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I have been diagnosed with the rare autoimmune disease Hidradenitis Suppurativa, as well as having lupus. Not a great combination, as you might guess. What is the worst is that Hidradenitis Suppurativa caused terrible odor. I feel really ashamed going out in public these days. How can I stop the odor?

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Wow, I didn't know that Hidradenitis Suppurativa could cause such bad odor, though I do know that it affects the sweat glands. I don't know if there is anything you can do to make it go away. I guess you should just discuss it with your doctor and they might come up with a suggestion.
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Hello there krissie143,

I am so sorry to hear that you are dealing with Lupus and with hidradenitis suppurativa. My best friend is diagnosed with Lupus and I am aware how big changes you need to do to make your life easier with this condition. Also I am aware that hidradenitis suppurativa can cause you some serious troubles because it involves sweat glands.

Unfortunately, I am not sure that you should do anything on your own. It is best to consult with your doctor to find out what you can do about that strong odor. Maybe you will make your condition even worse if you try to resolve it on your own and medical expert is an expert and he should be well informed about the possible solutions.

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When I heard for the first time that someone is diagnosed with this disease, I was really surprised when they told me that odd smell also can come along with it. I am really scared when I hear that someone is diagnosed with this issue. I know that my friend was talking about some hidradenitis suppurativa natural treatment but I can't tell a lot about it. Anyway, when it comes to this ugly smell, maybe Listerine can help you? Also, try antiseptic wipes as well. Did you ever hear about Hibiclense? Neither did I, but I found it on the internet and it is wonderful...

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i too suffer from both and am about to have surgery to remove sinus tracts and am going to undergo roaccutain therapy, i think if your doctors can get your symptoms under control the odour should disappear, go back to your doctor
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I developed HS in 3rd grade. From 3rd grade to my sophomore year in college my Dr. misdiagnosed me. The 2nd Dr. refereed me to a dermatologist. I take doxycycl hycl daily to suppress it. This is after a few years of trial and error with my dermatologist. I also bathe with Safeguard antibacterial bar soap followed by hibiclens. I buy the bar soap from Wal-Mart and hibiclens from Wal-Greens. They seem to have the best price. I have a "armpit" toothbrush I use especially for washing my armpits when I bathe. Also I have tried these combinations: 1.applying coconut oil to prevent daily odor after bathing. 2. coconut oil w/ a dusting of cornstarch. 3.coconut oil w/ a dusting of cornstarch & baking soda 4.coconut oil w/ a dusting of cornstarch, baking soda w/ a few drops of lavender oil ( I personally do not like the smell of it). Currently, I spray white vinegar after my bath and have to wait for it to dry. This is working for me right now. The other combinations worked for a short period of time then the odor overcame it. Also I drink water daily and a few drops of vinegar helps cut down the odor. From what I understand I had overactive sweat glands and was beginning puberty. As a result of improper shaving I received an ingrown hair. I actually seem prone to it in other others of my body. Either way, it became infected resulting in HS. stress also causes inflammation. I am taking a beach vacation next week w/ 6 others so to avoid any embarrassing moments I am going to revisit my previous pit combinations. Also I no longer shave my pits. I use a sensitive formula depilatory cream. This has been my struggle for years, and how I am handling it. From what I have read, people have HS in varying degrees and each has to find a method that works for them. Hopes this helps!

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Hi I was diagnosed with Hidradenitis Suppurativa 16 years ago. I was diagnosed with Lupus 1 1/2 years ago. I have been waiting to find someone that had both to see who one or the other affected them.
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I also do not shave my pits. I actually was them. My pits normally have flares up in progress or already there. The hot wax seems to soothe it at the moment. My regiment for the smell is dial, hibiclens, and alcohol. I then put tea tree, peppermint, lemon or some other oil on. I have never tried coconut or lavender. I have tried cornstarch and baking soda (burned my underarms) I sometimes get raw lesions in my pits too and I use peroxide on them when this happens. Now my groin area...Ugh it gets the same smell sometimes. I usually will just put deodorant on down there as well when the odor is present and stay home.. HS sucks. I have had it since a kid as well and was finally diagnosed at about 18. Unlike others. I don't sweat at all. So my skin is really jacked up.
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Hi i have hidrantis and lupus too and have these bad odors, wow thought i was the only one :/
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Is your odor constant? Or does it come during certain types of Hidradenitis flares?
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Man that sounds just like mine I'm going to have to try what your doing
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Thank you all for sharing. I'm 22 years old and have HS also. I've had it since I was 17 and it has gotten worse over the years, I get them between my breast and under my arms which is very difficult for me. I have more flare ups under my arms then my breast and have tried everything I can think of. So, thanks for sharing I will see if cornstarch helps.
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I can tell you unequivocally that bi weekly injections of Humira have a huge effect on HS - I suffered for years with HS, and in 2012 also developed plaque psoriasis. I began injecting Humira, and not only did it rid me of the psoriasis, but it also rid me of the HS. Hugely expensive, but a miracle cure. Good luck
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i would have to agree, the day of my doctors visit my dermatologist told me that Humira was just approved that same day by the FDA. It was either Humira or Accutane, Humira it was. I was clear within weeks! Humira is a life saver for HS
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I am having the infected skin cut off by a doctor and then i am having laser hair removal and then im gonna go on humaria for 3 months, there is no cure for it but i think with all 3 of these things it will basically make it all go away
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