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Hi Afsi,

I seem to recall that our Dr. had said no vaccinations. I believe that

children who are immunosuppressed may not benefit from the vaccination (and

that refers to dead virus- they certainly wouldn't give anything live) But I

know that it is an issue even for siblings. Elliot's younger sister had the

dead polio vaccine, and the ped. rheum even told me not to give her the

chicken pox vaccine, and Elliot had had chicken pox.

The truth is- most children are getting their vaccines so the lilkelyhood

that your child will be exposed to these diseases are very small.

Elliot was diagnosed at 22 months and had his early vaccinations. I do know

that we didn't do his 5 yr old booster.

Rena

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IM On combo myself going on three months. I know its terrible But the

response rate is a lot higher with combo than with the interferon alone

thats the best imfo i can give you Good luck keep in touch

Joe

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Barbara:

No, I'm not a doc or in the medical profession at all. He does respond to

questions when he can though.

The support group you joined has a master list and everybody gets a copy of

your questions, comments, and answers and you get a copy of our stuff too.

Hopefully there will be some information that you can use! I guess you could

always e-mail whoever you wanted to, without everybody getting a copy.

Here's the doc's e-mail address (gidoc@...) if you feel more comfortable

corresponding with just him. Of course, we're happy to have you along also!

:)

I'm in the group because I have Hep C also. Your husband was lucky that he

could tolerate the combo therapy, because after two months on it I sure

couldn't. I'm hoping that eventually I'll be able to tolerate a new drug in

the future.

Hugs, Hollie

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So you're close to Cedar Key? That's where the husband and I usually go for

special occassions (birthdays, anniversaries). Nice area! Hollie

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your chat emails are going out to thousands of people. can you guys chat

privately. your loading up everyones mailbox's

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Thank you for answering my e-mail.I just joined ..Please forgive my

ignorance..Are you a member the doc. ? Thank you again...Barbara

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o.k.Joe..thanks..we live in Fla. do you mind if I ask where you live?

And how are you doing? barbara

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I also live in Central Florida, and I am a provider of health care. If I

can help, let me know. Marty

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In a message dated 1/10/2000 1:14:50 PM Pacific Standard Time,

AABASSO@... writes:

<< rom: AABASSO@...

your chat emails are going out to thousands of people. can you guys chat

privately. your loading up everyones mailbox's

I fail to see where your problem is with the " chat " emails. For some, this

list is the only support they have. Yes, we definitely rely on

>>

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For Barbara,

Here is the info of your interest:

Approximately 5%-10% of sustained responders will relapse with HCV

infection over the next 5-10 years

All HCV patients who achieve a sustained response to interferon

monotherapy have been shown to have a " durable " response. Ninety-five

percent of such patients continue to have undetectable virus when

followed for 3-5 years. Whether this finding holds true for patients

receiving combination interferon/ribavirin therapy has not previously

been addressed but results one such study are available now.

A subset of 316 sustained responders have now been followed for more

than 6 months to determine whether the response to treatment is durable.

Ninety-seven percent of patients demonstrated a durable response

(defined as the absence of detectable HCV RNA when followed a further 12

to 36 months after cessation of therapy). Thus, the late relapse rate

was < 3% and the durability of the response appeared to be equivalent

for combination interferon/ribavirin and interferon monotherapy. These

findings indicate that irrespective of treatment strategy, a sustained

virologic response 6 months after cessation of treatment will most

likely be maintained in the majority of patients. This study will

continue with a total follow-up of 5 years.

However, A subset of 316 sustained responders have now been followed for

more than 6 months to determine whether the response to treatment is

durable. Ninety-seven percent of patients demonstrated a durable

response (defined as the absence of detectable HCV RNA when followed a

further 12 to 36 months after cessation of therapy). Thus, the late

relapse rate was < 3% and the durability of the response appeared to be

equivalent for combination interferon/ribavirin and interferon

monotherapy. These findings indicate that irrespective of treatment

strategy, a sustained virologic response 6 months after cessation of

treatment will most likely be maintained in the majority of patients.

This study will continue with a total follow-up of 5 years.

However results of previous studies have shown that individuals with

hepatitis C and advanced fibrosis or cirrhosis respond less well to

antiviral therapy.

The viral genotype also has an effect on treatment outcome.

70%-80% of those infected with genotypes 2 and 3 will be sustained

responders to therapy compared with only 10%-20% of patients with

genotype 1. He also noted that approximately 5%-10% of sustained

responders will relapse with HCV infection over the next 5-10 years.

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Dear Barbara,

What was/is his PCR level when he ended treatment? And why was he on it for

only 6 months?

