Neletraxson? : Has anyone tried it... - Hailey-Hailey Dis...

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Neletraxson?

limoribat profile image
15 Replies

Has anyone tried it?

Low dose?

I hv been heard of it...

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limoribat profile image
limoribat
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15 Replies
UASC profile image
UASC

I did and it did not work, neither did cyclosporin. I have a flare right now that is not responding to treatment and has been infected 4 times.

limoribat profile image
limoribat in reply to UASC

Wow. So sorry to hear that.

So what the doctors do with u?

UASC profile image
UASC in reply to limoribat

Well, they pretty much tried everything(since August) they said that they are going to schedule me for a CO2 laser removal of the affected area. Ugggh I am bleeding cracked it hurts so much.

limoribat profile image
limoribat in reply to UASC

I dont know if u hv it there, or if yr doctors knows it, but here in israel i gets a solotion of castellani or by another name carbon fuxin. Its a red/ purple soloution that cleans the area dry and help not to get infection. Paints yr skin and cloth with red colour. For me it was a small price to pay, helped me few times.

Wish u all the best!

UASC profile image
UASC in reply to limoribat

Thank you very much I will tell my dermatologist on Thursday when I go on.

UASC profile image
UASC in reply to UASC

I have had this flare up since August. It is really miserable and covers both my arm pits.

limoribat profile image
limoribat in reply to UASC

I really understand u, more then u know.

I was suffering great deal for a year and a hulf without 1 day remission.

UASC profile image
UASC in reply to limoribat

It is so horrible when the flare ups just won't heal. I have had some that lasted over a year too. For some reason for me my flares that take the longest to heal are under my armpits and breast/ribs. Have you ever had yours lasered off? Or dermabrasion done? I am starting to become desperate for this to be gone.

limoribat profile image
limoribat in reply to UASC

Yes, i did 33 fotodinamic therapies.everytime almost 3 hours.

Helped me for a while. Than came back. I know the frustration. It hurts. And smelly. I couldnt function. In the past year and a hulf i almos didnt raise my own kids. Couldnt work of course. Had the same areas u wrote and my back, neck and more.

Hv u tried steroides? Like prednisone?

Used it. And a lot of ointments. "Gained" 20 kiloes in a few years.

Another thing u might try is water with salt, as more as u can do. U mix salt with warm water. Than put in with cotton on the areas. It might dry it a bit.

UASC profile image
UASC in reply to limoribat

I've tried steroids. My derm put me on prednisone in October. It didn't work. I know how you feel about gaining weight I gained 20lbs since this flare up. I haven't been able to work either I am a cardiovascular ICU R.N, but can not work because of my Hailey Hailey. I was at my dermatologist yesterday and she said that if my labs and cultures came back positive again I will be put on IV antibiotics and given a home health nurse. I will try the salt water thank you so much for the advice ☺. I have been using witch hazel on my arm pits and it does soothe it. Do I dab the areas with salt water or let the cotton sit on it for a little while? I will try it tonight. Thank you.

UASC profile image
UASC in reply to UASC

I am currently on Cyclosporin for this flare up.

limoribat profile image
limoribat in reply to UASC

Ask yr derm about carbon fucxin. It might get u a bit realeaf.

About the salt, just clean the area a bit. Dont let the area b wet for a lot of time. U know, i alwayz being told that i m a difficult case since my hailey hailey is hard.. u seems to b a match to me.... anyway, if u derm will aprove yr using the fucxin solotion let me know if u cant get it, will send it to u.

UASC profile image
UASC in reply to limoribat

Thank you so much I really appreciate that. I will ask my dermatologist. She is going to call me with the results to my new set of cultures she did on Thursday. This is so kind of you thank you.

UASC profile image
UASC in reply to limoribat

The salt water really helped thank you so much so grateful for your advice. I will be doing salt water everyday until it heals

limoribat profile image
limoribat in reply to UASC

So glad to hear that!!!!!!