It's driving me crazy

[Lilrosie1]

Does anyone out there have lesions on there neck? Or have wire loop? I'm serious about it making it crazy I'm so ready to give up ? Now a blood clot in my eye !!! About these lesions and wire thing am I the only one HELLLLLLPPPPP!

[Wendy39]

Hello Lilrosie1

Yes, I have had a red, angry rash on the nape of my neck for some years. Way before diagnosis. I showed it to 2 dermies early on and got told that they didn't know what it was but it wasn't lupus. They were wrong. Last year, a new, 3rd dermy, did a biopsy and it came back active lupus disease. It led to me starting a new medication, MMF. However it's still not under control and in fact during a recent lupus flare, it started spreading and got crusty, sore and tender again. I did post a picture. I'll attach a link to my post. Does your rash look like this? I have also experienced crusty sores in various places on my head and patches of hair loss and hair thinning.

I'm afraid that I can't help re the wire loop though. What is that?

Are you under a good rheumatologist / dermatologist? And are you on medication?

healthunlocked.com/lupusuk/...

I hope you get some helpful responses.

Best wishes.

Wendy

[MargaretGail]

What do you mean by wire loop?

[Lilrosie1 in reply to MargaretGail]

It's real look under wire loop luous

[Wendy39 in reply to Lilrosie1]

Hello. I wasn't doubting you, just had never heard the term before. When you said "wire loop" I didn't realise that it was a type of lupus. I've googled now. So it's a type of lupus nephritis. I'm afraid that I can't help with that, as I have no experience of it. Hopefully someone will respond with some advice for you. Did you look at the photo of the nape of my neck? Is your rash on your neck like that? Is yours at the nape of your neck too? Or at the front? Wendy

[Lilrosie1 in reply to Wendy39]

Yes I did I'll try and send it but it's really starting to freak me out I have old books from 1950 a friend gave me and everything is in there and it discribed everything that you can imagine it's useful but I need to know how to make it stop

[MargaretGail in reply to Lilrosie1]

Every day is a school day, I've had SLE about 30 years and never heard of wire loop. Thank you xx

[Chanpreet_Walia LUPUS UK]

Hi Lilrosie1,

Have you discussed this with your GP or rheumatologist?

Speaking to your doctor about your symptoms and any thoughts/worries you may have allows for him/her to provide you with the correct treatment and support.

It is advised to also consult your doctor about the blood clot in your eye or perhaps to see an optometrist/eye specialist. To find out how lupus affects the eyes, you may like to read out factsheet on ‘LUPUS: The Mouth, Nose and Eyes’: lupusuk.org.uk/wp-content/u...

We also have a booklet about skin involvement in lupus which may be of interest. You can read and download it on our website at lupusuk.org.uk/wp-content/u...

Please keep us updated, wishing you all the best.