Scarlett81
New member
for anyone who is interested or future reference,
I got a dx for this problem.
It is henoch schonlein purpura. The link for a descrip of this disease is above. It is anb autoimmune/vasculitis disease. It can also affect your kidneys. Many people have severe kidney disease with this. I don't forutnately and the docs will keep monitoring my kidneys.
my biggest issue with this diagnosis before was why would it be this?-what would cause this? bc henoch schonlein is so rare and mostly a child's illness, and also that my lungs have been so healthy.
well i finally have an answer. its bc of my cepacia.
even though my lungs are is good shape and the cepacia isn't really affecting them much now, my body is fighting the cep anyhow and producing too many antibodies to kill cepacia. the antibodies are what is coming out in my skin-thats what the rash is from, and why my blood vesssels are bursting.
sadly there is nothing they can do for it bc you can't kill cepacia.
but treat the cepacia, you treat the leg problem, theoretically. they also gave me a script for prednisone. thtat will help the swelling.
the reason i bring this all up again is bc any of you that have cepacia-if you are having any type of weird rash, or swelling or pain, even if its rarely, please tell your docs. this henoch schonlein, or other types of immune related reactions can lead to serious kidney disease-even if you feel fine.
I got a dx for this problem.
It is henoch schonlein purpura. The link for a descrip of this disease is above. It is anb autoimmune/vasculitis disease. It can also affect your kidneys. Many people have severe kidney disease with this. I don't forutnately and the docs will keep monitoring my kidneys.
my biggest issue with this diagnosis before was why would it be this?-what would cause this? bc henoch schonlein is so rare and mostly a child's illness, and also that my lungs have been so healthy.
well i finally have an answer. its bc of my cepacia.
even though my lungs are is good shape and the cepacia isn't really affecting them much now, my body is fighting the cep anyhow and producing too many antibodies to kill cepacia. the antibodies are what is coming out in my skin-thats what the rash is from, and why my blood vesssels are bursting.
sadly there is nothing they can do for it bc you can't kill cepacia.
but treat the cepacia, you treat the leg problem, theoretically. they also gave me a script for prednisone. thtat will help the swelling.
the reason i bring this all up again is bc any of you that have cepacia-if you are having any type of weird rash, or swelling or pain, even if its rarely, please tell your docs. this henoch schonlein, or other types of immune related reactions can lead to serious kidney disease-even if you feel fine.