Author Topic: Schamberg's?  (Read 235768 times)

0 Members and 1 Guest are viewing this topic.

Offline roops22

  • Registered member
  • *
  • Posts: 13
Re: Schamberg's?
« Reply #140 on: Wednesday October 15, 2008, 09:40:52 PM »
went to the doc yesterday, biopsy came back negative, just confirmed schambergs.  doc gave me new creme, this one is called Protopic.  i go back in 2 months..other than that, nothings changed..

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

Offline Trisha21

  • Registered member
  • *
  • Posts: 2
Re: Schamberg's?
« Reply #141 on: Saturday November 22, 2008, 10:31:54 AM »
Hello

I'm new here as I was only diagnosed last week.  I have had a "rash" of and on for years - I am now 58 - mostly on my buttocks, but some itching on my shins with red spotting.  My GP just prescribed steroid creams and they did sometimes clear it up after a while.  I now always use Aqueous cream for washing in the shower (although I have tried other creams, lotions and potions in the past) I moisturize all over with Doublebase (just changed from E45 as I found the new pump containers separated the cream to oily and then thick) after showering.  I did also use a cortisone cream as well at night but now the dermatologist says this is a waste of time.


I found that I broke out in my "rash" for no apparent reason, the first time when I was 13 when no one knew what it was and I was isolated for 6 weeks as I was thought to have the plague at the very least!  Then again several years later and periodically from then on.  A couple of years ago I had a nasty sore patch on my aureole and I found that it seemed to be taken seriously and I was referred to a dermatology clinic.  The nurse specialist that I saw sent me for a biopsy as she thought I might have Pagets Desease.  The results were negative and it was then that I mentioned the "rash"  She was astounded that it had gone on so long and was so severe and called the doctor in to look. As my skin was very dry a  form of eczema was diagnosed and the washing with aqueous, E45 and cortisone regime began.  Because I had been referred to the  dermatology once I could phone when ever things got to bad and they would see me without going through my GP.  I have lost count of the number of times I have been in the last 2 years as the "rash is now there all the time.  My legs and feet are covered up to my knees - I  had a scan in August as the GP thought it was to do with circulation but I was told - no they are fine, lots of women my age have red staining but it is nothing to worry about.  When I went to the dermatology clinic in October they said enough was enough and did a biopsy,  which came back inconclusive, and sent me to see the consultant.  The "rash"  had been really bad for about 6 months and I was so depressed.  I felt dirty, and unclean (a throwback to when I was 13) I just sobbed and was hugged and reassured that I wasn't dirty at all and certainly not infectious.

Well I saw the consultant a week later and now I know what this "rash"  is - as easy as that - the consultant knew instantly.  I just fell in a heap and even he hugged me when I sobbed and sobbed.  After 45 years I have a name for the "rash"  It still covers my legs to my knees and from just under my boobs to half way down my thighs, my buttocks are nearly as bad as my legs and there are now patches of it on my arms but the consultant said he had never seen or heard of it on the face or neck so in that respect I am fortunate.

I am to continue with washing with Aqueous and moisturising with Doublebase but to stop the Cortisone cream as the consultant thinks that is a waste of time.  I cannot have Colchicine which might have an effect as I have heart decease,  I am to be measured for support stockings as that may help.  I have noticed on looking up Shambergs on the internet that Aspirin and Paracetamol may make Shambergs worse but I need a small dose of aspirin daily for my heart and a large dose of paracetamol for my osteoarthritis.  I eat a healthy diet and don't drink or smoke.  I use a non-biological washing powder (Persil)  What else can I do?

