Re: KI use

[Guest guest]

Hi,

I'm new the group, but have had EN for seven years. Just last year my

dermatologist recommended taking KI (potassium iodide) and also told me that it

can effect the thyroid. Interestingly, you can't get it by prescription, but

rather online. There are many sites, I used

nukepills.com (I know, charming). Of course, these are the pills that we are

supposed to give our children in the event of nuclear accident. I think it

prevents absorption of radiation. My doctor could not tell me why it helps with

EN lesions, but in my experience it definitely did. It cut the life cycle down

and reduced the pain. I did take quite a bit 300 - 400mg daily for about three

weeks. It is relatively inexpensive. I did not have any side effects and

didn't mind the salty taste. I did have my thyroid checked and did not have any

problems. It is at risk, but I think that's when you have to take KI

chronically and I only suffer EN once a year for about 8 - 12 weeks - at least

for now. I got the advice to take KI after I took part in a Harvard " Grand

Rounds " study at Mass General Hospital (these people are supposed to be the best

of the best). The program allows residents and their supporting doctors and the

heads of the department to study patients with rare skin conditions. They then

have a lecture and discussion to try and diagnose and treat the condition.

Along with KI, I was also told to wear support hose and could opt for injections

of IL TAC directly into the lesions. I think that might be a steroid. I don't

believe in that as I'd rather stay " clean " from heavy drugs. I don't know if KI

has any other side effects. Apparently it has been used for hundreds of years

and it's one of those mystery cures. Hope this helps. Good luck with your

daughter. I would rather have this myself than have my daughter suffer from it;

so I really can empathize. Nikki

>

> Hi,

>

> My 17 year old daughter has had EN for one year now after being on

> acne medication. Her biopsy showed cutaenous PAN. She has been seen by

> 5 doctors in the U.S. and all said she developed this rare auto immune

> disease from the acne meds. The EN is a symptom of the disease. She

> takes colchicine daily. She is not coping too well with this since she

> is at University and people constantly inquire about her legs. This

> week she emailed her doctor and begged to try something to help the

> lesions disappear. Her doctor said she can try Potassium iodide fo 10

> days along with her current meds. Has anyone of you taken Potassium

> iodide for your EN ? if so, did it help ? Please let me know. I live

> in the Caribbean and will be travelling o spend 2 weeks with her from

> Tuesday. She says she is not depressed but she is very stressed about

> this and I need to spend some time with her. It is really sad as you

> all know and being a teenager I don't think she has accepted it even

> after one year. She now has ulcers in her mouth that came on from

> stress. I wonder if I should not have sent her away to University at

> such a young age especially with her having EN. Please someone let me

> know if you used Potassium iodide.

>

>

> Thanks a million,

>

> a Matouk.

>