Author Topic: Schamberg's?  (Read 235769 times)

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Offline lari_iacob

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Re: Schamberg's?
« Reply #120 on: Tuesday July 08, 2008, 07:14:11 AM »
I guess the biopsy idea scares you:(I am sure that everything is ok for u.I am really glad u joined us.O...And are your lesions only on the lower legs,below the knee?Do they change colour when for eg you take a hot bath?I know that they are very distressing these marks :'(I am 24 :'(and i have to wear pants all the time,and in 2 weeks i am going at the seaside...and i am so embarassed :-\

Offline roops22

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Re: Schamberg's?
« Reply #121 on: Tuesday July 08, 2008, 11:39:26 AM »
i had bloodwork done, the biopsy doesnt scare me.  they are only on my right leg, below the knee.  i still hit the beach, the more of a tan i get, the less u see them  ;D they dont change color at all...

I guess the biopsy idea scares you:(I am sure that everything is ok for u.I am really glad u joined us.O...And are your lesions only on the lower legs,below the knee?Do they change colour when for eg you take a hot bath?I know that they are very distressing these marks :'(I am 24 :'(and i have to wear pants all the time,and in 2 weeks i am going at the seaside...and i am so embarassed :-\

Offline roops22

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Re: Schamberg's?
« Reply #122 on: Wednesday July 09, 2008, 12:24:02 AM »
take some pics please

. 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 :-*

Offline lari_iacob

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Re: Schamberg's?
« Reply #123 on: Wednesday July 09, 2008, 06:27:33 AM »
I will try to take some photos but they appear blurry.What kind of bloodwork have u done?I've done some myself but maybe they are not conclusive ???

Offline roops22

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Re: Schamberg's?
« Reply #124 on: Wednesday July 09, 2008, 12:48:10 PM »
honestly, im not sure. when i went to my primary care doc, he didnt know what it was, so they took blood.  i guess its whatever the routine bloodwork is..

I will try to take some photos but they appear blurry.What kind of bloodwork have u done?I've done some myself but maybe they are not conclusive ???

Offline lari_iacob

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Re: Schamberg's?
« Reply #125 on: Thursday July 10, 2008, 03:31:34 PM »
This is a close up of one of my lesions...some of them are just like 3-4 petechiae grouped toghether ,others are largersome are red,some are orange,,,

Offline roops22

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Re: Schamberg's?
« Reply #126 on: Thursday July 10, 2008, 04:38:18 PM »
are they all over your legs?  yours dont seem to be as bad as mine  :'( you need to get some color on that leg, it makes them not as noticeable

This is a close up of one of my lesions...some of them are just like 3-4 petechiae grouped toghether ,others are largersome are red,some are orange,,,

Offline koes0030

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Re: Schamberg's?
« Reply #127 on: Saturday July 12, 2008, 02:56:52 AM »
Sorry it has been a few days since I have been able to check back.  The pictures that both of you posted look very much like mine!  Mine have been similar in size to Rob's, with the same kind of cayenne pepper spots that both of you have.  With regards to color, they start off red/brownish, but as they start to fade they turn more of an orange color.  I have had some that come and go within a few weeks, but I have had a big one on my calf that has been there for nearly 2 years now!! :(  So the length of time seems to vary quite a bit.  All of mine have been on my legs... I had one small one on my thigh, but the rest have always been below the knee. 

I feel your pain Lari... it's really difficult in the summer months!  It's so darn hot out, but it's embarrassing to show off my legs.   :'(

Offline roops22

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Re: Schamberg's?
« Reply #128 on: Saturday July 12, 2008, 09:56:41 PM »
mine look to be fading, at least the ones on the back of the leg.  i will keep using the creme, and when i see the derm at the end of the month, i will ask about the vitamen k stuff

Offline Joan

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Re: Schamberg's?
« Reply #129 on: Friday July 18, 2008, 03:02:24 PM »
Dear Antischam,

I am a 46 year year female and just 3 weeks ago was diagnosed with Schamberg.  I read your post and was inspired wth your story and the information you shared.  I see that your lasting posting is more than 2 years old.  How are you doing, are you still taking the Colchicine drug?  I would very interested to hear from you, thank you!

Offline Joan

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Re: Schamberg's?
« Reply #130 on: Wednesday July 23, 2008, 12:09:36 PM »
Thx for sharing your story regarding Schamberg's - I was diagnosed about 4 weeks ago with Schamberg's and share everyone's frustration and distress.  In doing some research on the caster oil packs - its says that it should not be directly applied to the skin - it sounds like you applied directly - is this still working for you? I would really appreciate any additonal information you can provide.

Thanks Joan

Offline alc761

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Re: Schamberg's?
« Reply #131 on: Sunday July 27, 2008, 10:26:45 PM »
Has anyone had this Schamberg's disease go away and if so, what helped and what hurt it?  I was just diagnosed with this and it is so depressing!  I have red dots all over the bottom part of my legs.  im praying it was a medicine reaction from the topamax I have been taking for over 2 years for prevention of migraines.  I have quit taking it and Im hoping this rash will go away. 


