I have Schamberg’s Disease. I think.

I have diagnosed myself with Schamberg’s disease. This is not for reasons of hypochondria or making things seem worse than they really are – it’s because the doctors I have seen for this mystery rash over the past three years have proved themselves to be utterly useless. The Internet, however, has come through for me yet again. Lovely Internet.

Anyway, knowing how much I’ve valued any scrap of information about this, any personal experience, and any photo of the condition, here’s my experience. I hope it’s useful to someone.

~

December 2006: I noticed a small patch about half an inch in diameter on the top of my right foot, near my toes. It looked like a rash, but it was an orange-brown colour, almost rusty; it didn’t fade under pressure; it didn’t itch, and it wasn’t flaky in any way. It looked like it was under my skin. Like every other potential ailment, I completely ignored it. For a year.

It got bigger.

~

December 2007: The patch now covered an area a couple of inches square. Still no symptoms – if I never, ever looked at my feet, I would have no idea it was there. However, it now had some brothers forming around my ankle – both sides – and also on top in the crease where my foot joined my leg. I ignored it.

~

March 2008: I go to the doctor with an ear infection and while I’m there I get my foot out and ask what’s going on. He looks confused. He diagnoses an allergy to something, most likely to washing powder. We both knew he didn’t have a clue, really, but seeing as I was ignoring it anyway, I didn’t mind.

~

June 2008: Brown patch mayhem, as the ‘rash’ spread up my shin – and started to make an appearance on the top of my right foot as well. I decided to give the pharmacist a try, who took me into a little diagnosis room (cupboard), looked at my sandled foot, rubbed his beard, and charged me a lot of money for a very small tube of fungicide cream.

This made no difference.

I went back to the doctor. He pretty much shrugged. It wasn’t itching or causing me any physical distress, so…well, *shrug*, I guess.

~

July 2008: With brown speckled patches now running over both feet, both ankles and both shins, I was starting to get a bit miserable. Still not worried – just miserable. I just hated the way it looked. I tried sun, no sun, no shaving, eczema cream, treating all my shoes and clothes and bedding with anti fungal stuff, and massage. None of it made any difference.  I made an effort to see if anything made it worse, and it seemed that after a bath or shower the patches were brighter and had a redder tinge. That didn’t really tell me anything though, as most of me went red in the bath.

I admitted defeat and made an appointment with a doctor. A breakthrough! His diagnosis: I was rusting. Iron was leaking from my blood cells and through my veins, and gravity was making it gather around my ankles and shins.

Slightly dumbfounded, I repeated “I’m rusting?”, while the doctor, satisfied that he had made a diagnosis and was ready for the next patient, printed me out a prescription for a mild steroid cream which I was to apply sparingly every evening.

Well, it seemed promising. Weird, but promising.

~

But something didn’t seem right. I couldn’t accept that I was simply rusting and it was gathering around my lower joints – I had never, ever heard of this happening before. Ever. To anyone. Ever. More importantly, after three weeks of regular use, the steroid cream was doing nothing at all.

I started researching skin conditions online, especially of the feet and lower limbs, clicking on page after page of rashes, sores, fungal infections – with some pretty stomach-turning sights along the way – and searching for every combination of words I could think of  to try to find anything to do with leaking blood cells, and rusting skin. No luck whatsoever. In the meantime, the patches seemed to stabilise, but certainly not lessen in any way.

Years passed.

~

March 2010: I was watching a tv show on Channel 4, laptop on my knees as usual, when a woman came on with a skin complaint – nothing like mine (it was a type of psoriasis) but the narrator said something about being able to look up more skin complaints online. Worth a try, I though.

And there it was. I just stumbled across it by chance. Lichen Aureus.

Finally I had something to go on. It didn’t look exactly the same as my condition, but it was the closest I’d seen. Time to do a little more research…

~

I found this page. See the guy’s ankle on the lower right? That’s what mine look like. Reading on, I found the description for Schamberg’s disease. Bingo, I thought. My research switched to that.

More pages, more photos, but I am satisfied that this is the condition I have. And now all I have to do is go back to the doctor and tell him. Maybe. I’m not sure he deserves to know. I’m mad at him for never making a referral to a dermatologist at least, although going on what other people have said, even they shrug and just prescribe steroid creams with the advice that “this won’t work”.

So. Cure? Any hope? No, in a word – certainly not by prescription medicine anyway. There is some research, however, that certain bioflavonoids taken in supplement form may help, as they can strengthen cells and veins. On this basis, today I’ve started taking the generally recommended Quercetin (naturally occurring bioflavonoid) and Bromelain (an enzyme found in pineapple stems that aids absorption) as a combined supplement. I’m taking 1g a day, which seems to be the maximum dose recommended. I’m going to monitor the sexy rusty rash over the next two weeks and will update accordingly…

Oh, and my feet? See below. The patches are darker than they appear, I think the flash lit me up a bit too much. I also have this all up my shins – but my legs are hairy today, so no photos of those, I do have some standards…though admittedly they’re not high enough to actually shave my legs.


 

UPDATE – 6 MONTHS LATER (WHAT? I’VE BEEN BUSY…)

Well, unfortunately, I never saw a difference in my feet or legs after taking the Quercetin for a month. Maybe you need to take it for a long, long time to help, but it seems quite expensive for an unlikely cure. It doesn’t seem to have gotten any worse in the past six months though.

So that’s me out of ideas. Anyone else got anything?

 

 

75 thoughts on “I have Schamberg’s Disease. I think.

