JENTYL
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Hi everyone. Just joined and would love to exchange thoughts down the road (big supporter of getting this lupus to public for recognistion)However, now I'm desparate Don't know if profile comes up but have it all and for long time. lupus doc very good but he's run out of options for treating me. since he signed oath, he sees my numbers and symptoms and can't ignore w/o treatment. so he gave me arava, just 10 mg. and said it would only cause diarhea. i'm scientific by training and watched carefully that nothing else changed but that one factor. then got horrible back pain (worse than back fusion surgery), migraines (worse than lupus usu.) throwing up (yes, worse than usu.) sweating freezing, hair falling out!!!!! in handfuls, oh, and hiarrhea. i didn't know u could be that sick & still survivie. but after i stopped it (tried to talk to doc, he just had sect two days later leave message that he doesn't think thse symtoms are from arava) and got rid of the symptom (took them for 10 days, took longer to get over them), there were two days where I felt like I felt two years ago, kinda sick but not sick all the time in every cell/organ. then went downhill till last night same as always (horrible) i have to decide if i should get back on this (i already have a dear friend making me a natural wig b/c whatevertreatment, my long tresses will go, i know, at this pt.) maybe for a week and then off. i know it stays in your system for 2 years and even then you have to leach it out. it's the only thing that made me feel good for two days...and i had only prayed for one day just to feel good again i have to decide by tomorrow and any input (i know, have to talk to doc about anything) would be of help in making up my mind. thank you so much and i'm so happy to be sourounded by people who understand and can be supportive and whom i can support as well. yours, leeI have several diseases, a dog and cat...and hope.
Special skills: thanks to my 44 years, I can cry and laugh at the same time!! |
