Aa
Aa
A
A
A
Close
Avatar universal

Anyone interested in doing a 'role call'?

I hope you all don't mind, but I thought this might help keep everyone up to date on where we are and also is a good way to meet everyone.  I sometimes have a difficult time remembering everyone's progress. I would love if you'd all join in & maybe do this periodically to keep us up to date!

Female - 57 yrs
Geno: 2b
Started tx:  3 weeks ago
(still have hair) lol
Probably had 30 yrs
Diagnosed: 03
Viral Load at start: 6mil
Liver condition:
early stage cirrhosis
First dx:  ALT 254  AST  174,
now: ALT 10  AST 31
Favorite Movie:  
Ferris Bueller's Day Off  :)

72 Responses
Sort by: Helpful Oldest Newest
Avatar universal
Hi Everyone-

Female- Age 38 - 2 kids 13 and 9 - husband also Hep C+ Fibrospect Score 69
Caught Hep C probably sometime from 1990-1993- IV drugs
Dx in 1993
Stage  0 on bx in 1996
Now Stage 3/Score 60 on FibroSpect II (hoping it's wrong!)
Next bx in August
Viral load- ??
Genotype 1- not sure a or b
Tx in 1996 w/ regular Interferon
Favorite Movies-   Bonnie & Clyde ~ Natural Born Killers ~ Grease ~
Requim of a Dream ~ Easy Rider

That's about it!
-Dee

Helpful - 0
Avatar universal
Please don't forget Sandy (Lvdbygod), she got a positive at 6 month, detected at around 615, and continued tx for a total of 2 1/2 years. Like myself, she was neg at her next PCR and made SVR.
Her doctors kept telling her it was a true viral breakthrough, while my new doc, not the jerk I was seing at that time, said it was probably not.
True viral breakthroughs don't behave like ours did. We would have been detected on the following PCR with a rising viral load.
HR also explained, that were we to test every single day during tx, we would occasionally see a slight uptick on our viral load, followed my a neg.
I think in our case it was wise to tx so much longer, just to cover the "unknown and if's".

So you remember that old thread, it was with mikesimon.
I have the privilege to be half master race, half polish jewish underdog.
My husband is a full blooded jew, first generation Russian, from his moms side, and second generation Romanian....born and raised in Brooklyn, NY.

Ina
Helpful - 0
Avatar universal
well haven't been on comp in few days or so
geno 1a
start vl 6million
dx in 1992 ?
female 40 yrs old
started tx 03/06
on week 62 of 72
hair is very thin whats left
stage 2 grade 2 small mass lllobe
rash,rash,rash
taking peg/copeg
thyroid problems
brain fog gets bad some days
cleared at week 24 and last time still undetected
praying for svr for long time.
Helpful - 0
Avatar universal
Thank you, Ina, for the kind words.

I noticed this fact also.  Actually, your post encouraged me to include my info in the Roll Call.

I still hope that my viral breakthrough was a false positive, even though a doctor from the University of FL thought that this was a breakthrough.

BTW, I think we have a lot of similar ancestry background.  I read in one of your posts about your father's struggle to survive as a young Jewish man in one of the Eastern Europe countries, may be even Russia.  I was so fatigued from the treatment that I did not participate in the thread ... and due to my brain fog, I don't remember it well  :)
Well, anyway, in my somewhat diverse background, Russian Jewish ancestry is quiet prominent.

Be well!  
Life is always great, it really doesn't matter what we have to do just to live and enjoy it!
Helpful - 0
Avatar universal
I don't know about warrior but so far I am a survivor. Mike
Helpful - 0
Avatar universal
You approached my lenght of tx. I had a breakthrough at 9 month, just a small one. It probably was a false/neg, but the jerk refused to retest me. Neg at 12 month again, and ever since.
Boy do I wish you make it into SVR land.

Ina
Helpful - 0
Avatar universal
The good or not so good old days...we used to suck up sed rates by mouth, hahaha, at least HIV wasn't around in those days.