  1. I’m 41 – I’ve had this for 11 years now. Similar story as yours only…mine is triggered by standing for long periods and/or alcohol and sun exposure. I guess I’m fortunate that my rash stays at bay but wouldn’t it be nice to go on vacation and lie on the beach with a margarita! Well – I can’t. I tried it and oh, what a mess. Mine is also painful and itchy when it breaks out – it then fades to the rusty spots and then disappears in about a week. So, I’m good as long as I don’t drink, go in the sun or attend any concerts. I also love the fall and winter because I wear compression stockings. I find they actually really help. And as much as I love the summer, my legs do have some staining so there are spots that won’t ever go away. What a dreadful disease eh.

    • So I guess we have plusses and minuses each – I haven’t worked out any triggers or anything that makes it better/worse, so it’s just there all the time (ALL THE TIME!), but I guess it is painless and I don’t even notice it unless I look at it. But I can’t get my legs or feet out anymore, I hate people seeing it. I have noticed the circulation in my legs is getting worse though – I don’t know if that’s anything to do with the rash.

      I don’t think nearly enough research is done on this condition. I’d love some explanations, even if a cure is asking too much.

      Thanks for your comment.

      • after gall bladder surgery, compression stockings on all night- ignored by nurses even tho’ uncomfortable- i developed ugly brown spots on my feet and legs. my foot doctor said- “Compression pushed blood up to the skin and blood dropped back leaving the iron stain in the skin. rust spots from the knees down are ugly. being ignored at the hospital -leaving the machine to do its’ job after i complained of discomfort makes me very angry, If I was a “movie-star” I’d have a lawsuit on the Hsp. Five years later nothing has changed. So much for expensive machines-FOR HSP. PROFIT!

  2. I have a similar story to yours since June 2006 (am 32 year old male). My rusty coloured marks started on ankles then went to shins, where now are worst (ankles have cleared up pretty much).

    Dermatologists weren’t much cop but did do a biopsy and it confirmed ‘Lichen Aureus’ initially, although 2nd Dermatologist said more likely to be Schamberg’s disease (although neither knew much more than me using the internet to be honest).

    Unlike the first comment left, mine actually does improve with sun exposure (holidays etc) but agree that standing for long periods and alcohol consumption definitely makes marks look a lot worse.

    I did try PUVA light treatment for some 15 sessions at great expense (NHS doesn’t cover as benign condition) and it definitely made a marked improvement, although as my marks are more severe than yours in colour, they didn’t lighten enough to be cured or disappear enough to say was truly effective, but your spots seem to be less dark in colour and more evenly spread over a larger area so you would probably get a more noticeable result I reckon.

    I am taking the following supplements which think help slightly, again one that strengthens capillary walls including vitamin C and bioflavoids such as Rutin called ‘Colleginase’.

    http://www.yourhealthfoodstore.co.uk/personal-health/collagen/biocare-colleginase-veg-caps

    Am also applying the following cream called ‘Auriderm’ which helps your body process the ‘rusty’ Hemosiderin deposits in skin more quickly, although will obviously only help get rid of deposits in skin rather than stopping any leakage. I think this would work well for yours as looking at photos, the markings are even in colour and over a larger area, so a lot less deposition to clear than mine.

    http://www.skin-etc.com/auvagel.html

    I did start using compression stockings at one stage but got bored of wearing them, but I might start trying again as they did make a slight difference..

    Again, same as you, clutching at straws really and hoping that someone will come up with more answers via internet at some stage…the below patent request did look interesting though, albeit at an experimental stage by looks of it..

    http://www.freshpatents.com/Hydroxypyridinones-for-the-local-treatment-of-skin-microcirculatroy-disorders-dt20060622ptan20060135448.php

    • Thanks for your comment, I will look into Auriderm and see if it makes a difference. In the past few months the ‘rust’ does seem to have a faded a bit which makes me sure it is sun, or at least heat, that makes it worse.

  3. Was diagnosed with Pulmonary Embolism in June 2010, and shortly thereafter starting taking warfarin, i noticed red blood like spots appearing on my ankles and lower legs. Went to Doc, unsure what is was. In the past 2 months the redness has now changed to a rusty colour. I was told that i have Schumbergs disease this week. No cure, although to take Vit C and use cortisone cream, in need. Can there be an association between warfarin and this condition?

    • @Tessa

      I would imagine that Warfarin would make a difference as it thins your blood and therefore would make it easier for blood to pass through the capillary walls when ordinarily wouldn’t = rusty ‘hemosiderin’ deposits in skin once body clears the blood.

      I’d imagine that as your Schamberg’s has been set off by a medication, that it will improve once you have stopped taking (if that is possible to do). Aside from that maybe you could take the capillary wall strengthening supplements as mentioned in my thread above which might help slow/stop leakage?

    • I also had PE in Dec 2013. On Warfarin for 1 month+ now and getting rusty patches between my fingers in the webbing on one hand. Did you ever find out either the cause of your PE or the cause of your skin discoloration?

  4. I have Schambergs as well :( I’m 22 & I’ve had it since my 18th birthday. I bought Auriderm & it’s not helping much. Also, I purchased the ‘Colleginase’ but I haven’t received it since its coming from the UK & I live in the US. Its been a few weeks now. I’m hoping it comes soon. My schambergs is all over my legs. For some reason, the rusty spots clear up on my thighs but not my ankles. I’ve tried everything from Grape Seed Extract to Vitamin K & nothing seems to work. I wish there was a cure for us. :-(

  5. @Monique

    Yes unfortunately there doesn’t seem to be any ‘quick fix’ with this condition and even the improvement I have seen with Auriderm and Colleginase will, at its present rate of improvement, probably take 3-5 years more for the marks to be barely visible (has been 5 years since they started). The good thing is that they do and are improving, just very very slowly, with occasional relapses.

