Triggers for EN and Drug Interactions/msg for Pam

[Guest guest]

Hi Pam,

I'm sorry to hear that you have been suffering for so long and that

s Hopkins could not help you.

Even the best research hospitals only have access to existing

research. We are still living in the " Dark Ages " of EN research.

Connective tissue Disease is associated with EN:

http://sciencelinks.jp/j-east/article/200319/000020031903A0229072.php

How are you treating it? I would guess that once it was brought under

good control, the EN should go into remission.

Which connective tissue disease were you dx with? Lupus?

Love,

idio. EN '68

[Guest guest]

Hi ,

No, not lupus. That is one thing the s Hopkins Dr.

ruled out. She is a lupus specialist. Right now they

are calling it undifferentiated connective tissue

disease. I have been on so many different things now

it is so frustrating. The very first thing they wanted

me on was prednisone, which I truly hated starting. On

that for over a year now and insisted I get off. But

they told me I would have to gradually stop it. Was on

methotrexate when the EN started. Tried SSKI and also

methotrexate by injection, was on minocycline and also

colcochine for a short time and right now on indocine.

I repeatedly would have bad reactions to just about

everything tried so far. I also have very bad

migraines so seems like most medicines cause me to

battle that also. I will be seeing an endocrinologist

later this month for my thyroid checkup and she comes

highly recommended so I'm anxious to find out if she

has any input on all of this.

Pretty much the only things I learn of this is what I

find online. The Dr's don't seem to tell me anything.

I had no idea that this is something you can have for

so long. I'm so sorry you have been battling this for

as long as you have.

Hoping for relief to all of us,

Pam

--- Strecker

wrote:

> Hi Pam,

> I'm sorry to hear that you have been suffering for

> so long and that

> s Hopkins could not help you.

>

> Even the best research hospitals only have access to

> existing

> research. We are still living in the " Dark Ages " of

> EN research.

>

> Connective tissue Disease is associated with EN:

>

http://sciencelinks.jp/j-east/article/200319/000020031903A0229072.php

>

> How are you treating it? I would guess that once it

> was brought under

> good control, the EN should go into remission.

>

> Which connective tissue disease were you dx with?

> Lupus?

> Love,

>

> idio. EN '68

>

>

>

>

>

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[Guest guest]

Dear Pam,When I say I have had EN for the past 39 yrs. I don't mean to imply that I have had it constantly. I go into spontaneous remission, and have never taken any meds for EN. I only have it in my lower left leg and my flares are rather short lived. It is my guess that the reason I continue to have flare ups is due to the damaged tissue which must have been insulted about 100 separate times by now. I am presently in remission, but I know if I am on my feet too long I will flare again--at least that is my experience. This is why I feel that it is so important to get into remission as soon as possible, for once the damage has been done to the tissue, by EN [or more assuredly by PG], it may not repair itself to the way it was originally. Let's face it, no doctor will do a

biopsy after one is in remission, so we don't know how damaged the tissue is. In my case my left leg has lost nearly all fat in the area of EN activity. The older I get the more mismatched my lower legs appear. I am, however grateful that I can walk pain free and unassisted. I always say my EN leg is my "good leg" and the other leg is "even better". Good luck with your endocrinologist! Let us know what she says, ok?Love,idio. EN '68 You can help Erythema Nodosum Research. Just go to www.goodsearch.com and under the I'm Supporting section enter Erythema Nodosum Research

Fund. Every time you use Goodsearch to search, a penny will be donated to EN Research. So sign up today, and be sure to tell your friends, family and co-workers. Let's find a cure for Erythema Nodosum!

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