Ina
Helpful - 0
Avatar universal
wow! you've been through a lot, what a warrior!
Helpful - 0
Avatar universal
Male 57
Type 1b
1995 diagnosed
June 2000 transplanted
August 2000 treated 52 wks regular interferon 3x per week low dose riba/didn't clear
December 2001 treated 53 wks with Peg-Intron 800 mg riba/cleared late and relapsed immediately
Jan 2002 treated 73 weeks Pegasys and 1000 mg riba/cleared at 11 or 12 weeks and am SVR

Mike
Helpful - 0
Avatar universal
Age 55,male,geno 1,dx 10-06,vl 980,000,bx 2-2     4 week pcr vl only 83 period no zeros! Week 8,wbc 2.1,rbc 3.7,hgb 11.7from 15.9 to start and feeling it.Favorite movie has always been Jeremiah Johnson.A place in time before we brought viruses and wiped out most of the native americans.                                              
Helpful - 0
Avatar universal
Just joining in the role call
Female 54, geno 1B, diagnosed 2005
Treated 48 weeks Peg-intron and ribavirin, relapsed 6 month post treatment :(
Healthy other than the hep C, run, go to gym, eat well, etc.
Viral load pre-tx 115,000  post-tx 446,000--go figure
AST 49, ALT 47
Liver biopsy 2005 stage 3 fibrosis
Worst side effects during tx were fatigue, depression and relentless insomnia
It's improved since stopping meds, but still tire easily
Hair was destroyed, but seems to be coming back;  I just keep chopping off the dead stuff  (my daughter treated me to a deep conditioning treatment at a hair salon and it was great!!-my hair felt and looked like hair again!)
Think I was exposed to the virus on the job, worked in oncology years ago, lots of transfusions and nurses did not wear gloves for everything back in the early 70's;  I guess I could blame my high school guidence counseler for directing me to the healthcare field--I really wanted to be a fashion designer and live in Manhantten or Paris--oh  well!
Wish the best to all here and may we all be rid of this awful disease someday
Helpful - 0
Avatar universal
Male - 51yrs
Geno - 1av
infected in 1981 from about 150 transfusions.
dx- 1999
viral load 4mil
fibroscan - 49 kPa,
never treated
favorite movies: Ghostbusters,High Fidelity, Witness, Ground Hog Day
Helpful - 0
Avatar universal
SJL
Female, age 63, diagnosed Jan.2002 (had to be placed on a waiting list for Peg-Intron.)

Biopsy stats: Genotype 1B w/positive viremia
                    Lobular inflammation-2
                    Portal inflammation-3
                    Fibrosis-4
                    1 million copies
                    First treatment 48 wks. with Peg & Ribavarin
                    Non-responder
                    
                    Second Treatment
                    3,290,000 copies
                    52 wks. of Infergen / Ribavarin
                    6 straight undetectables
                    Relapsed

                    Viral Lode went to 30,000,000
                    Three mths. Pegasys Maintainence Dose
                    14,300.000
                    Presently 2,360,000
                    Therapy ended on Aug.06

The 1st.treatment was with a Gastro
The 2nd. & 3rd. with a Hepatologist
I am now going to Shands Hospital in Gainesville, along  with my Hepatologist, treating many related Hep C problems.

My career was in Donor Development associated with the Orlando Regional Campus, M.D. Anderson Cancer Center, Arnold Palmer Hospital for children and women & Winnie Palmer Hospital for Babies & Women in Orl.FL.
Due to this disease I have had to retire & I miss it terribly.
Their will be no more interferon therapy for me until something less invasive materializes.
My heart goes out to everyone on this forum, just trust and have faith in the Lord.He hears our every word.
Sandy




                    
                    '

                    
Helpful - 0
Avatar universal
I HAD (!) another side effect - horrible bone & muscle pain.
I definitely lost a lot of muscle.
I still can't sleep well (but huge improvement!), have hot flushes, sweats through the night (and I'm not pre-menopausal)... but I read somewhere that with age sleep pattern naturally deteriorates...

Oh well, what ever it takes just to grow older! :)

All the best!
Helpful - 0
Avatar universal
Female - 38yr old
Genotype - 1c
Diagnosed in 1995
Don't know how long I have it, don't know how I acquired it either (dentist office? immunizations?... who knows...)