    Fingers crossed that scientific advances bring some more answers to what seems to be a baffling condition.

    Don’t get too despondent though, chin up and am sure that more answers will be drip fed through the internet over time.

  6. I believe I also have Shambergs Disease based on all of my own research and none form the medical world. Guys, how frustrating is this. I am also trying to fight the fight and up until now I have not come across a blog with ‘same sufferers’. It feels good to share our stories; started for me approximately 5-6 years ago on my lower left ankle. Originally appeared as a very small rash and now has progressed slowly up the same leg and there are small hints of it on the right lower leg.
    It was also suggested to me that I use a prescribed cortisone cream which of course did very little; my own research has led me to a cream called ‘arnica’ and ‘Vitamin k’ cream as well as Vitamin C. The vitamin K seems to be mentioned a lot although I think in needs to be used frequently for a long period of time- something I have not done to this point. I need to buy it on line as I have previously purchased it from Whole Foods, (US) and it is not cheap- $27 usd for a tube that last 1-2 weeks.
    If we can figure it out we will be all wealthy!!!! I do believe it may be associated with possibly blood pressure, standing, (although my job requires me to sit a lot???), food, (preservatives and food coloring) and as someone mentioned drugs. I am a very active 45 year old male and I regularly take antioxidants, a multi vitamin, pro-biotics, vitamin c and I am a creature of habit regarding my diet, (healthy and strict). Now I have for approximately 20-25 years been involved of some form of weight lifting and I do wonder if I have over the years exerted the vascular extremities in my legs which in turn has weakened to blood vessels…who knows, talk about trying to rack my brain to find out what could be causing it. I guess I could look at a process of elimination and try that approach; what a drag though.
    My next stop is a Homeopathic Doctor, I am completely done with the regular Doctors, (I have been to a very good dermatologist also). Whatever you do don’t give up, try to control it and more importantly the best healer we have in our thoughts…positive affirmations over and over again can do wonders. I am on a mission, I will spend the $$ to see if Homeopathic medicine is the way to go and I will report back.

    • Interesting…my name is lance and I am 45 y/o with very similar story. I was however, stung by “Fire Ants” on both legs and the condition started shortly thereafter. The Derm said, he thought the “venom” may have caused the onset. I have not been able to find any info regarding (insect bites), but I have wondered if there could in fact, be a connection. Anyway, I’m still guarded when it comes to wearing shorts, as I have been questioned by family and friends about it many times over the years. I have found no cure despite trying all kinds. It is a rare condition in comparison to the norm and “most physicians” do not even know what it is…including Derms! It’s scary that the medical pros are so ignorant about so many conditions!

  7. I had a ‘Eureka’ moment only yesterday when I also diagnosed myself with Schamberg’s disease. My rash began 30 years ago on my lower shins not long after the birth of my 2nd child. I had several other symptoms too so my doc suspected an over-active thyroid & thought the rash was pretibial myxodema. But blood tests were negative so I just got on with my life & ignored it because it didn’t cause any problems. It was very very slow growing for years but over the last 3 or 4 years it’s spread up to my knees on both legs, back & front. I have showed my current GP a couple of times while I was seeing him for another problem but nothing was said. I only wear trousers when going out but during the summer at home I wear cropped jeans. Lately both my children have been making comments like ‘oh mum, look at your rash now, you need to go to the doctor’s.’ So out of curiosity I shall go next week. I have a great doctor who doesn’t mind me doing Internet research so I shall take my ‘provisional diagnosis with me!’ I’ll let you know how I get on.

    Loved your blog about this littlebitlost.

    • Yes do let me know how you get on, I’ve given up! Interesting you mention thyroid, I’m being treated for thyroid cancer at the moment, I did ask if the rash might be linked but got lots of shrugs from the specialist, so maybe not!

    • It took me a year to go back to my GP about it but got the diagnosis, and it is Schamberg’s. He suggested I put my feet up more. Eh?!
      If only… Interesting that according to patient.co.uk – some associated diseases are: Diabetes mellitus, Rheumatoid arthritis, SLE, Thyroid abnormalities. Thyroid & possible RA could be my problem then. I wasn’t on any medication when it started so I guessed it had to be an immune system problem.

  8. Hello,
    I read about horse chestnut on the internet and it says “its a valuable source of bioflavonoids, including the subclass of flavonoids known as proanthocyanidins, renowned for their antioxidant activity. When taken internally, research has shown horse chestnut’s constituents to strengthen the capillaries (the minute blood vessels that connect arteries and veins), support normal blood flow, and support the normal exchange of fluids through cell membranes.” So I bought some horse chestnut cream and I will let you know if it helps out. It also contains lots of other ingredients like grape seed extract too so maybe it can help us! :)

  9. I too have this ‘rusting’ on both feet and ankles though funnily enough have none on the top of both feet. I have had this for a number of years, sometimes worse than others. My doctor actually suggested that it was because I was overweight and the pressure on my feet was causing the smaller blood vessels to burst and loss of weight would improve the situation. Wouldn’t mind but I am not that overweight

