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01-21-2010, 12:23 AM
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#431 | |||
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I hear you! 31 cases is a lot to handle mentally, especially since we only had 13 supposedly in September. I am also anxiously awaiting the assay test.
I go for #19 on Monday after 8 weeks break. I'm taking prophylactic antibiotics (Cipro) around the time of the infusion. Cross your fingers that I don't get UTI #5. The only thing I have noticed after 8 weeks is the vision in my left eye is only slightly less sharp (that was the optic neuritis eye) and maybe the balance is a little bit more off but other than that everything seems fine. My energy level has not gotten any worse. I will tell you that my depression has gotten WAY better which makes me wonder if the Tysabri has been causing depression as a side effect. Still, I am sooooooo glad I went on this drug. Quote:
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On Tysabri and love it. . |
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01-22-2010, 06:23 PM
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#432 | |||
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Magnate
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Biogen and reporting on Tysabri numbers-
NEW YORK (Dow Jones)--Biogen Idec Inc. (BIIB) will communicate with doctors once a month on the occurrence of new cases of a rare brain infection in patients using its multiple sclerosis treatment Tysabri, as the biotech strives to find the right balance in keeping the medical and financial communities updated on that important number... I think we played a part in educating Biogen on this one! The article I have is for subscribers only. Drop me a PM for the full article.
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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 diagnosed 09/03/2004 scheduled to start Tysabri 03/05 Tysabri withdrawn from market 02/28/05 Copaxone 05/05-12/06 Tysabri returned to market 06/05/06 Found a new neuro 04/07 Tysabri 05/25/07-present Medical Marijuana legally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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01-24-2010, 04:57 PM
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#433 | |||
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Senior Member
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__________________
Repeal the law of gravity! MS diagnosed 1980. Type 2 diabetes, osteoarthritis, osteopenia. Avonex 2002-2005. Copaxone 6/4/07-5/15/10. Currently: Glatopa (generic Copaxone), 40mg 3 times/week, 12/16/20 - 3/16/24 |
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01-25-2010, 07:47 PM
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#434 | |||
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I had infusion #19 today (after an 8 week break). The slowed down infusion (2 hours instead of 1) is still the way to go for me. I am having relatively few side effects from my infusion which is nice. My eyesight went back to being really crystal clear sharp again!! Strange, huh? It had started to blur up a little over the 8 week break. Anyhow, if I don't get a UTI this time we may go to 6 weeks in between infusions. I'm not sure I want to go back to every 4 weeks for fear of PML and UTI's. It's all still play it by ear.....
__________________
On Tysabri and love it. . |
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01-25-2010, 09:33 PM
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#435 | |||
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Senior Member
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That's great news about your vision, Natalie! It's nice that they're willing to be flexible about giving you breaks from the infusions as needed.
----- There is an article in Motley Fool telling how to get PML updates: http://www.fool.com/investing/high-g...do-is-ask.aspx It seems that ordinary people (non-MDs) will have to ask for the PML updates every month from Biogen's investor relations department.
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Repeal the law of gravity! MS diagnosed 1980. Type 2 diabetes, osteoarthritis, osteopenia. Avonex 2002-2005. Copaxone 6/4/07-5/15/10. Currently: Glatopa (generic Copaxone), 40mg 3 times/week, 12/16/20 - 3/16/24 |
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01-26-2010, 05:55 PM
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#436 | |||
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Magnate
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Quote:
 I noted some lessening of muscle control of my eye when I had the break due to appendectomy last year, along with blurring. It just proved to me yet again that Tysabri actually has a beneficial effect on symptoms for me! Thursday is #35 for me.
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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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| "Thanks for this!" says: | Grammie 2 3 (01-28-2010), Natalie8 (01-26-2010) |
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01-26-2010, 07:35 PM
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#437 | |||
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Member
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Good luck with #35 RW!! Very interesting that you also noticed eye issues with your Tysabri break. My neuro told me Ty. was particularly helpful for cognitive, eye, fatigue problems which is why she recommended it. I hate to mess with the vision which is why I go back and forth about what to do as I near the #24 mark.
Actually, I had a delay in Ty. side effects from the infusion. Later last night I felt very achy, nauseous and spaced out to the point of messing up words. But I've had this happen before and know it goes a way in a couple of days. Quote:
__________________
On Tysabri and love it. . |
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01-28-2010, 05:49 PM
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#438 | ||
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Member
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Natalie, sorry to hear you were feeling rather lousy after infusion
 I am so fortunate that I do so well with my infusions. Tomorrow will be 42 for me  RW, hope all went well today  Anyone see their neuro... get any Ty/pml info? Linda |
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01-28-2010, 06:41 PM
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#439 | |||
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Magnate
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# 35 down and done with the usual no problems and no concerns.
The only new info I have until I see the doc next month for the news from the KOL Conference is from Pit. His chart notes 33 PML cases with the last two unconfirmed as of yet, which is the same number I have. I'll post when Biogen opens their sticky fingers tomorrow and confirms the last two via their investor relations department. The bad part of the new cases is that they all are up there on their doses, ranging from 37 to 52 doses. The US leads now with 11 cases, one more than Germany. http://chefarztfrau.de/?page_id=716 OTOH, Tysabri has now reached what the pharma business refers to as "blockbuster" status, with a billion dollars in sales in 2009. I for one look forward to the assay and a vaccine in the future, cause after 5+ years I am growing weary of working to separate truth from rumor. Biogen's open and honest communication truly needs more work, regardless of the steps they have taken to appease us in the past few months. 
__________________
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: | Natalie8 (01-31-2010) |
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01-28-2010, 07:19 PM
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#440 | |||
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Magnate
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Hey Natalie?
The vision problems I reported could also have been due to all the meds I was on after surgery and during recovery, I forgot about that. I was looped and was happy to stop them, even though I was in love with that measured dose pump full of Demerol!  It was much easier when I was younger for some reason! I'm a lightweight now and even Tylenol 3 and Vicodin hit me hard.
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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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| "Thanks for this!" says: | Natalie8 (01-31-2010) |
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