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Question regards diagnosis


feeling a bit puzzled & upset.

i have a new dr,who ive been seeing for past six months....

after recent blood tests,for a different illness,he now says i do not have lupus?

I was diagnosed in 2010 & was on methotroxate all that time (i dont take it now)

I lost my job due to illness

i gained 4st in weight due to steroids i took after a very bad flare

lost my hair for over 18mths

I always believed/was told by specialist LUPUS is incurable?


Im very upset & frustrated.

any ideas anyone?

4 Replies

I believe that when in remission for Lupus some folks lose the clinical criteria for Lupus such as positive ANA and positive Anti Ds-dna. A naive doc might suggest you no longer have it. I say have the doc confirm your diagnostic history and remission and then enjoy it?

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Lupus IS incurable! If your doctor told you he "cured" you with the steroids, etc. he must be a magician! The person who told you that it was incurable is correct! Doctors are quick to prescribe Prednisone. It's a "band aid." Yes, you will feel better and your symptoms will be come less noticeable - but is it worth it to change your entire appearance? Everyone - or almost every one - gains weight on steroids, and their faces become moon shape. He did not cure you - or maybe you had a positive ANA once for another autoimmune disease. There are hundreds of them. Hair loss can come from a number of things. Hypothyroidism, medications, age, etc. I take Synthroid and I would say over a period of 4 or 5 years, I have about 50% of my hair that I used to have. I have white tile in my home, and the hairs fall out one at a time - I see them on the tile. Over a period of years - think about it. It's time to stop the steroids, go on a strict regimen of exercise (anything - walking, swimming, playing tennis, a gym, etc.) and a diet. It will take some time to lose the weight as your body is "used" to being that way - but you CAN do it! You are not crazy. Doctors DO make mistakes!! We are all here to listen...and to understand. Next week, I am going to a seminar in Broward Country, FLorida, that will address "Living With Lupus." The seminar will have a doctor as the main speaker. Everything we talk about on this forum will most likely be discussed. Stay in touch! And don't get frustrated - just know - we ALL are!


OK. I tend to be jaded & over-react but: -

I think you're at a point where you have to pull up the old records that showed you had lupus as well as your current tests.

(If you want to - ask your current Dr to explain himself a bit more in the context of what nerossa explained about critical criteria) *but most importantly - with records in hand, go for another opinion from an independent Rheumatologist you've not seen before. Preferably separate from all previous Drs. you've seen.

Sorry. I know its hard work.

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Thanks everyone 😊

yes im going to ask for a 2nd opinion i think....

i have tried very hard to diet since & till this day,strangely got bigger since i STOPPED taking steroids,but its an evil circle.

i have arthritis in feet & knees now,so limited to what excercise i can do.

but i wont give up trying & am usually quite positive.

all replies very much appreciated x

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