 
« Last Edit: Saturday November 22, 2008, 11:08:46 AM by Trisha21 »

Offline Tropicalfish

  • Registered member
  • *
  • Posts: 4
Re: Schamberg's?
« Reply #142 on: Wednesday November 26, 2008, 04:28:18 AM »
I was recently diagnosed with Schamberg's disease. My dermatologist said I could use topical or systemic steroids. Since I am a resident physician, I know the side effects of steroids and would rather not take a chance at having any of the side effects, such as thinning skin, osteoporosis, or mania. I did a literature search an found a case report of a man with Schambergs who was treated with Vitamin C 500mg twice a day, and Rutoside (rutin) 50mg twice a day. ("Treatment of progressive pigmented purpura with ascorbic acid and a bioflavonoid rutoside" Journal of Drugs in Dermatology, March 2006). His Schamberg's went away after a few months. I was skeptical about simple vitamins have much therapeutic effect as my training has biased me toward thinking that only pharmaceutical agents are effective. I thought I would give Vitamin C and Rutoside a try anyway. I have started this treatment and now am on my second week. It has lessened the amount of petechiae I have on legs, and the lesions are lighter. Hopefully it will go away after a few months in time for summer.

Offline Tropicalfish

  • Registered member
  • *
  • Posts: 4
Re: Schamberg's?
« Reply #143 on: Wednesday November 26, 2008, 04:36:45 AM »
I noticed my lesions are much lighter on my week off birth control, but then, it may be the vitamin C and Rutin regimen I have been on. I got my Rutin (rutoside) at Clark's http://www.clarksnutrition.com/


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.

Offline dolores

  • Registered member
  • *
  • Posts: 4
  • Gender: Female
Re: Schamberg's?
« Reply #144 on: Wednesday November 26, 2008, 08:06:17 PM »
hello - not noticed the birth control thing, but i'll look out.  I've also seen that study and tried Vit C and Paroven(Oxerutin) for the last year, but I've been a bit rubbish at complying really, started about a year ago but not been taking that regularly, will get back on it properly.  I think it did definitely improve my spots...albeit very slowly - possibly more that they went more of  a browny skin colour than bright red - certainly i've been able to get away with thinner tightds these days.  Which is encouraging, i'll start again properly and post back :)

Offline rudee

  • Registered member
  • *
  • Posts: 2
Re: Schamberg's
« Reply #145 on: Friday November 28, 2008, 06:43:08 AM »
First timer here...  looking for answers on the net and found this forum.  I'm 60, male, active, fit, but have those redish/brown dots on my lower legs... being near the beach and wear shorts 9 months out of the year lets a tan do the blending, but in winter I have to cover my legs.  Being a man, it is not as bad as a woman on the vanity issue...

Had a doctor (after 5 years) tell me what it is.  I don't think the clinic has any answers except 'live with it, it won't kill you', but I have to think, "what if it gets on my face"!  Not a chance from what I read. 

Had a previous doctor prescribe prednisone and some cream, that was years ago and it never really went away.  Being in the sun, I was leary of using topical grease with a pill.  Eventually I just let it slide till now. 

I came across the article that recommends 'Colchicine'.  Other than some runny poo, is there anyone other than that article that has had recent experience with this med?  The way I look at it, when the dots disappear so do the users of the forum.  You know how that works...., you go to the doc, he hands out the prescription and you go get it filled.  The doc was $150 (that's a month of all you can eat on the Dollar Menu)... plus the meds.  The plan was to go back to the the doc after the treatment, but why spend $$$ for another appointment!  So you never go back because "Hey, I'm fine, why go back and pay the doc to tell him that"?  ....because they won't speak to you on the tele...  The point is, once you find the cure and it works, why come back to the forum...?  There's some life to catch up on!!  So, my question again....  I'd like to try this Colchicine stuff and need a few comments from any listeners... 

As long as I don't get hair on my tongue and pee seafoam green, I'd try anything at my age...  except more of that 'sone stuff.   Thinking of doing vitamin C, rutin, and Colchicine at one time...,  put it all in a blender with some ice cream!

Thanks in advance for any info..
     
