Hidradenitis Suppurativa Support and Information's Journal|
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|Monday, May 20th, 2013|
|Saturday, July 28th, 2012|
I got a sore from my skin condition like.. right in the asscrack where my tailbone is, and i think it’s broken, but I can’t tend to it because it TICKLES every fucking time I touch it. FML
|Wednesday, May 9th, 2012|
Where Doctors Get HS Wrong
FIRST THINGS FIRST: I am NOT a medical professional. I am merely the mother of a 17 year old daughter with HS who has done a ton of research. This is NOT a medical opinion – simply a reiteration of some of the things I’ve learned – and some of the things I believe.
It seems that one of the commonalities that many HS sufferers face is that many of the doctors they’ve seen – from primary care physicians to dermatologists to surgeons - simply do not know what to do to help. I believe that this is because they have approached the condition from the wrong prospective.
Many, if not most, and mainly because of lack of experience/knowledge, approach it as merely a skin condition. This is why the first step always seems to be a progression of prescriptions for antibiotics and perhaps topical treatments. Which almost never work, and if they do, only for a short period of time. This includes the doxycyclines, minocyclines, the combination of clindamycin/rifampicin, etc. all the way up to the retinoids, i.e. Accutane. It is understandable. In the main, if a dermatologist does not specialize in the more recalcitrant skin conditions, such as plaque psoriasis, this is what they know and this is what they are trained to do.
After much research and in talking with our new specialist, who yes, is a dermatologist, but one who specializes in the “harder” cases, I have come to believe that Hidradenitis Suppurativa is an autoimmune disease. When approached from this perspective many HS symptoms/manifestations/complications fall into place.
Why is HS so resistant to antibiotics? Because, of course, first and foremost, there is NOT a bacterial cause. It is not an infection and it is not because of lack of cleanliness or exposure to environmental factors. It is an internal condition that manifests in this particular way – through skin lesions. (Which by the way, is why I am extremely against calling it “Acne Inversa” as many have tried to do – I think it trivializes the condition and makes it MORE likely, rather than less, that a medical professional will mistreat.)
Why do the wounds not heal properly? Again, because it is an internal condition, and not “wounds” properly understood. No amount of topical agents will fully heal the lesions. There are many that may provide temporary relief, but only that. (Includes corticosteroid injections, which do help in the short term, but are not recommended for long-term use).
Is there a genetic connection? I believe there is. By genetics, I don’t necessarily mean inheritable (although there does seem to be many cases where HS runs in families, it is not so in ours). It seems to me that research into other conditions such as Rheumatoid Arthritis, Plaque Psoriasis, Crohn’s and other diseases place HS along the same lines. Links to the PTPN22 gene. Which is why so many of the biologic drugs used for those conditions, such as adalimumab (Humira), etanercept (Enbrel), and infliximab (Remicade) show promise for HS sufferers.
Autoimmune disorders are notoriously hard to treat. For every Lupus patient that benefits from one therapy, another sees no result. The same can be said for Crohn’s sufferers and a whole list of other conditions. For most, at this point, it’s trial and error. And many discover that a particular drug may help for a while and then plateau, at which point another drug will be introduced for a time before the patient goes back to the first. It, to put it pointedly, sucks. Not just for HS sufferers, but for many others who suffer from these conditions.
THERE IS HOPE – REAL HOPE!
While it is true that HS is severely underserved in the medical research area – so few clinical trials/research into the disease, there is some hope. First, because there ARE a couple of HS clinical trials going on right now – Stage III trials are underway for Humira and HS. It, so far, has seen fairly good results, and our doctor thinks that Humira will be approved for HS within a couple of years. Second, there is a great deal of research going on into what I call ancillary conditions – Crohn’s, psoriasis, lupus, rheumatoid arthritis, all of which, I believe will be beneficial to HS sufferers.
Second, though this one has a much longer timeframe – genetic mapping is THE cutting edge for recalcitrant disease treatment and it’s happening right now. Someday, I believe, medical researchers will find a way to map each person’s genes and be able to design individual therapies particular to each person’s disease/condition.
