Re: New to the group

[Guest guest]

Thanks

In HepatitisCSupportGroupForDummies , Goolsby

wrote:

>

> Good luck mark I am sure tx is not any easier the the third time

around

>

>

> God bless I will be praying

>

> raindog_54 wrote: Hi

everyone My name is Mark and I just joined the group today. I

> live in Arcata, California...it's up in the NW corner of the

state.

> I'm 52 and I've had HCV for about 30 years now. Just finishing my

4th

> month of Pegasys/Copegus. My starting viral load was supposedly

23

> million but that result, in my opinion, is invalid. I discovered

the

> VA clinic up here didn't know they needed to freeze the samples

and

> they were just shipping them refridgerated. Whats even more

disturbing

> is that the VA lab in Palo Alto that runs the test was accepting

them

> unfrozen and running them anyway. That would never happen in a

> civilian lab. Having been a lab tech for 30 years I am very

familiar

> with the handling requirements and know that unfrozen the virus

> degrades and you end up with falsely elevated numbers. So I think

it's

> safe to say that my starting viral load was at least a few to

several

> million. It had been 4 million a year ago. It was 600,000 after

the

> first month of treatment and 58,000 after 3 months. Will be

getting

> another viral load soon an I guess this one will determine if I am

> still responding. I'm genotype 1A and had previously failed 3

courses

> of interferon back in the 90's...Intron A alone, Infergen, and

> Intron A/ribaviron combo. So being a 3 time loser...I have my

fingers

> crossed.

>

>

>

>

>

>

> ---------------------------------

> Check out the hottest 2008 models today at Yahoo! Autos.

>

[Guest guest]

The thing with waiting for the next type is they have been saying it will be available in a few years for 5+ yrs now. In '02 We was hearing that they should have something newer and better than the peg/reba in a "few years" My hep dr told my hubby and I last year that it would be at least 5 years before they would have some new meds ready. Even with the FDA FAST TRACK. The sooner you treat, the better off your liver can be. If I could do tx today I would. I want to stop the damage this dragon is doing to my liver as soon as I can. My Two Cents. draindog_54 wrote: Thanks , If your liver can take it, you might as well wait until the next class of drugs come out in a few years. The treatment will be much shorter...only a couple months I think. take care, Mark .

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[Guest guest]

Hi Mark, Welcome to the family. Boy, do you sound like me! I too have had HCV for 30+years (since '69 probably, that's when they said I had "serum hepatitis") I'm a non-responder too, did Interferon "mono" in the early 90s then interferon & ribivirin about 3 years later - neither worked so I was all ready to try again with peg/riba when I was told I had "decompensated" cirrhosis & couldn't treat again. Now I'm in ESLD but not bad enough that I need a t p thank the gods! Went for a transplant assessment last year & they said not yet. I never had a viral load test. My doc doesn't think much of them except for assessing response to treatment & since I can't do tx - who cares? Not me - I don't need any

more bad news. Anyways, welcome to the Dummies, they're a wonderful bunch who've saved my sanity more than once. SuZieraindog_54 wrote: Hi everyone My name is Mark and I just joined the group today. I live in Arcata, California...it's up in the NW corner of the state. I'm 52 and I've had HCV for about 30 years now. Just finishing my 4th month

of Pegasys/Copegus. I'm genotype 1A and had previously failed 3 courses of interferon back in the 90's...Intron A alone, Infergen, and Intron A/ribaviron combo. So being a 3 time loser...I have my fingers crossed.

Next time I'm coming back as a cat

[Guest guest]

Welcome to the group - I'm new as well but rather than having HCV myself my husband has it. He has no idea how he got it either but the drs said that most likely he had it for over 25 years before it showed up. In researching it we found that it is very prevalent in Vietnam Vets of which he is one. When it was mentioned the dr even said that was mostly likely where he picked it up. So you never know.

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[Guest guest]

Welcome

to the group. I’m , age 50, in Georgia, late for work.

Stacey,

it doesn’t matter how you got it. The surgeon that took out my

gallbladder has it. It crosses all classes and economic levels. It’s

just not important. We have it and we have to deal with it now, that’s

all that’s important here in this group.

