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Today was a very bad day.
Thank you for letting me write this down.
I will finish this later
mnm mom

Hello, I am a 16 year old teenage girl, I sure care a lot about how I look, to my wonderful surprise on June 25th 2009, I was diagnosed with Schamberg's Disease, it was probably the hardest thing for me to hear when my dermatologist told me there was no cure. I have had this since January 2009. Before I went to a dermatologist my lower legs were just covered, it was horrible. I showed him my legs and asked him if it was going to get any worse, he looked at them and said, " Doesn't look like it can " , to my surprise after a straight week of complete depression, my lower legs, upper legs, back and butt, had Schambergs. All it did was seem to get worse, I was like going crazy, it was summer, and I couldn't wear shorts. After about a month or two, I started to cope, at the end of summer I was dealing with it, and everything (besides my skin) was close to perfect. In September 09 I noticed it was fading, everything was working out for me, It was completely gone off my back, butt and upper legs, still on my lower legs, but it was fading! I was ecstatic. All of October I was schambergs free. Than at the end of October, things started getting bad, and nothing seemed to be going right, I was failing most of my classes, I got played by some guy, and my sister moved out. I was very unhappy, it's november now, and I am completely covered in Schambergs, upper and lower legs, butt, back, stomache, my arms are covered, even my shoulders have Schambergs, oh and, I GOT IT ON MY FACE. I have never even read about someone getting it on their face, But guess what, It happens... and it spreads quickly on your face. I am also crazy itchy, this is such an unfair disease and I never thought something like this would happen to me, but i guess it. I went to the doctor today to talk to him about it on my face, because I cant even cover it up with makeup. He gave me a prescription for prednisone. Apparently it's not good for you at all though, But i'm going to give it a try for 7 days, wish me luck, because i sure as hell don't want this to get worse on my face.

I just can't keep up with the blisters. Every time I get one lot under control a heap more come. ACV is helping to clear up the blisters faster but they are coming harder and faster LOL. I would love to work out why this is happening and get to the root of the cause. Cold compressors are my sanity at the moment. I went to a chinese herbalist who seems to thing he can heal me so I'll let you know how that goes. 

Hey fellow Grover'ers, hope everyone is having a itch-free week. This has been the best week I have had since my first flare up in June( knock on wood )...I was just wondering if anyone on here who had Grovers and it went away, what was that like? As far as did you just wake up one morning and it was gone or did it slowy dry up and leave? Knocking on wood here, but mine last 3 days have been itch free and looks a lot better on back and chest. 

Thankx in advance

Keith 

How's it coming? Any relief?

Thanks for your reply and help Jane

I will try that and see if it is a help for me. Fortunately today is looking a lot better, not much int he way of leakage so fingers crossed I will be over the worse of that session and stable for a week or two.

Thanks again.

Thanks monkey

I am not feeling too bad today "down there" the antibiotics may have helped or it may be a coincidence but it is easier today. The anti biotics make me feel like s**t though and I feel ill right through my stomach and have cramps I think in my back or at least that is where they seem but you know it may be my stomach...but I that is all a relief compared to the pain I have been suffering.

I think you are right about my HS being at an advanced stage now in that area. I have three areas of attack this is the worse and now alongside this is a "new" area which had abscesses for the first time in my scrotum a couple of weeks ago that where enormous and i mentioned earlier. I am assuming they are derivative of this area where the pic is as alongside so as if it is spreading underneath which is the characteristic of advanced HS as I read it.

The other two areas are not quite as bad, one pretty much leaks a couple of times a month and I get small abscesses (they used to be large but now have 2 "holes" like the 3 in the pic) and the third area of attack is still just getting large abscesses up to baseball size and they come in 5's one behind the other and when that kicks off it has a cycle of about 7 to 10 days 1 coming and peaking and bursting then the next one kicks in and so on....this is pretty much how the area pictured started off but once the holes appeared after numerous abscesses it just leaks and gets small abscesses obviously because they are constantly draining through the open sores. Although I no longer the enormous abscesses there the pain is still terrific and difficult to clean as you can probably imagine it is severely painful to touch with anything.

So just have to play the waiting game for longer for my surgeon appointment.

