does anyone else suffer from Necrobiosis Lipoidica Diabetico

kittymedaughter
kittymedaughter Member Posts: 81
edited 15. Dec 2011, 18:43 in Living with Arthritis archive
Hi, I have suffered Necrobiosis Lipoidica Diabeticorum for the last 5 years, it is a rash on my shin, which there is very little known about the cause of it and the damage. I have recently read that some people with RA also suffer from this and i wondered if people with RA suffer from rashes on their legs

Comments

  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
    sorry can not help you but noticed no one had been on so thought would push to top. it was quiet yesterday val
    val
  • jillyb1
    jillyb1 Member Posts: 1,725
    edited 30. Nov -1, 00:00
    I'm a RAer , have been for 31 years , but luckily no leg rashes ! I do however have itchy rashes on my back , drives me crazy all the way up and down my spine area . Luckily , I'm not mobile so can't scratch or I'd be red raw ! Jillyb
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Dear Kitty

    I really sympathise with you and wanted to try to help in some way although I do not suffer with this.

    I googled and there were quite a few forums but with only about 1 - 5 postings on them.

    Then I came across this one and although it mentions diabetic in the title there are posters on there that do NOT suffer with diabetes so I wondered if you may find it useful and at least know that you are not alone with this. There are posters on there who also have RA. Some of them have added their email addresses and you may wish to get in touch with perhaps one or two?

    Here is the link:

    http://www.diabeticconnect.com/discussions/2334-does-anyone-suffer-from-nld-necrobiosis-lipoidica-diabeticorum

    It is an american site but I do not think that matters too much in this instance and hope it may help you a little with your questions.

    Hugs
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • prefabkid47
    prefabkid47 Member Posts: 1,316
    edited 30. Nov -1, 00:00
    Hi Kitty
    My OH picked up on your thread as soon as she saw it!She is type 1 diabetic and has been for over 30 years.
    Soon after she was diabetic she developed necrotic patches on her right shin and top of foot.Her GP didn't know what it was and was sent to see a skin specialist who immediately diagnosed it as Necrobiosis Lipoidica Diabeticorum.This was as a result of her diabetes.The symptoms have faded with time and barely visible with no treatment.
    Are you diabetic or had a test for diabetes?
    Ron
    ''Beer is proof that God loves us and wants us to be happy''. Benjamin Franklin (1706-1790)
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Hi Ron

    Kitty wrote a posting to the helplines and there she mentioned that she did not have diabetes nor was she on the border it it.

    It is good to learn that your wife's NLD symptoms faded with time and are now barely visible.

    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • kittymedaughter
    kittymedaughter Member Posts: 81
    edited 30. Nov -1, 00:00
    aww thanks for all your replies. I am sorry to hear your OH has it Ron, I don't have diabetes and my last test was a fasting glucose one and i wasn't even borderline...I know some people have this without diabetes, but it is frustrating not knowing much about it. Mine started out the size of a 10p and now covers most of my shin..my dressings are 17cm by 17cm so you can imagine how large it has grown over the 5 years...it is good that your OH has almost gone now..some promising news for me.

    Thanks for the link to the diabetes website elna..I will check it out, I thought i would ask on this site as it is a arthritis site and was hoping to find someone who had NLD and also had knee surgery because this is the conern i have at the moment. I have read that NLD is a break down of collegian in the skin but also the blood vessels are affected. As Ron has said little is known about it...I always seem to get rare things...lol...
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Bless you Kitty. On the NLD forum I found, some of the people had RA but whether they will have had a knee op similar to what you may have, I did not read them all. You may well glean some information and help though from the people who have taken part on this forum.

    Hugs
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • magenta
    magenta Member Posts: 1,604
    edited 30. Nov -1, 00:00
    Hi Kitty,

    I have this! I was diagnosed about 10yrs ago. They took a biopsy from my shin and it never healed properly, leaving me with a massive, deep scar on my shin which is worse than the red rash!
    I have sero -ve arthritis and I'm not diabetic. Drs were surprised I wasn't a diabetic and they told me to check my glucose levels every so often but thankfully they're always normal.

    I was given creams and offered uv radiation therapy but I turned them down. It flares very occasionally and now I know what it is, I just ignore it.

    Magenta x
  • kittymedaughter
    kittymedaughter Member Posts: 81
    edited 30. Nov -1, 00:00
    Hi magenta, I am sorry they did a biopsy..I was lucky because the Dr said he wouldnt do one incase it didnt heal, sounds like he made the right choice..I use depobase cream and it takes the itching out of it....makes you wonder why we have it but don't have diabetes? thanks for you note, at least i know i am not alone with Ron OH and you having it x

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