Author Topic: Schamberg's?  (Read 130047 times)

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Offline dolores

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Re: Schamberg's?
« Reply #80 on: Monday February 26, 2007, 09:44:31 PM »
Hey all,
Wow, it's been a while, my spots are still the same - I think Sarahannette has really touched on something with the blood thinning. I know that my spots started to appear at the age I began drinking..and def get worse with alcohol..unfortunately! This Vitamin K thing sounds promising anyway, I'm going to have a go introducing more of these foods to my diet - I'd watch out for using supplements though, overdoses can cause serious liver problems! I had a look at the mechanism of clotting action in my pharmacology book and apparenty calcium ions are also needed with vit K for certain clotting factors, which is worth considering..but I think it's less likely people would have a deficiency in this.  Anyway, ace discovery sarahannette, I'll let you know how my new diet goes - it's going to be hard, I live in catered halls at uni that don't provide much dark green veg! And the alcohol thing...

Oh and by the way, I tried the camoflage make-up thing..it does cover it up fairly well..but I hardly ever use it cos it takes so long to apply and comes off on all my clothes despite the setting powder. Seemed to be waterproof in the shower, but I'm not brave enough to try it swimming in public!
« Last Edit: Monday February 26, 2007, 09:46:58 PM by dolores »

Offline miszphi

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Re: Schamberg's?
« Reply #81 on: Tuesday April 03, 2007, 02:48:58 PM »
wow I am so glad I found this website! I am a 14 year old  African American female. I have suffered from Schambergs for about 2 and a half years now. I hope it goes away one day. I am currently trying colchicine. I am also going to look into the vitiamin K. But my doctor said to not try them at the same time if you are taking supplements so I guess I am going to do it the more healthy way by eatting foods rich in v-K. Its getting close to the summer and im kind of getting neverous but its okay becuause this a cure out there somewhere and that there is HOPE. To everybody who is kind of depressed by this like me keep your hopes up and keep trying.

~philicia~
theres hope!

Offline Repete03

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Re: Schamberg's?
« Reply #82 on: Monday April 23, 2007, 04:51:50 PM »
I was diagnosed with this Schamberg's? also called chronic pigmented purpura by my hematologist/oncologist who saw me for many years. It is a very frustrating disease? This affliction began for me at the age of 7 and was a massive all over body breakout. It eventually regressed to just my lower extremeties but caused much embarrasment for me as a young boy. I would not wear shorts in public until my early 30's (I am 38 now). I still live with this thing...comes on as a bright red spot, varies in size, and eventually browns and fades after a long time. I also have not noticed any correlation between any life experiences and it's onset, only that it is not nearly as noticeable as it has been most of my life. I am grateful for that...I can now wear shorts in public. I do still get them, but getting sun on them seems to help. I feel for all of you afflicted with this mystery disease and share the frustration for the lack of treatment and understanding of it. It also seems to be a very loose diagnosis these days for something as rare as it seems to be. Just because you have spots of some sort does not mean that this is what it is! Some of you nailed it with your symptoms and I believe share the same affliction. Would love to hear/read more!!!

Offline miszphi

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Re: Schamberg's?
« Reply #83 on: Saturday May 19, 2007, 10:45:11 PM »
yeah... I think sun does kind of help my spots I guess tanning seems to make them fade.
« Last Edit: Thursday June 21, 2007, 04:33:27 AM by miszphi »
theres hope!

Offline green

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Re: Schamberg's?
« Reply #84 on: Friday July 06, 2007, 01:22:50 AM »
Hi everyone. When I was first diagnosed with Schamberg's I poured over websites looking for alternative therapies to treat the condition. I did not find any info on the web, but I did find my cure. Not sure if it will work for everyone, but it worked for me and I wanted to share it with everyone out there. I have written a lengthy description of it on my blog but in short it was bioflavonoids. Read more here.

http://www.bigfluffyclouds.net/display/ShowJournal?moduleId=1406186&categoryId=120225
« Last Edit: Saturday July 07, 2007, 11:18:36 PM by green »

Offline helene01

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Re: Schamberg's?
« Reply #85 on: Friday August 31, 2007, 05:33:01 PM »
Hey all.

A couple of months ago i went to the doctors with what i thougth was just a mild dose of eczema. I had dry areas of skin on my left leg..but the worrying thing is i had a concave red patch on my right knee. The doctor diagnosed me with ringworm. He prescribed me Lamisil cream and said the rash should clear up in a couple of months. However it did not....i kept buying Lamisil at a pharmicists as i go to college so i couldnt keep leaving lessons to attend doctors appointments.