     - rudee


Offline alferret

  • Registered member
  • *
  • Posts: 1
Re: Schamberg's?
« Reply #146 on: Friday November 28, 2008, 04:28:18 PM »
Hi all  :)

Male, 42, relatively fit, ex smoker, occasional drinker.
My date with Shamberg's (capilaritis) started in Aug 2005 where I noticed a red'ish group of dot's on my right calf.
Didn't think much of it at the time and as there were no other symptoms it didn't worry me. But it started to spread to my ankles, the tops of my feet my thigh's etc.
Occasionally it would manifest it's self on the insides of my forearms.
After 2 years or so I decided to see my doctor who passed me on to a dermatologist which is where I found out what this condition is called. 
Told about the no cure its for life thing (which doesn't bother me as I'm not a vain person)
I spend upwards of 10 hrs a day on my feet standing by a machine and was told this could be a cause  ::)
I have been told to try flight sox which I have and they had no noticeable effect on my legs.
Lately I have notice my legs drying up quite a lot and now use Aqueous cream after bathing.
What I have noticed and although not a cure is that if I exfoliate it does ease it some what and when I get it on my forearms it goes completely.

 

Offline Tropicalfish

  • Registered member
  • *
  • Posts: 4
Re: Schamberg's?
« Reply #147 on: Sunday November 30, 2008, 03:35:12 AM »
to Rudee:

I'm don't mean to presume, but I would caution about being on colchicine without routine blood monitoring or the care of a physician, as colchicine can cause neutropenia (low white blood cell counts), thus making you vulnerable to very serious infections.
« Last Edit: Sunday November 30, 2008, 03:50:12 AM by Tropicalfish »

Offline rudee

  • Registered member
  • *
  • Posts: 2
Re: Schamberg
« Reply #148 on: Sunday November 30, 2008, 07:11:11 AM »
Thanks Tropicalfish,

    Perhaps I should stick with just the ice cream...    Recently I had my yearly physical and made it over to a dermo via recommendation from my primary doc.    The dermo did not recommend anything, and I went home and Googled Shamberg.  I'll be visiting my Primary doc again in January, but prior to that I want to send both docs my findings and skip over the 'sone' creams and pills if they are suggested. 

    Has anyone tried tan-in-a-bottle?  Wonder what color my ankles would turn?

     Still looking for any users of Colchine....

         - rudee
     


Offline Brazil

  • Registered member
  • *
  • Posts: 2
Re: Schamberg
« Reply #149 on: Monday December 15, 2008, 06:38:30 PM »
HI all,

I just started using colchicine(2x0,5mg) exactly like that portuguese articled posted by another brazilian... and my doctor is the own autor of that article!

about 3 years with Scham`s ....never tried nothing before to get rid of it... 

I hope i have good results because i think colchicine is the best ....maybe unique, chance to get better...

I will post here soon about how it is going...

See you!





Thanks Tropicalfish,

    Perhaps I should stick with just the ice cream...    Recently I had my yearly physical and made it over to a dermo via recommendation from my primary doc.    The dermo did not recommend anything, and I went home and Googled Shamberg.  I'll be visiting my Primary doc again in January, but prior to that I want to send both docs my findings and skip over the 'sone' creams and pills if they are suggested. 

    Has anyone tried tan-in-a-bottle?  Wonder what color my ankles would turn?

     Still looking for any users of Colchine....

         - rudee
     



Offline Tropicalfish

  • Registered member
  • *
  • Posts: 4
Re: Schamberg's?
« Reply #150 on: Thursday January 01, 2009, 09:05:01 PM »
Update on my Schamberg's

It's been about 6 weeks since I've started Rutin and Vitamin C, and I just have a few fading spots left on my legs. I'm so happy!! Hopefully it'll be gone for good.

Offline luigilula

  • Registered member
  • *
  • Posts: 5
Re: Schamberg's?
« Reply #151 on: Sunday January 04, 2009, 09:42:41 AM »
Hi all,   

I don't have any improvements in my legs.  I have been taking a supplement for vein support for about 10 weeks.  It's mainly Vit C and flavanoids. (I've been taking 2 capsules a day.  The bottle doesn't give a specific dose just a range to start off so I really don't know how much I COULD take.)  Plus in Nov. I added Vit D3 and Vit K to my regimen.  Also started taking high dose Vit C (Ester C). 