Some

people have been helped to being healthier in general thru herbs and

supplements, but many are dangerous and many are scams. There are no

natural remedies that cure hep c. The current treatment of pegylated

interferon + ribaviron is the only thing proven to send a viral load to undetectable

levels, and it only works 50-80% of the time, depending on your genotype.

I

think if you’re this sick all the time, you’re going to have to

pursue your hcv and possible treatment. Your liver isn’t going to

get better on its own, honey. Do you know your genotype yet? Have

you had a biopsy to find out your level of damage?

New to the group

Hi, my name is Stacey and I am a 35 yo woman with Hep

C. I don't know how I got it. Honestly. I found out 2 1/2 years ago. I have not

began treatment yet because I do not have good insurance. I was devastated at

first, but it did explain why I was sick all the time. I mean ALL the time

too. If a cold goes around 2 towns over, I catch it and am sick for 6 weeks.

lol. I suppose this is due to the filters (kidneys, liver, gallbladder) not

being properly functioning. I have had my gb removed, and I have lots of kidney

stones and the liver of course is affected by the hep c. It is possible that I

got the disease from a home tatoo when I was 18. We all got them that day.

Probably 30 of us. Fortunately, I have never been too big a drinker, so I

believe that has helped me.

Back to the hep, it looks like I have had this for

some time, although I have not seen a hepatologist yet. I have heard of many

natural rememdies that have helped and I've heard some horror stories, too. I

am interested in everyones feedback and experience and how they cope and I

wanted to know if other people are sick all the time like I am.

Three winters ago, I caught an ear infection. Even

with antibiotics, it spread to the bones and almost into the brain. I was in

the hospital for a week and had 8 more ear infections within the next year.

After the 6th ear infection after the hospitalization, the doc ran some blood

tests and it showed the elevated liver enzymes. I told him that is just common

for me, they did the test when I was 20, same thing and I didn't have hep a or

b. At the time there was no test for C. He decided to run it anyway and that's

how they found I did have HCV. I appreciate anyones input and experiences.

Stacey

[Guest guest]

I'm always getting infections in the kidneys or bladder all the time.My hep c has no viral load since treatment in 98-99 but my immune system seems to be permanantly damaged.I had hep c since 64and didn't know it until 89 when I started a new medication

to help manage my pain for tendinitous.I reacted to the medication my getting yellow jauntice within three days on this new treatment.It was called non a and non b.I also got a letter from the red cross saying my blood had hep in it and went to the doctor.It wasn't until 92 they called it hep c.Before treatment and after I got jauntice I was sick all the time.I moved to Cape Breton,Nova Scotia with my husband cause I wanted my husband back home cause I didn't think I had much time left.I was continually sick.I understand how you feel.Quite any form of alcohol now and see if the doctor will give you a biopsy to determine what genotype you are and what condition your liver is in.Try to get insurance as soon as possible so that you can get treatment.Listen quite often the drug companies will treat you,on their CARE program.Ask the specialist about it and you just have to fill out the paper and prove you can't afford to pay for the drugs.That is how I got my treatment.

Gail

-----Original Message-----From: HepatitisCSupportGroupForDummies [mailto:HepatitisCSupportGroupForDummies ]On Behalf Of Stacey Sent: October 8, 2007 11:12 PMTo: HepatitisCSupportGroupForDummies Subject: New to the group

Hi, my name is Stacey and I am a 35 yo woman with Hep C. I don't know how I got it. Honestly. I found out 2 1/2 years ago. I have not began treatment yet because I do not have good insurance. I was devastated at first, but it did explain why I was sick all the time. I mean ALL the time too. If a cold goes around 2 towns over, I catch it and am sick for 6 weeks. lol. I suppose this is due to the filters (kidneys, liver, gallbladder) not being properly functioning. I have had my gb removed, and I have lots of kidney stones and the liver of course is affected by the hep c. It is possible that I got the disease from a home tatoo when I was 18. We all got them that day. Probably 30 of us. Fortunately, I have never been too big a drinker, so I believe that has helped me.