The patch on my knee went about 2 months ago. However the dry patches of skin would gradually fade to a brownish colour which i thought was a sign of healing. However about 3 months ago i noticed red spots appearing on my shins.I only had perhaps 5 spots at first then it started to spread around my ankle and onto my other leg (although this leg is not as bad). I also used to get chronic aching in my lower legs and aching around my knees which apparently was due to bad circulation. The rash is only on my lower legs and ankles...and its at the back of my knees..i just hope it doesnt spread anywhere else!

Anyway i decided the doctor was wrong! so i researched on the net and found i had all the symptoms of schamberg's disease. Yes..i'm devastated as there's no cure.

So yesterday i went to the doctor and he basically did not know what to say. He said he'd seen nothing like it and did not know what it was (that makes me feel a whole lot better!) and he's supposed to be a specialist in skin rashes. So i told him about my research and he looked it up on the net with me and was surprised. He said 'i've never heard of schamberg's disease' and was surprised that its a rare disease. He's referred me to a dermatologist but i may not get an appointment for 3-4 months so im hoping it does not spread rapidly.

So ive purchased some 500mg vitamin c tablets but after researching on the net...apparently it thins out the blood?

So ive now decided to try out taking large amounts of vitamin k by eating certain foods.....and ill keep you posted on how it helps.

I just feel so frustrated.....and distressed.

Another thing is that on a website it said schamberg's disease may be caused by a virus...well ringworm which i had on my knee is a fungal infection so im wondering whether this may have caused it (although i would have thought schamberg's would have cleared up after getting rid of ringworm :S). I also read that exercise may be the cause which ive been using an exercise machine to work out....so im going to give up on exercising for 2 months to see if there's any improvement.

I suppose i'll just have to eliminate all factors 1 by 1....


Offline dgranny

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Re: Schamberg's?
« Reply #86 on: Tuesday September 11, 2007, 07:52:10 PM »
I was diagnosed with Schamberg's a week ago. I'm 69 years old, and have never had any skin problems. There was somewhat of an itch the first few days, then the blotches that looked like hives. After a couple of weeks I went to my dermatologist, & he diagnosed it immediately. I was shocked to learn I had a DISEASE! and that it would pretty much be permanent. I had originally used a vinegar & water foot soak & thought that might have caused some cell damage, as my feet looked burnt and extremely dry to the level of the "soak".
My doctor didn't think there was anything to that, but that he had seen it brought on by the type of diauretic I had been on for years! I thought by getting off this medicine the rash would clear up, but no such luck. It now covers the entire front of my calf, with blotches all around the back.

I had no problems before the vinegar soak. Has anyone out there heard of a connection from this?

dgranny

Offline sunshinegirl

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Re: Schamberg's?
« Reply #87 on: Friday September 21, 2007, 10:48:34 PM »
Hi

I have had my spots for 7 or 8 months now and like everyone else didn't bother seeing anyone for about six months because there is no itching.
Mine faded significantly over winter but are coming back now with a vengeance (just in time for summer - yay!) I haven't noticed any particular diet or other causes, but I am going to give the high vit K thing (low alcohol  :(  ) a go.
Just for interest, last summer (Nov-ish) I tried one of the new tanning moisturisers on my lower legs, vanity finally struck and I wanted to wear 3/4 pants without white legs hanging out the bottom. It was only after this that the Schamberg's showed up. I also have a friend (male) who tried it last year and he has also developed Schamberg's!!?!??!?!!? Has anyone else seen or heard anything like this?

Anyway it was wonderful yesterday to read all the tales so similar to mine and to learn of a natural possible help. So Thanks!

Clare

Offline helene01

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Re: Schamberg's?
« Reply #88 on: Sunday September 23, 2007, 06:28:41 PM »
Just to let you guys know...

i purchased some vitamin k cream..and my spots are gradually getting smaller and less purple/red.

i tried the vitamin k diet which started to work but i hate most of the foods so i gave up.

and thinking about it....i tried some moisturising tanning cream..so maybe theres some connection.

Offline spottedinct

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Re: Schamberg's?
« Reply #89 on: Thursday October 18, 2007, 04:19:55 PM »
Hi- I've had what my derm. calls "an over the top" case of capillaritis for almost 2 yrs.- I've tried many things and have just finished 2 mths. of super bioflavanoids(mentioned in big fluffy cloud site)- when I ordered them from Rockwellnutrition.net or .com, they invite you to email with nutritionist there to help with your problem- I got an email right back with recommendations- which I followed and she will be checking up on me.   Of course, so far- it hasn't worked!  but maybe it will take a few more months-
I have them really bad on my right leg but also they are all over except the neck and face.  I really have to concentrate on the vit. K eating thing and see what happens then!

