Lupus Profundus

Do any of you suffer from Lupus Profundus? My discoid lupus mutated to this in January 2011 and have been on 4 different medications -latest on being Methotrexate started in June 2016. Two of my lesions/lumps have taken a turn for the worse so I was wondering and hoping that there is another suffering soul out there. If there is, where do you go for treatment and what is that treatment.

I just get the impression my Dermatologist's don't know to treat it, just throwing different medications my way but as they get stronger the more checks you have to have.

Many thanks

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  • I'm so sorry to hear this I have just gotten a yr ago and my first attack in October it has. It gone into remission nor have I found a Dr. I have lesions as well and they are driving me crazy I'm furreal meaning that I just want to cut them off!! I live in California there is a good derm dr in Pasadena so thanks for reminding me I hope I can see him and he will except my insurance where do you live ? If your close I can give you his address?

  • Hello Lilrosie1 - I live in the U.K. but thank you for the thought. I hope you get seen to and some help.

  • Hi 61Annie,

    Our booklet, 'Lupus and the Skin' includes a little bit of information about lupus profundus (lupus panniculitis). You can read and download the booklet at lupusuk.org.uk/wp-content/u...

    There is also some more helpful information about panniculitis on the NHS website at nhs.uk/conditions/panniculi...

  • Thank you Paul, getting desperate for a specialist now but do not seem to be able to locate one. I shall persevere.

  • Whereabouts are you based? We only know a couple of dermatologists with a specialist interest in lupus but if you are near one of our regional groups, they may be able to recommend a consultant that they see?

  • King's Lynn area. Thank you

  • Hi 61Annie,

    Unfortunately we don't currently have an active group in Norfolk who I can put you in touch with. We do have a very active group in Cambridgeshire and some of their members may live near to you. It may be worth contacting them through the website at cambridgeshirelupus.org.uk/

    You could also do a new post on this site asking everyone if they can recommend a dermatologist near King's Lynn.

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