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Old 11-06-2008, 07:50 PM
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Riverwild Riverwild is offline
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Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
Riverwild Riverwild is offline
Magnate
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Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
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# 20 DONE!

As usual, no problems, no concerns, scheduled infusions for the next 6 months.

Saw the doc afterwards and had a great discussion after my appt.

#1- my bloodwork showed elevated WBCs. He said this is normal with Tysabri due to the mechanism of action and that if you have inflammation, you will run a fever even if you don't notice it, and MS has inflammation associated with it (lesions!) and that it shows the Ty is doing it's work.
( For Natalie)

#2- ordered an MRI and had to have bloodwork because the MRI peeps are checking everyone before they will do a contrast study (NSF-nephrogenic systemic fibrosis associated with gadolinium). Also ordered the usual liver panel.

#3-talked about the new case (US) of PML and he says he is not prescribing Tysabri for anyone who has been on chemo, novantrone, cellcept, methotrexate, etc. Too big of a risk, drugs stay in system too long, thinks that there will be more neuros prescribing Ty as first line therapy because immune systems are intact and no exposure to strong immunosuppressants, etc.

#4-talked about the EU pts and specifically #2 pt who was in very bad shape with IRIS after the plasmapheresis treatments and mefloquine (antiviral used primarily for malaria)
http://en.wikipedia.org/wiki/Immune_...atory_syndrome


He'd had a look at the MRI from this pt and said the MRI of the PML was a walk in the park compared to the IRIS MRI and that we'd be hearing a lot more about IRIS in the future.

He said that there are studies going on right now with pre-treatment with Remeron http://www.drugs.com/remeron.html and Cyproheptadine http://www.drugs.com/pro/cyproheptadine.html because both of these drugs are 5HT2a blockers and inhibit the movement of JCV into the cells. In addition they are relatively cheap and very effective since they close the door on the JC virus.

All in all a very good (and informative!) appt, although long!

I'm off to bed! LONG LONG DAY!
__________________
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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