Offline helene01

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Re: Schamberg's?
« Reply #90 on: Saturday October 20, 2007, 01:40:36 PM »
Well just to inform you of my progress...or no progress lol

The vitamin k cream which i purchased off the net does actually help to reduce the size of the spots and fades them. It also helps clear up the rusty patches i have. But as im getting rid of some patches...the rash is spreading..so now its not only on my shins but its working its way up to my knee caps and the back of my legs  :'(

Anyway ive just ordered some vitamin k capsules offline....im convinced vitamin k is the answer lol.

I have my dermy appointment next week....i havent yet been diagnosed with schamberg's but i know it is schamberg's so tbh i think itll be a wasted journey. But i need to have a blood test to see whats actually up with me.

I also noticed....stress plays a big factor in the rash spreading. If i stress the day before about my legs then the next day itll be bright red/purple-ish colour. So i reckon hormones could actually be playing a part and for the women: whenever im on my period it really does flare up..so again..must be to do with hormones.

Offline texas mama

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Re: Schamberg's?
« Reply #91 on: Friday October 26, 2007, 01:56:17 AM »
today my dermo said i have Schaberg's.  prognosis seemed pretty glum.

2 mos ago, i thought it was a patch of poison ivy, as i had been crawling in the foliage to put up Xmas lights.

about a week later, if formed a perfect circle, did not itch.  I showed it to a pharmacist, and several pediatrician friends, who all said ringworm.

i got over the counter fungicides, which didn't change it at all, so today i went to the dermo.  He said Shamberg's and just gave me some cortisone cream.  which probably won't do anything.

looking up Schamberg's on the net, my mark looks nothing like it.

It is red/magenta, not orange/brown

it does not itch., has almost no feeling.

it is raised up from the skin in a circle, about 2.5" diameter.

No other marks anywhere.

It is on my calf, and "dotted" like the descriptions.  I'm a 45 yr old female.  no one in my family has had this.

I'm getting a 2nd opinion monday.

Offline texas mama

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Re: Do You Have Schambergs?
« Reply #92 on: Friday October 26, 2007, 02:03:13 AM »
    Hi To All With Schambergs,
         My daughter was diagnosed with Schambergs and I have some questions. Did most of you get blood work done? Someone has mentioned the high Vitamin K diet. Have others tried it? Results? Has anyone out there gotten pregnant with Schambergs? Did it get better during pregnancy or worse? What's up with the leg pain? From what I'm reading it shouldn't ache? Is this untrue? Has anyone gotten it on their face? Again, the literature says no, but I want to hear from patients!   thanks so much!
                                                                           Texas Mama

Offline helene01

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Re: Schamberg's?
« Reply #93 on: Friday December 14, 2007, 05:06:32 PM »
Well noone has posted in this topic for ages...so i will

Texas Mama as far as i know Schamberg's does not affect pregnancy. Ive not heard ofanyone getting it on the face..and to answer your question i did have aching in my legs until i read somewhere that it is psychological and since then i have convinced myself it is and the pains have stopped.

Anyway i shall tell you of my visit to the dermatologist (what a complete waste of time!). In the uk you have to be referred by your doctor and have to wait months for a free consultation - i waited 3 months for mine.

Anyway the woman knew what it was (just like i had predicted -schamberg's) but i her exact words 'could not remember anything about it' so the whole appointment was pointless. She said theres no cure etc and didnt tell me anything new, just to keep taking consuming lots of foods with vitamin c.

So i purchased vitamin C tablets and they have had no effect. Now i did try the vitamin k diet but could not keep up with it as the foods were boring and i saw no difference. So i thought ill purchase vitamin k tablets instead (they dont sell them in stores around here) from the net...i tried them and they made no difference.

So looks like my quest for finding a cure is still on. Also i just wanted to ask other people who have schamberg's:

Do yo find that you are cold alot? and do you pick up colds and flu easily? because im always cold, im always ill so im puttin it down to the fact my blood is messed up.

Offline miszphi

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Re: Schamberg's?
« Reply #94 on: Sunday December 16, 2007, 04:52:18 PM »
hey i was on that big fluffy clouds blog and was reading a comment that someone had posted "

When I was diagnosed with shambergs and told it was incurable by a member of the AMA. I looked elsewhere for a cure and found an inexpensive one that works for me.

After research, I discovered that schambergs has 3 stages that lead to the red rash on the skin. So my treatment includes treating those three stages.