Fibrosis - stage 1 (by description) in 1995
Fibrosis - stage 2 in 2000, inflammation 1
Fibrosis - stage 2 (but by description it is progressing toward stage 3, since there is mentioning about bridging) in 2005, inflammation 1

Never used alcohol, drugs, etc, but was most likely exposed to chemicals in the laboratory.

Treatment: 48 weeks of clinical trial with interferon and ribavirin.
Non-responder (reduced viral count from 20 millions to ~300,000 and normalized enzymes, therefore I considered myself "a slow responder", "very slow" :)

Month later restarted my treatment with regular Interferon (3 times per week) for approximately 1 more year.
One year later started Infergen (15 mcg x 3 times per week), was on it for the following approximately 4 years or more, on & off, with intermediate dose reductions, since I the rescue drugs were not allowed for reduced blood count).  

Amazingly, when I was on 15 mcg x 3 times per week, my viral count was undetectable (<10).  As soon as Infergen was reduced to 7.5 mcg x 3 times/week, my viral count was a few hundred thousands, when Infergen was stopped, my viral count may go to a million with basically normal liver enzymes, but it never - ever was 20 millions I had prior to all treatments with Interferons with high liver enzymes.

I started daily Infergen injections (15 mcg) with 1000 mg of Ribavirin in 2005.
Undetected at 3 months of treatment (<10) - I don't know, I may was undetected sooner, my first viral count was done at 3 months of treatment. Neupogen 1-2-3 times per week, as needed. During my first 3 weeks of treatment (when my fever was 104 F), I was taking Tylenol or ibuprofen. Did not use any pain pills after that, sleeping pills, or other rescue drugs... I was lucky about that...

Undetected for the following ~ 7 months. Viral break through (~260 International Units/ ml). Repeated test two weeks later - undetected (<10), repeated test a few more times at 2-4 weeks intervals - UND.
Treatment was extended for one more year after last UND was measured.  Completed my treatment a few days ago (total 98 weeks).  Don't know results yet. My Dr. thought that I had approximately 10% chance for SRV.
Holding my finger crossed :)))))

Major side effect was fatigue, especially during my 2nd year of treatment. Now my energy level is significantly improved. Vision deteriorated, I usually develop cotton wool (?) spots on my retina when I'm on treatment, but it is reversible. I think now I killed my thyroid permanently, but it is a small price to pay. Last 2-3 months I was taking a small dose of thyroid hormone, but on my last day of treatment I stopped it for 3 days or so. Later I restarted thyroid med. again, because my energy level was low.  Now that my energy is somewhat back, I'm planning to stop my thyroid medication again. I hope that may be I'm a lucky one (there was a study that 12% of patients developed thyroid problems on treatment and 10% normalized their thyroid function, after stopping the treatment). Brain fog was horrible in later days of treatment; it was hard to focus on my work projects, so I develop a system to switch then frequently. :) Thank God, brain fog is GONE!  I had this dull feeling like somebody hit me in my head - it is GONE!!

I think I covered everything...

All the best to everybody!! You are all heroes in my eyes!! I hope that soon (very soon!)  this decease will disappear... completely!

I also would like to add that I really appreciate this forum.  Even though I don't post frequently, I read it all the time since my viral break through 1 year ago (when I discovered it), now I'm recommending this forum to everybody (including my doctor).  Thank you guys, you rock!!!

Have a great day!!



Helpful - 0
Avatar universal
Hi, F 49y.o. bx. 2/2 vl 5ml at dx. tx started feb.07 geno 2  so far not much on sx. just did shot 13 tonite. have had since mid 80's. fav movies Horse Whisperer.  I read daily but don't post much . This forum has been a lifesaver for me. thank you all for your knowledge & patience with all of us who are new here.  Karen
Helpful - 0
Avatar universal
Female - 33
Diagnosed May 07
Viral Load 13K
Genotype - still waiting for results
Biop - not done yet

Have no idea how I got it and how long I've had it.  It is a little scary since I am still new to this.  
Helpful - 0
186606 tn?1263510190
Age 47 Female
A little bit high BMI (Sorry Copyman, no under 110 lbs here)
Acute (infected Nov. 06)
Initial VL 42,000
Just finished eighth shot
1400 riba
VL UND since week two
Genotype 4 (wild type)
No biopsy
Current LFTS in low 20s, were 700 and 800 at highest in January
Dropped hemoglobin from 16.9 to 12.0 as of thursday.
Sides are not nice
but I am currently still working full time as a project manager for S/W company


Helpful - 0
Avatar universal
HERE!!!     Whew, hope Im not tardy..LOL...

