up a few points on the high side. 1 mo post was in the norm's

[ready1600]

Treatment naive, began Oct 30, 2011 with triple inc, peg, RIBA,

[ready1600]

More info, CT, no biopsy, geno 1a,

[ready1600]

I just did my 12 injection last night, last week this week of incivek, no rescue meds, und weeks 4 and 8, platelets 72k, hgb13, stage 4, no symptoms, started at vl 1.5 mil, rash, burning diarrhea, mild headache, fatigue, dense mental fog. Lots of rest, low stress.

[Hatterasman]

Correct my Start VL to 1.6M from 600,000
Week 4 - det, <7
Week 8 - det, VL 63 :(

Week 10 Blood Work today hgb normal, red normal, white 2.2, platelets around 90
No sides other than minor fatigue and some minor itching.

[pjhep80]

also, worst sides for me right now seem to be hair loss...clogging the drain every morning... and shortness of breath/tiredness/no motivation just lay around all weekend im going insane i am working full time mon-fri only missed the first day i started tx ... no rescue drugs no dose reductions and all my levels are ok, a little low but ok...

[pjhep80]

aha !!!!!!! lol

[pooh55811]

That severe rectal pain on the spreadsheet belongs to me, lol. It just ended up on your line.

If I had known at the beginning of treatment what I know now, I never would have had any of that severe rectal pain. But, I (like most others) had to figure out how to prevent it by trial and error.

[pjhep80]

hey good job here, FYI i was undetectable at week 12 as well... and get rid of that 'severe rectal pain' comment ......... LOL... the anal itching burning was bad but gone now thank god FYI found some prep H anti itch cream worked GREAT

[Dee1956]

Hey there!  Thank you again for doing this, it is very helpful and an awful lot for you to do while you yourself are on tx.  When you update the spreadsheets I would like to say I am a relapser, Geno 1A
I forgot those when answering you earlier.  I just did injection 20 and will go for blood work this week.
Dee

[frustrateddee]

What are cotton wool spots? My eyes are jacked up...hard to focus at first...but thyroid is way hypo as well? Wasn't sure about the eye thing  :)

[toby47]

To continue.
Hgb 10.3
wbc 2.1
ast -12 alt-18
Und
    4,8,12 wks
Used neupogen and procrit
reduced riba 200 mg last 10 wks to stay above hgb 10 and stop using procrit.

[toby47]

Adding to what you already have.
Tx finished 24 vweeks.Had last vl done 2 wks ago ,no report yet ,because I had met deductable for last yr and hope not to meet it this yr.
Ending stats for lab
hgb 10.3

[hrsepwrguy]

WK 20 results
HGB 11.7
ANC 1.87
PLATE 154
WBC 2.9
RBC 3.38
HCT 34
AST 13
ALT 14
VL UND below 7.1

[katla]

I wish more people on Victrelis would post stats. I seems only one person was UND at week four and even though I was somewhat leaning towards Victrelis I think I'll probably do Incivek.

I asked my doctor, who's a well known NY Hepatologist ,which I should do and he pretty much said whatever I wanted. NOT helpful.

[sandysf]

bumping this back up just in case

[Dee1956]

Hi this is Dee1956 started Incivek tx on 9/2/2011
VL was 7M
UND at weeks 4, 8, 12,16
Severe itching, no rash. dry mouth, firerhea, anemia  HGB started 14.8 down to 9.7, no rescue drugs
Thank you for doing this

[Dee1956]

Happy 2012 to you as well!  Thank you for keeping track of everyone's stats
It is really nice of you.
Dee1956

[frijole]

thanks everyone.  Keep them coming
frijole