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439539 tn?1233465815

Time For a Roll Call !

I've seen this done and would Love to hear how ALL is doing.
Good Luck To ALL,
Tammy
Dx:  Nov.2007
Genotype 1A
Viral Load 775,000
Grade 1 Stage 0
Currently fighting with the insurance company to start tx.Dx.RA.Waiting to hear results to see if related to HCV or got on my own.Working everyday.
Thank You,
Tammy
23 Responses
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264121 tn?1313029456
Sydney
Dx:  8-28-08
Genotype 1b
Viral Load 128,000
Grade N/A
Tx: I was diagnosed and began treating three months
after I was infected.  I treated from 10/07 to 04/08.
UND at 4 weeks.
SVR since 04/08
I had a lot of transfusions during tx, but other than
that it was normal I think.  I am feeling a lot better
now and almost back to normal except for tx related
RA, but I am hoping to get under control with a bio-
logic - rituxan maybe, so all in all, things are pretty
good as they stand right now.
Helpful - 0
217229 tn?1192762404
DX 2006 TX 2006 and 2007 (24 weeks)
Genotype 3a

Horrible side effects (Brain Fog --- Couldn't remember ANYTHING - pain, headaches, more pain, fatigue, muscle loss and wasting and weight gain - plus others like hair loss, etc.)

about 1 month post the pain got worse and I felt worse. That lasted until about a year and a month or so of  post TX --- my brain fog - and my lack of energy were killing me.

Went to every doctor I could find - all of them were saying "nothing is showing on the tests - except nerve conduction tests" and a couple of others --- I thought I had RA - but they thought it was something completely different.

Went through a variety of medications trying to combat the extreme pain in my muscles and connective tissues... Lyrica made me feel like I was crab walking sideways and the world was tilted... It was the oddest experience I've ever had - and I disliked it --- Cymbalta the same... finally settled on ULTRAM (tramadol). I expect in the next 2 years I'll be on Oxycodone - and I will have to switch back and forth between that and Oxycontin/Tramadol/Oxycodone/Etc - as my body becomes too used to certain types of medications and I'll have to switch out. But I can handle that part.

Finally my Internist did a couple more tests - and determined that THERE was indeed something wrong.

DX with Fibromyalgia and Neuropathy --- but doc today said she's leaning away from Neuropathy and settling more with Fibro - so a full diagnosis of Fibromyalgia was made on the 28th of August --- it took almost 1 year to get a diagnosis - and was not fun in any way.

After about 1 year of Post TX I started regaining more memory and mental functioning - no more brain fog ALL of the time - which was NICE!!! LOL!

Of everything - the Brain Fog / Memory Loss was the most horrible for me.
The pain was the second - and the more debilitating in the long run.

I expect to have Fibro for the rest of my life - and will need meds for it - it is unsure whether the Fibro is from HCV or the TX - but it's all good now as long as I keep it moderated carefully.

I am SVR now - and my last test was in June  2008 HEPTIMAX.

Since about June 30th - almost a full 2 years since I started TX - I started feeling immensely better - for the most part. I was able to go out and play Badminton - and I could walk up and down stairs finally - and I could stand for more than 3 minutes without collapsing in exhaustion.

When I "woke" up from The FOG... I realized my life wasn't what I wanted it to be --- and that the slide into HCV and the  DX and the TX had changed me irrevocably.

I decided that I couldn't live the way I had been living before (being lazy - doing nothing --- watching hubby watch TV and drink beer. After getting out and starting to exercise - it was finally made clear to me that Hubby did not want to change with me ---- And that we had significantly grown apart. So much so - that he had previously sought out other companionship. Since I didn't want to EVER go through another TX for any other disease and I felt that my life was moving forward in a positive way - and we weren't getting along - because I had changed and he didn't like the "new" me --- the one with energy - the one who got OUT of bed --- the One who cleaned up and did everything - that he preferred the lazy, do nothing, whining creature I had become... And he didn't want me to change... Strange that... And we began fighting - and I HATE fighting...

Anyhow - I made the decision to divorce him - and we are better friends now that we divorced 2 weeks ago...

I bought a condo that was close to the house - and moved out 3 days ago... I am still unpacking... Organizing - changing my life by bits and pieces.

