... Any advice? It's all a bit overwhelming. We live in New Zealand.She is under the care of a rheumatologist & takes plaquenil-paracetamol-ibuprofen. Her urine has steadily increasing level of protein. Attitude of medical profession is quite unconcerned & relaxed. What is the general outlook for young adults these days?
I don't know of anyone personally, who has had systemic lupus erythematosus, so can't really comment on the sort of symptoms, etc. they would experience. Please try to get more information out of the doctors... I know it can be a bit difficult sometimes. All the best.
The link below has some information about it.
It appears you havent been on this site for a long time. I am a new member and I just came across your question. It saddens me to see that you really didnt get much of a response. I was diagnosed in 1998 and would love to offer your and you some help and support. I don't know everything but I would still like to try. In answer to your question, a very important thing to do every 6 months is to take her to an eye specialist and get special test on her eyes. Not to frighten you but I was on Plaquenil for quite a while and had to stop because it was causing blind spots in my vision. The good thing is that my vision has improved since I stopped. The bad thing is that it was helping me and I had to stop taking it. It takes quite a while to start taking effect when you start taking it. I don't know if you come back to check this site ever but if you respond to this question I will be notified. Helping out a young person and her Mommy would make this disease make more sense to me. Take care.
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