Re: I'm new to this...(Re Ronnie--Enbrel)...

[Guest guest]

Hi Ronnie, Thanks for the post. I can't use enbrel since I had a bad

side effect from Remicade and the neurologist says I can't use any

more " anti-TNF " medicines. Remicade was sort of a miracle for me

at first. After my first infusion all my swellings went w/in 48 hrs!!

But then after a few months it seemed to not work as well, the

Remicade sales person told my doctor that they had new guidelines and

my dosage could be safely increased. Well, guess what? It seems to

have been the increased dosage that gave me the problem! (Some kind

of nerve damage that resulted in neuropathy...like I needed ANOTHER

problem---isn't psoriasis and arthrits enough??? -)

I heard there is a new med supposedly going to be approved mid-2005

here in the USA which is NOT an " anti-TNF " , so I've got my hopes

pinned on that since this diet is helping me look better and lose

weight but isn't helping the old joints or scratchy P.

Take care,

Chris(tine)

>

> Have you tried Enbrel? It appears to be especially effective when

you have

> only had the disease a few years. I had a very rapid onset also.

Enbrel

> was a miracle for me.

[Guest guest]

I would consider seeing another RD. Is the neuropathy do to a

mylating problem? I know that very rarely TNF drugs can cause MS type

symptoms that resolve if the drug is stopped. To my knowledge having a

problem with one TNF drug does not necessarily precluded the use of another.

I have to take klonopin when I am on a full regimen of Enbrel

because it is slightly stimulating for me. Like having to much coffee and

the tenseness causes some odd neurological quirks occasionally like muscle

twitches. I took the klonopin and road out the minor side effects in the

beginning. I haven't noticed any side effects in quite a while. I think

all of this may have been because I was so responsive to the drug. I was

within three months of losing the use of my hands and nothing was else was

working. Enbrel completely arrested the disease. I had relief from the

first injection. I was even in remission and stopped Enbrel completely for

a year and a half. Most of the time, like now, I only take one 25mg

injection every two weeks and I take the klonopin every other day. I would

consider asking an RD if you might trying a reduced dose of Enbrel at first.

Personally, I couldn't tolerate MTX but in most cases combining Enbrel with

MTX seems to be more effective with aggressive disease.

Everybody's immune system is different and sometimes it is a

question if finding what combination works. In my case I think a bad flue

virus drove my immune system into overdrive that expressed as PA and I have

had to knock it down with Enbrel until it normalizes over time hopefully.

Unfortunately I have some joint damage from before I went on Enbrel. I

fully believe that the joint damage could have been avoided if I would have

been given Enbrel first.

[ ] Re: I'm new to this...(Re Ronnie--Enbrel)...

Hi Ronnie, Thanks for the post. I can't use enbrel since I had a bad

side effect from Remicade and the neurologist says I can't use any

more " anti-TNF " medicines. Remicade was sort of a miracle for me

at first. After my first infusion all my swellings went w/in 48 hrs!!

But then after a few months it seemed to not work as well, the

Remicade sales person told my doctor that they had new guidelines and

my dosage could be safely increased. Well, guess what? It seems to

have been the increased dosage that gave me the problem! (Some kind

of nerve damage that resulted in neuropathy...like I needed ANOTHER

problem---isn't psoriasis and arthrits enough??? -)

I heard there is a new med supposedly going to be approved mid-2005

here in the USA which is NOT an " anti-TNF " , so I've got my hopes

pinned on that since this diet is helping me look better and lose

weight but isn't helping the old joints or scratchy P.

Take care,

Chris(tine)

[Guest guest]

Hi Ronnie,

They don't know for sure if it is a myelating problem, my neurologist

referred me to an expert at Stanford and even he didn't know for sure

but he said the circumstantial evidence pointed to it being Remicade

and they both highly recommended I avoid any anti-TNF in case it is a

myelating problem. Meanwhile I still have the nerve problem BUT in

the last few months it has finally gotten a little better. YAY! It

expresses itself as tingling which ranges all the way up to painful

electric feelings on the face/head/ and lower arms/legs. I also often

get numbnes around my lower face. I never had ANY problems like this

before in my life until we increased that dosage on the Remicade.

I am so glad that the Enbrel is helping you! That is great.

I'm sure some new drug will come along that will be my miracle!!! i

can't wait!

-Chris

>

> I would consider seeing another RD. Is the neuropathy do to a

> mylating problem? I know that very rarely TNF drugs can cause MS

type

> symptoms that resolve if the drug is stopped. To my knowledge

having a

> problem with one TNF drug does not necessarily precluded the use of

another.

> I have to take klonopin when I am on a full regimen of Enbrel

> because it is slightly stimulating for me. Like having to much

coffee and

> the tenseness causes some odd neurological quirks occasionally like

muscle

> twitches. I took the klonopin and road out the minor side effects

in the

> beginning. I haven't noticed any side effects in quite a while. I

think

> all of this may have been because I was so responsive to the drug.

I was

> within three months of losing the use of my hands and nothing was

else was

> working. Enbrel completely arrested the disease. I had relief

from the

> first injection. I was even in remission and stopped Enbrel

completely for

> a year and a half. Most of the time, like now, I only take one 25mg

> injection every two weeks and I take the klonopin every other day.

I would

> consider asking an RD if you might trying a reduced dose of Enbrel

at first.

> Personally, I couldn't tolerate MTX but in most cases combining

Enbrel with

> MTX seems to be more effective with aggressive disease.

> Everybody's immune system is different and sometimes it is a

> question if finding what combination works. In my case I think a

bad flue

> virus drove my immune system into overdrive that expressed as PA

and I have

> had to knock it down with Enbrel until it normalizes over time

hopefully.

> Unfortunately I have some joint damage from before I went on

Enbrel. I

> fully believe that the joint damage could have been avoided if I

would have

> been given Enbrel first.

[Guest guest]

The Remicade experience always seemed awfully intrusive to me. Anything IV

administered and lasts for months has got to be potentially more reactive it

would seem. I had similar side effects to Enbrel the first year. I even

saw a neurologist and had a MRI to look for plaques. They didn't find any.

I did stop Enbrel shortly after because of the remission and the symptoms

went away. I haven't had any really bothersome side effects since I started

Enbrel again at a reduced dose six months ago. I'm pretty high strung so

anything stimulating affects my tenseness and anxiety level. In my case I

think that was what was responsible for the tingling, numbness, twitching,

etc. Those symptoms were a small price to pay for the benefit I received.

Who knows how it will affect me in the long run but I didn't have a life as

it was until I went on Enbrel so, for me, it justifies the risk. Enbrel is

out of your system in a week. You can stop it immediately. It's not a

three month ride like Remicade. I'm still not sure I would write off all

TNF drugs in your case after the problem dissipates. Good luck in what

ever treatment you choose.

[ ] Re: I'm new to this...(Re Ronnie--Enbrel)...

Hi Ronnie,

They don't know for sure if it is a myelating problem, my neurologist

referred me to an expert at Stanford and even he didn't know for sure

but he said the circumstantial evidence pointed to it being Remicade

and they both highly recommended I avoid any anti-TNF in case it is a

myelating problem. Meanwhile I still have the nerve problem BUT in

the last few months it has finally gotten a little better. YAY! It

expresses itself as tingling which ranges all the way up to painful

electric feelings on the face/head/ and lower arms/legs. I also often

get numbnes around my lower face. I never had ANY problems like this

before in my life until we increased that dosage on the Remicade.

I am so glad that the Enbrel is helping you! That is great.

I'm sure some new drug will come along that will be my miracle!!! i

can't wait!

-Chris