Re: What's up With Avonex?

[Guest guest]

Those, like my wife, who feel the oppostie, likewise please post. I think she wants to stop taking Avonex. It's her disease, and I think she should manage it as she feels she should.

I'd just like to hear what you good folk, "the experts, as it were" would advise her to do. Thanks, and God bless you all.

I did a lot of research on Avonex and Copaxone a few years ago. I opted for Copaxone, because I didn't want to mess with the interferon production in my body, by using the Avonex. Copaxone is just 4 amino acids and a common sugar called mannitol. Of course, they are in a specific protein chain that acts as a decoy to be attacked by our immune systems, instead of our myelin.

Withe the reports on the follow studies on Copaxone users, I'm glad I chose it. I don't know if you've read the 6-year reports, but it has shown to reduce progression 72%. I can send you a copy of the reports, if you'd like. Just write to me privately, as I've posted them here recently.

If you want my personal advice, I'd tell her to go off Avonex and onto Copaxone and the Best Bet Diet and B.B.D. supplements. Here are links to my site, the BBD support group site and Ashton Embry's Direct-MS site. (He is the person who created the BBD for his son, who has MS and is now symptom free.)

Links below,

Carol

MS Diet Recipes Supplements Philosophy by Carol MS-Diet - Home The Cause of Multiple Sclerosis - Home of the Registered Charity: DIRECT-MS

[Guest guest]

.. Those, like my wife, who feel the oppostie, likewise

> please post. I think she wants to stop taking Avonex. It's her

> disease, and I think she should manage it as she feels she should.

> I'd just like to hear what you good folk, " the experts, as it were "

> would advise her to do. Thanks, and God bless you all.

Like your wife I was dx'd about 3 years ago also. I started taking

Avonex in April of 99. This year has been especially bad and I can

feel myself sliding downhill. I too was wondering why they don't

take me off the Avonex and switch me to something else. I don't feel

it is helping me out either.

So far this year I have suffered 3 flare-ups and am currently in one

right now that started June 20th. I did the IV Steroid thing for the

first time for the flare-up I'm having now and they just caused me to

be worse than I was before. This MonSter is really starting to scare

me. They just changed my dx from R/R to Progressive.

I'm curious as to how many other people have had the same reaction

also. Good luck and God Bless and please post as to what your wife

decides to do.

Susie

[Guest guest]

! I stopped copaxone cold turkey because I was feeling

much worse, with terrible side effects.

I wish people wouldn't say things like that to people trying to decide what to do. If you had terrible side effects, you were a rarity! Don't go telling everyone things like that. I have have absolutely NO side effects from Copaxone, and at least 90% of people who have used it don't. There is no logical reason to have any side effects from it. It's the same as saying you had terrible side effects from a multi-vitamin pill, for God's sake.

Carol

[Guest guest]

How long were you on the best bet diet before you noticed improvements?

KC

I am happy for you.

also, what kind of rxs did you experience with Copaxone? Capozza RRT,CPT Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

I however

believe this group when you talk about diet, now that

is the key to REVERSAL and improvement. All these ABC

drugs offer none of that. So to the group: KEEP

CHATTING! It really gives me more hope and

inspiration than any doctor or ABC drug!!!

That's why I do the Best Bet Diet AND Copaxone.

Carol

[Guest guest]

YOU GO GIRL!!!!!

I also apprieciate the input from everyone. I am,

I guess one of the few on Avonex. I have been on it

since 98 and recently had a flare up. After a MRI it

showed no new lesions. My neuro confirmed it was, and

I am currently riding out the problems of it Lots of

tremors in the left hand. I am afraid to go off of

Avonex and am now doing more QUALITY (thats the key)

vitamins and herbal treatments. My neuro wants me to

stay on Avonex and is always doing blood tests for the

liver problems, so far so good. Yea, sometimes the

Avonex makes me ache and not feel so good but since 98

nothing has changed (other than this current episode)

so guess it's doing what it is suppose to? I however

believe this group when you talk about diet, now that

is the key to REVERSAL and improvement. All these ABC

drugs offer none of that. So to the group: KEEP

CHATTING! It really gives me more hope and

inspiration than any doctor or ABC drug!!!

--- Cah819@... wrote:

> In a message dated 8/1/01 9:21:19 AM Pacific

> Daylight Time,

> ceciliarich@... writes:

>

>

> > ! I stopped copaxone cold turkey because I was

> feeling

> > much worse, with terrible side effects.

