Hello from a newbie: Hi all! After 15 years of... - LUPUS UK

LUPUS UK

31,744 members28,102 posts

Hello from a newbie

mudglutton profile image
18 Replies

Hi all! After 15 years of Lupus, I've decided to join the forum. I'm one of the 10% males who have the disease. I'm not sure what I expect to get from the forum, but I'm hoping I'll find both something to give and something to take.

Written by
mudglutton profile image
mudglutton
To view profiles and participate in discussions please or .
18 Replies
whisperit profile image
whisperit

Welcome mudglutton!

Barnclown profile image
Barnclown

glad you found us! 👍

Turquoise-1 profile image
Turquoise-1

Hi 👋,

I’ve learned a lot from this Forum & the knowledgeable members; It’s a valuable place for support & information 🙂

MusicalFurbaby profile image
MusicalFurbaby

Hi mudglutton, welcome and thank you for posting. We need more of the male perspective on lupus, so I am looking forward to hearing more of your experience. Please feel free to post/vent/ask questions here anytime, this is a friendly and supportive bunch of people who understand! 🌻🌈✨

Hiya and welcome. Do you get itchy after going in an indoor pool, steam room or sauna etc? I have Lupus and used to go for Spa days etc and now I can't even go for a swim at the gym because I get unbearable itching under my skin in my whole body. I will get a rash if I scratch but then it gets worse. I am on Hydroxychloroquine and fexofenadine. I have to put Alo Vera and at times Sudocrem on but obviously I can't go out looking like a ghost or snowman! Any ideas or advice would be great 🤗.

Looplylady profile image
Looplylady in reply to Riselikeaphoenix_123

Yes I have a similar problem I usually take a allergy relief tablet ( cheap )from the pound shop, it seems to work, plus cetraben is very good.....I got my on prescription from the doctor.

Riselikeaphoenix_123 profile image
Riselikeaphoenix_123 in reply to Looplylady

Hiya, I love your nickname ☺️. I also take hay fever tablets and have tried the Cetraben and Dermacool 0.5%,2%and 5%. Maybe because I have cuteanous Lupus erythematous. The skin Lupus that it's worse with itching? I am glad that yours helps. Have a great weekend. X

mudglutton profile image
mudglutton in reply to Riselikeaphoenix_123

Not a problem I've had.

Looplylady profile image
Looplylady

Welcome newbie......it will be interesting to have a male perspective.Don't be scared we are very friendly

SufferingMike21 profile image
SufferingMike21

Hi Glad you have joined I'm one of the 10% males.I have asked questions and had such great replies and support.

Also I've answered people's questions so hopefully you will find useful.

Mike

dg70 profile image
dg70

Hi and welcome. Hopefully we are not too female centric here but most of what we suffer is common to all. There seems to be always someone who has the same issue as me and it helps that there's somewhere you can throw a question out there and you get many replies. No one knows autoimmune like other autoimmune sufferers and sometimes its a bit of a lottery as to whether our medical professionals know enough.

Betty909090 profile image
Betty909090

Hi there,

I’m not so sure that it’s only 10% of males that suffer lupus?

That’s a statistic that’s often quoted but one wonders whether it’s actually wrong and needs revision for the following popular reasons:

*Men do NOT like revealing/talking about health problems say all the medics but..?🧐

*Perhaps men feel excluded because of this stat?

I feel there are loads of men out there who find it difficult to talk about lupus and AI generally?

Don’t be gagged, hindered or feel gagged about this stat because it could turn out to be wrong?!

We here talk openly and freely about lupus related matters. WELCOME!

Regards

mudglutton profile image
mudglutton in reply to Betty909090

Hi Betty. I suspect you're right. There seems to be an ignorance of SLE in society in general and in men particularly. Often, if I declare my Lupus to women, I get interest and empathy, yet when I declare it to men, often the response can be best described as "Huh? So what?" TBH though, this is probably true of many things and AI/SLE awareness seems to be improving rapidly and I must admit, I had never heard of Lupus until I was diagnosed with it...

CecilyParsley profile image
CecilyParsley

Hi mudglutton and welcome. Loving the name. This is a lovely friendly group where you will get advice, comfort and a giggle along the way 🙂

ijeasike profile image
ijeasike

Welcome 👍

Poshcards profile image
Poshcards

Hi, 'newbie' its a great place to be, welcome xx

SurferGuy profile image
SurferGuy

Welcome to the forum my fellow 1 in 10'er 👨‍🦰 And not only a fellow 1 in 10'er, but also a 15 years diagnosed'er.

This is a top forum with top members who offer top support and top advice. Can't top it 😊

svfarmer profile image
svfarmer

hi mudglutton and welcome to the forum x

You may also like...

Newbie, saying hello and seeking advice.

Hydroxychloroquine newbie. Hi all, I'm Cordie and I'm new here. I was hoping for some info...

Hello from Manchester

a recent diagnosis of SLE - Lupus and grateful to have discovered Lupus UK - having spent too much...

Hello from Slovakia again! (Help for SLE2)

laboratory scientist and I am interested in disease of SLE. Now I'm going to work on my final...

Newbie

Hi everyone, I'm looking for some advice. I hope you don't mind me asking. I've been suffering for...

Newbie...need to learn :))))

Is there such a forum in Australia, anyone know? Just pleased to be with others who will understand...