Overall - I hated the TX.... But I wouldn't have had to TX if I hadn't found out about this horrible disease that was killing me.

I wouldn't TX again until new drugs came out - if I had to... But I am glad I TX'd the FIRST time...

Wouldn't wish it upon my worst enemy --- especially for those folks who have it worse than me in sides...

BUT --- I am living proof --- that you can MAKE IT --- through the other side.

You just have to realize --- that when you wake up from all of the medical stuff - and you come back to life --- which may take awhile --- YOU ARE A DIFFERENT PERSON.

You change inherently from the inside to the outside.

Things mean different things to you --- than they did PRE-TX and PRE-DX.

Your whole world does change.

So before you TX - decide if you can accept the changing process.

For those of you who've been on TX for multiple times - you have my heartfelt love and idolization --- and respect.

TX is not fun for most of us.

Some folks can bounce right through it --- tra la la la la.

Others - are completely knocked down.

I'd say I was closer to knocked down - but able to pick myself up and make myself go.

Now that I look back on it - I'm totally amazed that I went to work and did the things that I was capable of doing then.

Now ---- LOL! Well NOW --- life is much different.

And I have to say that I believe that life will be much better.

My goal - overall is to help others.

In teaching them MY experience and sharing with them the things that I saw, felt and learned --- I can give others the chance to decide and choose for themselves --- and to know --- if it can happen to me it can happen to others.

For those of you who were or are IVDU --- I want you to know --- this disease doesn't care what class of person you are... It doesn't discriminate --- ANYONE can get this disease... and you are NO LESS of a person... No one deserves this horrible disease that wastes your life away --- one second at a time.

I didn't do drugs (although - now I kinda wish I had... LOL!) and I didn't do anything that was considered "bad" to get it.

So no one should feel like they are bad people for getting this disease.

No one asks for it.

No one invites it in to take up residence.

It's not a CHOICE.

I'm proud of everyone here --- for what you all have taught me.

Without this place - I would have wasted away - given up - because there were days that it was almost too much to bear....

But finding this place was a godsend.

Because there were others who understood what I was going through - at every stage.

And I fell in love with so many of you --- you just have NO idea... LOL! (LMAO - not THAT kind of love... ROFLMAO!)

Anyhow - I roll called my whole world there - so folks can "see" what things can and do happen for others.... including me.

And hopefully it will give one person a glimpse of what life could be like for them --- and it will give them peace of mind.

Much love to each and every one of you.

Meki




Helpful - 0
405645 tn?1249701810
Dx: Dec 2007
Started tx 3/14/08
Genotype-1A
Viral Load -207,000
Grade 0 Stage 0
4wk PCR -497
12wk PCR -< 25 (still detected) will treat for 72 wks
24wk PCR- done last wk still waiting results
Pegasys 180mg, Riba 1200
SX- mouth sores, low grade fevers, some hair loss, eyelashes growing (I like that one), some vision troubles,and weight loss;started tx a little over 100lbs now at 90lbs. CBC's are up and down but so far still holding their own. Have missed one day of work b/c of spending the day in ER due to extreme and unusual sx to AD.

This forum has been wonderful, it has given me the information and knowledge I've needed to feel somewhat in control of my disease.
Thank you everyone.
Ann

Helpful - 0
Avatar universal
Dx:  July.2007
Genotype 1A
Viral Load 6,000,000
Grade 2/3 Stage 2/3
Tx 48 weeks 09/2007-08/2008 without A/Ds
Worst sx - anemia (took weeks 6-48 to maintain hgb above 10), brain fog, pneumonia.
Wend UND at week 4.
Currently 3 weeks post tx, will draw labs for next week for 1 month post tx PCR.  Waiting, hoping for SVR

Thanks to all, I'm so grateful for your wisdom, support, experience and shoulders to cry on.

jd
Helpful - 0
338734 tn?1377160168
DX 2000, genotype 1
BX mild-moderate
BX 2005 stage 4
2006 listed for transplant and transplanted 8 months later
TX July 2007 - Pegasys + 1200 mg Ribavirin
UND at 26 weeks
Worst side effect: Fatigue. Epogen started in week 58 seems to be helping.