Thanks, Amber

Offline roops22

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Re: Schamberg's?
« Reply #132 on: Monday July 28, 2008, 10:08:05 PM »
here is my update, i have been using the creme and it doesn't seem to be doing anything, if anything the tan i have been getting at the beach makes them look less noticable  ;D however, i asked him about colchicine, and he said it has numerous side affects(1 being bad diarrhea :o )  and wont work for everyone.  im glad i asked him though, im down to the creme one time a day, and he wants to see me in 2 months.  im going to vegas around that time, so i hope they will be gone or not too noticeable by then.


http://www.einstein.br/biblioteca/artigos/Vol2Num3/Novo%20Trat%20Bem-sucedido.pdf   (with pics before-after)

YOU MUST READ THIS!!!!   I showed this text to my doctor and he liked it. The article is about the colchicine.

Im taking colchicine and im getting well, (not so fast like the woman in this article) and saying goodbye to my spots (before the treatment, they have reached my right arm!). I decided to post because i want to help everyone :bighug: and spread this new amongst the unlucky schamberg's  carriers! Please try!! 

Ps: Sorry about my poor english...



Offline lari_iacob

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Re: Schamberg's?
« Reply #133 on: Thursday September 04, 2008, 12:11:48 PM »
So i haven't heard from you guys in a long time?how has it been>?For me it is the same thing...no improvement:(do you "look" any better?Hope the see some new posts:)

Offline roops22

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Re: Schamberg's?
« Reply #134 on: Tuesday September 16, 2008, 03:31:04 PM »
i am going for a biopsy on sept 29th.  i stop using the creme he gave me and starting using vitaman K creme.  its helping a little i guess.  summers pretty much over at this point, so its no more shorts, but i would like to see these gone by next year..

So i haven't heard from you guys in a long time?how has it been>?For me it is the same thing...no improvement:(do you "look" any better?Hope the see some new posts:)

Offline koes0030

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Re: Schamberg's?
« Reply #135 on: Tuesday September 23, 2008, 02:43:02 AM »
It has been a while!  Unfortunately two of my spots are starting to flare up again, just when I thought they were on the way out.  One is behind my right knee, though it is starting to spread over to the side of the knee.  The other is on my shin.  They aren't in exactly the same places as they used to be, but they're "shifting" around.  I haven't been doing anything differently since they started fading... my diet is the same, and I'm using all the same creams.  At least we're heading into winter, so we won't have any problems wearing pants to cover up :( 

Offline roops22

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Re: Schamberg's?
« Reply #136 on: Tuesday September 30, 2008, 01:15:40 AM »
biopsy done today, results in 2 weeks

Offline lari_iacob

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Re: Schamberg's?
« Reply #137 on: Friday October 03, 2008, 07:21:36 AM »
biopsy done today, results in 2 weeks



 :-\Hope everything is fine and let us know about the results!Kisses and hope to hear good news from you :-*

Offline skin12

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Re: Schamberg's?
« Reply #138 on: Wednesday October 08, 2008, 12:53:27 AM »
Hi All-

I'm new to the forum, but have been reading some of the experience's here and felt that I should share my story.  I'm a 30 year old male, and about 4 years ago developed schamberg's disease on both of my lower legs... mainly my feet.  For more than two years I relied mainly on self-diagnosis (not smart) and finally confirmed with a dermatoligist 1 1/2 years ago.

I really can't say anything but to validate what the other success stories here have already said, VITAMIN K!!! seems to be the solution.  On top of this, I started running, cycling, and being more physically active to ensure blood flow in the area was adequate.  Like most of the others posting here, I was able to tie new outbreaks almost exclusively to times when I was on my feet for long periods of time, and mainly when in a stationary position.  In my opinion this is a combination of poor blood flow, allowing blood to pool in the lower leg area, along with the capillary weakness allowing the blood to leak into the skin.

After I starting increasing my activitiy level I saw improvement, but the real breakthrough came when I started eating plenty of Vitamin K rich vegetables (I guess I got lucky when I started dating a vegetarian :).  I had already started to increase my veggie intake, but the more I ate the better it got... to the point where spots I had for years disappeared for good relatively quickly.

I won't lie and say that a spot (a very tiny spot) here or there doesn't show up, but I know that within a 2 day timeframe it will be gone.

I'd urge everyone who hasn't tried it to give this a shot.  The worst case scenario is that you start to live a healthier lifestyle. 

The main vegetables in my diet are spinach, brocolli, tomato, red / yellow pepper, and onion.  The spinach and brocolli give a bump in vitamin K, while the tomato and peppers have Vitamin C and Bioflavanoids (other potential helpers).

Hope this helps!

Offline lari_iacob

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Re: Schamberg's?
« Reply #139 on: Wednesday October 15, 2008, 11:15:58 AM »
biopsy done today, results in 2 weeks

Are you ok...we haven't heard from you?How did the results came back?I really hope everything is allright with you