Author Topic: Schamberg's?  (Read 236565 times)

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Offline sarahannette

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Re: Schamberg's?
« Reply #100 on: Thursday April 17, 2008, 10:23:34 PM »
so, i havent posted in here in quite a while. i just wanted to update everyone.

well, my life has returned completely to normal. i have gone back to using advil and midol (instead of just tylenol, what a relief!!), i am capable of enjoying happy hour more and more often, and i have yet to have anymore SERIOUS spots show up. i have had a few pop up on my legs in the past few months (and THE ONLY ONES since my original spots faded well over a year ago!!!!). when i noticed a spot on my knee and one on my foot, i immediately headed to the store and bought and overstock of tomatoes. within a few days they were gone, and still are. i am having a garden themed wedding next month and i feel completely comfortable knowing that i dont have to worry about having unattractive spots showing up.

i see that a few people have had luck with increasing their vit-k intake. how is that going for everyone now? is it still working, not working well enough or fast enough?

i just cant understand, for me it was so simple to clear this up. it seems to be helping with others as well. why dont dermatologist at least suggest a change in diet?

anyways, i hope everyone is coping well with this. i would love to hear updates!!

Offline nance

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Re: Schamberg's?
« Reply #101 on: Wednesday May 07, 2008, 02:03:31 AM »
I've recently experienced a bout with Scamberg's on my legs which my dermatologist called "the worst he's ever seen" and basically gave the same prognosis as other folks have reported on this thread.  Out of desperation  (the itching was torture), I began reading all I could find about this disease on the web.  I quickly found that virtually all the information from "traditional" dermatology sites offered about the same info. "We don't know what causes it and we don't know how to cure it, lesions are benign... here's some topical corticosteroids, let us know how things progress".

My lesions have all but disappeared now and, knowing how miserable I was, I wanted to share what I did.  I have no idea whether any of these are responsible for helping, but something worked. 

I have been taking good quality probiotics (Primadophilus Optima), Quercetin (500 mg.), Esther C (500 mg.) along with my normal multiple vitamin with breakfast.  I also take an Alfalfa tablet for Vitamin K.    At lunch, I just take the Alfalfa and have increased vegetables high in Vitamin K.  Then with dinner, I again take 500 mg. Quercetin and 500 mg. Esther C and the Alfalfa.

Initially, I attempted to use the prescription corticosteroid cream (Triamcinolone Acetonide Ointment)  sparingly, but the Doctor said to use it liberally.             

Within a week to ten days of doing all this, the lesions began to lighten and within the next week they were all but totally gone.  Thank God, what a relief.

I'm not recommending this regimen to anyone, if you should want to try it, be sure to clear each of the ingrediants with your doctor before taking them.  I hope this helps someone, Schamberg's is a miserable disease.
 

Offline lari_iacob

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Schamberg's?
« Reply #102 on: Friday June 06, 2008, 06:49:58 AM »
Hi all of you!My name is larisa and i am from Romania.I think i have schamberg also but i am not quite sure!So, i am begging you ,pretty please post some photos with your lesions so if i can see if they ressemble mine!I have read all of your messeges and i am quite desperate in thinking that they will last for such a long time!So i am waiting to see some photos to ease my mind.I will try to post some of my own. i got my first lesion 2 months ago:(and i have lots of them on my legs and a little one on my hand :( :-[Please help me with this problem :'( :'( :'(


Offline koes0030

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Re: Schamberg's?
« Reply #104 on: Thursday June 12, 2008, 12:21:57 AM »
Not as many pictures on this website, but this seems to have pictures of less severe cases.  It also has some good descriptions of the different variants.  My spots look like the one on the ankle, and I was diagnosed with Schambergs.  Good luck!

http://dermnetnz.org/vascular/capillaritis.html

Offline lari_iacob

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Re: Schamberg's?
« Reply #105 on: Friday June 13, 2008, 06:05:38 AM »
Thank you very much for your answers.The thing is that my lesions aren't so widespread.They look like round patches.I went to the doc and he told me i have a rash but it isn;t because they don't blanch with pressure and i have had them for a long time now.I don't know how are your "schamberg's" but mine in the morning are like orange coloured  and if i get strong emotional stress looks like new blood burst in the areas and they become red.does any of you experience that also?Can someone tell me if they have round,like circle lesions?And why are them like that? ???I am so happy i found this forum.i thought i was the only one. :'(

