LadyRebecca
01-03-2006, 10:46 PM
you are never too young to experience a life changing occurance like the inexplicable reason as to why you cant cross your legs at the age of eight.
at ten i was diagnosed with jra- thats based on all symptoms- my bloodwork came back clean. i was on all sorts of medications until i decided i was sick of the side effects and nothing had ever worked for me. i went completely off medication and at the age of 16 i experienced an awful flare up that sent me to the ER and luckily- my current doctor. [a pediatric rheumatologist; despite my being almost 21]. i took many different medications that prevented flare ups but didnt help the over-all condition.
i was her first patient to be put on humira- at the age of 17. it was and is a LIFE CHANGING drug. i write my name without pain and i have less to no swelling in my knees. HOWEVER-
about a year ago i developed P which is HIGHLY unusual for someone already on Humira.i had it pretty thickly on my scalp- i underwent the traumatic hair loss and itchyness. the scare of seeing your hair dead in your hands in the shower. collecting it at the end and still applying treatments afterwards in hope that MAYBE it will clear enough for new hair to brave the patches. I dont consider myself particularly self concious- as a woman ive improved my body image with the result of humira's effects on my mobility.
soon after my scalp appearances i developed horrible P on my feet. i mean blisters, deep looking wounds... [wound looking crevices- you know those that seem almost cut by a knife] my boyfriend was quite disturbed by the amount of flaking and the fact that it can go from 0-85 in overnight. the acceleration of P is something of a enigma. My scalp has cleared and i have hair but the other day i noticed its coming back. i will try to dilligently treat it. My feet however toggle between awful and downright painful and unbearable in terms of walking [recently went from walking around the flat city of new york to the vertical slopes of san francisco- needless to say im back in new york and enjoying it]
I also developed pitting and thickening of my nails. This is more than a cosmetic problem for me... As my skin around the area has become sensitive and painful i fear i may be losing my fingerprints. I am currently quitting smoking and my nails on my left hand are a lot worse because I am a lefty and i smoke with that hand [i really think the smoking has to do with
the intensity of destructiveness- i have been smoking far too long for someone so young].
My clinical diagnosis has NOT been changed to PA. I was recently changed from JRA to RA for insurance purposes. My doctor is still in the process of working with my symptoms and history.
The P is a burden! [I cant lie and say im not fascinated by its development- it seems to be a beast of its own....] Im wondering if I should switch from Humira to Enbrel...
Im scared because humira is the only medication that has improved my body not just contained it and kept it from getting worse.
If I switch will I experience painful side effects? If i go back to humira will i not feel the benefits as STRONGLY? My P just keeps evolving into more of a problem and my dermatologist seems to have a very passive attitude towards treatment. He hands me things to test and I oblige with desperation. While some of the things he has given me do help - [clobetasol] he has no real understanding of my how my P is coinciding with my arthritis.
should i risk it and switch?
probably. i do have my whole life to live and people who dont understand my pain but are supportive. i think i may be ready to give it a go.
thought i'd just share my story- as i havent met many people that actually know the physical and emotional pain. i'm twenty and from new york. i travel a lot- by car[!] and if you think thats easy with a refrig. med like humira.... you're crazy! i find being on the road less stressful and more benficial to my condition- go figure! =]
at ten i was diagnosed with jra- thats based on all symptoms- my bloodwork came back clean. i was on all sorts of medications until i decided i was sick of the side effects and nothing had ever worked for me. i went completely off medication and at the age of 16 i experienced an awful flare up that sent me to the ER and luckily- my current doctor. [a pediatric rheumatologist; despite my being almost 21]. i took many different medications that prevented flare ups but didnt help the over-all condition.
i was her first patient to be put on humira- at the age of 17. it was and is a LIFE CHANGING drug. i write my name without pain and i have less to no swelling in my knees. HOWEVER-
about a year ago i developed P which is HIGHLY unusual for someone already on Humira.i had it pretty thickly on my scalp- i underwent the traumatic hair loss and itchyness. the scare of seeing your hair dead in your hands in the shower. collecting it at the end and still applying treatments afterwards in hope that MAYBE it will clear enough for new hair to brave the patches. I dont consider myself particularly self concious- as a woman ive improved my body image with the result of humira's effects on my mobility.
soon after my scalp appearances i developed horrible P on my feet. i mean blisters, deep looking wounds... [wound looking crevices- you know those that seem almost cut by a knife] my boyfriend was quite disturbed by the amount of flaking and the fact that it can go from 0-85 in overnight. the acceleration of P is something of a enigma. My scalp has cleared and i have hair but the other day i noticed its coming back. i will try to dilligently treat it. My feet however toggle between awful and downright painful and unbearable in terms of walking [recently went from walking around the flat city of new york to the vertical slopes of san francisco- needless to say im back in new york and enjoying it]
I also developed pitting and thickening of my nails. This is more than a cosmetic problem for me... As my skin around the area has become sensitive and painful i fear i may be losing my fingerprints. I am currently quitting smoking and my nails on my left hand are a lot worse because I am a lefty and i smoke with that hand [i really think the smoking has to do with
the intensity of destructiveness- i have been smoking far too long for someone so young].
My clinical diagnosis has NOT been changed to PA. I was recently changed from JRA to RA for insurance purposes. My doctor is still in the process of working with my symptoms and history.
The P is a burden! [I cant lie and say im not fascinated by its development- it seems to be a beast of its own....] Im wondering if I should switch from Humira to Enbrel...
Im scared because humira is the only medication that has improved my body not just contained it and kept it from getting worse.
If I switch will I experience painful side effects? If i go back to humira will i not feel the benefits as STRONGLY? My P just keeps evolving into more of a problem and my dermatologist seems to have a very passive attitude towards treatment. He hands me things to test and I oblige with desperation. While some of the things he has given me do help - [clobetasol] he has no real understanding of my how my P is coinciding with my arthritis.
should i risk it and switch?
probably. i do have my whole life to live and people who dont understand my pain but are supportive. i think i may be ready to give it a go.
thought i'd just share my story- as i havent met many people that actually know the physical and emotional pain. i'm twenty and from new york. i travel a lot- by car[!] and if you think thats easy with a refrig. med like humira.... you're crazy! i find being on the road less stressful and more benficial to my condition- go figure! =]