The only thing different is that the leg cramps I was getting more frequently have subsided.  Wearing support stockings/compression stockings was not effective.  During the summer I got a lot of sun and the tan did make the spots less noticeable but of course the tan faded now that it's winter.

My spots don't interfere with life but I'd certainly love for them to go away.  I never did try the Castor Oil soaks.  I'll hold off on the Colchicine for now. 


Regards,  LuAnn

Offline Antischam

  • Registered member
  • *
  • Posts: 4
  • Gender: Male
  • add me to your msn if u want!
Re: Schamberg's?
« Reply #152 on: Sunday February 22, 2009, 12:30:35 AM »
Hi!

I'm the guy who posted about the colchicine...


When I used colchicine, I got excellent results. The spots went away, and so the lesions, and this good condition of mine went over for more than a year after I stopped using the substance. But, sadly, it came back, with less power. Now I'm going to take colchicine again. Like I said, the disease came back, but weaker after the treatment and I think that it will fade away someday if I continue with this treatment.

(Ah... And I didn't have any side effects when I was taking this substance!)


Best Wishes (and sorry about this poor English!!!!  :P)
"Come here, please hold my hand for now
Help me, I'm scared please show me how to fight this.."
                                         Not now - Blink 182

Offline smile4cobra

  • Registered member
  • *
  • Posts: 1
Re: Schamberg's?
« Reply #153 on: Saturday February 28, 2009, 12:04:40 AM »
Hi, I've been doing a little research since none of my doctors or my dermatologist have answers for me. Seemingly, I may have Schamburgs but my doctor didnt even know what it was! All he said was "its most probably because your a bit over weight". Im over weight but Im not obese. It looks similar to some of the pictures I've seen posted. So can I email some of you with my pictures so that maybe you can tell me if what I have looks like what you have? I have these brown/redish dots that look like freckles all over my lower legs, calfs, ankles and the top of my feet. Its been like this for a few years and its only getting worse. Nobody seems to have answers to me. This is destroying me life  :'( Im a 26 year old female and I refuse to wear shorts or a skirt even when its over 100 degrees out here. I hate the summer because of this. I cant go swimming. When my friends have pushed me to go vacationing and swimming and tried telling me it only looks like freckles to make me feel better... the very few times that I did wear a bathing suit people were staring at my legs like Im some kind of sick person. I've had someone ask me if I have skin cancer! I dont have skin cancer. My dermotologist told  me that this doesnt effect my health and its just a vanity issue and I need to get over it. He gave me some steriod compound cream with sylic acid and all it did was dry my skin to a crisp. The stops are still there. I have another appointment coming up... I dont know if my new doctor can help me.  ???

Someone please give me some answers. HELP!

Offline lari_iacob

  • Registered member
  • *
  • Posts: 15
Re: Schamberg's?
« Reply #154 on: Tuesday March 10, 2009, 11:51:52 AM »
Don't worry. I am also 25 and this was difficult for me too...I coludn;t say that right now I am all Over this issue but i try to cope with it...If you want to stay in touch you can e-mail me on [email address removed]
« Last Edit: Tuesday March 10, 2009, 03:53:45 PM by totalfolly »

Offline roops22

  • Registered member
  • *
  • Posts: 13
Re: Schamberg's?
« Reply #155 on: Thursday April 30, 2009, 03:31:23 PM »
here is my update..these 2 pics posted july of last yr




and these taken today..i have nothing better to do since i got laid off last month.. >:(



i dont know why they are fading, i stopped all cremes and whatnot, i was a heavy drinker but since stopped..maybe
that helped?  ??? ???

Offline helene01

  • Registered member
  • *
  • Posts: 7
Re: Schamberg's?
« Reply #156 on: Sunday May 10, 2009, 10:29:19 AM »
Hey all, haven't been on this forum in forever as my schamberg's cleared up for over a year so i thought wheyyyy it's gone! well today i found the lesion on my ankle is coming back and so are the cayenne pepper spots.