What’s working right now -
My daughter has been on a combination of Humira/Methotrexate/Finesteride for one month. The doctor has not prescribed any “wound care” as such. She has experienced almost no leekage for three weeks now, no new outbreaks and her wounds, while not necessarily “healing” are much, much less angry and she is in virtually no pain. It is working. For how long, we don’t know, but we’re almost giddy with excitement at how it has worked so far.
Additional note: This is not to say that some natural remedies, diet changes, surgery may be helpful, also.
In sum, I firmly believe that, properly diagnosed, HS is an autoimmune disorder and should be treated as such.
Have at it.
|Tuesday, May 1st, 2012|
i am 24 and have been suffering with hs since i was 12. i have a ton of other issues as well. i read that abcesses can form so deep they will be in the muscle. is this possible? perhaps why i believe i have fibromyalgia but have not gotten a dianosis? when a doctor finally diagnosed me at 17 she said simply here take this nitrofur every day for a year and stay dry. no other info... now it seems as if every pore in my breasts are clogged and i am getting multiple golf ball size lumps under my breasts on my inner thighs behind my ear ...i am always sickly, always tired. and sick of people telling me i'm lazy and doctors not knowing a thing. i was diagnosed with temporal mandibular joint disorder which leaves me with chronic rock hard muscles and pain in my jaw neck head and back, i have fluid that wont drain from my ear because the muscles are so tight and i've experienced vertigo. well there is a spot behind my left ear where my jaw meets that has always had one small hard boil that hardly drained, now there are several small ones. i felt the right ear (where the fluid and chronic pain is) in the same area and it felt as if a lymph node was swollen where my jaw meets and it just occured to me it might be HS. does anyone else suffer from other chronic issues? perhaps persistent muscle spasms, sickliness, and an over all feeling of fatigue and being ill all the time? i remember complaining of back aches, shin splints and being in physical therapy as some of my first memories. yet still after millions of doctors and being labeled drug seeking and a hypochondriac these are the only answers i have found. it has affected my sex life to the point where my partner has left me because he thinks i no longer want him when in truth i can barely move and have felt this way to some degree all of my life. i am sick and tired of being sick and tired and in pain. my two babies need an active less grumpy mama. Current Mood: HOPELESS
|Thursday, September 22nd, 2011|
Here we go...
Next Thursday morning I've got my first ever HS surgery -- we're removing the gland under my left arm. Can anyone let me know what I can expect so far as the procedure and the recovery? I've given myself 6 days off work to recup -- the surgeon warned me to take time for sure, since she likes to "dig around and be certain I've got all the damaged and affected bits", and apparently she doesn't suture closed but just packs the wound and lets it heal from the inside out.
Sooo... Can I hear some stories?
|Friday, April 9th, 2010|
Newly Diagnosed with HS
Hi there. I was just Diagnosed with HS today. I Dermatoligist new what it was at first glance. She was really excited to prescribe me Sumaxin cleansing pads. With my insurance they are still expensive. I saw some info on clinical trials and emailed for more info. I've had this problem since I was a teen and I'm now in my early 40's. I just thought it was acne like my face... I'm wondering if the acne and sores on my face are related to the HS. I work for a OB-Gyne... I will pump him for info... he may know something.
Lori Current Mood: crappy
|Friday, December 11th, 2009|
I was just diagnosed with HS yesterday, and I know basically nothing about it.
When I was younger I never really ever had acne, and I was very active. I would get these bumps every now and then, but they were always tiny and went away after a week or so.
Then I got pregnant, and gained 100lbs. (I only had access to foods like potatoes, bread, and baloney). So now I'm 50lbs overweight, and I've got one sinus track under my arm, and swollen bumps under my arms and groin area. I'm terrified because I was hoping after going to the hospital twice, and dealing with it getting worse over the past two years, there would be a cure. I see these pictures online and I'm terrified it'll happen to me. I read on some site it could be linked to your thyroid, which I'm getting checked out right now. (Thyroid problems and Grave's Disease runs in my family). So.. how do you help prevent these inflammations? Are there pills to keep it down? Creams? Or am I looking at the rest of my life being spent in the hospital in pain? If I lose the weight and stop using deodorant and do whatever can I find a way to prevent those extremely severe cases? Or.. am I just kinda doomed? :( Current Mood: sad
|Monday, June 29th, 2009|
I dont know why it took me so long to join this comm, seeing as Im on Livejournal almost all day. Im so thankful for this community, no matter how inactive it seems to be ;]
I was 21 when I first started having outbreaks on my pubic area and I really freaked out-not knowing what it was and thinking it was something completely different. I brought it up with my mother, expecting her to be horrified and disgusted, but surprisingly she was not surprised and even told me that she and my grandmother both have it. Honestly, it kinda made me feel a little better that it was hereditary and not something I managed to do to myself (as odd as that sounds?) My outbreaks arent as severe as some that I've seen during my online research and I thank god for that because my heart really breaks seeing those photos and reading other's experiences. I've even managed to find out that I have a friend irl that suffers from this condition as well so I have someone I can relate to about this.