    • My spots started on my left ankle before progressing to pretty much cover the top of my left foot. I, too, asked my doctor about it and received a shrug. I showed this to another doctor who told me it was bruising related to my previously broken ankle. He told me this more than a year after my broken ankle healed so I didn’t buy this response. It has now spread to my right foot. I have begun fighting prediabetes so I was afraid this was related to neuropathy. I lost 14 pounds and lowered by blood glucose 13 points but the spots are still there. My doctor said he would send me to a dermatologist if I wanted but he warned me that my insurance might not pay since this was a purely cosmetic problem (no itching or discomfort, just ugly spotted feet). My mother has vitaligo which is a loss of pigment. Schamberg’s appears to be hyper pigmentation. I’m still researching. I’m sort of used to this type of problem. About 16 years ago, I had to figure out some really strange symptoms. It took me 2 years of research but I finally diagnosed it as Chronic Fatigue Syndrome, an auto-immune problem with tons of weird symptoms. I was tested for a multitude of illnesses with negative responses to everything; I wonder if this might also be an auto-immune problem too. Well, time to hit the internet for research again. It is nice to know I’m not alone.

  10. I have had this problem for a few years now. The ‘rusting’ as people call it is the iron deposits from the blood cells that have ‘leaked’ from the caplliaries. I have seen my doctor who seemed clueless and I have arranged to see a dermotologist. Perhaps a skin biopsy might actually find what actual disease I have. There are variants but generally its called Purpura or Progressive Pigmented Purpura dermatoses. This is quite an unusual problem which is difficult to treat. First thing that needs to be questioned is why the capillaries are weakening in the first place. The second is finding out a way to get rid of the ugly iron deposits that blemish the skin. Having done some research on the internet some say the capillaries become weak after some sort of viral infection. Obviously as you get old your tissues naturally thin out. Personally I don’t think being overweight or bad diet is the cause of the problem – it just happens. I myself have started to eat fruit and veg rich in vitamins thats good for tissue repair ie ribofavinoids and vitamin c, red apples are good and oranges but there are others if you look on the internet. I also take plenty of exercise. Also common sense says you shouldn’t eat too many iron rich foods? Natural sunlight might also help? Also I find non-elasticated pure cotton socks helps (no itching and better circulation.) There is also the psychological side of the disease especially for younger people. Lets face it there is nothing worse than having a medical problem which your doctor knows little about and is frustrating to cure.

  11. I have had Schaumbergs for 4 years. I think that it started with taking Warfarin. My recent research and some blood tests showed high Hemoglobin… high red blood cells and high Iron content in the blood. I recently researched the Iron content of wine and Whiskey. BINGO. I love my white wine and my Bourbon even more. Both are very high in Iron…. very high. From what I have found out is that your body only uses very little iron.. your body tends to hoard Iron and the only way to get rid of it and get it down to a lower and safer level is to take certain chelated chemicals and also routine “blood letting at the blood bank”. OH….. and cutting out the wine and Bourbon… bummer.

  12. I am a light skinned black lady and am not overweight, i developed a darker leather or rubber like layer on top both my feet up to my ankles. There is more of it on the right foot than the left foot. Drs i went too were buffled by it and couldnt prescribe anything as its neither painful nor itchy. If i knew how to upload a picture here i would but alas me i dont. I have to say the internet has been my saviour through a lot of things. Here’s hoping it does the same now. HELP. Its so embarrassing!

  13. Hello to all. Well, I have the same ugly/rusty looking spots, in my ankles, as many of you have described. No discomfort, pain or itching, but just disgusting rusty looking spots in the feet and ankles. They started exactly about a year ago and I’d say they gotten a bit better but have not completely faded. I have not had a recent illness or taken any kind of medication, I exercise regularly, eat healthy, and should probably loose a few lbs but nothing major. I also like to run (4-5 miles every other day) I’ve run all my life and someone mentioned that it was contributed to running. So, I stop my daily runs hoping that the rusty spots would go away, but no luck! :( I am now looking into natural healing. I will come and report here if I find an answer—-I miss running! :(

    • Rosie – don’t give up running! If you enjoy it, do it. I don’t run but my legs are still covered in the unsightly things.

  14. Thank you all for your recent comments! I have been meaning to post a follow up for a while. My spots have dramatically reduced over the past few years. They haven’t disappeared completely but there is a definite improvement.

    On the down side, I am wondering if I’ve found a connection. Somebody else has mentioned a link with thyroid problems. Well January 2011 I was diagnosed with thyroid cancer and the tumour was so large it could have been there years. No specialist has said to me it has anything to do with the rash (I’m yet to find anyone to definitely diagnose it as Schamberg’s either) but I’m not persuing it as it is clearing up a bit. The removal of my thyroid and the subsequent treatment unfortunately also triggered type 2 diabetes at only 27. So for the past year or so I have been taking thyroxine and metformin, and the rash has started to disappear. This could be a coincidence of course!

    • I think I have just solved the mystery of my husband’s spots on his legs. What I’m wondering is, what were the signs of thyroid cancer for you? Cancer runs in his family (due to a lot of environmental and possibly genetic factors, I’m sure), along with diabetes. As far as we know he doesn’t have either one of these, but he isn’t especially healthy for his age (30). He is working on it and I am very particular about our diet at home (mostly organic, no GMO and very little sugar/processed food), but he has always had some weird metabolism things. Like he is ALWAYS hot.

      He doesn’t eat especially high iron foods, so I’m more apt to think that there is a problem with the blood vessels themselves, vs. too much iron in the blood.

      Thanks for your experience!