Geno 2b
Female
34yrs
Peg/Riba 24wks
Start: Aug. 3rd 2006
Last Shot: Jan 11th 2007
Last Riba: Jan 18th
Starting VL: 1,099,300
S-G: 1/1  
Clear since week 12 I think.
Helpful - 0
Avatar universal
Like to clarify one sentence:
During tx I tested neg at 3 and 6 month, but pos at 9 month, and than neg again for the rest of tx.
Have been undetected since ending tx over a year ago.

Ina
Helpful - 0
Avatar universal
Female 60 years old
Type 2a
asymptomatic cryoglobulinemia
viral load around 1 mill
Had hepc for 38 year
estimated stage 3
diagnosed in 99, tx in 2001 with the old 3 times a week Intron and 800 Riba for 6 month and relapsed.
Tx again with Peg and 800 Riba, but tx for over 2 years, from Oct.2003 - Jan.2006
had a pos RNA after being neg at 3 and 6 month

Now undetected, for cryo as well.
Still suffering with many post tx sides.

Of the many favorite movies....Ship of Fools, Whos live is it anyway, The life of Ivan Denisovich (about life in the Gulags), Sunflower, Save the Tiger,
and I am a sucker for: Once upon a time in the West, and Once upon a time in America.

Ina
Helpful - 0
Avatar universal
Female - 63 yrs
Geno: 2b
Pre-diabetic, but taking Lantus Insulin.  Also auto-immune problems (cutaneous scleroderma, called morphea)  
Started tx: 12-27-06.
Cleared at 4 weeks, bad sides, taken off meds at 13 weeks.  Still UND 4 weeks after stopping.  Still feel not quite up to snuff after 2 months off meds, but feeling way better than i did.
Diagnosed: 7/2006
Probably infected for at least 15 to 20 years - don't know how I got it but suspect from sharp tools at work
Viral Load at start: 1.25ul
Liver condition: Stage 2 grade 2
I have so many favorite movies, but off the top of my head: Cinema Paradisio, Casablanca, The Big Lebowsky, The Wizard of Oz, La Strada.  Looking at all your responses, I too love Ferris Bueller (I grew up right where it was shot), just saw Dirty Dancing for the first time since it came out - and it holds up!  Wonderful movie. Adore old film noir movies too.
Books: again off the top of my head - anything by Louise Erdrich, T.C. Boyle, Dickens, Twain, Updike - also love good mysteries, new and old (adore Raymond Chandler).
Music: world, Motown, classical and especially jazz, especially anything on the Bluenote label.  And of course Pink Floyd.
Helpful - 0
Avatar universal
Husband is:
52 yr. old male
infected most likely in late 70s
diagnosed in fall 2005 after routine physical started treatment Sept 2006
Fall 2005 - Spring 2006:  Cat Scan, Ultrasound, Endoscope ,MRI, & bx
Stage probable 4
Inflamation 3
Platelets in normal range, billi & INR/PTT slightly out of range
Starting Viral load 580,000
geno 1A
Week 37 of 48
Peg-Intron/1200 Riba
undetected <615 at 12 wks
undetectable by TMA at 34 weeks
AST/ASL normalized week 4
Helpful - 0
Avatar universal
Liv
Age: 56
Genotype 1a
Dx'd.  4 yrs. ago
Likely source of infection:  Mult. blood transfusions 1974 and 1977
Bx. results as of 11/06 :  Grade 1, stage 1
Last VL over 2 million
Haven't treated yet - patient of Dr. McHutchinson's
New Grandma!
Favorite movies;  "Gone With the Wind" ,  "Gettysburg",  "Braveheart"  "The Hunt of Red October"  and almost any movies with Anthony Hopkins and Clint Eastwood.
Originally from NY
Helpful - 0
Have an Answer?

You are reading content posted in the Hepatitis Social Community

Top Hepatitis Answerers
317787 tn?1473358451
DC
683231 tn?1467323017
Auburn, WA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.