Re: Digest Number 1411

[Guest guest]

Hi all!

I am not a new member but have been relatively quiet as I have been feeling

quite ill. I just saw a Rhuematologist at Hopkins University who has

definitively diagnosed me with RA. I was almost relieved, because I had not

been positively diagnosed for so long.

Anyway, I have been on mtx for 4 months and seen some improvement, but still

experience quite a bit of nausea and diarrhea after each treatment. (I have

lost 15lbs in 3 mos). The doc at Hopkins feels my sed rates and

intolerance for the mtx means it is time for me to try Enbrel. I know that

there have been mixed reviews about this new med. Is there anyone out there

who can share their experiences with me? Side effects etc. This is my 3rd

drug in six months and I would love to know what I am getting into. Thanks!!!

[Guest guest]

Have you considered switching to injections of mtx instead of the oral?

I was on oral and had bad GI side effects. I never was given the option of

injections, but many people here have had great luck with them. I only

wonder about this because you've said that you have gotten relief from

the mtx.

I've been on Enbrel for 2 years, and have to say it has been the best

medicine

for me in over 20 years. I have no side effects at all, not even the common

one

of site injection irritation. Enbrel is supposed to be less toxic, but the

long

term effects are not known. I hope you find something that works for you.

a

----- Original Message -----

From: <tmgoley@...>

< egroups>

Sent: Friday, November 24, 2000 10:13 AM

Subject: Re: [ ] Digest Number 1411

> Hi all!

> I am not a new member but have been relatively quiet as I have been

feeling

> quite ill. I just saw a Rhuematologist at Hopkins University who

has

> definitively diagnosed me with RA. I was almost relieved, because I had

not

> been positively diagnosed for so long.

>

> Anyway, I have been on mtx for 4 months and seen some improvement, but

still

> experience quite a bit of nausea and diarrhea after each treatment. (I

have

> lost 15lbs in 3 mos). The doc at Hopkins feels my sed rates and

> intolerance for the mtx means it is time for me to try Enbrel. I know

that

> there have been mixed reviews about this new med. Is there anyone out

there

> who can share their experiences with me? Side effects etc. This is my

3rd

> drug in six months and I would love to know what I am getting into.

Thanks!!!

>

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Change subscription options:

>

[Guest guest]

Dear TM

I know the feeling of finally knowing what you have. It is a relief in

a way. My RA hit so fast I thought I was losing my mind and scared to go to

the Dr. I couldn't understand how one day I was just basking in the glow

of my pregnancy and the next day it felt like all the bones were crumbling

in my body and I couldn't move my arms. But finally went and here I am.

I have not taken Enbrel yet but wanted to share my experience with MTX.

January 4, I will have been on it for a year and we are still adjusting the

dosage. I was on the pills and quite ill from them. My Rheumy then

switched me to the injections and I seem to tolerate them much better. I

wish I could say I have lost weight on it, but I am losing hair. Don't need

to have my hair cut as often either, saves me some money. See there are

positives to everything. Good luck with whatever your Dr. decides. Will

pray for you.

M.

----- Original Message -----

From: <tmgoley@...>

< egroups>

Sent: Friday, November 24, 2000 9:13 AM

Subject: Re: [ ] Digest Number 1411

> Hi all!

> I am not a new member but have been relatively quiet as I have been

feeling

> quite ill. I just saw a Rhuematologist at Hopkins University who

has

> definitively diagnosed me with RA. I was almost relieved, because I had

not

> been positively diagnosed for so long.

>

> Anyway, I have been on mtx for 4 months and seen some improvement, but

still

> experience quite a bit of nausea and diarrhea after each treatment. (I

have

> lost 15lbs in 3 mos). The doc at Hopkins feels my sed rates and

> intolerance for the mtx means it is time for me to try Enbrel. I know

that

> there have been mixed reviews about this new med. Is there anyone out

there

> who can share their experiences with me? Side effects etc. This is my

3rd

> drug in six months and I would love to know what I am getting into.

Thanks!!!

>

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Change subscription options:

>

>

[Guest guest]

Harper wrote..

..) It's good for me, and I suspect for others, to be reminded that we aren't just walking diagnoses, but real people with families, dealing with the diseases. To my doctor, I'm only a name associated with a series of lab tests. To people in my neighborhood, I'm a person

and I say "I second that!!!"