      • Hi Sara
        I didn’t have any noticeable symptoms of thyroid cancer, because it apparently doesn’t affect the actual function of the gland. A small chunk of it ended up spreading to a lymph node in my neck, which caused it to swell, eventually becoming noticeable in my neck. I didn’t have any symptoms of diabetes either, it was caught almost immediately as I was having a full blood test screening every few months. The surgery, removal of thyroid gland, weight gain and just general stress triggered it, they believe, rather than it be a lifestyle or age trigger. The spots have definitely faded dramatically but are still there – I think it will always be a mystery.
        I would suggest a thyroid function test for your husband if he’s always hot, that can be down to a thyroid imbalance – but normally over active.
        Thanks for passing by!

  15. About 10-15yrs ago I had some test done because I thought I had intermittent claudication; pain, cramps, fatigue in my legs after walking a short distance. They did a bunch of tests including putting some big blood pressure cuffs on my legs. While I was there I asked about the rust spots on my feet and around my ankles. The doctor explained that I had incompetent venous valve. He explained the our arteries and veins are made up of small segments with a valve on each end. Each time our heart pumps the valves open and close allowing the blood to flow from one segment to the other. In those of us with “leaky valves” the valve at the rear of the segment does not close completely and it allows blood to flow backwards into the previous segment. Eventually blood fills up and begins to leak into the tissues. As our bodies reabsorb the blood the iron is left behind and causes the rust spots. My doctor prescribed support stockings. They seem to help. Makes my legs feel better and not so swelled or fatigued at the end of the day.

  16. I think I have the same thing! My skin has always been a little on the red side, so mibe doesn’t show up as much. Well, at least I know now not to go see my doctor.

  17. Hello, I feel for all of you. I’ve had the same condition for a couple of years now and was wondering if anyone had any updates?? I’ve put a comment here a couple of years ago regarding the ‘rusty’ spots on my feet and ankles hoping to find an answer, but no….to this day nothing has changed! :( —And I’ve tried several natural suplements, creams, teas, massage, etc but no luck!! —I was hoping that this condition would go away the same way as it came ‘without a reason’!! but the rusty/dark spots are there and I feel I’m even getting more now….it’s sooo frustrating and embarrasing since they look like dirt…agghhh!!!!

  18. I was never diagnosed with Schamberg’s, just rust spots from leaky veins. After wearing compression hose everyday for about a year the spots have significantly decreased.

  19. Necrobiosis lipoidica I got this off websearch as well, have had exact same symps as yours for about 7 years+
    Anyway thanks for ypur wondeful research, all the best , art

  20. I was just diagnosed with this today by a dermatologist. I first started getting it about a year ago when I did a TON of walking in the LasVegas heat after sitting by the pool. Derm said to wear compression socks. It may go away, it may not. Mine is on both shins. I have started using sunless tanner when I’m going to be showing my legs. It doesn’t completely cover them, but it mutes them a lot.

  21. I have Schamberg’s disease as well. I am a 46 year old female. This has affected me for the last 4 years. It has recently gotten worse. I’ve tried many things in hopes of ridding me of this embarrassing disease. I had it disappear once in the last 4 years with it only to return and get worse. I do feel pain and itching as it progresses up my legs. I have spoken to my dermatologist and she said it is bad genetics. I wish there was a cure. No shorts or capris for me and definitely no sandals.

    • Oh Robin…I know exactly what you’re going through :( –I’ve asked many doctors and they all give me different answers, but I know they’re just guessing. One thing they all agree on is that there’s no reason why people get it and there’s no cure either. I don’t wear shorts or capri pants either for the same reason. I do wear sandals in the summer since I found a cover up (sort of make-up) that is waterproof and I’m able to cover some of it but not completely. In my case I do not have pain, itching or discomfort only the ugly dark spots on my feet and ankles. I’ve tried many natural home remedies and, at times, I feel the spots are fading, but then other times I feel they’re spreading. The only option I haven’t tried is meditation and prayer…so, that’s what I’m doing lately…Good luck to you Robin.

  22. Diagnosed last year, researched a lot on google andwhat causes it?what cures it? how to control it ? has left with one option that is to live with it.:((

  23. I have this too… I had a biopsy about 6 months ago when the “rust” patches didn’t go away. I am a 48 year old female and have taught fitness classes for years. I was told that exercise contributes to the issue. I also have poor circulation. I am wondering if anyone knows if massage makes the condition worse?

    • Dani, I feel your pain. —I’ve made comments in this blog before. I have the ugly rusty/brown spots around my ankles and feet for the past couple of years. I was also told by doctors that it was contributed to exercise particularly running. I’ve run all my life and would average 3-5 miles every other day. So, they told me to stop running, which I did, but the dark spots didnt’ go away…I gained weight instead!! — then I went to see a different doctor and this one said the rusty spots were due to weight gain..(.figure!!!) –anyway, I am now trying natural medicine. I also have poor circulation, but have not try massage yet.

  24. Hi 49 year female. My Dr told me overweight’s the problem!!!!! Lost 10kg but it
    spread out more (feet and just underneath my knees). I am so depressed
    and feel like dirt. Goal bladder removed, hysterectomy and have other problems as
    sebasiast cysts on my scalp and large cyst growing out my right kidney.

  25. Hi Everyone,

    Thank you for your comments. The information is useful. I will try some of the suggestions and hopefully it will assist. I have had a varicose vein problem for many years. About 3-4 years ago I decided to do something about the appearance of the varicose veins that were the most significant around my ankles. I had sclerotherapy on two occasions. The treatment focussed significantly on the veins around the ankles. Unfortunately in the 6 months post treatment a rusty brown rash appeared on the inside area of my ankles / very low leg region. The left is worse than the right. I knew that a side effect of sclerotherapy was brown pigmentation and I put the rash down to a side effect as it certainly wasn’t there in any capacity before sclerotherapy.

