Looking into IN HOME INFUSIONS ........

We'll,.... It's a new year and these painful Humira shots every week, just are not working, even with the other Meds.  The psoriasis part is showing it's ugly head everywhere.  Legs, elbows, scalp, tummy, and now her face ?!?!  One Angry Momma!!!!!   Her emotions are all over the place :(.  

SO.... I have spent the last couple weeks looking into Home Infusion Therapy for the Remicade, to go back on it.... IF we can afford it!   Insurance is a joke sometimes!!!! When we had to stop these infusions over a year ago, they were billed at over $16,000.00 EACH!!!!    BCBS doesn't pay much of that at Children's Hospital, so I'm looking into how much they would be if a RN came and gave them to her at home.....  Allready made several calls to dr office, insurance companies, pharmacy part of insurance, drug company.... Spent days on the phone back and forth with insurance company just for them to LOOK INTO the possibility of this!!!!!  Because of allergic reactions possible with Remicade they may not do it.  And also they said, I'd have to find an In home infusion therapy company that would come out and stay however many hours needed to run the infusion. :( :( :(.

I'VE SPENT THE LAST EIGHT YEARS ,- ( while she was on Remicade and still in pain and cells attacking her body and especially her eyes,.... Trying to blind her, And that it's made from "mouse protein," (which no momma wants put into their child's body) and her body begins to reject it after a while, (because it's foreign)... and she has always been way over her Max doseage of it,... While taking the low dose Chemo, methotrexate and other Meds AND eye dr treatments,... Drops, etc..., and having to see her Nephrologist often due to blood and protein in her urine, and having the kidney biopsy done.... . And in fear each and every day waiting for the side effects to pop up, ..... Mostly the lymphoma cancer-especially since she was over her max doseage for years!!!!) - HATING THIS DRUG.... Now it's looking like it's the only thing that kept her with less flares and closer to remission.... Although we've never reached remission in the eight years since diagnosis at age 2 !!!!!  She has had to endure so many RARE SIDE EFFECTS of the disease and the drugs, it's ridiculous, when some people can use one pill or shot monthly, and go into remission!!???!

I thought the Humira may have been a blessing in disguise, (when we lost help from CRS and could no longer afford the thousands of dollars per treatment)... but it comes with it's own problems.... Especially the fact that it burns bad going in, even after numbing cream for two hours and ice packs, she still runs from me, hides, and screams!!! :(  and she is now taking over the adult doseage of this!!!! With two other Meds..... And the psoriasis part is appearing more and more! She is sore a lot, especially feet, legs, hands ( which doesn't help with doing her homeschool work) and back/neck.... She doesn't sleep well, and her emotions are all over the place!!!!!!    But to look at her, most times, you can't tell there is anything going on in her little body, but there is SO much happening!  Her body is fighting against itself and can not shut off, thus causing all this damage!!!  Something has Got To Give !!!!!!!!