Re: Re: Digest Number 2608, Use of Enbrel

[Guest guest]

Ethel,

I think that this group should be more than a cheering section for the AP.

We should be open to discuss any drug related to RA and to other diseases

with related symptoms. I would not want to censor out any drug, even Enbrel.

While we're on the subject of Enbrel, the following is from the web page

http://www.adrugrecall.com/enbrel/arthritis.html

" Enbrel arthritis drug has been on the U.S. market since 1998. Since then,

well over 80,000 patients have used Enbrel arthritis drug. Linked to

serious and deadly adverse effects, Enbrel arthritis drug made labeling

changes in 1999 after reports of six deaths after Enbrel arthritis patients

developed infections. The infections suffered by Enbrel arthritis users

have included sepsis.

Possible symptoms indicating Enbrel arthritis infections are present can

include fever, bruising, bleeding, or paleness. Especially patients more

susceptible to infections, using Enbrel arthritis drug will increase the

chances of developing a life-threatening infection. Reports of serious

nervous system disorders in Enbrel arthritis patients have also been made.

The Enbrel arthritis adverse effects included multiple sclerosis, seizures,

and inflammation of the nerves of the eyes. "

Sincerely, Harald

At 11:38 AM 9/14/2004 -0400, you wrote:

>Ron, there are many, many other places on the net where you can discuss

>Enbrel - a toxic drug designed to deal with symptoms. This list isn't one

>of them. This list is strictly for information and support to people

>interested in the much safer antibiotic protocol as stated on

>www.rheumatic.org that deals with cause and not symptoms. Dr. Brown found

>no need to put people on toxic drugs like Enbrel. Dr. Mercola is now

>putting these diseases in remission with alternative means - diet,

>detoxing, etc.

>

>You state the antibiotic protocol has failed you so what is your purpose

>in trying to stay on this list? You weren't on the antibiotic protocol

>long enough to say it failed you. I've known of people on the AP up to 5

>years before they even turned the corner - let alone reach

>remission. Then too, I wonder just how much effort you put into getting well.

>

>Your posts were moderated for a long time, and when you continually

>refused to adhere to the rules governing this list, you were removed from

>the list. Now you have subscribed at under " defective " to get past

>the moderators rather than using your own name.

>

>You've made your choice of therapy and you need to join a list that

>supports that choice.

>

>Ethel

[Guest guest]

<< I think that this group should be more than a cheering section for the

AP. >>

I agree that we should be discussing ALL avenues of treatment, unless the

board becomes overrun with psychics, snake oil salesmen and biologics.

All of us want one thing... remission.

I personally would like to have as much info available to me as reasonably

possible. Some obvious thing aren't necessary such as the sun guy and others

of his irk. But I have to admit I need a good laugh once in a while and

these weirdos are really fun to read at times. I would venture to guess that

if someone with a rheumy disease makes it here that they are obviously

seeking alternatives to the tox docs but we shouldn't try to shut them up

unless they become annoying by posting in an unrelenting fashion. I'd like

to think that I am part of a " thinking " group of people who are open to new

info and are capable of seeing the facts through the cr*p.

JMHO

Jeff

[Guest guest]

Harald,

You wrote:

> I think that this group should be more than a cheering section for the AP.

> We should be open to discuss any drug related to RA and to other diseases

> with related symptoms. I would not want to censor out any drug, even

> Enbrel.

It's just the " House Rules " . You want to play poker, you don't go to a

church. You want to sing hymns, you don't go to a strip joint. Ethel &

setup the House and they make the House Rules. If we need something

else, we go someplace else. There are lots of Houses out there with info on

rheumatic diseases.

Geoff

soli Deo gloria

[Guest guest]

Harald,

> Do we need to set up and agree to house rules to remove certain types of

> treatment from discussion?

> [snip]

> I think that " low dosage of antibiotics for treatment of auto-immune

> diseases " is too narrow a topic to provide a full picture.

I don't think so, nor do " we " have standing to do any such thing. To me it

certainly does not seem appropriate. What I'm saying is that this " is "

Ethel & Chris' house and as such they make the rules, versus " us " . That's

their right, their privilege, and their duty, not ours. We are only their

guests. Yes, the guests " make " the party, but that does not negate the

rights and responsibilities of the host.

If Ethel & feel they want to " open the doors broader " that's certainly

their choice, but it seems they defined a narrow opening very much on

purpose and have pretty much held to that, albeit in a very liberal fashion

which has allowed much discussion of other related matters, including

Enbrel, non Rx remedies, et al.

BTW, are you still using bromelain and if so, how has it worked out for you?

Geoff