Back to the hep, it looks like I have had this for some time, although I have not seen a hepatologist yet. I have heard of many natural rememdies that have helped and I've heard some horror stories, too. I am interested in everyones feedback and experience and how they cope and I wanted to know if other people are sick all the time like I am.

Three winters ago, I caught an ear infection. Even with antibiotics, it spread to the bones and almost into the brain. I was in the hospital for a week and had 8 more ear infections within the next year. After the 6th ear infection after the hospitalization, the doc ran some blood tests and it showed the elevated liver enzymes. I told him that is just common for me, they did the test when I was 20, same thing and I didn't have hep a or b. At the time there was no test for C. He decided to run it anyway and that's how they found I did have HCV. I appreciate anyones input and experiences.

Stacey

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[Guest guest]

Hi ,

I have had the genotype. 1b. I dont know what that means, but that's

what I was told. It's nearly impossible to get to treatment because I

have medicaid. I don't work. It takes months and months for an appt in

the city I live closest too. I have not had the biopsy yet. I was quite

surprised to hear that your surgeon (gallbladder) has it. I thought

that you couldn't work with patients if you have hep. I imagine that

he/she has had the treatment. May I ask, if the treatment is

successful, if you get it down to undetectable, does that mean that you

are 'cured' from hep c? Also, does anyone else who has hep c also have

psoriasis? I have a severe case of it. Covers my arms and legs by about

45%. I have heard that the hep treatment makes it worse. Does anyone

know anything about the two?

Stacey

[Guest guest]

Gail,

Thank you! I used to also get a lot of bladder and kidney infections,

but they have slowed down now considerably. I drink a lot of liquid. I

have never been a big drinker (of alcohol) and since finding out, I

have limited myself to a few drinks a year. That was one of the

biggies. I take hydrocodone regularly, but that is for a problem with

my back. I have severe joint pain and somedays can barely move around.

I thought that I had rheumatiod arthritis, the doctor blew me off when

I mentioned it, my grandfather, mother and sister all have it and the

doc wouldn't test me for it. I want another dr. I have insurance but it

is medicaid. I don't work so there is no way to get insurance. Thank

you so much for your input. Is depression one of the syptoms? I heard

someone mentioning antidepressants in an earlier post.

Stacey

[Guest guest]

,

Thank you for your response. I'm sorry we all have to go through this.

Re your husbands hcv, the doc (family doctor) told me that the genotype

I have is common in Asia. 1b, is that the type your husband has?

Stacey

[Guest guest]

,Thank you for your response. I'm sorry we all have to go through this. Re your husbands hcv, the doc (family doctor) told me that the genotype I have is common in Asia. 1b, is that the type your husband has?Stacey

I'm not sure. I need to find our copies of his records from his old dr. We are in the middle of remodeling and things are a little scattered right now.

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[Guest guest]

Currently I use elidel and triamcynolone ointment and cream. neither really works, but they help. I know tanning would help too but can't afford it. Thank you for sharing that with me.Stacey

Stacey my daughter was prescribed elidel one time and we were told later not to use it as it has been connected with liver damage! That is what our GP told us when we moved back to OK from IL ( it was prescribed in IL).

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[Guest guest]

Thank you Bonnie, it would be hard for a doctor not to notice the

psoriasis. It's on my arms, hands legs, even a spot on my belly button

of all places. But when and if I ever get into treatment for this hep I

will be sure to ask about extra meds for psoriasis. Currently I use

elidel and triamcynolone ointment and cream. neither really works, but

they help. I know tanning would help too but can't afford it. Thank you

for sharing that with me.

Stacey

[Guest guest]

Gail,

I don't think my arthritis could take Canada. lol. Plus, I think that

would be defecting or something. I think it is against the law to move

to Canada, if we get a democratic president this time we will likely

get socialized healthcare too. I would like less government in America,

but as far as healthcare goes, that would be awesome. You may not have

to wait near as long for healthcare as you would if you were on

medicaid here in the states, it is free for low income families with

children in the home in certain states, but many many things are not

covered and the things that are are ineffective treatments. Ok, I will

stop complaining now. lol.

Stacey