dermatomyositis--Acthar Gel injections
Welp,
here I am, about a year after I was diagnosed with dermatomyositis...and they tell me a end to this craziness is near :D
lets start in the beginning. Last year i began to suffer from fatigue and muscle weakness. I couldn't understand what was going on cause I was a big work out fanatic. I was in excellent shape and worked out at least 4 times a week with a healthy diet. at the time i was a 23 year old newly wed. Thanksgiving 2012 I was going to run a marathon but i was feeling lousy that morning and instead i went to the min clinic and got antibiotics. i wasn't feeling all that bad but i knew something just wasn't right. they gave me antibiotics and informed me that i had high blood pressure. that's the beginning of a LONG year to come.
Things front here just kept getting worse and worse. i felt more tired and continued to get weaker so i went to my family doctor and he did blood work. they found that my liver enzymes were elevated greatly...so then the tested me for EVERYTHING. test after test and they didn't come up with a reason so they sent me to a neurologist and he pin pointed it without a test. he knew right away it was dermatomyositis. They then did a muscle biopsy to confirm it.
They then put me on a high dose of predisone . it has helped but we could not get to a point where i could taper. so here i am....going tomorrow to start my new treatment therapy ,acthar gel . I sure hope it has less side effects then the steroid... i cant risk loosing anymore hair. it just 2 months ago stopped falling out.
but the real reason i wanted to write this is because it is nearly impossible to find info online about acthar and specially achthar being used for dermatamyositis. so ill be updating my progress as i do these injections 2 times a week for 6 weeks !
wish me luck to a good recovery :)
here I am, about a year after I was diagnosed with dermatomyositis...and they tell me a end to this craziness is near :D
lets start in the beginning. Last year i began to suffer from fatigue and muscle weakness. I couldn't understand what was going on cause I was a big work out fanatic. I was in excellent shape and worked out at least 4 times a week with a healthy diet. at the time i was a 23 year old newly wed. Thanksgiving 2012 I was going to run a marathon but i was feeling lousy that morning and instead i went to the min clinic and got antibiotics. i wasn't feeling all that bad but i knew something just wasn't right. they gave me antibiotics and informed me that i had high blood pressure. that's the beginning of a LONG year to come.
Things front here just kept getting worse and worse. i felt more tired and continued to get weaker so i went to my family doctor and he did blood work. they found that my liver enzymes were elevated greatly...so then the tested me for EVERYTHING. test after test and they didn't come up with a reason so they sent me to a neurologist and he pin pointed it without a test. he knew right away it was dermatomyositis. They then did a muscle biopsy to confirm it.
They then put me on a high dose of predisone . it has helped but we could not get to a point where i could taper. so here i am....going tomorrow to start my new treatment therapy ,acthar gel . I sure hope it has less side effects then the steroid... i cant risk loosing anymore hair. it just 2 months ago stopped falling out.
but the real reason i wanted to write this is because it is nearly impossible to find info online about acthar and specially achthar being used for dermatamyositis. so ill be updating my progress as i do these injections 2 times a week for 6 weeks !
wish me luck to a good recovery :)
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