    After about 1 year I decided to return to the sclerotherapy centre to show them and see if they could remove it. They noted that it wasn’t there prior to the sclerotherapy but to my surprise they didn’t think it was the usual brown pigmentation that can be a side effect from sclerotherapy. They suggested I return to the vascular specialist.

    The rash isn’t itchy and causes my no issues expect for the very bad appearance of it. It prevents me wearing shorts / dresses unless I wear stockings or use heavy make up on my lower legs. I recently saw the vascular specialist which is now about 2 years since the rash developed. I have shown many other Drs over the years but none of them have had a glue as to what it is, even a few dermatologists haven’t had any ideas. The vascular specialist was puzzled. He was the one who referred me for the sclerotherapy and when he referred to his notes and photos he also could see that there was no sign of this rusty brown rash before sclerotherapy. However from his experience he didn’t think it is the usual brown pigmentation side effect that he would sometimes see with a side effect from sclerotherapy. He then told me that from his experience it resembles schamergs disease.

    I then searched schambergs disease and that is exctly what it is. The vascular specialist said that it could spread although now for many years it is just confined to the inside of the left leg with only a very slight spec on the right lower leg / ankle.

    It is shocking that this disease is still so unknown and so many Drs have no idea about it. I’m thankful that the vascular specialist identified it. Now I will try some of the above suggestions and see if anything works.

    In my case it seems that the sclerotherapy injections triggered it and the vascular specialist has told me to never have any sclerotherapy again.

  26. Just wanted to know, does anybody have other problems related to Schambergs Disease?
    For example ,feet at times feeling hot and uncomfortable?
    I need to put mine in a tub of cool water to bring down their temperature!
    So hope a cure comes soon?:(

    • Hi Glenn,
      Yes…lately I noticed that my feet are either very cold (I live in a cold and humid area) or uncomfortably hot–almost like a burning sensation.
      I’m so, very unhappy about this and I too wish they find a cure or something to explain why I got this. Sometimes I wonder if nutrition has something to do with it so, I’m experimenting with eating different meals, healthy juicing, staying away from sugar etc…so far I haven’t seen a difference.
      Soon I’m going to try a ‘liver-cleansing’ —
      Good luck,

      • Thanks Susie for your reply.I am sure there are a lot more out there that have hot or warm foot temperatures relating to this disease.
        I intend to go to a Chinese Herbalist soon, as I think Asian Medicine may hold the key?
        All the best!…..Glenn

      • Hi Glen and Susie,
        Thanks for your comments. I haven’t really noticed my feet being hot or cold but overall I have a temperature regulation problem. I always feel much cooler than other people. It may not be related to this condition as I had this c temperature problem long before I developed Schamberg’s Disease.
        I have however noticed that since I started increased exercise and increased protein in my diet that the rash is worsening whereas before this it had remained the same for a few years.

        My specialist recommended me to wear venoscan stockings and I try to where possible but in 40 degree heat it is often not possible.

        Has anyone else found that their rash area worsens with exercise?

        I really hope a cure can be found.

      • Hi Annika,
        Yes I used to do a lot of walking, which seemed to make it worse!
        I have had this disease now for around 10 years!
        No pain associated with it, and no feet swelling, but just increase in temperature around both feet.
        It sure is a bit of a mystery?

      • Hi Glen,
        It sure is a mystery.
        Mine came on a few years ago after sclerotherapy.
        Interesting that you found it increased after walking because that is what I’m finding too.
        Hope you get some relief soon for the increased temperature in your feet.

    • My feet feel hot and burning a lot. They have a tendency to swell during warmer months. Along with the rusty spots I have red itchy bumps much like mosquito bites. I spray them with Zytrel Ivy-Dry Super. It seems to help with my itching and is not as hard on the skin as the cortisone cream perscribed to me by the dermatologist. I was diagnosed with Schamberg’s Disease 2 years ago and it comes and goes.

      • Hi Harriet,
        I tend to get a hotness on the feet, but not at all times.I have no idea if this is related to Shambergs Disease or not.I too have to put my feet in a bowl of cold water.This gives immediate relief, and is a real God-send!…I have resigned myself to having this condition now, and no longer worry about it.Although if a cure does come, I will certainly use it!:)
        I hope all goes well with you.

  27. Hello Everyone. I have just diagnosed myself with Schamberg’s Disease. I have the rust coloured spots on both my feet. They began after I had my first child in 2007, and I was diagnosed with Hypothyroidism shortly after. They have never concerned me too much, but lately I have been researching the condition, which at first I thought was Petechiae, but my spots are not red at all. They are brown, and seem to darken after I bath. When I was reading up on Petechiae, I found that it could be a symptom of leukemia. Is this the same with Schamberg’s, or is it a different disease altogether? Is this something I should worry about?

