[maidmaz]

Hi To Everyone in the UK,

My name is Marianne, I live in Australia and was Diagnosed with SLE and Raynaud's 2 years ago. I am 37yo married with 3 children. I am on Methotrexeate and prednisolone for sle and a million other meds, as we all are!

I have experienced two flares of the disease a minor one in July last year and a major one in January this year that I am still recovering from. I am not on Plaquenil because I had a severe reaction to it! I now know I am allergic to Sulphur!

We have very limited suppport for the disease here both on the web and in real life. So thanks for this board and allowing me to join. I look forward to comminicating with you all.

Bye for Now
Maz

 

[raggedyann1]

Hi Maz,

Welcome to the Lupus Site. We are from all over the world on this site. I live in California, USA. I am sorry you had such a reaction to Plaquenil. Many of us, myself included, have sulfa allergies but have no problem with the form in Plaquenil.

Take care,
Karen

 

[maidmaz]

Thanks

Hi Raggedyann1,

Thanks, I know lots of Lupies have sulpha allergies, I didn't know it back then. I had a Stevens-Johnson Syndrome reaction to the Plaquenil, which is a shame I'd much rather be on that than Methotrexeate.

Take Care
Maz

 

[Katharine]

Hi Maz and welcome,

I live in Belgium but just like you there is no support here at all for anyone with lupus or any other auto-immune disease.

Thankfully this board and the wonderful people here are all I need

hope to hear more from you soon,
Katharine

 

[marymackay]

little support

Hi Maiz

welcome to the site . I would agree with you that in many parts of Australia people with lupus etc have very limited suppport for the disease in real life, no local groups as overseas have. However I have in the last year gained much support from the web,:lol: and have made many friends in posts, emails, cards, friendship, even to the point of exchanging gifts in both U.K. and U.S. but none from anyone Australia.

Where I live we have no specialists even GPs who know about lupus/aps and I have had to fly further south to get any help. D/x is very difficult particularly when you fly to appt and see a dr in half an hour, with no time for physical exams etc, just bloodtests and scans:worried: .

I am also allergic to sulpha and pennicillin and more, which means septrin, bactrim, rulide, are out- to fix sinus, pharangitis, urti, kidney so probs are left unattended.
One rheumy has said 'lupuslike symptoms', and put me onto plaquenil last Sep, and has helped a bit, but am getting lumps in various locations. Another said when I said I'd had 2 strokes, seizures over time, with so many symptoms had been a professional over many years, but all children grown now making me a nan, so d/x is necessary for my family with their children not just me, as my parents did have autoimmune diseases.

i find this site so helpful to find out how lupus develops, or doesn't from our early, present and later in life, as I've found truly that it is the disease of a 'thousand faces". I look foward to your posts, and best :wink2: of luck. marymac

 

[Lily]

Hi maz :wavesmile:

A very big :welcome: from another Aussie in NSW! Hope you enjoy the site.

love
Lily

 

[maidmaz]

Hi

Thanks Everyone and in particular my Lupie Mates in Oz I look forward to posting here.

Take Care
Maz