I was actually diagnosed by my gynocologist, when I brought up my worries and confusion as to what the outbreaks might be. I love my gynocologist, he didnt make me feel uncomfortable and sounded very informed about what I was going through.
I have a question, I dont have too many outbreaks, but I've noticed that during periods when I gain weight they seem to flare up more often than when Im weighing less. Does this happen to everybody or am I just connecting things together that dont really relate?
Also, I was wondering at the possibility of having hair removal treatment as a... I dont wanna say cure, but to relieve some of the outbreaks. Is that possible? Or would it not have any impact on it? I must sound so naive >_<
I hope to get to know you guys better through this community and feel free to add me! Just let me know :]( Just So Its Not All TextCollapse )
|Tuesday, June 23rd, 2009|
Hi~ I really hope this community isn't dead, because I really need you guys.
Hi. I'm VK.
I've had HS for 6 years now, sine I was 11, and I finally figured out what it was a month ago. I cried for 2 days.
I accepted it pretty quickly, I mean I have to, it's never gonna go away.
I get lesions on my pubic area (not too many, but they're definitely there), a lot on my inner thighs, they started on my butt, but I don't get them too often, and I have large lesions in both my armpits. It's really really devasting when I feel then developing because I know there's nothing I can do about it. I know it's going to hurt and leave a horrible scar.
When I first decided I needed to see a doctor about it, It was probably 3 or 4 years ago. She told me it was just a carbuncle, and put me on antibiotics. After a little improvement I went back to see her, and she proceeded to yell at me because it wasn't going away. I went back once more and she hurriedly mumbled to me "It's folliculitis." with a troubled look on her face, that when I had suspicions she didn't know what it was. Even she looked disgusted.
I stopped seeing her because when I left there I felt even more alienated, weird and nasty.
I was relieved and devasted when I finally found it was HS. I'm still trying to find effective ways to deal with this and take care of myself. Reading through all the posts here has really helped me, thank you so much everyone. I know when I finally see a doctor about this again, it's going to be really hard, but I'm ready. I know I have serious depression problems along with some personality issues, so I know I'll have to go therapy.
I'm in the middle of an outbreak at the moment, I've just started summer classes, so I'm stressed. I live in Florida so it's extremely humid and hot at all times, in the 90s-100s. I'm out and about everyday around campus so I can't really escape the heat. I have one part of shorts and I wear them every oncei n a while. I feel so uncomfortable, like everyone knows I have HS. Every step I take, I just want to break down and scream and cry, It hurts so much, but I just put on my big girl panties and deal. But, when I get through the day, and I finally get home and relax, I feel so strong kinda like "Ha! This stupid disease isn't stopping me from living my life!"
I'm always in a lot of pain during the summers. Compresses help, Advil, tylenol, and aleve don't. Showering twice a day takes the edge off the ones that are getting ready to burst but it doesn't nothing for the ache of the lurkers. My bra pokes the ones under my arms so they're in a constant state of throbbiness and are extremely tender to the touch. They itch a lot, but I refuse to scratch them. I've had one to date under my breast and it came and went, didn't even erupt, so I'm pretty happy about that.
I would really like to see how I do on low doses of lortabs or codine.
A lot of my underwear, shirt, and bras are ruined from the draining lesions. I told the guy I'm involved with, and he took it extremely well. He's really sweet about it, and he said it doesn't bother him. I don't believe him, but I don't dwell on it too much. We're not dating but I've known him for a while and he said it doesn't change his opinion of me.
