I got the free Remicade assistance & message from moderator kim

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this is wonderful news ruth!! i am so happy for you...and hope you have success with the medication and get to start the treatments soon. youve been through enough already. ive had some things getting worse and worse myself, last time i wrote my shignles were getting better but the pain worse. the pain is getting better but hte sores open and not healing for some reason. but i had started a general very quick decline in my overall state of being again and about between last thursday and thisp ast tuesay had 14 seizures, most of them very bad. this past tuesday i had the worst ever and my son called the ambulance. while in the er i had my first grand mal seizure despite the meds they had already given me to stop the seizure i had before i came there and another i had after getting there. they started me on dilantin and i believe i am having reaction to it, but htey keep restarting it. i was admitted and

in my opinion declining worse and worse, i believe really becoming pychotic and the seizures though my normal seizures lessoning in number perhaps, these major seizures that i never had beofre continued. the nurse lied to me at one point and reconnected the iv dilantin telling me she wastnt turning it back on, within minutes my hands and arms were swelling and in pain, i had shallow breathing, my heart rate wasnt right, i as cold and clammy arms, i called for her with the button but they wouldnt come. i had another grand mal siezure. after coming out of it and become violently aggressive and insisting to the dr i was being discharged since the nurses lie and they dont listen to me. they promised they wouldnt give it to me again. but that taking it orally i wouldnt have a reaction. i have been so mixed up and confused and not right i agreed but each time i take it i am itchying severely and shollow breathing , cold clammy arms, prickly my

feet and hands, my hands and feet are always very puffy and swollen now. they never once check pulse or blood pressure at all. they wont listen to me. i have seizure every time shortly after taking this medication. my son was with me yeserday at the hospital, the first i had anyone with me at all there, and i had one of my regular complex partial seizures when he called her to tell her, she told him shes not having a seizure. he got mad at her and she said thers nothing wrong with her if she was having a seizure her whole body will be stiff and jerking and she left the room. when i came out of it and my son was crying and told me what happened and i couldnt hardly talk because this happens to me after a seizure i called the nurse and told her im leaving now, theres nothign wrong with me so im leaving the hospital. she got so upset. but i stupidly and nonlogically insisted. she called the dr who

scared me then and said i cant stop the dilantin because i will have more severe grandmals, which that was the very first time they told me i had grand mals by the way, they didnt even bother to tell me i had had them!! he siad i have to watch you to see if you really having a reaction to the medication or not, if you leave how will i know. i was so confused and upset i cant answer him. i just said im so confusedmy heads hurting, if teh nurse dosent know different seizure and never checsk anythign why i shoujd stay if they lie , why i will stay here. what would you do if you re the patient? hes begging and isnisting i cant go, then my husand was calling outside so angry to be bothered to have to come get me and i have to leave. now i dont know what to do. i dotn know am i having reaciton to the drug , is it dangerous? last night i woke twice in seizures not breathing. i cant walk or talk right at lal, is this just transient from going so

high on the drug so quick? and they stopped annother suddently at the same time. i dont know whta to do. and my dr who wont talk to me for long time finally came to see me and said gues what??? it seems your disease is very active now and we have to find a treatmetn , its too bad you had reaction to the remicade...but now we cant start anything because the shingles sores are open , but ehy wont give me antibiotic for the opensores. so they heal faster. good lord i am not logical and rational and i dont know what to do, i even told this to the dr, i told him im not right, help me, so many seizures and in between i know im going to hav eone any minute and im not thinking rihgt. is it the sieuzures the mds, the disease, or im going psychotic...whats wrong with me.?? i know this dr trying to help me best he can. the intern. i dont know what to do. but honestly they dont

believe in listening to the patient or bleieve that a patient can know their body or describe their symptoms, and i might be going nutso sometimes, but i still can tell them whast happening most the time, or my perception of it. and that has to be important doesnt it? my computer hardly workds at all and i sleep almost all the time now. im sorry for never being here. kim ns moderatorolehomepla wrote: Hello Everyone,I have some wonderful news...Centocor Pharmaceutical has approved my application for free Remicade! If any of you have been turned down by your insurance please go to the web site http://www.needymeds.com/programs/remicade.html and apply for the drug assistance program. There is a form to download and take to your dr to fill out. You send it in with a copy of last years tax return. The only problem was with the off label perscribing and it took a few days to investigate and approve it. They will provide the drug and the supplies for the infusion. I may face the cost of the drs office visit but I can handle that.I was so overwhelmed when I got the call I could hardly talk to them and when I hung up the phone I had to sit down and cry. All this time of fighting with the docs to prescribe Remicade and fighting with the insurance company...finially I get to try the drug. I feel like that light at the end of the tunnel might not be a train anymore!Again please if you have been turned down

by the insurace for Remicade try this direction to get the drug!TTFNHave a good day !Ruth

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