Re: new EN member/msg for Ellington

[Guest guest]

Hi ,

Welcome to our EN Group. I'm , the founder and moderator of the

Group. I've had chronic EN for 40 yrs. now--not a typo. I luckily have

a mild case, but still it has interfered with activity. I hope you

don't mind but I did a search to learn more about you and the sport of

skateboarding:

http://www.vbs.tv/video.php?id=1046149268

I'm a fan of yours now ;-) I see you are a straight shooter, and so

am I, so I'll give you as much of the unvarnished truth about EN as I can.

I was never biopsied, but a dr. recognized EN after I'd had it on and

off for 5 yrs. With new cases, without history, you might consider

getting a biopsy of an active lump just to be sure that you do have

EN. This is because it can look like other illnesses, especially to

the dr. who is not familiar with EN.

EN has many triggers, but despite looking about half of our group has

not found out why we get EN. Most of our blood work comes back normal.

Here is the list of known EN triggers:

http://www.geocities.com/erythema_nodosum/en_triggers/index.htm

As mentioned EN has not been researched much. In the past 100 years

little research as been done to discover effective treatments or

cures. If you can figure out your trigger--stress is not considered a

trigger, but can aggravate an existing trigger--then you must address

that. In other words treat the illness [eg: sarcoidosis, inflammatory

bowel disease, RA etc.If it's due to an infection, treat it, and if

due to a reaction to medication, stop the medicine. Discovering the

trigger is often the hard part, and as I said, sometimes even after

searching nothing is found.

You asked about SSKI. I never tried it.It is not specifically for EN,

but then we have no drugs that are. It's not a cure, but sometimes it

can shorten the duration of an EN episode. If your thyroid is healthy,

SSKI is probably worth a try. You'll know in a short time if it helps

or if you have an allergic reaction to the SSKI--matter of a week or

two at most. Don't take it for long periods of time as it can destroy

your thyroid. Simple blood tests can test for that.

The basic EN tests you need to take:

http://www.aafp.org/afp/20070301/695.html

listed in table 3.

I live in Southern CA. too--I'm in Orange County. I don't know of any

doctor to recommend. The specialty of the dr. will depend on if you

ever determine the trigger.

Tips: Stay off your feet as much as you can. Elevate the legs above

the heart level. It may help to use compression bandages if you need

to be on your feet. Motrin can help with malaise,and fever but not

much with pain, all from my personal experience.

I'm so sorry you are dealing with EN. We think of a young female as

the typical EN patient, but as you now know, the weird lumps with the

funny name can affect anyone. It's especially hard when you are a

professional athlete such as yourself.

I wish I could be of more help. keep in touch and let us know how it's

going. ok?

Love,

idiopathic EN since 1968

>

> hello everybody.

> I have been recently diagnosed with EN but have had no skin tests to

> verify, however im pretty positive ive got it.

> Some days my symptoms wont allow me to walk because of the pain in my

> knees, and being a professional skateboarder im not able to do my job

> very well!

> the lesions accompanied by the fever and body aches are the worst part

> i think though.

> I just have a couple questions for y'all,

> Has anyone tried potassium iodide for the lesions?

> Does anyone have a good doctor recommendation for los angeles?

> thank you

>

>