anyone have HS (hidradenitis suppurativa)

I know I saw a post from at least one person who mentioned having this. It is potentially a really nasty disease, but thankfully mine hasn't progressed too much. I only have one sinus tract, and it's fairly small. I was put on accutane for 6 months- by a doctor who didn't really know what I had! I have tried other things too, sometimes finding relief, sometimes not. I actually didn't know what I had until my 6 week post partum checkup after my second child. My doc mentioned a name, and I was like "is that what I have?!?!?" She pulled out her derm manual, and sure enough, she was right! I was truly excited that day, to have a name to a disorder I had dealt with since I was 11. Like I said, mine is not so bad compared to what others deal with. But sometimes it just gets me. Anyone else out there, throw in your 2 cents!

Would also like to mention that the only thing that ever gave me 100% relief was a product called Asea. It was great! Alas, it runs about $140 a month, and is a supplement, so insurance won't cover it. I have had to discontinue it because of the cost. But if you suffer from this, and have the money to afford it, it was a miracle for me!

reply to post by chelsdh


Hello! Yes, I do have HS also. It is one nasty condition, isn't it?
I've had it for about 15 yrs. It runs in families. My older brother and one of my nephews have it to varying degrees. Mine is pretty aggressive. I have noticed that it flares worse when I am under a lot of stress.
I have many sinus tracts and they are spreading more all the time.
Be very careful not to let them get too far. One I had 5 yrs ago caused an infection in my blood that put me in the hospital. It was very serious and I was very sick.
I've tried the anti-biotics, both oral and topical, neither help much at all.
Most people do not have any idea how debilitating this condition can be.

reply to post by lokin


My mom and grandfather have/had it. My siblings got lucky, but I worry about my children developing it when they get older. Thanks for the heads up about nasty infections within the tracts. I hadn't thought about that :/ The one that I have will heal up for a day or so here and there, so that's a small blessing. My sister is a nurse and has found these AMAZING bandages that are used for pressure sores in patients. The bandages absolutely do not stick to your skin- cause adhesive reactions and ripping my healthy skin off during a bandage change is part of the battle as well. And they have silicone gel padding. The brand name of the bandage is Alyven. They are pricey (my sister grabs the ones that are not used by patients, that would otherwise be trashed), but they are so great!

I would apply yunnan piao to open sores.
I've used it for people with PCOS that have inflamed cysts.
Yunnan piao is a Chinese herb that comes in a few forms.
You want the powder form.
Not the pills. There are capsules, that are filled with the powder, but the powder form is best in this instance for easy use.
I would take a small but and make a paste of it. Apply the paste to the sore, then pay with dry powder to seal it all in, and just leave it.
It should accelerate healing and help close off the tracts a bit..

Buy a few bottles, as it will take a while to get used to using it, and the vials are not that big.

www.amazon.com...

reply to post by PtolemyII


Thanks. I will definitely check it out.

reply to post by PtolemyII


Thank you so much. I will definitely check this out.

