View Full Version : My 14 year old sister was just diagnosed
08-07-2004, 01:55 AM
I am 22 and my 14 year old sister was just diagnosed with systemic lupus. I don't really know what to expect or what the right thing to do or say is. She seems to be taking it pretty well, however my mother is blaming herself and I don't really know what to do about her either. I am just looking for any kind of information/support......?
This is a wonderful site for support. Your sister is going to be ok as long as she has a good doc and follows instructions on care. Sounds like she has great family support and that is very important. Your mom should not blame herself. Everything will be ok.
08-18-2004, 09:53 AM
Hello & welcome Robinsonjro;
I, like your mother, blamed myself for the fact that my daughter developed, suffered with and eventually succumbed to Lupus. There is a lot of information on the web dealing with genetics and lupus which basically tells us that "It is no one's fault..some of us are genetically predisposed to some form of autoimmune diseases". When I look back at my family, I see that this is true - there is arthritis, asthma, diabetes mellitus, scleroderma, and thyroiditis. We are not personally responsible for our genetic make-up.
Your mother loves your sister and would gladly trade places with her and, like me, wishes that she was dx instead. My Lupus was completely different from my daughter's and that was also very hard for me to deal with.
Like CK said, your sister is ver lucky to have a loving and supportive family - stay that way and you will find that this alone can make a big difference in her outlook on her life, her illness and her future! You are wonderful for caring enough to seek out help and support for her. We are here for all of you whenever you need us!
Best of luck
09-12-2004, 03:19 PM
hi. this is in response to the 22 year old who's sister was diagnosed at 14. i was also diagnosed at 14. i will be 28 on thursday. i like your sister was not too stressed out about it either at that age. as i got older though i began to realize the seriousness of it. it is very important that your sister take care of herself as this will help her when she gets older. i partied in my early 20s and i am paying for it now. let me know if you have any questions i'll be happy to speak to you
09-12-2004, 05:28 PM
Thanks for your response. My sister Kendra, just had another doctors appointment last week and now they have decided to put her on pregnzone, which my parents are really hesitant about becuase of the side effects. Is that what you take? She was on another medication, but because her iron level had dropped so much they had to switch.
You said that you partied alot in you 20's and that you are paying for it now.... does that mean that alcohol is not good for her down the road. I want her to experience what it is like to be a teenager and go to parties but if it makes her worse...I guess it doesn't really matter does it? she is a pretty responsible girl right now and always have been ...so I don't know if she will rebel against it or something.
She doesn't get upset about it...in fact I have only seen her cry once about it...but then again I don't live at home. My mom says that she never wants to talk about it, she doesn't like to read the pamphlets or anything...any suggestions on how to talk to her about it? She hates that my mom is always asking her if she took her medication, how can we respect her but still keep an eye on her health?
Sorry for babbling on so much
09-13-2004, 02:04 PM
yes i do take a very low dose of prednisone right now. please tell your parents to let your sister take this medicine. it is literally a livesaver. yes it does have some side effects. one of the side effects that people hate the most is the weight gain. but she is young she'll drop that weight off as soon as she gets off the medicine. i had to be on prednisone at 14 and i was a freshman in high school. it was a high dose also so i gained a lot of weight. children can be soooo cruel! but it did save my life and i tell you as soon as i got off of it i was slim and trim again. do you know how many miligrams she's having to take and how many times a day? my iron level like hers drops from time to time also. i became anemic. but from what i understand this is pretty normal for lupus. she can take an iron supplement and be fine. and as soon as the lupus gets back under control she won't even need the iron supplement. yes i did party a lot in my early 20's. i wouldn't say that she can't drink alcohol EVER. she just really has to take care of herself. i lived near a college campus in my early 20's right in the middle of two fraternity houses so i was out drinking every night AND smoking tons of cigarettes and i just went totally wild for a few years. when i look back on it i would definately say i was rebelling. i say i am paying for it now because i truly believe in my heart if i would have kept all of that to a minimum i wouldn't have as many aches. i still strugle with cigarettes and starting that habit was a HUGE mistake for anyone but even moreso someone with lupus. my rheumy tells me there hasnt been a tie to cigarette smoking and lupus flares but i really do believe in my heart that there is. and in all my partying i barely got any sleep for being out so late and it was just an overall crazy life for a while there. i have since calmed down, i've gotten married and all of that is behind me. (except the cigarretes, i am still battling with that nasty habit) i am sooo glad your sister is responsible. kendra can have a very normal life as long as she keeps her visits with her doctor and takes care of herself. it's so funny when you say that she dosen't want to talk about it much because i was the same way at her age! i just didn't want to talk about it and i wanted it to disappear. in my case my mother just let me come to grips with it in my own due time. she will come around. don't press her about it. i went into remission by the time i was 16 and i stayed in remission for 10 years. 2 years ago i had a nasty flare that i've been trying to get completely under control ever since. two years ago is when i really started coming to grips with my illness! so give her time. she should definately be aware of her illness but i wouldn't force anything on her. i feel like i'm typing a book here (lol)so if you ever want to talk privately please email me at my msn address. it should be on my profile. otherwise responding here is just fine. i really hope this helps. keep me posted on how she's doing.
09-18-2004, 04:52 PM
First I want to say how sorry I am that your sister has been dx'ed with lupus. Lupus is hard to be dx'ed with at any age. But being so young can add to normal teenage stressors. I am glad that she has a good loving supporting family to get her through this.
Being on prednisone has a lot of side effects. Some are worse than other. Some are down right awful. I have been on the drug as well as dozans of others over the years. I have been on prednisone for 8 years now. From 5mgs to 150mgs daily. The hardest part of being on the drug is the weight gain. I went from a normal weight of 140 pounds to 245 pounds in a matter of 5 months. That was due mostly in part of the IV version of the drug.
I was getting 1000mgs at a time a couple times a month. At one point I had gone into steriod psychosis. I was hospitalized for that for 10 days. I think that is fairly rare. I believe that only happens at extremely high doses. Like the ones I was on. Nowdays I am on a maintence dose. I take 5mgs daily and have been over the past 3 years. When I go into flares I take higher does as needed. Like I will take 65 for a couple weeks then do a taper off over a month. Till I reach my maintence dose again.
Prednisone has saved my life more than once. For me the benefits have our weighed the risks. I continue to take the meds as directed by my doctors. It is kind of one of those drugs that you love to hate and know is important to take.
Today I still battle weight problems. I have 60 pounds to loose to get back to my pre prednisone weight. That I can deal with since the med itself is keeping my flares more controlled.
The more your sister is able to keep her lupus under control the less prednisone she should haave to take. Other people here have mentioned good sites to look at and learn more about the disease. The more knowledge she is armed with the better. Best of luck to your whole family.
09-21-2004, 07:30 AM
A lot has been said about Prednisone and I just wanted to add that my sister and I have both taken it (I in very high doses for kidney problems) and neither of us has had any weight gain. In fact, since we've had Lupus, we can't seem to gain weight no matter what. I do take Calcium with Vitamin D and exercise a bit to counter the effects of Prednisone. (This is aside from all my other meds). I wish your sister lots of luck.....,.,.,
There are lots of us that are younger on this site - she might want to check it out....My sister was dx at age 19, me at 26. We are now ages 25 and 27.
04-24-2005, 01:26 PM
Hi! my name is kait and I am 14. I have lupus and was diagnosed about two years ago. Your sister is in for a long haul. what meds is she on? what symptoms does she have, i'd love to talk with her since we are the same age. perhaps i could give her some tips on how to live life with lupus! thanks