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Posted: Fri Apr 25, 2008 8:13 pm
by emma_t
Hi All
Was just wondering if anyone out there has Lupus and if anyone knows what the treatment is.
It has been suggested by my consultant that may have Lupus due to an anti-nucleur antibody in my blood, a rash on my face and symptoms of tiredness and fatigue
I am waiting to see a specialist to get the diagnosis confirmed but just wated to have a bit more information on people's own experiences of this condition.
Since the consultnat asked me about the 'butterfly shaped' rash over my nose and cheeks I have been slapping on the fake tan to try and cover it up as I am more consious of it now[:(]
People who I see on a regular basis have been asking if I have been away so it can't look too Jodie Marsh/Jordan shade of orange[:D]
Would be grateful for anyones replies
Thanks
Emma x
Posted: Fri Apr 25, 2008 8:29 pm
by sblack
Hi,
My sister has Lupus and has done for some time. It would be wrong for me to try and answer your question regarding treatment as it comes in different forms. If I were you I would have a look on the internet, there are some great sites out there.
eg, uklupus.co.uk has great info.
Posted: Fri Apr 25, 2008 10:10 pm
by emma_t
Thanks guys x
Yes Helen it is something to do with your immune syste being attacked by something in my blood.
I am going to have a good read on the web, but just wondered if anyone had a personal experience of this.
Scared to go to the doctors anymore as everytime I go I get diagnosed with something else[:0] In the last 6 months I have found out I have:
Polycystic Ovary Syndrome
Underactive thyroid
Insulin Resistance
Probable lupus
I have always been a healthy person, but now everything hormonal seems to be playing up. None of those is causing me any great worries, but its just a pain, compaired with what some people have to cope with x
Posted: Fri Apr 25, 2008 10:39 pm
by Skippy
I'm sorry I can't help you Emma, but I hope you're feeling better soon x
Posted: Fri Apr 25, 2008 10:52 pm
by emma_t
Thanks Skippy, but don't want to sound like I am moaning.[:)]
Th only symptom of any of my conditions that bothers me is the extreme tiredness!! Everything else is controlled by tablets...
Hope you get sorted soon x
Posted: Fri Apr 25, 2008 11:27 pm
by facingittogether
hi emma
so sorry you not feeling well! hope you are better soon!
love barb x
Posted: Sat Apr 26, 2008 1:05 pm
by Skippy
You're not moaning Emma! I feel as if I'm moaning, but to be honest I only post if I'm ill to ask advice - this is the best place to get it!
Posted: Mon Apr 28, 2008 9:29 pm
by lily
Hi Emma
Sorry to hear of your news. Lupus is a connective tissue disease with systmeic manifestations. It is auto immune like Rhematoid arthritis, its extremely variable. I cant really go into detail here but will email Ang with what I know and she can pass it on to you. If my brain is working there is systemic lupus, discoid lupus and cutaneous lupus. Its often referred to as SLE. If you put it into google you might get a result from it. Dont scare youself though, as I said its very variable.
Good luck and take care
love
Posted: Tue Apr 29, 2008 5:05 pm
by emma_t
Thanks Lily, it is much appreciated.[:)]
I am not too worried but it just seems to be one thing on top of another at the moment, the most annoying thing is the rash on my face as if I go into the sun it becomes really quite red.
I hope you are keeping well and hope to see you again soon
Emma xx
Posted: Tue Apr 29, 2008 10:17 pm
by lily
So sorry emma, I am fine thanks, just waiting to become debt free and plodding along as you do. I know the rash, its like a butterfly rash, right??? Try some UV protection cream, the skin can become quite taunt with SLE. I just hope you can get well soon. I think that sometimes stress just seems to bring the illness faries and all their mates marching on all over your body and its when life seems to improve that they start wearing ski masks and guns and wont give in until you surrender. Hmmm, think I might have the record for the longest sentance there. Anyway, my thoughts are with you, be nice to meet again one day.
Love
Posted: Tue Apr 29, 2008 10:27 pm
by emma_t
Butterfly rash is exactly what the doctor said was a typical sign of lupus - I am slapping on the fake tan everynight and bronzing powder to try and cover it!!
I have spf in my make up and face cream but think I should get something stronger, the doc suggested I slap it on like the american footballers do!!
Somehow I can't see big white stripes down the side of my nose taking off as a fashion!! LOL
Seriously though, thanks for your kind words
Emma x
Posted: Mon May 05, 2008 7:46 pm
by thanna
My dad has lupus and he has to wear a total sunblock,he has check ups for different stuff but i think it has varying degrees the main thing is you get the treatment you need,try to keep positive!![:)]