Severe Cold Urticaria and Lupus

[Cellul]

Hello all,

This is my first post and I’m hoping that some of you lovely people can help shed a little light on what’s going on........ I honestly feel like I’m going mental.

From being 15 I have had Cold Urticaria - when being outside, or using cold water I have experienced a rash, itching etc.

However, May 2017 saw a sudden shift and I had a severe anaphylactic episode and now I have to carry epi pens. I get severe reactions daily, and my daily life is struggle. I am under the care on immunology and the next step for me is immunosuppressant drugs........ which accidentally led me to discovering Lupus. Although, there are many different symptoms in the way it presents, a vast majority I have suffered majorly with since being 15. I really want to speak with my consultant about it, but feel like he’ll dismiss it and put it down to my allergy. I don’t want to appear like a hypochondriac.

My questions are

Does anyone also experience Cold Urticaria with lupus?

And how might I best approach this subject with my consultant?

Thank you so much for you advice and help in advance.

C

[Hidden]

Hi Cellul,

I have SLE and various other autoimmune conditions and have this problem a lot too. I asked my consultant (a certain famous Professor) and he advised that it is seen with Lupus, although perhaps one of the more uncommon symptoms. I know a lot of consultants do dismiss things but it's them in the wrong then not the patients! I find taking Loratadine at least an hour before exposure to the cold helps, though doesn't stop it completely.

Hope that helps and feel free to message me if you want to.

Kate x

[Paul_Howard Partner LUPUS UK]

Hi Cellul ,

Some people with lupus may also experience urticarial vasculitis. You can read more about this at vasculitis.org.uk/about-vas...

If you feel that your symptoms are not satisfactorily explained by your current diagnosis then it is worth having a discussion with your consultant and perhaps asking to be tested for any autoimmune/connective tissue diseases. We have a blog article about getting a diagnosis of lupus which has some helpful information and advice - lupusuk.org.uk/getting-diag...

[Cellul in reply to Paul_Howard]

Thank you!

I am most definitely going to approach my consultant at my appointment next month. There is certainly more to what’s happening with me other than cold urticaria.

[Paul_Howard Partner LUPUS UK in reply to Cellul]

Let us know how you get on