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i have a hailey hailey disease . please help me

azimideveloper profile image
8 Replies

Hello

I have hhd disease and I have this complication in the groin and testicles area and I really suffer from severe pain and pain, and I have tried treatment, but it has often been useless, and I am ready to even have a laboratory sample so I can help with the discovery of treatment. . Is there a new drug for this disease?

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azimideveloper profile image
azimideveloper
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8 Replies
limoribat profile image
limoribat

Hi.

First of all, sorry for you, suffer like this. It seems awfel to live with this.

I dont know what u tried till now.

I will write here what i know .

Steroids, pills and ointements, antibiotitic, photo dinamic treatments, castellani soloution, botox, nelatrexon.

I tried most of i wrote down. I m about to try botox and nelatrexon.

Plz write me if u dont know something.

Hang on!

azimideveloper profile image
azimideveloper in reply to limoribat

Hello, I'm grateful to you for keeping track of the issue and you are paying attention. Unfortunately, he did not agree with the treatment proposed by the doctor, and the doctor stated that this drug should be used as the last resort, while the risk of cancer with this drug is too high for oral tacrolimus. Actually I have ointment fuscidic acid, and prescribed perednizon oral tablets 50 mg for a further 3 weeks. What is your opinion about this drug?tanx for all

azimideveloper profile image
azimideveloper in reply to limoribat

I'm trying to get out of the way. Now, about 10 years old, I live with him and I got married and I am a 7 year old boy and I even play football and no one knows my condition but really do not deal with this disease and I only think. Sometimes I'm embarrassed. Use drugs and wound dressing and explain the topic to others. I wish there was a cure, I really would not enjoy life

limoribat profile image
limoribat in reply to azimideveloper

Well... i know exactly how it feels. I hv 3 children of my own and i bearly handle it. My parents help me.

I did use prednisone. Helped me for a short while.

Hv u tried water with salt? It cleans and dries a bit the area.

Suzanneactavo profile image
Suzanneactavo

I also have in the same area and under my breast was at the hospital on Thursday for my 4 month appointment they up my acitretin to see if that will help and have put me on antibiotics which they have put on repeat prescription as they said it will keep getting infected and as soon as I feel it flaring up to take them right away to catch the infection before it spreads will keep you informed on my progress

azimideveloper profile image
azimideveloper in reply to Suzanneactavo

hello dear

whrer are u from?

i am in iran, and hospital and doctors have not a good attention for me.While they do not do a lot of research on corticosteroids, and most of them do not prescribe cortisone, they do not understand me, even if they are admitted to Athens, they do not need to do this. I'm happy to tell you about your illness and how to treat it more.

azimideveloper profile image
azimideveloper in reply to Suzanneactavo

Since I've been talking to you, I have a feeling of encouragement and feel that I'm not alone, and you give me positive energy and I am sure that the only remedy for this disease is through peace of mind.

azimideveloper profile image
azimideveloper in reply to Suzanneactavo

Since I've been talking to you, I have a feeling of encouragement and feel that I'm not alone, and you give me positive energy and I am sure that the only remedy for this disease is through peace of mind.

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