    • Hi Kim,
      Schambergs Disease is not life threatening, if that is indeed what you have.Use Google images to show you what the feet look like, and see if they match your own.I have no pain associated with this, and it has been with me now some 10 years.Many theories abound as to what causes it?…Western Medicine is at a loss to diagnose the problem, so I intend to go to Asian medicine instead….All the best!…Glenn

    • Hi Kim,
      I don’t think Schamber’s Disease is life threatening either. In my case I do not feel any pain or itching, but lately I noticed that, at times, my feet get extremely hot just like Glen’s.
      That is really bothersome since my feet are usually cold and then they turn very hot, sort of, like having ‘feet-hot flashes’ lol —(I’m sure I can find some humor in this annoying disease) …aside from that is just very embarrassing to have rusty, dark spots since they look like dirt. I usually avoid using sandals or open shoes, but that will be very hard during the summer especially since having ‘feet-hot-flashes- lately… :(
      Good luck Kim!

  28. Soon after I started taking Warfarin for clots in my left leg, diaganosed in Feb., I spotted a reddish rash on my ankle. Then the rash appeared on both legs up to about calf level, i mentioned it to the nurse who was monitoring my blood weekly. She said I should see the doctor who I was able to see right after that. He just seemed puzzled over it and didn’t think it was caused by the medicine and told me that it wouldn’t hurt me to have it. It hasn’t moved upward–so far, but I took advantage of an already scheduled yearly check with my dermatologist to ask him about it. He says it is Shamberg’s disease and he said it wasn’t caused by the clots and probably not the medicine. I didn’t think to ask him how long it will last, but after reading info online, I realize I may have it forever!! I had a similar experience with “spots” years ago when doctor put me on a thiazide (water pill) for BP. These spots were larger and more purple. Doctor, again, didn’t have a clue so I went to a dermatologist who said it was caused by the thiazide. Back to original doctor who prescribed a beta blocker for BP. Immediately the spots faded and were gone soon, so it was that medicine. I think it’s too much a coincidence that these spots started after a new medicine to not be caused by it. Hopefully, within 3-6 months, I will be off the Warfarin and they will go away. Just glad I like wearing pants most of the time!!!

  29. After suffering with Schamberg’s for the best part of 2 years now, I finally got to see a Dermatologist at a Private Clinic about 3 months ago now. After doing a biopsy and confirming it, my doctor recommended I use photolight therapy in the form of UV-B. He had read a study in the [Journal of the European Academy of Dermatology and Venereology], which recommended this form of therapy. I was able to purchase a handheld UV-B Narrowband lamp from Amazon and have been using for the last 8 weeks. I use the lamp 3 times per week, and on the days I don’t use the lamp, I apply Auriderm XO cream. — when i started the treatment, I was not expecting any noticeable results.

    Thing is, my rash around my ankles, which had spread to my shins, has all but gone. The tiny red dots [cayenne pepper spots] disappeared about 3 weeks after using UV-B lamp…. and the rust lesions are also dissipating. I’d say that 90% of the rash has faded. I am totally amazed at speed and efficacy of the treatment. I hope that after more use of the lamp and cream my rash will completely fade into oblivion.

    This has recently changed my life. During the recent warm spell, I have been able to wear flip-flops again! Its amazing how the little things in life can have such an affect on your life.

    Please, all, look into this. And i hope it can bring someone else success.

    http://onlinelibrary.wiley.com/doi/10.1111/j.1468-3083.2010.03806.x/abstract;jsessionid=52D605420A3F44E7625E27C269F7725C.f02t04

    This is the link to the study in the Journal of European Academy of Dermatology.

    • Hi Emma,
      This is wonderful news and thank you for sharing it. Would it be possible for you to provide the details of your dermatology clinic.
      Hope the improvement s continue. It is great news
      Annika

    • Emma, I’ve also seen improvements using UVB. Though know nothing of Auriderm. Looking this up I notice that the Vitamin K oxide in the cream strengthens the capillary walls!! Is this available on the NHS?

    • Could you please let me know how long each treatment is with the UVB narrowband light? I am going to try these treatments. Thanks!

  30. Hey Guys and Girls, I am a 16 year old boy and I recently stumbled upon this website after diagnosing myself with this Shaumberg’s disease (nice), and I am struggling to find out what’s causing it. I first found it in March this year and noticed it had spread from my feet to my fingers aswell, there were also bright red hives (which I think some of you might call a relapse) . The dots started off as a deep red colour and slowly turned brown and started to fade away. In the meantime I went to the doctors and she diagnosed me with having petechiae and sent me to get emergency bloods taken (ooh) at A&E, after all the torture of waiting for hours to get the blood test done and waiting for the results, they came back negative (they also tested me for leukemia which was also negative), so they sent me home. And after a few days they dissappeared. I did some research and found something called Gloves and Sock syndrome, which looks a little similar.

    I hadn’t had it since, until this month, where I noticed pale brown spots, a couple of blanching pink spots and a faint purple bit on my heel that looked like a spiders web. I have also been experiencing really dry skin on my forehead, elbows and especially around my mouth where there is hyperpigmentation.

    The first time I found this hyperpigmentation was last September when I had started to use protein shakes, I went to the doctors and she prescribed me hydrocortisone cream. Since it was a steroid cream, I didn’t use it considering the skin around the mouth is already very thin. Then a week later, it faded away on it’s own, only to come back last month when I started using a drug called ‘Apetamin’ which also contains proteins in it, especially one called ‘Lysine’ which was in both the shakes and this. So I’m thinking that they are maybe both connected. Btw, I was taking these to gain weight, recently I gained 20 pounds in 1 month.

    Like most other people I do regularly stand for long periods of time, waiting 20 minutes nearly everyday for the bus.

