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01-31-2008, 08:34 PM | #1 | |||
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Grand Magnate
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I go for my 3rd tysabri infusion next Wenesday, February 6. I had a reaction during second infusion (pain in upper back, shortness of breath, tightness in chest) so I will premedicate with benadryl. I was given benadryl in my iv when experiencing the reaction and it was resolved within 10 minutes. I actually was at the end of my infusion when I told the nurse I was having a problem so I received all of the ty.
I was wondering if anyone else has experienced anything similar. I am hoping and praying that I can tolerate tysabri and it helps. I have noticed a bit of an increase in energy since starting. |
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"Thanks for this!" says: |
01-31-2008, 09:13 PM | #2 | |||
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Elder
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I get my 10th infusion a week from next Monday. I'm glad you started this thread because I was going to ask a question of some of the Tysabri veterans.
My next infusion will be nearly five weeks instead of my normal four because they have such a busy schedule at my doctor's office. Has anybody noticed feeling worse or more tired when they have it a little later than normal? I wish I were having it next week instead, I feel like I need my Tysab-tini soon.
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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: | Riverwild (02-01-2008), SurvivingMSwithHOPE (02-02-2008) |
01-31-2008, 09:37 PM | #3 | |||
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Magnate
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Quote:
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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 diagnosed 09/03/2004 scheduled to start Tysabri 03/05 Tysabri withdrawn from market 02/28/05 Copaxone 05/05-12/06 Tysabri returned to market 06/05/06 Found a new neuro 04/07 Tysabri 05/25/07-present Medical Marijuana legally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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09-26-2008, 07:29 PM | #4 | ||
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Member
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Good luck, Linda |
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09-26-2008, 09:48 PM | #5 | |||
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Elder
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Hi Linda! It will be five weeks, two days on Monday. Last night DH thought I was having PMS, though I'm past that stage in life. I need my Tysabri fix, Monday will be infusion #18 for me... (right RW? )
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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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09-26-2008, 10:13 PM | #6 | |||
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Magnate
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I have never been moved back even a day since the first infusion when they didn't get the vial in time. I've been moved up a day or two for both my convenience or for theirs when the infusion center and the doc and I were in agreement, but never back. I also schedule my appointments at the same time/same day every month for 6-7 months at a time. Is it #18??? Congrats to you, partner!
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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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01-31-2008, 09:46 PM | #7 | |||
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Magnate
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Quote:
__________________
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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02-01-2008, 02:30 AM | #8 | ||
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Junior Member
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Geez, the CRS is bad! I can't even remember who I was responding too!
I too am on Tysabri and started in February of '07. Thus I have had 12 infusions so far. From the very first infusion I was always given two Tylenol and one Benedryl about 20 minutes before the infusion was started. You infusion center didn't do this? For some reason I though it was part of the TOUCH program protocol. As others have stated, I have had very good results from my first year on Tysabri. I had MRI's done about 12 months ago and another set done just last month. No new lesions nor active lesions were found on the new MRI's. My bladder frequency/urgency issues have declined by about 90% and my spastic episodes with my legs have decreased by around 95%. It is more difficult to tell if my cognitive dysfunction has improved. Also my tremor in my right hand is still just as bad. I know that the Tysabri (and all the ABCR drugs) are designed to slow the progression of the disease and not treat the symptoms, so I am very happy to see positive results in the symptom end of things too! Best, Dave |
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"Thanks for this!" says: | D0ct0rT (09-27-2011), Jodylee (02-01-2008), Riverwild (02-01-2008), SurvivingMSwithHOPE (02-02-2008) |
02-01-2008, 02:47 AM | #9 | |||
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Junior Member
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I just had #9 today. I'm tired for the first couple of weeks after my infusion then feeling good a week or two before my next one. I love just going once a month rather than giving myself injections. I am a baby when it comes to needles.
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Vegasgrl . "Old friends pass away, new friends appear. It is just like the days. An old day passes, a new day arrives. The important thing is to make it meaningful: a meaningful friend -- or a meaningful day." Dalai Lama |
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"Thanks for this!" says: | Riverwild (02-01-2008), SurvivingMSwithHOPE (02-02-2008) |
02-01-2008, 07:40 AM | #10 | |||
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Senior Member
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I'm starting Ty on February 13 unless they get a cancellation. I hope someone cancels so I can get in sooner. My infusion center is at my MS neuro's office. I think they need to expand. Wish me luck! I'm very optimistic about Ty. My hopes are high.
I'm gonna start posting about my infusions and keep a log going right after my first one.
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Multiple Sclerosis-Dx May 2007 . |
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"Thanks for this!" says: | Riverwild (02-01-2008), SurvivingMSwithHOPE (02-02-2008) |
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