Re: Just got back from the New Dermy

[Guest guest]

Dear Sandy,

I'm sorry your new dermy dr. wasn't more helpful. But it doesn't

really surprise me. Until we get some decent EN research the typical

reaction from most dr's is the one you got. :-(

If a celebrity doesn't have EN, maybe one of us knows or is related to

a celebrity? At my party last Sun. I was asking if anyone knew anyone

who was rich/famous. No one did.

So if anyone knows anyone who is in the public eye provide them an

opportunity to help you. Ask them to help spread the word. We are

hurting and we need help.

I used to do sales work. I was excellent if I say so myself. I assumed

the sale. I never asked " Would like to buy? " I asked " how many? "

That's what it takes. If they turn you down, so what! I was never

afraid to ask, and neither should you! Remember, you are asking not

only for yourself but for all of us and our families as well. :-)

Love,

PS: That's a typo on the cost of Enebrel cost, right? $2,000.mo?

[Guest guest]

Doesn't that just suck?! WHAT IS WRONG WITH THESE DOCTORS?!? It's

very close to a real crime, don't y'think? Maybe we should protest

and NOT pay for office visits that give us nothing for answers or

help!! Wouldn't that be a kick in the pants! I'm so sorry, Sandy,

we've all been there, but it still really sucks every time! Try to

have a good night!

M

>

> Just a note about my experience. Interesting...Or some may say -

LAME

>

> I went to have them look at my Psoriasis and the left-over blue

mark

> from my EN outbreak in September. More topical steroids for the

> Psoriasis (possibly Enebrel-if I can affort $2000/per month HAA,

and

> let me tell you about the EN.

>

> For the EN, the Dr. said...yeah, not really much we can do. If the

> NSAID that I am on for the arthritis doesn't help, we could do the

> prednisone. I just kind of laughed...just seems funny to me

> today...just like throwing your hands up in the air and saying " Oh

> well! "

>

> Sandy

[Guest guest]

Sandy,

Gotta say, I know how you feel; Doc's have complete dis-regard for us with

EN (In ALL my personal expierences and in others' I know too). $2000 is

absolutely rediculous! However, Pred may still be an option for you (if

you're interested). There is so little reasearch done on EN, Doc's have no

clue what they're dealing with. I believe that EN is down-played and

completely mis-understood (by any Doc's I have encountered).

>

>Reply-To: erythema_nodosum_Group

>To: erythema_nodosum_Group

>Subject: Just got back from the New Dermy

>Date: Wed, 22 Dec 2004 21:41:54 -0000

>

>

>Just a note about my experience. Interesting...Or some may say - LAME

>

>I went to have them look at my Psoriasis and the left-over blue mark

>from my EN outbreak in September. More topical steroids for the

>Psoriasis (possibly Enebrel-if I can affort $2000/per month HAA, and

>let me tell you about the EN.

>

>For the EN, the Dr. said...yeah, not really much we can do. If the

>NSAID that I am on for the arthritis doesn't help, we could do the

>prednisone. I just kind of laughed...just seems funny to me

>today...just like throwing your hands up in the air and saying " Oh

>well! "

>

>Sandy

>

>

>

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[Guest guest]

No typo on the enebrel...about $2000/month. Injectable 2-3

times/week.

Yeah, I knew that there was no 'cure for en' and I know there is no

long term 'cure' for psoriasis...but it was just how flippanly lame

the whole conversation went. I am SURE some of it was my fault,

cause I asked if anything new (topical) has come out for psoraisis in

the last 10 years...I said I had tried everything from age 8-30 and

stopped with Dr. prescribed 7 yrs ago... I am not on board for the

immunosuppressants - however they make work quite well.

Sandy

[Guest guest]

Thanks M...I did walk out with $97 in prescription topical steroids

(that was the COPAY!!)

I think we do need to find our celebrity