hello everyone,
i have a question for you that maybe you can answer or give advice. i am currently taking prednisone for a lupus flare. i have not officially been dx with lupus yet, but my doc said that she blieves that is what is making me sick. i have the history in the family of lupus, my own medial history, and the present medical symptoms of this disease, as well as some labs. my ana tests have all come out negative. my doc agrees with me on negative ana lupus. she said that happens to people alot, where they have lupus, but have on going negative ana tests. so, even with the negative ana, she went ahead and ran the anti-dna and compliment tests and some others. i have not received the results yet. how long does it take for those tests anyway, just curious? i had this done on aug 2nd, along with her prescribing me the prednisone. she said that i have severe photosensitivity. she told me i have to avoid the sun as much as possible, plus with her putting me on prednisone (which causes photosensitivity) i have to completely avoid it. i have pretty much been in my house since, feels like i'm on house arrest!!! i did go out the other day to the movies with my sister, just to get out for awhile, i was in the car and not really in any direct light for maybe 15mins , and low and behold i was severly ill that night. wow!!! i still get very sick. i am almost done with the prednisone, but still having problems. not saying that this medicine cures all, but.....am i not suppose to feel better?? my malar rash fades then all of a sudden comes back with a vengence, i'm still extremely achey in my muscles and joints (especially my legs), my body rash is better, i'm still having fevers, headaches, did not throw up since she put me on the prednisone until yesterday (throwing up is an everyday thing for me), still have extreme fatigue, just about everything as i did before. the only thing i noticed with this med is that my butterfly rash fades at times, but its still there. will i always have this rash or is it a symptom of a flare?? the med also helped with the body rash. everything else is just as bad as before. is the med not working for me? or is this the best i'm gonna get?? i hope i get better than this!! i know that prednisone is a dangerous drug and has alot of side affects with it, so do you think maybe thats why i don't feel better?? like, maybe i'll know when i'm off the med?? also, when i am off this med, will my sensitivity to the sun be as severe?? was it that bad because i have a flare or am i always gonna have it and thats what caused the flare?? she has not put me on other medications for this as of yet, her reasoning was that she knows i'm having seizures and wants to see what type i am having. she is sending me for an eeg/sleep study. we are waiting for my insurance to approve it!! then she is sending me to a neurologist, she thinks the lupus is attacking my nervous system as well. i have had seizures while i have been on the prednisone, is this med suppose to help with that?? i know its a steriod and its for inflamation, so i'm not sure if it helps with the whole brain thing, the seizures. i'm just miserable and trying to cope with this. i think the thing that bothers me the most is....i promised my two kids, ages 5 and 6 years old, to take them to an amusment park, zoo, or camping. since i can not be in the sun, i can't take them. my doc said i can not be in the sun, even with sunscreen, clothed, and a big hat. but i promised them!!! so of coarse the guilt sets in, like i'm sure all of you have felt. so i was thinking about taking them to an indoor thing. they have an indoor water park near me, and i checked out the pictures online. the ceiling of this indoor park is solid, no glass. but i do have problems with flourescents, gives me vertigo, tunnel vision, and dizzieness. but thats far better than what the sun does to me. seems to help when i wear sunglasses in these lights. do you think i would be okay to take them to this indoor park?? i just wanna keep my promise to them, as i feel i'm the reason our family really didn't do anything special this summer and schools starts aug 26th for them. just curious about your thoughts. i heard the plaquenil, hope i spelled it right, is suppose to do wonders for some. i read that it helps with the photosensitivity. if my doc prescribes me that med, and i take it, and my photosensitivity does not get better and the sun still makes me terribly sick, where do i go from there? does that mean i have to live like a vampire the rest of my life?? i have had to give alot of things up in my life because of being sick with back problems and just always being sick. the only thing i had left that i liked to do was be outside. i love the sun, always did. even though i am very fair, i love the sun and have always taken precautions with sunscreen. now its been taken away as well. not sure whats gonna happen from here, but i'm praying it will get better.
the other question i had for you was....okay...i have had no symptoms of a uti or bladder infection. well, i have fevers, but i have those all the time. my urine was taken at my last doc visit and came back okay except for the protein. i have had blood in my urine in the past, not alot, but i saw it. my doc is aware of this. last night, i was really sick, like the lupus hit me again real hard. my face was soooo red and swollen, and i had alot of other symptoms. i went to use the bathroom and when i went pee, it burned soooo bad. it felt like i was peeing acid, and it was terrible. i have had uti's and bladder infections in the past, and this feels different. i don't have the urge to go, or the pressure associated with it. i don't have a yeast infection. then i started thinking, okay, i woke up throwing up all day on and off, i was sweaty but not hot, and now i have burning urination. i thought maybe a kidney infection, but then the burning stopped. so then i thought maybe i didn't drink enough water and prednisone makes people urinate alot. so i made sure i drank more water, but again, i have the burning urination thing again. i really don't wanna go to the emergency room, because they can't diagnose a nose bleed. they never help me, ever. do you guys think this is an infection, the med, or lupus?? i dont think its the prednisone becasue i've been on it since aug 4th and this just started. just very uncomfortable at times. i know its the urine causing the burning, when this burning thing strikes, i sometime have an accident. when i did, i had some urine run down my leg and it burned my skin!!! it actually burned the skin on my leg, didn't leave any marks or anything, but it felt like it could. its just strange. figures, new symptoms of something!!!
if you have any advice or info for me, i would appreciate it. if there is anything you can think of that i should be asking my doc at the next appt. or i should be doing, please let me know. knowledge is power, and i refuse to let this disease beat me!! it may be winning right now, but i will have my turn. and for anybody out there that thinks they have this diesease but can't seem to get a doc to help.....don't give up!!!!! its taken me 5 years and a bunch of serious symptoms to have a doc take me seriously, and there were times i wanted to give up and did, but then i remembered that when god closes a door, he opens a window. don't give up, keep driving forward!!!! thanks everyone and god bless!!
jenn