Would you consider a treatment good if .......................

[Guest guest]

Dear Group,

I'm getting lots of rest and with it comes time to think.

There are only a few prescription treatments that are used for EN. The

most prescribed is prednisone, and then we have an even older drug

called potassium iodide [sSKI]. Both were mentioned by members today.

Neither drug was actually designed for EN, so they are what you'd call

" off label " .

Before those drugs were used for EN the basic treatment was non

prescription: Weeks of Bedrest and leg elevation to allow the body to

heal, and NSAID's like aspirin and later Motrin or ibuprofen for

muscular aches and pain.

Here are the side effects of prednisone:

http://vasculitis.med.jhu.edu/treatments/prednisone.html

and here are the side effects of potassium iodide:

http://www.webmd.com/drugs/drug-11101-SSKI+Oral.aspx?drugid=11101 & drugname=SSKI+\

Oral

Often members tell us the nodes return even worse after treatment is

stopped, at least with prednisone. This is because it merely masks the

symptoms of EN. It does nothing to address the cause or trigger.

So it is obvious to me that EN sufferers need better and less toxic

treatments. Should you trade your nodes for diabetes, osteoporosis,

weight gain, etc.? It's not like I have any better treatments to

offer. All I can say is bed-rest and leg elevation along with

compression stockings help me. If you think we need to find better

treatments, I suggest research directed at EN specifically. Debbie and

I keep telling members the obvious. I am confident that when enough of

our members are sick and tired of being sick and tired they will join

us in making donations to our EN Research Fund. Other wise it's just

more of the same few drugs that leave so much to be desired.

Love,

idio. EN '68