I started showing signs of it after I menarched at age 12. I would get small breakouts (with larger ones sprinkled in there too) before and during my periods but they didn't get REALLY bad until about a year after I had a hysterectomy at age 48. I am now 53 and still fighting it
It runs in my family...my Mother had it and all of my siblings have it in varying degrees.
I have tunnels/holes/leaks galore. It can be so discouraging.
I have pretty much given up on any type of romantic relationship at least for now.
The following is not medical advice (I'm not a doc, just a sufferer looking for relief too) but I have found that taking 30 to 50mg per day of OptiZinc seems to help. My doctor suggested it. I also discovered some really good bandages by BSN/Jobst - Beirsdorf Coverlet....I get mine from Amazon. They do not irritate my skin, they are flexible and repositionable, they can be cut smaller or made larger by combining two or more bandages with gauze squares on top. They also come in a bunch of sizes and depending on the size bandage they come in boxes of 50 or 100 per box.
I swear by these bandages because I have to change bandages daily; depending on how big the alien is I have to change twice per day.
In addition to the aliens that come and go, I have an alien under my left arm that has been draining from three separate openings since 2006. I have one on the lower abdomen that has been draining every single day since February of 2012.
I suspect that dairy may aggravate it but I also avoid bread, pasta and sugary stuff.
I also use a wash with pyrithione zinc a couple of times per week and Hibiclens the rest of the time. I also use Water Jel Burn Jel Plus, it seems to help with the really painful ones (especially the open ones). It doesn't stop the pain completely but IMO it makes life a bit more tolerable. I get that from CVS online.
I mostly use a zinc cream (diaper rash cream) on my bandage over the area..in my case it seems to help as well. I use either the zinc cream or the BJP, I don't use them together on the same bandage.
I really am starting to consider the wide excision surgery..it's just finding someone (preferably a plastic surgeon) who knows about HS and how to perform the surgery and put me back together nicely, lol
I really do wish that the procedure for Incision and Drainage that they use in clinics and ERs would be modified so that a short - acting anesthetic could be used so people don't have to be awake for it... I mean you are already in intense pain and then they stick needles around the alien to anesthetize the area. Honestly, there have been times I actually screamed it hurt so bad.
I panic every time I get one that starts to get really big and it looks like it isn't going to open on it's own because as they do it now, the I&D is worse but sometimes it can't be helped
And antibiotics are useless...these are not normal bacterial infections. The antis may inially clear it but in many cases it just comes back and heck, you can't be on antibiotics constantly.
This is a really awful disease.
Thankfully it is getting more press to make people (especially doctors) more aware.
It was by chance in 2000 during a visit to an ER for an I&D that the ER doc in the know told me what I had.
I replied with, "You mean there is actually a name for this?!"

PtolemyII
I would apply yunnan piao to open sores.
I've used it for people with PCOS that have inflamed cysts.
Yunnan piao is a Chinese herb that comes in a few forms.
You want the powder form.
Not the pills. There are capsules, that are filled with the powder, but the powder form is best in this instance for easy use.
I would take a small but and make a paste of it. Apply the paste to the sore, then pay with dry powder to seal it all in, and just leave it.
It should accelerate healing and help close off the tracts a bit..

Buy a few bottles, as it will take a while to get used to using it, and the vials are not that big.

www.amazon.com...

edit on 10/23/13 by PtolemyII because: (no reason given)

edit on 10/23/13 by PtolemyII because: (no reason given)

I'm definitely looking into this.
I'm constantly on the hunt for anything that may be of help.
Thanks for then link!

reply to post by PaganArchangel


Did you have a blog about your experiences? I just wonder because I came across one, where the author called them her "aliens". Localized anesthetic, on an active inflamation is horrible! I was told after "sometimes it isn't fully effective because of the infection" - a warning I would have liked before they cut me open! I have had 2 on my face removed. I know having them on your face isn't "supposed" to be part of this condition, but I have also read about others having them there as well. Thankfully they were small and not a huge deal. But the scarring left from the cysts became discolored and looked like constant bruises. There is some scarring from the removal, but it is nothing compared to the bluish spots I had before!
Don't give up on finding someone special. If a person is not willing to get past this issue, he/she isn't worth pursuing. I am very fortunate that my husband has never once made me feel self conscious about it, even when my face swelled up and a co worker asked if my husband (then fiancé) had hit me! But I do feel horrible in a swim suit, the scarring on my legs usually keeps me in a cover up unless I am actually in the water.
I feel for you guys, because it sounds like you have it worse than mine, and mine is way too much!

chelsdh
reply to post by PaganArchangel

 

Did you have a blog about your experiences? I just wonder because I came across one, where the author called them her "aliens". Localized anesthetic, on an active inflamation is horrible! I was told after "sometimes it isn't fully effective because of the infection" - a warning I would have liked before they cut me open! I have had 2 on my face removed. I know having them on your face isn't "supposed" to be part of this condition, but I have also read about others having them there as well. Thankfully they were small and not a huge deal. But the scarring left from the cysts became discolored and looked like constant bruises. There is some scarring from the removal, but it is nothing compared to the bluish spots I had before!
Don't give up on finding someone special. If a person is not willing to get past this issue, he/she isn't worth pursuing. I am very fortunate that my husband has never once made me feel self conscious about it, even when my face swelled up and a co worker asked if my husband (then fiancé) had hit me! But I do feel horrible in a swim suit, the scarring on my legs usually keeps me in a cover up unless I am actually in the water.
I feel for you guys, because it sounds like you have it worse than mine, and mine is way too much!

