About Me: Female, 17, rockhampton, Australia, member since Nov 2011
I was diagnosed with lupus nephritis SLE at the age of nine with my double stranded dna at 295 (normal range 0-7), but was thought to have it much earlier in age. Before I was diagnosed and even went to the doctor my parents always thought I was a hypracondreac (exagger
[More]ated) and thought all the pains were just growing pains and e.t.c., I was always a very pale child, which that was the low iron, but these symptoms never alarmed anyone.
Around Christmas 2006 I woke up with swollen fingers and glands and hair was falling out and was very sick, so they took me to our family doctor and she referred me to a paediatrician and she thought it was multiple things but about a week later she came up with lupus.
she got in contact with a nephrologist and discussed my case and arranged for a renal biopsy ( kidney biopsy) under general anaesthetic, I got the procedure done at the royal children's hospital Brisbane and got let out the next afternoon. I was on thirty Prednisolone and much more medication. after i went to the royal children's hospital the nephrologist said to go up to 50 mg because of the lupus affecting my kidneys so went on that and a bit later the double stranded dna went down a little but still had terrible symptoms including very bad knee pains and swollen knees. So i was on 50 mg of Prednisolone and on Mycophenolate, and eventually went on 2 blood pressure tablets and etc for other things. when i was about 11 i got another kidney biopsy because I started getting sicker. and it showed that i was suffering a bit of kidney disorder or something due to my SLE. so my paediatrician and nephrologist agreed to put me on chemotherapy about every two weeks, did that 6 times with infusion and wasn't pleasant though didn't lose all my hair. (luckily) it gave it a big nock on the head for a while my double stranded dna was low but then unfortunately gradually started going back up slowly, also around grade 6 - 7 i went threw depression which affected me terribly and had bad thoughts. The past few years its been up and down, grade 8 when i was 13 i got a terrible rash that was on my chest in the shape of a V and had a butterfly rash on my face, also a rash threw my hair which made my hair fall out more. now i am 15 and not going to school enough 3 days a week at the most. usually 1 day a week. the sickness and medication slowed down my pubity and growing so i didnt get lady things untill i was 14 at the end of grade 9, though in the middle of grade ten i had a giant grow spurt and now am very tall.
Now im on 2.5mg of Prednisolone, 20mg nexium, cyclosporion 150mg, 200mg plaquenill, remipril 5mg, 360mg myfortic, 3mg Melatonin (sleeping tablets).
now natural tablets, Boswellia, Rehmania, Astragalas, Probotica, Fishoil, Bone Support.
think that is it. 11 tablets in the morning and 11 at night. not all exactly the same tablets at night. if you want to ask me any questions about lupus or anything I might know just ask :)
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