>

> I wish people wouldn't say things like that to

> people trying to decide what

> to do. If you had terrible side effects, you were a

> rarity! Don't go

> telling everyone things like that. I have have

> absolutely NO side effects

> from Copaxone, and at least 90% of people who have

> used it don't. There is

> no logical reason to have any side effects from it.

> It's the same as saying

> you had terrible side effects from a multi-vitamin

> pill, for God's sake.

> Carol

>

__________________________________________________

[Guest guest]

> Well, I suppose if you OD you certainly could.

Regardless, injecting something into one's veins is

not natural, and I don't believe it's the way God

intended.

~~~~~If you injected it into your veins, that was your first mistake. It's subcutaneous - it just goes under the skin, not into your veins. Are you sure you were on Copaxone?

We MSer's for the most part don't "need"

ABC's; we need to get closer to the natural state God

intended and to do that we need to look to nature for

the answer. I am glad, Carol, that you and others are

taking the dietary approach and that you acknowledge

its restorative powers. I wish you the very best. Just

please don't be so critical of other's experiences. It

just stresses everybody out in the group, and the last

thing we need is stress...

~~~~~~~I'm not critical of your experiences, I'm critical of your saying that it has terrible side effects, in a generic way. You should have said it had terrible side effects for you. The way you said it, for someone who didn't know anything about it, they would think it was known to have terrible side effects for everyone.

Carol

Peace,

Garnet

[Guest guest]

--- Cah819@... wrote:

> I wish people wouldn't say things like that to

> people trying to decide what

> to do. If you had terrible side effects, you were a

> rarity! Don't go

> telling everyone things like that.

But if it's the truth, we want to hear it. Isn't this

a democracy? Doesn't every voice count?

> I have have

> absolutely NO side effects

> from Copaxone, and at least 90% of people who have

> used it don't.

Great for you, but 10% still seems an awful lot...

> There is

> no logical reason to have any side effects from it.

Excuse me but is MS logical? Why on earth would one

identical twin raised in the same environment with the

same diet get MS and the other not? We are dealing

with a very complex biological system here and I think

" logical " is not the best adjective to describe it...

> It's the same as saying

> you had terrible side effects from a multi-vitamin

> pill, for God's sake.

> Carol

>

Well, I suppose if you OD you certainly could.

Regardless, injecting something into one's veins is

not natural, and I don't believe it's the way God

intended. We MSer's for the most part don't " need "

ABC's; we need to get closer to the natural state God

intended and to do that we need to look to nature for

the answer. I am glad, Carol, that you and others are

taking the dietary approach and that you acknowledge

its restorative powers. I wish you the very best. Just

please don't be so critical of other's experiences. It

just stresses everybody out in the group, and the last

thing we need is stress...

Peace,

Garnet

__________________________________________________

[Guest guest]

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[Guest guest]

> ~~~~~If you injected it into your veins, that was

> your first mistake. It's

> subcutaneous - it just goes under the skin, not into

> your veins. Are you

> sure you were on Copaxone?

I stand corrected!! But it wasn't me who had the bad

experience; I've never tried ABC's. It was another

poster, and I hope we are all mature enough to

understand that one person's experience does not mean

that everyone will react the same way...we are all

unique...

And, for some of us, the needle remains an

uncomfortable subject, whether it is IV or subQ...

Regards,

Garnet

__________________________________________________

[Guest guest]

and I hope we are all mature enough to

understand that one person's experience does not mean

that everyone will react the same way...we are all

unique...

Well, that was my whole point! If she'd said it was her experience, it would have been ok, but she came out with it, in such a way that made it sound like Copaxone has terrible side effects, period. This is getting a little silly, but I had hoped everyone would be able to see the not so subtle difference there, and no simply become contentious. Anyone trying to learn about Copaxone, could very well come away from what she said, thinking they didn't want to try it, because it has terrible side effects. The truth is, it doesn't. I don't know what the percentages are. They were probably more like 97%, because my insert doesn't show one side effect with more than 2% of the people having it. That is as low, or lower than anything ingested in any way! That 2 % could be attributable to a lot of things other than the Copaxone. A certain number of people are going to be coming down with a cold, a headache or whatever. But, if they have any symptom of any kind, the drug company has to list it, as a possible drug side effect. In other words, there really have been no side effects attributable to Copaxone alone.

Carol