I don't have a blog about my experiences, but I think I know who you may be talking about.
I belong to a Yahoo Group called HSGirlTalk, and we call them aliens over there
If you guys have not heard of the group, look us up! We would love to have you, no matter what stage you are in
I too have problems with acne on my face and when I was much younger I would get the cystic kind and now I wonder if it wasn't HS of the face. I took the accutane too and it didn't help either. On my face I use Kojic Acid soap once a week to keep the pores unplugged and to help the skin turn over.
Kojic Acid Soap
It is an amazing exfoliator but it is intense which is the reason I only use it once a week (no need to scrub the skin with this)...be sure to use a light moisturizer afterward, I use this
Home Heath Moisturizing Cream
Another good face wash is Alba Organics
Alba Organics Enzyme Face Wash
Here is a link for the Burn Jel Plus (you may also be able to find it in your local CVS)
Burn Jel Plus
Also here are some links to the bandages
C overlet Bandages
Coverlet Bandage Large
Coverlet Bandage Strips

*If you are allegic or have sensitivity to Zinc, do not take or use the following*
The following is simply what I use that I have found helps me.....not medical advice, lol.
The Pyrithione Zinc wash that I use on the aliens on my body is this..it is for Men but it doesn't have a masculine smell to it
Pyrithione Zinc Wash
If you can't find it then there is also this
Walmart Brand Pyrithione Zinc
The Py Zinc washes you only need a little bit and dilute well with water...it stings a little but it has been my experience that it cleans them up pretty good.
The Zinc supplement I am taking is this
OptiZinc
I take this paticular one because it includes copper along with the zinc and comes in 30mg per tab.
I also take a multivitamin.

You are very lucky to have a mate that understands the issues - he is definitely a keeper, lol

Regardless of what stage of HS we are in, whether we have a few breakouts or many, we are all in this together.....

Seriously I notice that the pharma companies have been doing some trials with some existing drugs but they need to get together and find out what the root causes are..they think it is autoimmune (I am inclined to agree, it behaves like one).
Many medical disciplines need to get together to work on this - researchers, endocrinologists, dermatologists, immunologists, rheumatologists, internal medicine, etc.
Unless these people get together and find the root causes, finding a truly effective treatment is just a stab in the dark.

By the way, the bandages I linked to are latex - free

reply to post by PaganArchangel


I know it's been a while since I posted in this thread, but I wanted to throw some information out here to y'all. I found a lady online, who recently came out with a a book about her experience with HS, her research and how she is treating it. I don't want it to seem like I am pushing her book . ( I did win a copy in a contest, and so far I am quite impressed.) If you are interested in the name of it I will U2U you.

Anyway, the whole concept is that HS is an autoimmune disease (like you said PaganArchangel). I have heard that idea for a long while, and I also thought it was AI. There are many that purport AI can be treated by a special diet, called the Auto Immune Protocol, or Paleo autoimmune approach. It's supposed to weed out any food that trigger irritation in the stomach lining. I suggest doing a search of "auto immune protocol" for a MUCH better explanation. It's pretty much a harder version of the paleo diet. It's quite difficult, and I have not been successful at adhering to it long enough to see results. But, maybe some of y'all are stronger willed and willing to take the plunge.

For now, I am omitting foods in the nightshade family (peppers, potatoes, tomatoes, eggplant to name a few.... and any spices that contain them) to see if it is a trigger for me. It seems that nightshades are a common culprit. I am hoping to find my triggers without having to do a mass elimination.

I will let you guys know my progress once I get to a point where I know it's been long enough to see potential results.