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Are you aware of what SLE (systemic lupus erythematosus) is? Do you think the butterfly rashes on your face is just a normal skin disease? Think again.

Surprisingly majority of the public have no idea what it is (including me b4 I was diagnosed with it), what it can do to damage our body’s immune system etc. If left untreated, it could even be fatal! More & more women (some as young as 10 yeas old) are diagnosed each day. I even saw a male SLE patient at HUKM (Hospital UKM) a few years ago, which means it can attack men as well, only minor. The ratio is - women : men = 10 : 1. Click on the link below to learn more of what SLE is:

http://www.lupusmalaysia.org

I was diagnosed with SLE in 2004, been 3 years on steroids. So far it’s under control (SLE cannot be cured), but the steroids have side effects (causes one to be overweight, skin layer become very thin, prone to osteoperosis & diabetes).

I am interested to meet other SLE patients. Please feel free to add me in Friendster at just_mandy83@hotmail.com. It would be heart-warming to know that I am not alone. Let’s fight this battle together, hope to hear from you soon! :smiley:

[quote=“Mandy83”]Are you aware of what SLE (systemic lupus erythematosus) is? Do you think the butterfly rashes on your face is just a normal skin disease? Think again.

Surprisingly majority of the public have no idea what it is (including me b4 I was diagnosed with it), what it can do to damage our body’s immune system etc. If left untreated, it could even be fatal! More & more women (some as young as 10 yeas old) are diagnosed each day. I even saw a male SLE patient at HUKM (Hospital UKM) a few years ago, which means it can attack men as well, only minor. The ratio is - women : men = 10 : 1. Click on the link below to learn more of what SLE is:

http://www.lupusmalaysia.org

I was diagnosed with SLE in 2004, been 3 years on steroids. So far it’s under control (SLE cannot be cured), but the steroids have side effects (causes one to be overweight, skin layer become very thin, prone to osteoperosis & diabetes).

I am interested to meet other SLE patients. Please feel free to add me in Friendster at just_mandy83@hotmail.com. It would be heart-warming to know that I am not alone. Let’s fight this battle together, hope to hear from you soon! :D[/quote]

mandy83…im sorry to hear tat u got the illness,…hope u can fight thru it,…my mother past away 9 years ago becuz of this illness,…at ta time there was little to be known about this illness…my mother fight it for 3 years but unfortunedly she can’t hold up much longer,…first it attack ur kidneys, then ur heart, lastly ur brain…at tat time my mother was in coma for few days when the condition was critical…

Thank you for your reply EF-JL, I’m very very sorry to hear about your mother. You are a very strong person and I’m sure your mother is very proud to have a child like you. Yes I will be strong as well & keep on fighting, so will the other SLE patients. I’m sure one day there will be a cure for this. We must cherish every moment with our beloved family and friends. Glad to hear from you EF-JL, best wishes & God bless! :slight_smile:

Sorry to hear that mandy…

[quote=“Mandy83”]Thank you for your reply EF-JL, I’m very very sorry to hear about your mother. You are a very strong person and I’m sure your mother is very proud to have a child like you. Yes I will be strong as well & keep on fighting, so will the other SLE patients. I’m sure one day there will be a cure for this. We must cherish every moment with our beloved family and friends. Glad to hear from you EF-JL, best wishes & God bless! :)[/quote

Thank you Mandy83,… yea, cherish every moment no matter what, BTW, are u living here at Miri?..

SLE is a genetic disease
but the symptoms due to it can be treated

mandy, wot is ur monthly cost for ur treatment?

Sorry to hear that you have a disease Mandy…hope you can get well and dont give up fighting the disease

Hmm mandy, thanks for the information. I wouldn have any idea bout this disease if hadn read ur post.
Well, gambatte in ur fight with SLE and God bless. Take care!

sounds very dangerous leh…

To haroldz: Doc told me it cound be genetic, environment, hygiene, diet, stress & other factors. My monthly medical expense is around RM200 (steroids, calcium supplements, power sunblock etc.). Not including the regular follow-ups with MMC physician & Gleneagle Hosp nephrologist.

To bunyimanok, Lim Pek & teamGD: On behalf of all SLE patients, thank you for your support & encouraging words!