Overall, this is just part of me and I'm going to learn to deal with it. Current Mood: Painful.
|Wednesday, April 1st, 2009|
I just found this group and feel that joining it may be the best thing I can do for myself at the moment. On Monday I was diagnosed with HS. After talking to my doctor, having a sample taken, and doing some outside research I have found myself wondering what stories you all have. I'm not sure which treatment method they will decide is best for me. At the moment I am on my second strand of antibiodics and so far as I can tell these haven't worked.
So here is my question to you all...
Which form of treatment have you or will you go with and what were your results?
|Friday, January 16th, 2009|
I was just diagnosed with HS wednesday.although i have been suffering from recurring abscesses for the last 2 1/2 years.I had surgery last july to have an abscess removed from under my arm.I was too embarassed to go to the doctor with it,had it 6 months before i went to the local doctor with it.It had gotten bigger and bigger.I couldnt move my arm let alone lift it to show him.he said it was the worst he had ever seen and told me he was suprised i hadnt got blood piosoning.He sent me to the hospital to have it drained.It was only supposed to be a minor surger,i was told i would propably have to stay for only one night.When i woke up after surgery i experienced the worst pain i had ever experienced in my whole life and had to be given the max dose of morphine.I wa violently sick for the night and when the next morning came the doctor removed the bandage to look at my arpit.I took a quick glimpse and was absolutely horrified to see that they had removed prcticallly all the skin under my arm.I dont know what it was,you might think this is stupid but the shock kept me in tears for the whole day.the pain was excrutiating,i couldnt even shower by myself (nor did i want to shower as that involved putting the nozzle of the shower into the gaping hole that was my armpit and believe me that was agony).Since that two weeks i spent in hospital i have suffered from countless abcesses and misdiagnosis..put on antibiotics.I am at this very moment in pain as i write this as another large abscess has formed directly under where i had the last one surgically operated on.HS is a horrible horrible disease.I wouldnt wish it on my worst enemy.Im waiting to see a specialist about the condition he should contact me in the next 3-4 days.I hope i can make some friends here as its a condition i find hard discussing with others.I also suffer from clinical depression.I'm 18 years old.xox
|Tuesday, October 14th, 2008|
On Mon 3rd November I have an appointment with a surgeon to see about getting a pilondial abcess removed. I am naturally pretty scared/excited/worried etc. So I have a few questions for people. I've had this for about 3 years and am pretty much crippled because of it - first time it came up it was literally the size of a golf ball but my Dr was pretty uninterested in it so I just had it lanced before I was sent on my way.
After suffering HS for 10 years and being thrown oral antibiotics and dismissed I changed doctors, now I have a lovely wee lady who gave me a diagnosis, explained the nature of HS to me and is now seeing about getting my back sorted.. I'm currently on a clindamycin topical solution which has helped with the flare-ups a great deal.
So.. I have questions for those of you who have had this.
* Is it usually a local anesthetic that is used? It's a pretty huge uh... thing and it goes really deep. So will it just be a local anesthetic and chop-chop or is it a fairly intrusive surgery?
* What is the healing process like? How long should I expect it to take? I know this is all down to the individual but I'd like to know what to expect.
*Another thing I am worried about is if I am likely to be put on antibiotics after- I've had a few fights with doctors over the years due to use of antibiotics. My old GP used to just thrown amoxcyillin or oxytetracycline at me like it would make a damn difference. I've also suffered chronic tonsilitis and sinus infections in the past so I have a long history with antibiotics - I'd really like to not have to take any ever again but I have a funny feeling they may stick me on something "as a precaution" which is something I've heard before. *Sadface*
Also... Once I am chopped and healed I have been toying with the idea of getting a tattoo or something, as a way to sort of claim back a little bit of myself but I have concerns. My skin is like paper now, I scar very easily even in places that haven't been touched by any boils or carbunkles. Will I just mess myself up even more if I get a tattoo? Do any of you have tattoos? Did you have any problems with tattoos healing and such.
|Monday, August 11th, 2008|
Crystal Deodorant Stone?
