Necrobiosis lipoidica diabeticorom

[Trinkwasser]

Good point, I knew someone once who had a skin graft for a serious burn.

The burn healed perfectly but the site they took the graft from became infected and she ended up with a worse scar, just in a different place.

 

[nessa-lou]

eek thats not good, im so excited one more day and i get to get the make up. i will be the happiest girl alive if it looks good!! haha x

 

[Aadrgon]

i will be the happiest girl alive if it looks good!! haha x

Keeping our fingers crossed for you Nessa

 

[nessa-lou]

thank you!! and thank you to everyone else as this is a massive part of my life that has been affected. ill be screaming tomorrow on here haha!! i think i will actually kiss the women who gives it me haha x

 

[nessa-lou]

just a little post before the appointment, over the past week my blood sugars have been amazing and i have finally got over the brick wall i have been walking into for 4years, anyway thats a different story but my leg, the colour has changed, the skin its lighter and not inflammed!!! which to me is a great sign!!! its an improvement any way, well i best prepare myself for the appointment!

 

[AdeleMB]

I've had this on a left foot and shin and the other ankle for years.

A few years ago I got an appointment to get some camaflouge cream, which sort of covers it but not that well. Stopped wearing short skirts at that point. Mind you, I'm slim but have quite disproportional cankles anyway so no great loss!

Tried everything to stop it growing (it incurable and a bit of a medical mystery in case anyone reading this doesn't know ) including numerous creams but nothing stopped it creeping further up both legs. One doctor told me that if you have it on both legs, each will try to mimic the other one... sounds a bit sci-fi to be but so be it.

Anyway, quite unbelievably, a mate at my local pub turned out to have it to - not diabetic though - and she told me about this amazing stuff called Haelan Tape... OMG the stuff is fantastic!! It's starting to cure an ulcar, seriously reducing redness and this is only after 2 days!

Brilliant stuff, if you have necrobiosis and have tried everything to no avail as i did, ask your consultant to try this! Can't big it up enough!!

 

[chickbabes]

Hi Adele, Where do you get this Haelen tape from? I'm willing to try anything, I just treat active bits with dermovate now.

How did the cover up go nessa?

Xx

 

[wendylouise]

Hi

I have been type 1 diabetic for 5 years and 2 years ago whilst on holiday noticed a mark on my leg. Didn't think anything of it, thought i'd caught it on something. After a couple of months it started growing, went to the doctors and was diagnosed with Necrobiosis. I now have two marks on my leg. Was sent to the dermitologist who put me on steriod creams of varying strengths and after a year have been offered UV treatment. Am currently waiting for my appointment. Has anyone had light treatment, are there any pros / cons. I will have 10 weeks of treatment, twice a week. I have asked for the appointments as early in the day as possible, but wondered if anyone knows if legally I have to make the time up at work or not, work have said I do.

I would just be happy if the redness died down, have had camoflague session with red cross, but don't really feel it makes a huge difference.

Also, with the sun eventually coming out, have had conflicting responses from dermitology and own doctor as to whether the sun will do more harm than good to the area.

When I was first diagnosed with this I felt quite alone, but searched for more information on it and found this forum, which has helped.

Thank you

Wendy

 

[chickbabes]

Hi Wendy, Necrobiosis is a right pain in the bum - in general they don't do very much research into it as it is only cosmetic in their opinions. There used to be a yahoo group with lots of people with necrobiosis but I can't find it anymore.
I was not suitable for the light treatment as my leg ulcers quite regularly so I'm afraid I can't help in offering any pro's or cons. I would give everything a go though.
In respect to the sun I always make sure I have sunfactor on the affected areas as the skin is quite fragile. I got sunburnt on it a couple of years ago and the whole area ulcerated so just be very careful. My dermatologist in Edinburgh has carried out a lot of research into necrobiosis and he says as long as you are careful with the sun it is fine.
Mine has recently started to lose its colour in the top area and the edges are much less defined. My dermatologist says he has seen a couple of cases that have just disappeared and healed so I'm living in hope.

I was out with bare legs yesterday at the Taste festival and this boy came up and was like "woah! What did you do to you leg?" His mum was mortified. I just replied that I was skiing last year and fell and my bone snapped out my leg. He didn't have a reply to that.

Xx

 

[morpheus]

Hi, just found you all!!

I too have necrobiosis but have found getting any infomation on it difficult.
For the record I don't have diabetes (and I'm a bloke). Mine appeared five years ago in my mid 20's, I had been bitten on my ankle by an insect and had banged my shin on my bed. a Rash appeared, several creams later and with an ulcerated shin I was sent to the dermatologist in Leeds... after many visits and lots tests, eventually a biopsy revealed necrobiosis.

I've tried most of the treatments now, the creams generally haven't worked, although under a granyflex plaster Protopic has stopped it spreading. UV treatment did work (took 40+ sessions), but it came back four months later. On a positive note, after a year and a half it did go on its own (left some scarring) I had been on holiday and had been bathing my leg in the sea and letting it see the sun, I do this at every oportunity now!

I'm otherwise healthy, but cant play competitive sports in case of banging it so I am about to start some Anti-Leprosy drugs, but on a trial basis not prescription - has anyone had any experiences of these?

 

[chickbabes]

Hey Morephus,

And welcome to the group. Glad you found us all, altough sorry that you have this rubbish thing too that no one knows much about.

I too have tried all of the normal treatments and like you have not had much success with any of them. I was at my dermotologist on Thursday asking about the possibility of treating it with remicade (a tumour treatment drug) but he said this has only been shown to treat ulcerated necrobiosis and mine is at the best he has ever seen it.

