Guest guest Posted July 19, 2006 Report Share Posted July 19, 2006 Has your doseage increased and caused the reaction? I am on 5mg/kg at 4 wk intervals. (28 days.) I get 3 1/2 wks out of the infusion-- but the 1st week comes with about 3 days of my brain trying to go on hiatus. My husband is one of those that talks with alot of hand motion. He also loves to use "sound effects." so, to listen to him, watch his hand movements, hold on while he puts sound to the story-- becomes Way too much. The sensory overload is nuts. This I've learned to live with-- but for that 1st week, I want the tv off, the noises gone, and spend most of my time lazing around-- because anything else is too much. I've come to picture it as the Remicade working on the part of my brain that has the sarc-- and yeah, it's those parts that are effected. I figure it's a good sign that it's working to get rid of whatever inflammation is in that part of the brain. You are a very special person to a lot of people so we are all gonna tie a really big knot in the end of your rope an all hang on together! Thank you all for holding me in prayer, I truly do appreciate it. Blessings for us all, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2006 Report Share Posted July 19, 2006 Has your doseage increased and caused the reaction? I am on 5mg/kg at 4 wk intervals. (28 days.) I get 3 1/2 wks out of the infusion-- but the 1st week comes with about 3 days of my brain trying to go on hiatus. My husband is one of those that talks with alot of hand motion. He also loves to use "sound effects." so, to listen to him, watch his hand movements, hold on while he puts sound to the story-- becomes Way too much. The sensory overload is nuts. This I've learned to live with-- but for that 1st week, I want the tv off, the noises gone, and spend most of my time lazing around-- because anything else is too much. I've come to picture it as the Remicade working on the part of my brain that has the sarc-- and yeah, it's those parts that are effected. I figure it's a good sign that it's working to get rid of whatever inflammation is in that part of the brain. You are a very special person to a lot of people so we are all gonna tie a really big knot in the end of your rope an all hang on together! Thank you all for holding me in prayer, I truly do appreciate it. Blessings for us all, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2006 Report Share Posted July 20, 2006 Tracie, I don't know my doseage of Remicade...guess I need to ask about that. I am at 3 weeks since my last treatment and my eyes are doing great. I have been more fatiqued since this last treatment and my brain did seem a bit off also..I was afraid it was the old symptoms coming back. However what you are saying makes perfect sense about how it is hitting the brain. Don't you live in Calif? My late husband family is from Exeter and I am hoping I will be able to go for a visit in January/February of next year. It is the only time of the year I go since I can't deal with it being hot. I think the temp is great then and everyone else is getting their jackets . I went in '04 & '05 but I wasn't able to travel this year and don't look forward to all the medical luggage I will need to take and traveling alone is the pits. The airlines will get me to my next gate and hopefully will carry my medical stuff I take on board. You are in my prayers and I wish there was more I could do. TTFN Ruth > > In a message dated 7/19/06 10:36:47 PM Pacific Daylight Time, > olehomepla@... writes: > > > > Has your doseage increased and caused the reaction? > > I am on 5mg/kg at 4 wk intervals. (28 days.) I get 3 1/2 wks out of the > infusion-- but the 1st week comes with about 3 days of my brain trying to go on > hiatus. > My husband is one of those that talks with alot of hand motion. He also > loves to use " sound effects. " so, to listen to him, watch his hand movements, > hold on while he puts sound to the story-- becomes Way too much. The sensory > overload is nuts. This I've learned to live with-- but for that 1st week, I want > the tv off, the noises gone, and spend most of my time lazing around-- > because anything else is too much. > I've come to picture it as the Remicade working on the part of my brain that > has the sarc-- and yeah, it's those parts that are effected. I figure it's a > good sign that it's working to get rid of whatever inflammation is in that > part of the brain. > > You > are a very special person to a lot of people so we are all gonna tie > > > > a really big knot in the end of your rope an all hang on together! > > > > Thank you all for holding me in prayer, I truly do appreciate it. > > Blessings for us all, > Tracie > Quote Link to comment Share on other sites More sharing options...
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