Joanne C. (PBC), ~*~*~ List Moderator for LIVERSUPPORT_L Digest

http://pbcers.org

[Guest guest]

Hi:

I have been " listening' to all of your posts for a while now without posting

myself. I am wondering - where CAN a person find statistics on reactions to

immunizations? Are there studies that show a link between autism and

immunizations? And all the other problems you mention? I can't remember if I

" posted " my intro or not, still getting used to a new computer. Here it is:

>My name is Lynn Young . I live in Ontario, Canada. I have

>two young daughters, one turning 7 this weekend, and the other 4 1/2. My

>elder daughter, Mickaela, has juvenile rheumatoid arthritis (systemic onset).

>The symptoms began when she was a little over two (cyclical high fevers,

>lethargy, total loss of appetite). Despite repeated visits to our family

>physician and a pediatrician, she was not dignosed with arthritis until the

>following year, when her ankles and knees became swollen and she was totally

>unable to walk any longer.

>Around this time, I took my then 1 year old daughter (Kinsey) for her second

>set of immunizations. They gave her the shots (MMR) and gave me an

>information sheet afterwards, with a description of the diseases the shots

>were expected to prevent, as well as possible side effects to watch for. At

>the end of the information sheet was this line - " Very rarely, chronic

>arthritis may occur. "

>To say it was a heart stopping moment is a huge understatement. I had just

>had my second daughter injected with something that may or may not have

>caused my first daughter this difficult disease. I had done it in ignorance,

>and in blind trust in the medical institution and in physicians. I do not

>fault the doctors or the institutions, per se, but I have chosen from that

>moment on to educate myself about as much as I can be aware of that affects

>my family's health. I might still have gotten her innoculated. I don't know,

>I just wish I had educated myself enough to make a reasoned decision. I do

>know something in my heart freezes every time I read the phrase " a

>statistically small risk " !

>I am 42 years old, currently a " stay at home mom " - formerly a graphic

>designer who (in a not long ago life!) produced training videos, manuals and

>did photography for a large utility. I live in a small rural community, and

>am involved actively with my daughters' school in a volunteer capacity. I am

>also a member of the also (now) at .

>

>I am not sure what information you are looking for. I would like to be a

>part of your list to educate myself further on the variety of issues

>surrounding vaccinations. I could not say I am totally against vaccinations,

>but I do know that much needs to be done to educate the general public about

>the need for INFORMED consent to this program (innoculations) and to take a

>much more active responsibility in guiding one's own health care and

>decisions.

One of my questions is, if the doctors deny the link between the vaccines

and the diseases like arthritis, then WHY is there a warning printed on the

info sheet they provide? Where'd that little fact come from? And the links

between autism? There has seemingly been such an incredible rise in the

incidence of these diseases, and other " auto-immune " disorders in children

in the last few decades... other things could be contributory, like

environmental pollution - does anyone know where to access any studies on

these issues? I know statistics can be so easily manipulated but there must

be something somewhere that studies these correlations?

Lynn

[Guest guest]

Lynn,

I, too, have a daughter with JRA. She was diagnosed

pauci but is now poli...although she's doing wonderful

right now. We believe her JRA to be triggered by the

Hep B vaccine she got at 6 months.

There is a support group at

http://www.parentsplace.com/messageboards. The

children's arthritis board is in the left column.

You'll need to scroll down a bit. My username is

my2girls00. Just wanted to let you know.

Robin D

--- Lynn Young <llyoung@...> wrote:

> Hi:

> I have been " listening' to all of your posts for a

> while now without posting

> myself. I am wondering - where CAN a person find

> statistics on reactions to

> immunizations? Are there studies that show a link

> between autism and

> immunizations? And all the other problems you

> mention? I can't remember if I

> " posted " my intro or not, still getting used to a

> new computer. Here it is:

>

> >My name is Lynn Young . I live in Ontario,

> Canada. I have

> >two young daughters, one turning 7 this weekend,

> and the other 4 1/2. My

> >elder daughter, Mickaela, has juvenile rheumatoid

> arthritis (systemic onset).

> >The symptoms began when she was a little over two

> (cyclical high fevers,

> >lethargy, total loss of appetite). Despite repeated

> visits to our family

> >physician and a pediatrician, she was not dignosed

> with arthritis until the

> >following year, when her ankles and knees became

> swollen and she was totally

> >unable to walk any longer.