    I hope there is still hope, here are some pictures of both my hyperpigmentation and spots when they had flared up in March, my skin is naturally an olive colour: http://s723.photobucket.com/user/CaspianFS/profile/

  31. Hi Caspian,
    Having looked at your photos, I am doubtful that you have Shaumbergs disease!…Yours appears to be more of a skin allergy related to maybe Hives, or to some food disorder?
    At 16 too, seems far to young for it as well?
    Also be very careful about gaining weight too fast at 16. Your body has not full developed yet, and it could have negative results in many areas!….best regards, Glenn

    • Thanks for the reply, it’s a bit of a relief to find out it looks more like an allergy. If it’s not schaumbergs then surely they have something in common. I hope everyone finds a cure for this!

      • Hi Caspian,

        I agree with Glenn. From looking at your pictures it does look more like you may have a skin allergy rather than schaumbergs disease.
        You don’t know how we wish that someone finds a cure/answer to this strange illness…and no, it doesn’t seem to be life threatening but rather extremely annoying since the dark/rusty patches look like dirt…yeah, horrible!!!
        Good luck with you condition. I hope it goes away soon!!

        Rosie

  32. I was diagnosed with Schambergs disease about a year ago. It is getting larger and covers about a 6in x 1in patch on my right shin.
    Emma, I am wondering how many minutes you use the narrowband UVB light each time you do a treatment. Could you please let me know. I am thinking about purchasing one to see if it works for me.

    • Hi kala, at the beginning, I only used the narrowband lamp in a very limited way – 30 seconds on each area prone to the lesions. I used the lame 3 days per week, and each session I increased the time by about 4 seconds. So in week 1, I kept it at 30, 34, 38 seconds. I did this until about week 4. Thereafter I never went above 1min30 for each area. And remember to leave a day between treatments. The uvb lamp can burn you, so please use with caution and use the protective shades that come with the lamp. Update me if you go ahead with the treatment and of course talk to your doctor before trying this.

  33. I have the same rusty patches on my lower leg. Dermatologist said I had leaky blood vessels and that I should stay away from NSAIDs. As much as I hate the look of these spots which run from foot to knee, I have decided to “own” it. My legs are healthy and I refuse to stop exercising. Fit legs with rusty spots look better than unfit legs with the same spots. I wear shorts, my bathing suit, and short little dresses that all show off this strange discoloration. What helped me most with coming to terms with this was thinking about what I would think if I saw someone with my legs walking down the street. I wouldn’t think anything other than…birthmark, trauma, etc. and on my day would go. Nobody is perfect. As much as I do not like having this, I refuse to let it dictate how I live my life. If someone finds my rusty skin offensive, then that is their issue to deal with. My legs have character! Ha ha. Acceptance is key. I also talk to friends so they know what it is and may be of help to others. Thanks to all who posted. Beauty comes from the inside. Shoulders back, head held high, God made me and He does not make mistakes. So what if I’m a little rusty.😜

    • DH—‘so what if I’m a little rusty’ — ohhhh I love that!! and I too love your attitude :) — I wish I had that much self confidence. Thank you for the encouragement I will continue repeating to myself ‘so what if I little rusty’ lol :) :)

  34. Thanks Glenn and Rosie! It’s always nice to get positive feedback. Rosie, the hardest part about letting the world see my “rust” is walking out the door. Once you’re out there, it’s out there with you. I have my days where I stare at it and I can see the new spots cropping up. The dermatologist actually said I was a bit of a mystery because my spots are so dark. I hope that my words are a help to you. Also, my husband says that my first spot is starting to fade. That one has been there over a year. Only time will tell at this point. I’ll keep posting…hopefully with good news.

    • Hi DH, just remember there are people in this world who have injuries or scars that run a lot deeper than ours!…..I have a friend who suffered third degree burns to their arms and face…..believe me, they live with a lot more than a bit of rusting!…Anyway, stay positive, and embrace who you are are!:)

  35. Mine look pretty bad and just keep getting worse with time. They started when I was about 20, and looked like freckles. For the last 13 years my various doctors have been useless in this regard. They sent me for pointless and expensive scans and could never tell me anything. One thought I had cancer! At 33 my shins and ankles look really bad. I’ve noticed that most people I wrestle (BJJ nogi) don’t want to touch my feet, and some don’t want to wrestle me at all. I’d be OK with it, and “own it” if I knew there was no cure, but it just seems like there should be a way to fix “rust spots under skin”, and I don’t like having this wrong with me if there is a possible fix. I’m athletically active, so that’s no cure, but who knows, maybe it helps.

    Tanks people for posting all the tips

    Emma’s treatment seems like it makes sense.

    Also Vitamin K and staying away from NSAIDs sounds like worth while tips.

  36. Hi David. That is tough to hear that people don’t want to wrestle with you because of your feet. Do they think it’s contagious? I tell people about my skin discoloration so that I can put their minds at ease and also to maybe help others who may have the same thing. I know BJJ is a very close contact sport so I’m sure people worry about contagiousness. Do you have a few people at your gym that are in the know as far as your rust spots? I guess mine just look like trauma so in a gym environment I wouldn’t expect anyone to think twice. I will keep asking my dermatologist to give me helpful hints. Last visit they suggested Vitamin C.

  37. Working on my referral to the dermatologist today, but I’m confident that this is my issue. I noticed it 2 yrs ago and it has progressed over time; top of feet, ankles, and lower shin/calf. I am so glad I found this page! I feel better already just knowing I’m not the only one. It has been worrying the hell out of me for the last week. Not sure why or how this developed, but I’ve been on blood pressure meds for about 8 yrs now. I drink beer in the evening and I’m about 15 lbs overweight. I was extremely active in my youth and 20’s. I’m 39.

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