The only thing i can say that clears up schamberg's is Vitamin C with bioflavonoid tablets 500mg and i also take Vitamin K tablets 100mg. Can't believe it, hope it doesn't come back for summer else im buggered...

However, i think in my case this is linked to depression as when i first got depressed i got Schamberg's and when i got through my bad patch of depression the Schmaberg's went too! hmmmm weird.

Don't use the colchicine stuff, through my experience all doctors and dermatologists are useless, nothing really works. I f we've all found something that helps the condition then why waste your money on seeing dermatologists who are stuck in their ways.

Offline mamaof7

  • Registered member
  • *
  • Posts: 1
Re: Schamberg's?
« Reply #157 on: Saturday May 23, 2009, 05:12:50 AM »
Hello.  I have had Schamberg's for years, but it wasn't diagnosed until recently.  I am getting a second opinion next week to make sure.  I noticed a definate connection with sunless tanning lotions.  It started on my legs and then went away, but would come back every year or two.  I now have had it for 12 mos. and have an 8 month old, so I didnt do much treatment until recently and finished nursing.  For some reason, this past 2-3 weeks, it has spread to almost my entire body.  The itching is driving me crazy.  Mine is also red/purple, not cayenne.  It starts as little red bumps and then inflames and becomes intensly itchy.  The only way I got rid of it in the past is to not scratch for weeks, but it is SO hard.  I noticed there is a large variety of symptoms.  Does anyone have a suggestion on what will calm the itching. I have tried steroid cream, cortizone, calimine lotion, benadryl cream and none offer a lot of relief.  Benadryl is probably the best.

Offline fe2283090

  • Registered member
  • *
  • Posts: 1
Re: Schamberg's?
« Reply #158 on: Saturday May 23, 2009, 05:22:42 PM »
Hey everyone. Im new to this website but as I was reading everyones stories, I felt in place. A lil about me, I've had pigmented pupuric demratitis about 5 yrs ago. But now its been impacting me the most. Im 18 yrs n I have these ugly red dots on my leg. Im so embarrased to wear shorts or dresses and now the summers is near :-\ a description of my legs; I have bright reddish arising on the outter side of only my left leg. They get pinkish in hot weather n red when im cold. Weird. I have tried laser but no work. I wonder if I have schamburgs. I have a derm. Appointmnt nxt wk. Does it sound familiar to anyone and if they have faded, what DID U USE?? Lol
Thnxsz   :) hope to hear from someone soon.

Offline luigilula

  • Registered member
  • *
  • Posts: 5
Re: Schamberg's?
« Reply #159 on: Sunday May 24, 2009, 05:23:18 AM »
Mine started about 1996 or 97.  I had tried to wax my legs (actually that sugar stuff) so I've thought it had something to do with that but I may have used a self-tanner then as well.  I had a biopsy and they called it .... oh, can't remember,but something to do with a response to inflammation. 

The first of the month I went to the derm for an unrelated issue but showed her my legs.  She called it something else and I told her I thought it was Schamberg's.    She offered me the usual lighteners, etc., which I declined. 

I have an appt. on June 1st to see about a vein surgery called Vnus.  My legs swell alot and the pigmentation I think, at the very least, is aggravated by that. 

If I was young like some of you are I'd probably be more aggressive in getting better results.  But at 50, I really don't care if someone thinks my 'dots' are unattractive.  Once, someone even asked me where I got the dirt on my legs!  I say to myself it's what makes me unique.

At this point, I'm not taking any medication for it.  I ran out of the vein support stuff and didn't reorder as I really don't think it made any difference.  And now that it is almost summer, I've stopped the Vit. D since I should get enough from the natural light. 

I wish some medical school would do a study so we could participate.  Maybe some sort of laser treatment??

Regards,

LuAnn :)