> >Around this time, I took my then 1 year old

> daughter (Kinsey) for her second

> >set of immunizations. They gave her the shots (MMR)

> and gave me an

> >information sheet afterwards, with a description of

> the diseases the shots

> >were expected to prevent, as well as possible side

> effects to watch for. At

> >the end of the information sheet was this line -

> " Very rarely, chronic

> >arthritis may occur. "

> >To say it was a heart stopping moment is a huge

> understatement. I had just

> >had my second daughter injected with something that

> may or may not have

> >caused my first daughter this difficult disease. I

> had done it in ignorance,

> >and in blind trust in the medical institution and

> in physicians. I do not

> >fault the doctors or the institutions, per se, but

> I have chosen from that

> >moment on to educate myself about as much as I can

> be aware of that affects

> >my family's health. I might still have gotten her

> innoculated. I don't know,

> >I just wish I had educated myself enough to make a

> reasoned decision. I do

> >know something in my heart freezes every time I

> read the phrase " a

> >statistically small risk " !

> >I am 42 years old, currently a " stay at home mom " -

> formerly a graphic

> >designer who (in a not long ago life!) produced

> training videos, manuals and

> >did photography for a large utility. I live in a

> small rural community, and

> >am involved actively with my daughters' school in a

> volunteer capacity. I am

> >also a member of the also (now) at

> .

> >

> >I am not sure what information you are looking for.

> I would like to be a

> >part of your list to educate myself further on the

> variety of issues

> >surrounding vaccinations. I could not say I am

> totally against vaccinations,

> >but I do know that much needs to be done to educate

> the general public about

> >the need for INFORMED consent to this program

> (innoculations) and to take a

> >much more active responsibility in guiding one's

> own health care and

> >decisions.

>

> One of my questions is, if the doctors deny the link

> between the vaccines

> and the diseases like arthritis, then WHY is there a

> warning printed on the

> info sheet they provide? Where'd that little fact

> come from? And the links

> between autism? There has seemingly been such an

> incredible rise in the

> incidence of these diseases, and other " auto-immune "

> disorders in children

> in the last few decades... other things could be

> contributory, like

> environmental pollution - does anyone know where to

> access any studies on

> these issues? I know statistics can be so easily

> manipulated but there must

> be something somewhere that studies these

> correlations?

>

> Lynn

>

>

__________________________________________________

[Guest guest]

At 12:19 PM 02/20/2001 -0500, you wrote:

>Hi:

>I have been " listening' to all of your posts for a while now without posting

>myself. I am wondering - where CAN a person find statistics on reactions to

>immunizations? Are there studies that show a link between autism and

>immunizations? And all the other problems you mention? I can't remember if I

> " posted " my intro or not, still getting used to a new computer. Here it is:

It was estimated by the former commissioner of the FDA, Kessler, that less

than 10% of vaccine reactions are reported.

So you will find no statistics. It doesn't serve the drug companies or

governments purposes.

YOu are part of 'post marketing surveillance' and they don't even pay

attention to that. Few studies and small numbers of children (and who

would put their child in a vaccine study). Yes, there is info on my webpage

http://www.nccn.net/~wwithin/mmr.htm

These are preliminary studies that are a huge red flag along with parent

reports and NO one will fund these studies. They only want to look at

genetics and autism - then there is no blame for drug cos and doctors and

gov't.

You can also read some of the VAERs reports at fedbuzz

http://www.fedbuzz.com/vaccine/vac.html

But remember this probably represents less than 10% of the reactions that

happen

>One of my questions is, if the doctors deny the link between the vaccines

>and the diseases like arthritis, then WHY is there a warning printed on the

>info sheet they provide?

The question of the ages. We all live in Twilight Zone now.

Where'd that little fact come from? And the links

>between autism? There has seemingly been such an incredible rise in the

>incidence of these diseases, and other " auto-immune " disorders in children

>in the last few decades... other things could be contributory, like

>environmental pollution - does anyone know where to access any studies on

>these issues? I know statistics can be so easily manipulated but there must

>be something somewhere that studies these correlations?

I tell you, when there is a hint of anything wrong in a vaccine study,

those people are thrown out of the study or said it is coincidental. They

list a few things it appears to make it good. But what we hear from

parents is 1000 times greater than anything on the package insert.

My website has a lot of info

and you can go to the medical journal/pub med sites and start searching

yourself

Its terrible

--------------------------------------------------------

Sheri Nakken, R.N., MA

Vaccination Information & Choice Network, Nevada City CA & UK

530-478-1242 Voicemail

http://www.nccn.net/~wwithin/vaccine.htm

" All that is necessary for the triumph of evil is that good men ( &

women) do nothing " ...Edmund Burke

ANY INFO OBTAINED HERE NOT TO BE CONSTRUED AS MEDICAL OR LEGAL ADVICE. THE

DECISION TO VACCINATE IS YOURS AND YOURS ALONE.

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