To Athrun_zala_faith: Yes SLE is fatal if left untreated. Though we have steroids to control it, but the side effects are hazardous to our health too. Can damage kidneys, brain, lungs, bones etc…

My MMC physician suggested switching from steroids to Cellcept (mycophenolate mofetil) coz it has less side effects, but the nephrologist I consult in Gleneagles KL said no need to switch 1st since my SLE’s under control. Cellcept’s reli expensive too (a friend pharmacist quoted me RM400++ for 50 tabs)! Fainted~!

Has any other SLE patients tried out Cellcept? Are you doing well with less side effetcs? I’m in dilemma now whether to switch medicine or not… Hate steroid’s side effects, make me so fat! :frowning:

[quote=“Mandy83”]To haroldz: Doc told me it cound be genetic, environment, hygiene, diet, stress & other factors. My monthly medical expense is around RM200 (steroids, calcium supplements, power sunblock etc.). Not including the regular follow-ups with MMC physician & Gleneagle Hosp nephrologist.

To bunyimanok, Lim Pek & teamGD: On behalf of all SLE patients, thank you for your support & encouraging words!

To Athrun_zala_faith: Yes SLE is fatal if left untreated. Though we have steroids to control it, but the side effects are hazardous to our health too. Can damage kidneys, brain, lungs, bones etc…

My MMC physician suggested switching from steroids to Cellcept (mycophenolate mofetil) coz it has less side effects, but the nephrologist I consult in Gleneagles KL said no need to switch 1st since my SLE’s under control. Cellcept’s reli expensive too (a friend pharmacist quoted me RM400++ for 50 tabs)! Fainted~!

Has any other SLE patients tried out Cellcept? Are you doing well with less side effetcs? I’m in dilemma now whether to switch medicine or not… Hate steroid’s side effects, make me so fat! :([/quote]

steroid = prednisolone. Calcium suplement, calcitrol is the most expensive.

Mandy,

Sorry to hear your ordeal but i am sure beside the side effect that you have to endure, you probably have grown to a stronger woman than before and your kindness and concern, letting people like us be aware of this kind of knowledge is very noble. Continue your struggle and hope for a better future. Your honorable action is deeply appreciated. I wish you well & health.

Chewei.

mandy,
if u drive car, u can apply for the 100% tinted…
u can go to the General hospital…
meet a doctor (if im not mistaken, indian)
he only come to miri once a month…
get a letter and submit to JPJ…CC to the JPJ boss and the minister of transport…
i know sumone that also SLE patient…got approval…100% tinted all around…
u are not alone…many suffer but keep silent…
ur skin is sooooooooooo sensitive to sunlight…beware of UV…
it can harm and give u rashes…
u need tinted if u r driving car…

To dennos: Yup the calcium supplement I’m currently taking is also very expensive (Fosamax), 1 box 4 biji alredi RM100++ fainted!

To rabbitx: Thank you very much for your encouraging words, they’re very inspiring I’m so touched~!

To silv3r: Thank you for the useful information, wow I didn’t know SLE patients can get approval for 100% tinted car windows. Will definitely try it out!

THANK YOU EVERYONE!!!

for SLE reconmended to take Gamat Healin Gamatol

Are there other SLE patients out there? I would like to know which doctors you consult, I’m in such a dillema right now. Urine got presence of protein, calcium & blood excretion now, bad bad news.

Please PM me or message me in Friendster (just_mandy83@hotmail.com) asap, thanks!

[quote=“Mandy83”]Are there other SLE patients out there? I would like to know which doctors you consult, I’m in such a dillema right now. Urine got presence of protein, calcium & blood excretion now, bad bad news.

Please PM me or message me in Friendster (just_mandy83@hotmail.com) asap, thanks![/quote]

when is ur last check on liver function and kidney function? seem like iether u having over dosage or something is not right with ur organs. streroid always (main problem anyway) to cause kidney function drops rapidly. next to steroids, water is ur best friend to help dilute and keep ur liver and kidney in good condition.

Sorry to hear that you have a disease Mandy…

hope you can get well and dont give up fighting the disease.

More and more people kena lupus! I receive more & more sad news everyday! So I’ve decided to bump this thread to create awareness of this lupus disease. Please be careful everyone!

you are doing great job to arise ppl awareness…sorry tohear that both of you and efjl…
Gambateh,may God bless you