Help me please

Help me please

Hi, so around 18 months ago I noticed an itchy rash on my lower legs and have been back and fourth to the gp ever since. Constantly taking anti fungal medication. After a bit of googling I realise it could be more sinister. Anyway I've had a urine test and kidneys are fine however they're saying it's vasculitis and have referred to dermatologist. And that's where it ends. No further tests. No explanation of what vasculitis might be causing, how it occurs what can be affected. So after much research I find I find other symptoms might be related. I suppose at this moment in time I'd like to know what I'm supposed to do. I have been refused a rheumatology referral and have no idea what's next. I know there are health problems that could be bad but right now I'm also battling an unsightly rash, with depression and slight body dysmorphia traits this isn't doing much for my self esteem or anxiety without the stress of being refused any kind of help

I've attached a few photos of my legs and welcome any advice :)

6 Replies

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  • Hi Loljane1990

    Im sure the regulars will be along soon with mcuh more expert advice. But, as far as I understand it, a GP diagnosis of vasculitis should lead as a matter of course to a referal to a vasculitis specialist. This would be to 1. to ensure that the diagnosis is corect. If your GP is anything like mine then I In would not be 100% confident in their diagnosis of a complex and rare condition. In deed, if you have vasculitis, then I think you need to know what kind. And 2 a referal should enable you (if the diagnsois is confirmed) to start getting the required treatment. Im not sure a dermatologist would be well replaced to do this. However, a dermatology appointmemnt may also be useful in that it might be a principally dermatological issue.

    Good luck anyways.

  • I expect one of the dedicated Vasculitis UK volunteers will be replying on here soon to say you should contact their Helpline - but there's no reason why you should not ring them as soon its convenient for you - 0300 365 0075.

    From things I read on this site it looks as if you are relatively fortunate in that your GP has considered the possibility of vasculitis. Most seem to have little or no idea about it. Unfortunately he has not followed it up by referring you promptly to a vasculitis specialist.

    Vascuiltis needs to diagnosed and then stamped on with medication quickly, as it can be causing potentially serious unseen damage.

    Because it is a rare disease there are only a limited number of vasculitis specialists. The Helpline will be able to help you find one that is nearest to you.

    Your photo shows a different form of rash than the one I get when my vasculitis flares up, but one of the things about this disease is that it can manifest itself in many different ways.

    Good luck.

  • Compression stolkings could help. Try playing with foods and see if that is causing it. If you wait for docs you will stress out. So relax and try to stay focused on the task at hand. Cortisone cream might work? Or an eczema cream. I was just informed by a naturopathic doc that dairy sugar and carbs are all inflammatory foods. I'm cutting out starting yesterday. Good luck. Wish you the best

  • Please can you contact the helpline and either John or Lynn will help with some advice just follow this link vasculitis.org.uk/helpline

  • Hi all, thanks for your replies

    I've spoken to Lynn previously and she's been absolutely fab! I was just hoping to find out if anyone else had had the same problem with referrals and find out how they overcame it. I have a dermatology appointment on Monday so hopefully something happens :)

  • Hopefully it is not vasculitis, but as your GP has raised the possibility that it is then I strongly suggest it is vital that you get it checked by a vasculitis specialist - whatever the dermatologist says on Monday.

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