Has anyone here ever tried the "crystal deodorant stones"? I hear they last a lot longer than normal deodorant, and that they feel better on the skin and are less scented than even "unscented" deodorant, but I have no clue how my HS might react. FWIW I don't get flare-ups from either deodorant or antiperspirant, but I do from shaving.
|Thursday, August 7th, 2008|
Let's keep all posts in English and on topic please.
|Tuesday, August 5th, 2008|
DAMN IT! DAMN IT! DAMN IT!
I NEVER GET A BREAK!
I finally get one alien down to manageable size and three more pop up?
I even went out and bought a huge portable a/c to try and hide from the heat this summer. I thought Washington was supposed to be mild! Hello! (And I'm tired of people joking that I brought the heat with me from Southern California. heh)
I guess part of the problem is all the stress I've had to deal with lately. I don't know. I'm just tired of it all. I'd like just one pain free day. I feel like I'm going to break down and cry at any moment. Current Mood: frustrated
|Tuesday, June 17th, 2008|
HS. Holy Shit.
I think this is only my third entry labeled "HS." Hidradenitis Suppurativa. It's a part of my everyday life, some times a bigger part than others. Most of the time I am quiet about it, here, and in every other aspect of my life. With DreamGuy, I just use the shorthand and he knows when I say I'm having a Day of Pain
that I'll be moving gingerly and laying low.
So I'll say now that part of the reason I felt like such a freaking AMAZON SUPERHERO for having survived last weekend at the racetrack was that I was in the middle of a full-blown major attack of HS. Heat and sweating are the worst things you can do to aggravate this condition. The flare-up was the main reason I was considering bailing on the weekend. ( Read more...Collapse )
Forgot How to Post to Community....
It's been so long since I posted to an LJ community, I can't remember how. I had this entry written as "private" but wanted to open it to this group. Couldn't figure that out, so here's a link to an entry
I wrote about how HS affects my daily life lately (or not).
|Saturday, May 31st, 2008|
It never seems to end. One sore starts to heal up and then another takes its place. Just a year since my last surgery for this blasted disease and I'm in pain again. This one is taking it's own sweet time. It's still hard, but it is oozing, and large, deep, red, hot, sore, sore, sore. I can't really bend over to pick anything up off the floor without pinching it (lower left side of my belly), and I don't have help around my apartment normally. I can't afford in-home care. My fiance is only here on the weekends, and he's always too tired from working all week to give me any real help. I feel like there's really no hope left. *sighs* Current Mood: depressed
|Saturday, March 22nd, 2008|
This thing we call HS. So cruel.
I write these words hoping that some how sharing my thoughts , my feeling , my experience will some way help...but I know it wont. I've had this horrible thing , for ever it seems. I'm not sure what it worse, the physical or the mental part of it....but both take their toll.
26 years of it. over 50 surgeries from well meaning doctors. Although my case can be described as highly aggresive , I know the effects that we all share.
I have no remedies , I have no profound words of encouragement. Only a shared understanding. I know your thoughts. Could you know mine?
I have cried gallons of tears.
This song by Aimme Mann describes so much http://www.youtube.com/watch?v=bNbTC6xLVg0
|Saturday, November 3rd, 2007|
Blocked Apocrine Glands....
Hey everyone, quick question:
This might sound stupid, and to be honest I only have a high school equvilent of Biology but...
If HS is caused by blocked apocrine sweat glands, is there any way to UNBLOCK them?
Like, if the sink is blocked, people put stuff to unblock it.
Is it possible that the blocking of these glands is caused by some enzyme or something and maybe they can make an antidote?
Or, if it's the case of the apocrine glands not being fully formed, is there any way to make the body BELIEVE they are normal and make them act as normal? Or something that the reaction is different, not plugging :(?
Maybe, when people without HS sweat in these areas, maybe chemicals are being released that HS people don't release? Or visa versa?
Does this sound really stupid? :( I dunno. Any one who knows more medically then me, could they maybe guide me the right way?
Also, I read that emotional stress causes the apocrine sweat glands to start producing sweat. *And fatty acids and stuff* Emotinal stress and those glands seem to be linked.
However, I have no idea how to become less stressed. :(
Anyway sorry for this rant, would love any opinions on this idea, and even laughs because it probably sounds really dumb to anyone who knows about the whole thing *unlike me*...
Thanks guys! :)