1. Thicken the blood so it won't pass through the weakened capillaries to the surface of the skin. Diet included Vitamin K foods. Ate spinach, mustard greens, turnip tops, etc....
2. Strenghthen the fragile capilaries with plenty of Bioflavinoids. Took vitamin C with biofavioids twice daily. Also would ocassionally eat the white pulp of lemons, oranges, grapefruit, etc... which are sources of bioflavonoids.
3. A month after doing step 1 and 2 I took the advice of my massauge therapist and treated the surface rash with caster oil packs. She thought the oil would stimulate the lymph system to flush out the toxins and red pigmantation. It worked. The caster oil,also known as the Palm of Christ, does work to stop the imflammation. I soaked flannel in caster oil and applied it to my legs about five times for two to three hours, while elevating my legs.

I teach high school art and had considered retireing because the long hours of standing on my legs had made the red spots worse. Once again I can stand all day. My legs have cleared up except for the faint first spot that appeared on my leg 4 months before I had gone to the dermatologist. I should have gone sooner, instead of trying to treat the skin rash with products that did not work.
Things that didn't work:
If I had known it was Schambergs I never would have treated the first spot with Vitamin E, because E thins the blood and contributed to the problem of the blood running through the capillaries. Neither Emu oil or cortisone creams helped control the problem.

Visited The dermatologist today and told him my three part solution. He said to definately keep taking the bioflavonoids combined with Vitamin C every day and that he had heard about the miracles of caster oil.

theres hope!

Offline koes0030

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Re: Schamberg's?
« Reply #95 on: Saturday March 01, 2008, 05:45:46 AM »
Hi all,

I just stumbled on this forum last night when I was doing research online... I was recently diagnosed with Schambergs disease.  Fortunately my dermatologist was able to identify it right away... but I was very disheartened to learn that there isn't any effective treatment.  my doc recommended that I take large doses of Vitamin C, which I have been doing without success.  I currently have two spots of Shambergs.  One is on my shin, and another is behind my knee.  Both started small but have been getting progressively larger.  They seem as if they shift or float around.  With spring fast approaching, I'm getting fed up.  So I was really happy to find this site.  I am planning to try a diet with more vitamin K, and also vitamin K creams to apply to the spots.  I know this is no guarantee, but I'm so happy to have a little bit of hope!  Thank you all so much for the info you have provided here.  I will post back with my progress!!

Offline luigilula

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Re: Schamberg's?
« Reply #96 on: Thursday March 20, 2008, 04:56:04 PM »
I have not received that official diagnosis though I am absolutely positive that this is it.  I first noticed it in 1996 as a speckled area on my calf.  As of today it is pretty thick and beginning to show up above the knees. 

I have poked my head into this forum over the months (years?) to see if anything new was going on, being tried, etc.  I am going to try the Vit. C/bioflav. & castor oil thing to see what happens. 

I 'know' being on my feet alot (nursing) has not helped.  My legs swell easily (the cardiologist said it wasn't my heart but probably internal vericose veins) and of course the blood pools then leaks into my skin.  Viscious cycle.

The attached photo is dated wrong but is within the past couple years.


Offline sunshinegirl

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Re: Schamberg's?
« Reply #97 on: Friday March 21, 2008, 03:31:10 AM »
Hi

Just a quick update. 6 months ago my Schamberg's was increasing (late winter / early spring) I started to include lots of vegies (plenty of celery sticks) and now have no patches at all. It may be co-incidence, but thought I would share my success.

Clare

Offline miszphi

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Re: Schamberg's?
« Reply #98 on: Thursday April 10, 2008, 03:03:50 PM »
hey haven't posted in a while.

So i tried the colchicine and didn't see much difference. Although i saw fewer red spots i still had the dark ones.

Has anyone else found that they tend to bruise easily?? I had gotten a bruise like 3 weeks ago and i still seem to have it. It is also still sore!

I am taking HI-BIO-C supplements that contain 500mg of vitamin c and citrus bioflavcomplex. Also they have rutin and hesperidin in them. I have took them for about 2 weeks. They seemed to have faded a little but that just might be my imagination. I have heard that supplements take time so I'm not rushing.

I am about to start the vita-k thing since a lot of people on this forum have had much success with this clearing up the disease.
theres hope!

Offline koes0030

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Re: Schamberg's?
« Reply #99 on: Friday April 11, 2008, 02:42:04 AM »
I have found that I bruise easily too... I never used to as a child, but I totally do now as an adult.  I've been wondering if this and the Schambergs are related... schambergs = weak capillaries = bruising... maybe?  I also have some bruises that have taken an insanely long time to fade.  I have one spot where I really clobbered my calf against the car door... I can still see a faint mark a year later!

I have been trying vitamin C for the last 2-3 months, and have also been trying Vita-K cream.  Two of my spots are fading, but my biggest one is being more persistent.  I have a hunch that the Vita-K cream has been helping more than the vitamin C.  I was recently told by my doctor to stop taking the Vitamin C because it is causing me stomach troubles... so we'll see what happens with just the Vita-K.