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02-12-2008, 11:17 AM
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#51 | |||
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Senior Member
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 Can't relax RW.  Not about the Ty. My mom is waiting for biopsy results on a gigantic "mass" behind her heart (she's supposed to have them back tomorrow) and I live 1000 miles away from her. As soon as I get the Ty and mri stuff behind me I will be on a plane going to Pittsburgh. I have to make sure I have the strength to handle this. I'm a tough "broad"  ! Whether it is cancerous or not, she has to have it removed, shrunk or something. It is in a very bad location. Lot's of pain. Wish me luck! Please send some good thoughts my way.  I really don't need to have any problems with the infusion right now.
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Multiple Sclerosis-Dx May 2007 . |
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02-12-2008, 01:04 PM
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#52 | |||
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Elder
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I had my infusion #10 yesterday and it went very well.
I didn't feel as tired afterward as I have in the past, and I worked in the morning too. But I vegged all weekend so maybe that was part of it? Next month will be early, on March 5th. I also need to get my annual MRI done. I'm going to the facility near the neuro's office so he'll have the results when I get to his office for my appt and infusion. Something notable: My neuro knows of another case of cancer possibly related to Tysabri. A patient that had been in the Tysabri trials was off of it for several months. He'd been complaining of feeling forgetful so went in for an MRI. They found an advanced brain tumor that was somehow related to his previous malignant melanoma. I hope it isn't related to Tysabri, but if I had a history of melanoma I'd certainly take note. I have an appt for a baseline skin checkup on Feb 20th. My Mom had skin cancer but I think it was carcinoma. She had fairer skin than me too, FWIW.
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Wiz Turn Left at the next election. . RRMS DX 01/28/03 Started Copaxone again on 12/09/09 |
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| "Thanks for this!" says: | Jodylee (02-12-2008) |
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02-12-2008, 02:22 PM
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#53 | |||
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Member
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Joelle - Hope your treatment goes well on the 13th - please let us know how it goes. I'm not a "praying" person - though with my dx maybe I will become one - or maybe it will confirm my stance - but thats a  for another time LOL - Anyhow - I will be thinking of you out there, somewhere, and that things go smoothly for you - and that Tysabri is the key you need to unlocking a positive future - with less pain and more hope!! Be well!!! ~Keri |
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| "Thanks for this!" says: | Jodylee (02-12-2008) |
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02-12-2008, 02:26 PM
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#54 | |||
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Member
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Riverwild - OMG - that is a LONG time to get there - but I know all the probs in the past with Tysabri... :sigh: Please, ever since I read the posts about the recent developments, I've been wondering, if they pull it here, will they pull it in other countries, and could I get treatment out of the states? Hmmm. I'm going batty. This would be MY dumb luck! But let's not go there!! I will let you know how it goes. I'm prepared to get on this drug and SOON!! ~Keri |
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02-12-2008, 09:52 PM
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#55 | |||
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RW, I am not sure if they slowed it down, I was to nervous to notice! Before I say this, remember my Neuro said "All that has happened with me, well I am in the less than 5% that has a serious reaction" But of course, that would be me! Today is first day I feel somewhat normal. My legs have been aching bad, headache came and went, I swear felt like a spinal headache. Just very achy, blah feeling and very fatigued all weekend and yesterday. My Neuro called me today and said he definately wants me to stay on Tysabri, but my infusions will now take place at a hospital, to be close to doctors trained in anaphylactic emergencies. They are scared of how long it would take if they had to call 911  Well, heck, now I am scared.Has anyone heard of anyone doing their infusion at a hospital due to a severe reaction? My Neuro is hoping my body will adjust to the medication. So, I guess they will overly pre-medicate me or stand there until I can't breathe??  Trying to stay positive! 
__________________
Marcia . . |
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02-12-2008, 09:57 PM
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#56 | |||
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Member
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Sending you good thoughts and vibes, 
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Marcia . . |
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| "Thanks for this!" says: | Jodylee (02-13-2008) |
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02-13-2008, 09:46 AM
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#57 | |||
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Grand Magnate
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Joelle, good luck with everything! Even though I had my appoitntment in the neuro's office they had all of the necessary med's available if they needed it -- benadryl, epi pen, crash cart. Of course my neuro's office is connected to the hopsital by a bridge.
I am also hoping that everything turns out well for your mother. |
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| "Thanks for this!" says: | Jodylee (02-13-2008) |
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02-13-2008, 10:42 AM
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#58 | |||
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Magnate
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Good Luck to you joellelee and prayers are going out for Mom!
__________________
I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away? . I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends! diagnosed 09/03/2004 scheduled to start Tysabri 03/05 Tysabri withdrawn from market 02/28/05 Copaxone 05/05-12/06 Tysabri returned to market 06/05/06 Found a new neuro 04/07 Tysabri 05/25/07-present Medical Marijuana legally 12/03/09 . Negative for JC virus antibodies! . I'm doing alright and making good grades, The future's so bright, I gotta wear shades! . |
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| "Thanks for this!" says: | Jodylee (02-13-2008) |
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02-13-2008, 10:56 AM
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#59 | |||
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Magnate
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In answer to your question about reactions, I have heard of a lot of folks having reactions with their first infusion. In most cases the infusion was slowed, benadryl was administered, the reaction was stopped and infusion continued at a slower rate. They were all advised to premedicate with benadryl pre infusion from that point on. Some do benadryl and Tylenol or ibuprofen. A lot of folks do Claritin so they don't have the drowsies. In all of the cases I have heard of, the infusion was continued with a slower drip rate during following infusions. In all cases the neuro was called and informed of the reaction, and was involved in the decision as to whether or not to continue. I would follow my doctor's advice. Only you and your doctor can decide what to do if you continue to have problems.
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I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away? . I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends! diagnosed 09/03/2004 scheduled to start Tysabri 03/05 Tysabri withdrawn from market 02/28/05 Copaxone 05/05-12/06 Tysabri returned to market 06/05/06 Found a new neuro 04/07 Tysabri 05/25/07-present Medical Marijuana legally 12/03/09 . Negative for JC virus antibodies! . I'm doing alright and making good grades, The future's so bright, I gotta wear shades! . |
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02-13-2008, 04:32 PM
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#60 | ||
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Junior Member
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It seems smart to me to do your next and maybe all future infusions in a hospital because of your reaction...and probably to pre-medicate with benadryl. But I am praying that this is just a one time event for you and all your future infusions are boring but effective.
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| "Thanks for this!" says: | Riverwild (02-13-2008) |
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