Love,

Bren

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Dear Barbara,

What was/is his PCR level when he ended treatment? And why was he on it for

only 6 months?

Love,

Bren

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In a message dated 1/11/2000 8:55:01 PM Pacific Standard Time,

Papaspridg@... writes:

<< RNA, is that the viral load? >>RNA stands for " Rbionuclear acid " What

does that mean? ha ha I'll try to explain it as best I can without further

confusing you. HCV is a single stranded RNA virus. And yes, you could say it

is your viral load although the correct term for your viral load is PCR RNA.

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In a message dated 1/11/2000 8:55:01 PM Pacific Standard Time,

Papaspridg@... writes:

<< RNA, is that the viral load? >>RNA stands for " Rbionuclear acid " What

does that mean? ha ha I'll try to explain it as best I can without further

confusing you. HCV is a single stranded RNA virus. And yes, you could say it

is your viral load although the correct term for your viral load is PCR RNA.

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Hi Afsi,

Josh got sick during the last month of kindergarden, so he had already

had all of his vaccinations. And he had no apparent side effects from

any of them. Last year the schools sent home papers to all parents,

telling us that all of the 4th and 5th graders were to get the series of

3 hepatitis vaccines and that it would be provided free by the schools

and the public health department. There was a little form to fill out

and if you didn't want your child to receive it, there was a space to

fill out the reasons why. So, I filled it out and said my son is taking

immunosuppressing drugs (methotrexate and prednisone) and that I didn't

feel it was appropriate for him. The school had no problem at all with

that and he was one of the only kids that didn't get scheduled in.

Nearly everybody else got it. I volunteered to help out on the days it

was given.

After this notice, I called the pediatrician. He told me I should ask

the rheumatologist. I did. He said he didn't foresee any problems with

it. And that since josh's immune system is suppressed, it might be

better for him to get the vaccines than to possibly risk exposure. I

made an appt for both kids at the pediatricians and told them I'd be

really, really upset if anything happened after the immunization. They

couldn't be sure. We went ahead and did the first one. Nothing terrible

happened, so the next month we did the 2nd one. Again, no side effects

at all. Three months later we did the last one and everything was fine.

So, even though he's on MTX he got the shots. Our kitten reacted worse

when she got her first shots. She was really tired and didn't want to

eat that day. The children, even Josh, were absolutely fine. That's just

our experience, though.

Take Care,

Georgina

Afsi Goodarzpoor wrote:

>

> Hello everyone:

>

> I have a question about vaccination of kids with JRA. My daughter is going to

> turn 4 in june and I guess all kids have to get certain vaccinations such as

> MMR, Polio, etc at that age. Has anyone's kid who has had JRA ever been

through

> vaccination while they were still taking Methotrexate? Did they have another

> flare up as a result of any vaccination. I know for Polio, we will need to

get

> the kind with the dead virus but as for the rest of them I am not sure what we

> would need to do. I am very scared of the upcoming vaccination for my

daughter.

> I will ask this question from our Rhuematologist as well. But I wanted to see

> if anyone has had any experience in this area. Thanks.

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Hi ,

I know how you must feel about this whole issue, of vaccinations and the

consequences of them. In my case, it's a little different. I feel very

strongly that the trigger for my son's systemic JRA activity was (or is

somehow related to) his case of the chicken pox. He was a perfectly

healthy child until right after he caught the chicken pox from me. I

caught them from my daughter, who caught them from her little friend. I

wonder sometimes, now, if things might have been very different if the

chicken pox vaccine was available back then and if when it started going

around in our neighborhood, I could have had myself and the kids

vaccinated before we got it. I wondered more about this after the recent

messages about a child here on the list with JRA who was given the

vaccine when her sister got cp, and got a really bad case that needed

hospitalization. But Josh wasn't sick yet back then, so I still think it

might have prevented his JRA. I'll never know for sure, I guess, but

it's something I do think about. I thought it was great that he was

getting exposure to them as a child, since I never did till my 30's and

it's worse for adults. Instead, it seems to have triggered his immune

system in ways i never imagined. If I had quaranteened him from his

sister and me, maybe he'd be just fine today?

Take care,

Georgina

SHANNON MARTINO wrote:

>

> I am sorry to say I am no help to you there will never have a

> vaccination again had her last shots on June 30th 1998 she started

> with afever and a rash on July 2ed and from there she was treates fot J.R.A

> so I hope you get your answers.There is info about that kind of stuff on

> the web that might help you some good luck .

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yes they do:

http://www.myamigo.com/

Question

>From: Daugherty <brian@...>

>

>Hello,

>

> Does anyone know if the company " Amego " has a web page. They sale

>electric mobility Carts. Thank You,

>

>brian,

>

>

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

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