HHD that is miserable : I have been... - Hailey-Hailey Dis...

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HHD that is miserable

Tracy5
Tracy5
11 Replies

I have been diagnosed with HHD about 3 years ago and all of a sudden i am broke out under the arms and breasts and pantyline area. The dermatologist gave me new medicine and nothing is working and I'm miserable trying to walk and raising my arms. Is there anything i could try that has worked for anyone else?

11 Replies
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limoribat

Hi Tracy5

I hv HHD 29 years. Its awfel!

Well...tried many thing. The latest and updated treatment here in Israel is LDN , low dose Nalatrxon. Hv u tried it?

Anyway, for me water mixed with salt, helps me drying my infected skin, and keeps me from getting an infection. Ofcourse there r so many other treatments... antibiotics pills and cortostroieds ointments.. Photo Dinamic Therapy, and i was offered to try Butox but since the LDN helps me now, didnt try it.

Hope u get better, its a painfull and frustrated illnes.

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Tracy5
Tracy5
in reply to limoribat

No i haven't tried that yet they have me on Dapsone. I have tried bleach baths and on so many creams and pills but nothing seems to work. My armpits and boob area and below are so bad right now that all i do is cry because it hurts so bad. When i go back to see my dermatologist i am going to ask about that medicine and see what she says. Thank You so much for the suggestion.

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Tracy5
Tracy5
in reply to Tracy5

Also i was going to ask what type of salt are u talking about?

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limoribat
limoribat
in reply to Tracy5

I take a bowel with a bit warm water and put in it the simple salt u use to cook with. Then i take cotton material and deep it in the water. About how much salt.. my derm told me to put one spoon every 5 glasses of water, but i alwayz put much more salt. The salt protect me from getting infection.

There r hard treatments for HHD like Metothrexat, but i think its wise not to use the "havy canons" that has side effects first. I know u r in great pain.hang on there.

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lfran

Hello Tracy,

I have been suffering from HHD for 11 years, and no one except for us can truly understand how this completely ruins your life. Are you doing Botox treatments in your most flared up areas? That has helped me, not a huge amount, but it does help. Also, wearing super soft, breathable, seamless (no elastics, nothing that cuts in) cotton undergarments and clothes is a must, as I'm sure you know. Epsom salt and bleach baths have never really worked for me sadly, but I am glad to read they work for others. When I am flared up I try to work from home, make sure I am getting a ton of sleep, and eating super healthfully, so my body is primed to heal. If I can walk without searing pain and friction, I take long walks in my neighborhood, just to feel like I am in some way staying active and to feel like myself again, as I love to exercise but this repellent disease makes that nearly impossible. I take Doxycycline when I am flared up, and in terms of my topical treatments, I just counted, and I have SEVEN different topical medications. I am happy to take this convo offline if you'd like. I live in NYC, with access to some of the best doctors in the world, and yet, HHD has overtaken my life, it is heartbreaking.

Sending you my best, most healing vibes,

Lisa

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lfran
lfran
in reply to lfran

Also, I wash/pat the infected areas with Hibiclens, and cover with soft gauze to protect the inflamed areas.

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Tracy5
Tracy5
in reply to lfran

I have been doing Hibiclens but it dont seem to help me. I have never been told about Botox yet. I'm so miserable that it hurts to walk and do much with my arms and i can't stand to wear a bra but i have to. My under arms are so bad that they leak and my shirts stick. I keep saying i want to go to the emergencyroom to see if they can figure out something.

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lfran
lfran
in reply to Tracy5

When I went to the ER years ago, although they were lovely, all they could do was apply Lidocaine to the areas that had me wanting to scream in pain, put me on an IV drip to restore my fluids, as I was severely dehydrated, and write me a prescription for more antibiotics. Oh I know about the leaking, I would affix panty liners to the inside of my clothes so the leaking would not go all the way through. I now only wear soft black clothes, as leaks don't show as much. I'm so sorry you are so miserable. Is your dermatologist an expert in HHD? Does she/he know the extent of your suffering?

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Tracy5
Tracy5
in reply to lfran

I'm not sure if she is an expert because she has put me on many creams and pills and nothing is working. I tell her when i go to my appointments but she just ups my pills and creams..

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UASC

Have you tried Clobetasol? I am so sorry for your suffering, I had a really bad case under my arms last year it had strep and staph in it that would clear with antibiotics. I was admitted to the hospital had a PICC put in for IV antibiotics. Anyway they ended up using a CO2 laser and removed my skin. What therapies have you tried so far?

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Tracy5

No i haven't tried that medicine yet. That's what I was thinking i need to go to the hospital to clear up this infection. But my dermatologist hasn't told me to go there yet. I haven't tried any therapies yet I'm going to my dermatologist this morning and I'm going to ask her because all i want to do is cry in pain. Thank god i have a wonderful husband because it hurts to wash my own hair in the shower because of raising my arms so he helps.i went away this weekend and i was in do much psin i really couldn't enjoy myselfbut i did the best i could. Any recommendations on therapies let me know i can ask about?

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