Offline koes0030

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Re: Schamberg's?
« Reply #106 on: Friday June 13, 2008, 09:37:06 PM »
My spots are more like you described, and aren't as widespread as in the photos either.  They are kind of round patches, but they occasionally shift around if that makes sense.  One is maybe 2"x2", and one is maybe the size of a dime... pretty small.  I have noticed that in the morning they seem more orange colored, but after I work out or stand around for a long time, they get more red.  Are your patches solid, or do they spread out into more of a ring-like shape?  If they are ring-shaped, there is a type of Shambergs called Majocchi or something like that.  Nobody seems to have any idea why patches become shaped the way they are, or why they appear in the first place.  Pretty frustrating  ???

Offline lari_iacob

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Re: Schamberg's?
« Reply #107 on: Tuesday June 17, 2008, 07:26:45 PM »
i don't know what do u mean by solid?They are lillte dots clustered toghether!so they are not solid patches!went to a derm she said eczematida purpuric after i went with a series of blood analysis such as full blood count  and other to see if any infections are present and all seemd allright!she suggested a looot of vitamin c and keeping my legs up as much as i can!when i asked when will they dissapear she sighed...not a very promising answer...and also disturbing:(hope to hear from u guys!!!some myracle therapy or something:) :-* :-*

Offline koes0030

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Re: Schamberg's?
« Reply #108 on: Tuesday June 17, 2008, 11:50:28 PM »
Sorry I described that kind of badly... mine are lots of little dots clustered together too.  They look kind of like blotches of red pepper spots, so they aren't really solid... but the spots are clustered together in one general area.  The Majocchi type spreads outward over time, and I read that sometimes the inner spots start to fade, so it ends up looking like a ring of red speckles.  My doc also suggested I take a lot of vitamin C, but I had to stop because it was hurting my stomach.  While I was on it, it didn't help much if at all.  Some other folks have posted that eating a lot of vegetables and foods with vitamin K seems to help.  But sadly it doesn't seem like anybody has found a miracle therapy.   :(  I keep looking back here every few days just in case somebody discovers something!

Offline dead_bird19

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Re: Schamberg's?
« Reply #109 on: Wednesday June 18, 2008, 01:19:42 AM »
I found this forum a few months ago and have finally decided to join and share my story with you all...sorry it took me so long everyone!!!

I started getting shamberg's when I was 15.  At first they were little red dots that appeared on my stomach...they then moved to my back, arms and legs.  At first I thought it was just a rash (even though it wasn't itchy) but finally after showing them to my parents they took me to the doctor and then the dermotologist.  The dermotologist told me it was a virus that would disapear by itself within 3 months and of course I was relieved...until a year passed and I still had them.

So I went back to the dermotologist and he told me that he had made a mistake and that I actually had Schamberg's...and that there was no treatment for it. 

I am now 20...since then it has disapeared from my back and arms and most of stomach however it is still on my upper and parts of my lower legs.  At the moment they look like they might be clearing up...I have tried Vitamin K supplements recently and I'm unsure if this is a result...these legions have given the appearance of disapearing before and coming back months later :( I'm thinking of trying something different maybe...I found this site yesterday.

http://www.herbal-treatments.com.au/herbs_schambergs_disease.html

I'm sceptical about the treatment...but I found the information on rutin interesting...I went to the health food shop to get some supplements yesterday but I couldn't find any...I'm thinking about ordering it online.  I just thought I'd share with you all, maybe someone has already tired it??? 

But I'm very interested in what nance did!!!  I'm thinking I might try that as well.

Offline lari_iacob

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Re: Schamberg's?
« Reply #110 on: Wednesday June 18, 2008, 08:28:37 AM »
Koes would you be nice to take a picture of your lesion so i can see how it looks like.Because after all i read i am really curious to see if they in any way ressemble mine!I would really appreciate it :-*

Offline lari_iacob

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Re: Schamberg's?
« Reply #111 on: Wednesday June 18, 2008, 08:34:55 AM »
Or anyone else...who is nice enough... :)

Offline Rachellia

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Re: Schamberg's?
« Reply #112 on: Wednesday June 18, 2008, 07:10:14 PM »
Hey everyone! I'm new here. I'm a 25-year-old female who was diagnosed with Schamberg's (via punch biopsy) 4 years ago, at age 21.

I had a massive outbreak that covered me in 3" diameter, starburst lesions from the waist down. My dermatologist said I was the first case she'd seen since 1976, and that there was no treatment. All the lesions spontaneously cleared after about 2-3 months.

