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?

 

 

34 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.

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