I have not worked for some time now and I am worried that when I am able to I will be in a similar position to yourself and others and find it difficult to work permanently and may quite a lot of time off sick. The thought of getting a warning for having HS must be awful for you, what are you supposed to do?

The amount of people who suffer with HS must now make it a viable business solution for the big companies like Astra Zenica etc to research and find a cure or good consistent treatment for it. You read in most sources now that it affects 1% of the population and that is a hell of a lot of people.....

Fingers crossed

I have read what everyone said in this forum. It is very interesting and helpful, as I have found lots of new information about the new treatments of PLE.
I have also read about PLE on the Internet, and can advise on the good websites, that give treatment advices:
http://emedicine.medscape.com/article/1119686-treatment
http://dermnetnz.org/reactions/pmle.html
Now, little bit about myself:
I am 27. I have had PLE for nearly 2 years. Before getting PLE, I have never had any type of allergy or any skin problems, and would never think that this could happen to me.
In one Russian forum (I am from Ukraine, but live in London) one lady wrote that she got PLE after she got sun burned.
Apparently this is exactly what happened to me. I have very pale skin and did not get sun tanned easily. Despite this, I loved and enjoyed sun a lot (it is in past now ) and could spend long time waking in the sun or reading a book. 2 years ago, when I was on holidays in Ukraine, I got seriously burned. After this I have notices slight itching behind my ears and neck, but did not pay much attention to this. It was developing, and started to disturb me seriously. I have seen few doctors last year, some of them were private practices, which I paid lots of money to. But no-one would tell me what condition I have. I have found out about it myself after reading forums and different information on Internet.
One good doctor in Ukraine told me what course of medicine to take that may help (some were anti-malarial tablets). I will tell you about them another time, as I don’t have the names with me right now. (I am not sure whether the course of medicine helped, but at the time I was taking the tablets they seamed helping). Also he advised to use hydrocortisone cream and sun creams, and of course sunscreens.
Now I have started to take Beta carotene and Niacinamide (vitamin B3). Hope it helps.
I've  got lots of stories to tell you about my condition, but I will do it slowly...
Bye-bye for now and Good-luck!

Hi Johnboy, I don't have any advice or help for you, but I hope somebody w/HS will come along who might be able to offer some help.

I'm so sorry for the misery you are having to endure. I'm sure it must be horrendously sore. I had a friend who had leaking fissures in that area and he used to use a sanitary pad to mop us to to speak. It helped because nothing was stuck to his skin.

Jane

hi john.
how are you today, not so good by the sound of things..sorry to hear you had a bad time at a&e yesterday....They have no idea do they there hopeless when it comes to hs ..The fact you had to go in the first place is harrowing enough ,then to to explain and justify why your there .the pain and discomfort must of been bad for you to have to gone yesterday.. how are you today john!......
Ive seen your photo and looks painful................ooouuuuuuuuuuuuucccccccccccchhhhhhhhhhhhhhhhhh...
IM no expert john but that looks advanced hs in that area ...looks very simmalir to my 1995 experience in hs state, looks as though its created a fitsulla,the edges are smooth and very circular which are signs of age and length of time you have had it..fitsullas are caused through current infections in the same area and causes the hole to back tract.basicaily enters in one area and comes out in another area like making a tunnel under the skin,if i not explined very you can look it up, for fitsullias hope my spelling correct. also ask for tetralysal which is a antibiotic for severe acne but also has a antibiotic which will clear any infections at present in the skin.this has been prescribed by my gp while im waiting for a appt for a dermotologist....dont know if there going to be any help or give me any info none have up to know........
work was ok today but really tired being first day back, had to have a return to work for being off again as its my 6 time this year with hs.....took the bull by the horns and explained my condition and what it is and how it effects me...met by stunned silence no one new what to say, feel like a leper today ....but now they know..have to see what they do now..and how they go forward with it..also asked if they would keep confidential info given because of the embrassment........my manager was alright about it .and thinks ill get a letter for a verbal warning about my abscence...not only am I cursed with hs but cursed with jobs as they dont want to know if yore ill...
enough of my moaning tomorrows another day..

hope your feeling a bit better john,and trying to get some comfort which i know is not easy,try and keep your chin up..hows the day time television going....speak soon monkey