Now, more than FOUR YEARS later, just when I thought I might be home-free, two, smaller lesions have cropped up on my butt and ankle. It's been about 3 days and they haven't gotten bigger (about 3/4 inch now) or more numerous, but I'm worried about what I will see over the course of the next month.

That said, I have a few questions for my fellow sufferers:

On average, how long do your outbreaks tend to last and how long do you tend to go with clear skin until another outbreak?

Were subsequent outbreaks less severe than your first?

Did you ever just have a spot or two at a time that never worsened/spread?

Lastly, have any of you women experienced clearance after going off birth control?

I've been on it for 9 years and feel it's done lots of odd things to my body. I am going off in two months and praying this stuff will vanish. For the record, I don't smoke or drink AT ALL, I'm a vegetarian, I'm on no other meds (OTC or otherwise), and I am a healthy weight.

EDIT: I'm making a new, question thread out of this.
« Last Edit: Wednesday June 18, 2008, 07:13:45 PM by Rachellia »

Offline lari_iacob

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Re: Schamberg's?
« Reply #113 on: Thursday June 19, 2008, 11:08:03 AM »
PLEASE SOMEONE POST SOME PICTURES! :'(I DON'T FIND IT EMBARASSING...I WON'T SEE YOUR FACE OR SOMETHING...PLEEEASE :'(

Offline Sunshine77

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Re: Schamberg's?
« Reply #114 on: Thursday June 19, 2008, 05:13:08 PM »
  It has been a while since I have posted here, so will fill you in on my progress.  I went to a Traditional Chinese Dr. and had accupuncture.  The spots disappeared.  Could not afford to keep going.   Spots came back. Then after a while I was introduced to "smoothies."  I would put a mango and a handful of spinach or romaine lettuce in the blender and make my smoothie.  After a few days my spots started to lighten.  Have not kept up the smoothies as I was on vacation, but intend to start.  In the meantime, I have joint and muscle pain.  It was mentioned to me to cut out gluten.  When I googled what gluten does to the body I found out that it creates a vitamin K deficiency.  I am curious how many of you are possibly gluten sensitive.  Do not assume you are not because you don't have digestive problems.  You would have to google "gluten symptoms" to see what a wide range it covers.
   Anyhow....if you are interested...it could be a possibility. ????????
Karen

Offline koes0030

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Re: Schamberg's?
« Reply #115 on: Saturday June 21, 2008, 05:29:28 AM »
Lari- I will try to take some pictures for you this weekend! 

Offline koes0030

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Re: Schamberg's?
« Reply #116 on: Sunday June 29, 2008, 05:53:37 AM »
I tried to take some photos of my biggest spot... they didn't turn out though!  Sorry... the spot on the front of my calf looks very much like this spot I found on the internet.  This is most definitely not my hairy ankle :)  Sorry I wasn't able to get any pictures of my actual spots.

http://dermnetnz.org/common/image.php?path=/vascular/img/capil4.jpg

Offline lari_iacob

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Re: Schamberg's?
« Reply #117 on: Wednesday July 02, 2008, 08:22:21 AM »
Thank you for your answer and photo...My lesions are similar to the one in the picture,but my question for you now is:what colour are them?Because some of mine are quite red and others more orange?If they are normally red in the beggining after how much time do they turn to orange? ???Can somenone answer me?Thank you

Offline roops22

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Re: Schamberg's?
« Reply #118 on: Monday July 07, 2008, 10:33:12 PM »
my derm said i have schambergs as well.  gave me this creme

which isnt doing anything.

he wants me back at the end of the month where they may do a biopsy. here are my pics,
i had them last summer, its seems to have gotten worse since then.  is this indeed schambergs  purpura?



i am a 34 yr old male.

thanks

rob

Or anyone else...who is nice enough... :)

Offline lari_iacob

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Re: Schamberg's?
« Reply #119 on: Tuesday July 08, 2008, 05:53:03 AM »
Yes it looks like mine.I can tell the real colour though from the pictures.My lesions are brown red-orange and they seem to fade in the morning but gain the redish colour during the day. I have tried to take a picture but my camera doesn't do a great job:(The pigmented areas have little dots in the center and borders:(I am trying a pentoxifilin treatment right now,..We'll see if it helps in any way.Thank you for your reply and your photos,hope to hear from u guys soon :-*