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My 17 yr old daughter was just diagnosed after 4 yrs of being sick
An_252432 posted:
Wow where to begin? I'm so overwhelmed she's 5 weeks into what we now know is a flare and I'm so scared at how horrible she feels. I'd rather it be me. This isn't fair she's been sick a lot her entire life RSV as an infant constant bronchitis and digestive problems. The she hits puberty and had to be put on hormones cause she was bleeding too heavily each month at age 11. Then came these episodes of viral bronchitis 6 times a year - I eventually had to take her out of regular school and enroll her in online classes, but these episodes high fever joint pain muscle pain weakness shortness of breath chest pain lasted for 2 weeks they always said its viral she has asthma so she's going to get bronchitis a lot. But this much??? This May when she became v ery ill 2 things were new that made them concerned her extreme photosensitivity and the horrible bruising that appeared overnight. They finally after years of me begging started running some in depth blood test and boom now we have an answer . But I'm just shocked at how bad she feels especially her chest pain and heart pain. I've been told in the past her lungs were very scarred from asthma but I'm concerned if this has been going on longer what the damage is. I'm about to take her back to the ER her pain in her lungs and heart is increasing her rheumatologist says go up on the prednisone again which we did but she's telling me her lungs hurt to breathe and she's having palpitations . Prayers would be most welcome as I'm trying not to breakdown
lupylisa44 responded:
Unfortunately, your daughter's story is all too familiar! Just about every lupie has gone through something similar. I was diagnosed when I was 19...30 years ago.

With heart and lung pain it could be pericarditis or pleurisy which are both very common in lupus patients.I agree you should take her to the ER, anything involving the heart or lungs can be serious. You will find that now she has a lupus diagnosis, ER docs may find it easier to put 2 2 together than before.

There is a ton of great information on the tips and resurces sections of this site (on the right hand side) I suggest you take a look. There is info on the best books about lupus, and many other topics. The best advice I can give you and your ddaughter is to 1) educate yourself about lupus, 2) be your own advocate don't let doctors or other med professionals dismiss you to quicly. stand up for yourself! 3) keep a health journal 4) wright everything down before you doctor apt so as not to miss anything during your appt's.

Please keep us posted!

With love, with patience and with faith, we'll make our way.
lupylisa44 replied to lupylisa44's response:
Sending prayers your way too!
With love, with patience and with faith, we'll make our way.
Larai68 replied to lupylisa44's response:
Thank you so much! I greatly appreciate it and all your advice. We feel very lucky she is under this rheumys care. They called him at 4 am and he was there by 4:30 they did an IV of 100 mg of prednisone which helped and put her on indocin 75 mg 2x a day today finally she feels good . The only thing is her ankles are very swollen so keeping an eye on that . But we will get thru this and its not the worse thing that can happen. Seeing all those little ones with much more serious health problems puts things into perspective . Take care & thank you again

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