Thanks to all the old timers and newbies here for the support!
Helpful - 0
407029 tn?1253992623
DX: 11/07
DID 6MTHS OF TX
ENDED 8/08
GENO 2
UND AT WEEK4
THE MEDS IS WEARING OFF
FEELING BETTER EVERYDAY
PRAYING FOR SVR
Helpful - 0
412873 tn?1329174455
DX:  Jan 2008
        Geno 1a
VL:  2,000,000 initially, in May it was 1,040,000
BX:  Stage 1, no grade
TX:  shot #5 today
       Verttex Tx Naive trial

Pegasys 180, Riba 1000mg and Telepravir/placebo for 8 or 12 weeks, then Pegasys  and Riba only for an additional 12 to 36 weeks.  (I'm double blinded) I also take Zoloft 25mgs daily-never suffered with depression, but started it pre-tx to ease the sx of tx.  Had a dose reduction this week in peg due to low anc.  Apparently I am neutropenic. (your sneeze is my disease, baby!)

Sx have been light so far-fatigue the worst but am maintaining my pre-dx life for the most part. (ok, house is a little messy)  

Slacked off on the water today and am paying the price with a headache now-won't do that again!!

Very thankful to all here for the support and advice.
God Bless us all in this fight :-)

Isobella







Helpful - 0
439539 tn?1233465815
You bet, Good luck girl.It's gonna be gone !
God Bless,
Tammy
Helpful - 0
Avatar universal
dx 1/08
tx 2/08
2b vl 45 ml
cirrhosis
und at 4 weeks after starting tx.
sx, all of the above...but made it thru fine.  Look funny with this little bit of hair on my head!
Take a test on 9/15(4wks post tx) to see if it's back.
Wish me luck!

Helpful - 0
439539 tn?1233465815
I remember not being on this forum very long and reading about Gauf and his struggles wih HCV and treating.He had done a Roll Call.Does anyone know how he's doing ?

Good luck to All of you struggeling with this HCV Beast of a Burden.

Thank you to all the responses.It's nice to know how everyone is doing.
Tammy
Helpful - 0
Avatar universal
Dx: around 1992
Geno: 1b
Bx: 2006 - S1/G1 (Mild)
Baseline vl: 5,000,000
Tx: 8/07 - 7/08
SVR - UND at EOT (und since wk 12 of tx)
Did 48 weeks and will be going for my post 12 week test in October.

Pegasys 180 & Ribapak 800 per day.

Used xanax for the anxiety, irritability.
Didn't need AD's -just needed Procrit to raise
hgb and give me some energy.

Didn't know I had the gene for psoriasis but tx made me very aware of it.
It's actually calming down now post tx.

Good Luck Tammy and all...
enigma
Helpful - 0
476246 tn?1418870914
DX 2008
geno 3a
VL 1.300.000
BX - none due to slow clotting factior
TX start  19 Aug 2008

Pegasys 180mcg
Rebetol  800mg
citalopram 10mg

Minor physical sx so far.... unbearable mood swings, have just been put on AD.

God bless,

Marcia

Helpful - 0
577132 tn?1314266526
Geno 3A

Diagnosed in 1986 with Non A Non B Hep, baffled my Doc and was ignored until 1992 when smart new Doc diagnosed Hep C.  Sent to the hospital who told me I would die with it, not of it, and was once again ignored until 2003 when I started making noises.

1st BX 2003 - Grade 2 Stage 2, decided to self fund treatment (no insurance, no public health system tx for Hep C back then).

1st TX 2004 - Non Responder after 24 weeks Peg/Riba

2nd BX 2008 - Grade 2 Stage 1 (strange to go backwards, maybe a result of 1st TX)

2nd TX 2008 - Enrolled in Phase 1 ascending dose trial of R7128 (aka RO5024048), the experimental oral nucleoside analog HCV polymerase inhibitor for Gt3 non-responders.

May VL = 1,720,000 (TaqMan)

June = UND <15  (TaqMan)
July  = UND <15  (TaqMan)
Aug  = UND <15  (TaqMan)

Currently coming up to shot 15, hoping to extend treatment past 24 weeks.

Have all the SX, each day is different, some worse than others.  I have anemia and neutropenia from the TX meds, also on ADs but managing to hold my own and keep working with the support of my colleagues, friends and family.

