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Old 01-16-2016, 09:24 PM
2 posts, read 3,204 times
Reputation: 15


I'm currently in the first month of trying Spironolactone. No changes so far, but....first month. Dr wants me to try for 4 to 6 months before giving up on it. If it continues to have no effect I'll see what he says about Humira. It's encouraging to hear that it can have good effect on long-term stage 3 HS. Thanks for the tips.
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Old 03-29-2016, 07:48 AM
1 posts, read 899 times
Reputation: 15
Hello all
I have been dealing with HS for about 5 years now. It wasn't until the past two years that I was able to self diagnose myself after I had a conversation with my doctor and she said that she couldn't really tell me what I had but that she had a hunch that it may be HS. I was devastated so I researched and researched until I found that my symptoms were textbook symptoms for HS. If it wasn't for my faith in God and my mom I don't know where I would be. After much research I have come to an understanding that certain foods make me flare up....dairy products and potatoes. However, I am not consuming those items and I just got one in my groin area that I would say has been the worst yet...painful!!!. My question is...is popcorn an item that flare up HS even though is gluten free? Any comments or suggestions are appreciated. Thank you
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Old 06-27-2016, 01:56 PM
Location: southeastern virginia
5 posts, read 4,322 times
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I'm a Crohn's patient, and I've just realized that I probably have HS. I've had small lesions from time to time, and I figured they were related to the Crohn's. But now I have the typical stage 1 HS lesions. I already take Humira, but on a different schedule than is used to treat HS. I take a shot every other week. It's now being acknowledged that HS is an autoimmune disease.

I have my regular appointment with the derm in August. If he's not familiar with the Humira treatment, I'm going to educate him. I really just wanted to reiterate that Humira does have a positive effect on HS, but it's new, and many derms don't even know about it. The info is on the Humira website. At this point, I think they say it doesn't absolutely cure HS, but it does dry up existing lesions and it prevents new ones from forming. That's a big improvement over treating HS like it's acne, which it isn't.
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Old 09-15-2017, 08:53 PM
1 posts, read 449 times
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Default Hi Everyone!

It's nice to connect with others that can relate to the pain and embarrassment of this disease. I have had it (diagnosed anyway) for almost 20 years. It wasn't bad for the few few years, was awful in my late twenties into my early thirties - then it went into remission (I have no idea why, I never did anything special). And then I got pregnant at 35 and it's been RAGING for 10 years.

First - weight may play a small role, but not a significant one (in my opinion). I weighed 125 lbs. when it first reared it's ugly head. In 20 years, my weight has fluctuated (I am at my heaviest now at 165 lbs due to some injuries this past year), and whether I was slender or a bit "fluffy" it's made no difference. I think it's time doctors stop shaming people and start looking for others triggers and causes of this disease. Losing weight may help, but it's not the root of the problem.
Second - Smoking. Smoking is not good for you, I know. BUT, I have seen 5 dermatologists and the number one thing they ask is if I smoked because they claim it was the biggest trigger (along with weight, but weight was ruled out for me). When I was younger, I smoked. Then I got pregnant and quit. I'm not an advocate for smoking, but I can honestly say that my symptoms are far worse with not smoking. Smoking does hinder the healing process for any illness, but in my experience, it's not a trigger. But doctors love to shame smokers (along with people who may have extra weight). Though I don't smoke anymore, and I'm not advocating smoking, it does bother me how everything under the sun gets blamed on smoking, yet bathing in chemicals, eating chemicals, etc. goes largely unchallenged. Where are all of the "may cause cancer" labels on everyday household, beauty, hygiene and food items that are riddled with super bad stuff? But I digress...
Third - I have literally spent THOUSANDS of dollars and nothing has worked (except when it went in remission when I was not doing anything proactively at all). Colloidal silver didn't work, manuka honey didn't work, tumeric (orally) didn't work, iodine (internally or externally) didn't work, neither did salicylic acid, powders, creams, tea tree, antibiotics, gluten free diet, too many vitamins to count....and the list goes on.
There are a few things that did keep it at bay (as well as it can be kept at bay)...
1) Avoiding hot showers and baths (unless of course I had to sit in tub to relieve discomfort from inflamed groin area).
2) Washing with antibacterial dish soap (orange dawn)
3) Rubbing alcohol and polysporin, particularly in armpits, to reduce odor
4) Warm (not hot) baths with epsom salts and lavender essential oil, at least 3 times a week.
5) Tumeric compresses did seem to take swelling down and lessen pain, but they are messy. If you are going to try it, do it at night and use old bedding (it stains).
6) Tanning bed (which I stopped because cancer scares me more) for 10 minutes, twice a week. That being said, I am discussing the possibility of using the new lamps they have come out now for people with vitamin D deficiencies that do not have harmful UV rays.
7) Zinc (orally) seems to help keep the inflammation of the sinus tracting down.

I am on Day 2 of Accutane. I have read the positives and negatives...and I'm really hoping my experience will be positive. My doctor did some research and I thought I'd pass some info on. First, it only works in severe cases if you stay on it for 5 months to a year. I've read that some gave up after 2 or three months, so maybe more time is needed for some results? My doctor and pharmacist also both warned me that in the first two months, the condition (as well as any basic acne) will definitely worsen. I'm not looking forward to that. While accutane is prescribed mainly for treating the sebaceous glands, it can be successful in drying and clearing the sweat glands too but it does take longer and results are often not seen until 2 - 3 months after finishing treatment (so, possibly 8-10 months after starting treatment). We are going to try for one month and I will be going for liver function tests every 2 weeks. I'm really fortunate as I live in Canada and generic Accutane only costs about $90.00 per month (plus I have medical benefits through work now, so I only pay about $20 per month). I know some of you live in the US and it is so much more expensive there...throwing money away for a minimum of 5 months to take a chance on whether or not it will work is simply just not an option. I will update my progress with a longer course of accutane - if it works, maybe it can help someone who might have reservations on trying it. The side affects do scare me, but I'm getting rather desperate.

By the way, I've been at stage 3 for the past 8 years. Thinking about surgery too, it's good to read how other people have fared with this option too. HS is truly awful...and I'm not keen on seeing how much worse it can get.

Hugs to all!
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Old Today, 09:16 AM
1 posts
Reputation: 10
Put baking soda in a cup, like a tablespoon add 1/2 cup water. Apply this to the effected areas once or twice a day. Within two days the blisters are not hurting, redness almost gone and burning gone.

I now apply once a day to have it stop re accurances from starting. Give it a shot.

Also I had read it in a forum and the guy said it may effect hyper tension so check ot ot does.
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