I only have a small active red part at the bottom of my left leg lesion and the rest is just shiney and scarred and much the same colour as my leg. I too have found that sun does help and I go on the sunbeds every so often to try and keep it at bay.

I have never heard of any trials trying leprosy drugs. I can understand why they may work though. You will need to keep us in the loop of how the trial goes. My dermatologist is in the middle of doing a lot of work on psoriasis so no time for rare nercobiosis just now!

Hope you are all well. Xx

 

[emma-lou87]

hey nessa!
aw sorry 2 hear that u also have necrebiosis!! I have it aswell and under 1% of people get it, how unlucky r we eh?? :?
Im only 22 and around 4 years ago so round about the same age as you, 2 small shiney patches appered on both my shines, i went to 3 different doctors before being reffered to a dermatoligist iv tried all types of treatment now such as topical steriods, puva treatment and recently uv treatment none have been a great help but at least it hasnt spread!! The pictures on google r horrific!!
I have got covermark make-up on prescription which is really good and gives me a little bit of confidence altho still wear my black tights out with nice bright coloured dresses 2 make up 4 it.
hope u dont feel 2 down about it!!!
xx

 

[kate.oshaughnessy]

Heeeeey, god its so nice to read about others that have this..

sorry i'm a bit late in joining
I looked on other diabetic forums and found nothing!, no one had heard of it

So story exactly the same as most.

Bl**dy inset bite, both shins, twice on each.
never healed properly turned to red scars.
dx'd diabetic 12 months later, that was 2 yrs ago
Derm DR was completely baffled by what it was, i did my own research and took it to show HIM.
Totally gutted, in 3 yrs they have grown from 5pence size to merging together to the size of my hand.
HATE THEM HATE THEM!!!
Cry lots, boyfriend tries to cheer me up by telling me no one notices, no one is looking at them, but i can see them, i notice them.
Cry lots when i bang them lol
Like winter as i cover up, hate summer! (no dresses for me)

Have tried Healan Tape, it seemed to make it worse.
Had the steroid injection, now just have a huge scar on top of one of them now. grrrrrr

They are growing it looks like, none stop. don't know what to do.
Just keep using Bio Oil to keep them from drying out

thanks for the post xxxxxx

 

[morpheus]

Hello all,

I have been on a trial of 'Clofazimine' now for about three months.

I have found it very good so far, the Necrobiosis does seem to have stopped spreading and seems to be fading to scarring. I do still have a few active spots but they are not as large and where scarring has occured, it is looking more like my 'normal' skin colour - except for the lack of freckles!!

Clofazamine does have the potential to produce some nasty side effects, I only had an upset tummy for a couple of weeks and a very itchy rash, and they all seem to have subsided for now.

I do recommend that anyone with Necrobiosis looks into this, I did have to sign lots of forms to consent to the treatment as 'Clofazamine' has not got a license to treat our condition but it is having good results for me!

If any of you have any questions I will be happy to answer them on here or PM me.

Best Wishes All

 

[Kimberley__]

Hello,
I got Diagnosed with Diabetes when i was 8 years old, and then Diagnosed with Necrobiosis at 10years old. I have Lesions on both shins, one worse than the other, I am now 17 so have had many treatments for this, none working much, the best treatment being steriod injections making both lesions lighter. Although my Dermotologist has told me that i may not have any more as it is making my skin to thin, i felt dissapointed as i thought this may help it go. He then gave me some foam called clarelux, which i think is really good, i put it on the areas at night time and the necrobiosis soaks it in. I hope one day that it will hopefully go on its own as one did go much lighter than the other, i tried the camouflage cream and felt it did nothing for me, so i dont go out in skirts or shorts so i hate summer too and constantly trying to make excuses for not going out in the summer with my friends as they dont know about it and i dont want to show my legs, i find this easier has noone will make a fuss and stare at my legs. On my right leg i have 1 little circle of necrobiosis on each side, which i find quite strange, does anyone else have this? i were hoping in the future to find someone else with this and meet up with them in the summer to see how they live their lives around it, although i found noone my age or anyone who lives around my area. so finding you guys on this is a start x

 

[morpheus]

Hello all,

A quick up date on the 'clofazimine' trial.

I have used it now for two years and have had no spreading and no side effects after the first two weeks - It really has helped.

I must say I am not diabetic, but I now strongly recoommend that anyone with NL speaks to their dermatologist about this, I would be happy to give any details and I am sure that the Leeds Dermatology Centre of Excellence would support too.

Hope you are all well.

 

[crosby1984]

help
i suffer with this also :cry:

 

[wendle]

iv had this for the best part of 10yrs. my docs seemed to be at a loss as to what to do with me. i was referred to a skin specialist who did a biopsy and confirmed it was necrobiosis. it started on my left leg as a tiny red lump and then it grew. about 6 months later it appeared on my right leg (atleast iv got a matching pair. :lol: ). i didnt get diagnosed with type 2 diabetes until 5yrs ago, even tho the skin specialist said its very closely related to diabetes. since my sugars have been better controlled, it has appeared to fade a bit. still red though and very shiny. the docs have said theres no cure and its untreatable, although i did get offered a skin graft, which i declined. i used to get upset about it but now i dont really care. if people want to stare cos im wearing shorts then thats their problem isnt it? iv even had some people come upto me and ask me how i got burnt there.
we are just a rare and special bunch.

wendle x

 

[dawnmc]

Dermablend is a good coverup, and that is what they may well use, you can set it with the powder that you can buy with it. Its waterproof too. I think I saw a man with tatoos all over him and they used the cream to cover him up, it was on you tube if you can find it.

 

[hanadr]

I know NOTHING of this condition, but find that using Vitamin E oil on any skin problem helps.
Hana