I visit here everyday and I think this is a wonderful resource and forum for people who are battling this together.   Big ups to you all and thank you very much for all for your much appreciated advice, opinions, and thoughts.

Bless x
Helpful - 0
408795 tn?1324935675
dx 1992

bx 2005 stage 1 grade 1 to focally 2

geno 1a

VL in later 2007   4,440,000

Went back to the clinical trial site in my area today and spoke to one of the head honchos she said that I may be accepted into the Boceprevir trial which is coming up shortly.  They had nixed me for the telaprevir trial b/c of prescribed meds, but even that may happen as they are becoming more lenient with their prescribed meds intake.  In the interim Monday, I went and met my NP under my current GI, she's very sweet and seems capable enough.  I got my HBV vaccine, but I wanted to get back to the trial site as I heard they were taking prescribed meds now.  I really don't want to tx under my GI because he said he didn't think I would attain a better quality of life after txing.  Didn't give me any specifics just gave me his unwanted opinion.  So in a nutshell, if it's between SOC under my insurance or SOC with a PI in a clinical trial, I'll take the latter.
God Bless
Helpful - 0
493068 tn?1224765315
Dx  1999

geno 1A

16,5000,000 before tx.
open biopsy during cholecystectomy showed grade 2 inflammation, fibrosis grade 2 moderate damage(needle biopsy 1 year earlier showed no damage no fibrosis)
48 weeks of Peg Interferon-Ribavirin--completed Feb. 06
SVR.... last tested 11/07
many terrible side effects since Feb. 05 and still present.
Helpful - 0
276730 tn?1327962946
Diagnosed 1992. Stage 2-mild activity. 1 A. 1st time txing. Pegasys & Riba.......going on 41st week. No rescue drugs havent lost a pound. Lost all my hair except a few strands....and my mind too but that doesnt count! Exhausted, severe psoriasis in scalp and ears, itchy, scaly. irritable, no concentration. HGB holding at 10.6 thruout tx.
Tired no stamina whatsoever......the good side to this tx will be over soon!!

Defintely feel like a good Italian handbag!!

Helpful - 0
Avatar universal
DX  1999

geno 1a

31/2 times txing  

Now on infergen, 9 ml night: 1000 Riba, procrit, neupogen
Effexor.

Sx, trouble breathing, horrible headaches, body aches, stomach nauseaus,  lost 20 lbs since starting,   mouth sores, trouble with BCs,  bone pain,   trouble sleeping,   hair loss, need i go on?

Infergen is a gorilla!
Helpful - 0
388154 tn?1306361691
dx 1992

geno 3

bx november 2007 grade 1 stage 0

vl 3.8 milj.

currently on sec tx gonna take shot 34 of 48 tomorrow

pcr week 4 was <15iuml taqmantest ( but still detectable )

Although such a good bx result I have had several sever sx due to HCV,
such as fatigue ,muscel and joint pain ,lowerback pain, general stiffnes in the whole body
insomnia, mood swings and more.

How do I know this is HCV related? because of the testamony from many others here at the forum about similar problems, and the strongest evidence of all although relaps most of my problems dissapered 3-4 months post first tx.



Helpful - 0
Avatar universal
Dx: - 2000

Geno: 1

Stage: 1

Tx Sept 2006 - Sept 2007

SVR  - last PCR March 2008

Would never have made it without my friends here!!!!!

Helpful - 0
148588 tn?1465778809
Dx: 1992

Geno: 3e

Bx: 2001 - mild fibrosis

Baseline vl: 625,000

Tx: 10/30/02 - 4/9/03

SVR - last PCR April 2007
Helpful - 0
250084 tn?1303307435
Geno 2b
Helpful - 0
250084 tn?1303307435
DX May 07
BX July 07
moderate damage
TX Sept 07
Done Feb, 08
UND 12 wks, post, 24 wks. results any day now.

Woosy girl compared to Debby thru tx :)

LL
Helpful - 0
179856 tn?1333547362
DX August 2005

Geno1A and 1B

Baseline 568k
Stage 3
72 weeks TX

SVR 18 months!!!   (Thanks to the oldies in here who wouldn't let me give up when I wanted to!)  :)

Debby
Helpful - 0
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