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Old 12-03-2008, 07:49 PM #741
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I've had 8 infusions, and my neuro has not even mentioned an MRI or the antibodies test. I did have bloodwork done at 3 and 6 month mark. The blood I gave in October, the neuro said it was absolutely perfect! So, he didn't seem too worried about my chills and such after infusion.
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Old 12-05-2008, 12:55 PM #742
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Quote:
Originally Posted by Natalie8 View Post
General questions for everyone:
1. How often does your neuro do an MRI while you are on Tysabri? It's standard to have one at the 6th month mark, right? (I just had my 6th infusion). What about after that one?
2. At what point did you all get tested for the antibodies? I think I got panicky after Monday's infusion that I was having some kind of reaction that typically suggests antibodies (nausea, fever, dizziness--at least according to the Tysabri insert). Has anyone developed antibodies further down the line? I think I had the test at the 3 month mark -- never heard anything so I assume everything is ok.
Natalie,
I had an MRI right before I started Tysabri, one at the 6 month mark and one at the 18 month mark.
I have bloodwork every three months, but I haven't had the antibody test, asked about that yesterday, and my doc said that he doesn't test for antibodies unless the patient has some sort of negative reactions and then it would be done at 3-6 month mark. Transient reactions are reported during the first six months by a lot of folks who are on it, they either usually smooth out or get worse and when they get worse, then you look into antibodies. If there's some sort of reaction later after long term infusion history, he would look into it immediately.

Quote:
Originally Posted by 4boysmom View Post
I've had 8 infusions, and my neuro has not even mentioned an MRI or the antibodies test. I did have bloodwork done at 3 and 6 month mark. The blood I gave in October, the neuro said it was absolutely perfect! So, he didn't seem too worried about my chills and such after infusion.
Your neuro may feel that since everything seems to be going along ok except for the chills and stuff, that you don't need an MRI. You may also have restrictions on your insurance since both are VERY expensive. I know my insurance doesn't have any restrictions, but I have an old plan and it doesn't have any restrictions because it is a full service plan, and not an HMO or PPO or Comp Care or Managed Care, so I get them when he wants them with no problems.
__________________
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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Old 12-05-2008, 01:11 PM #743
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OK...now for my report!

NUMBER TWENTY ONE DOWN!!!
In and out in record time of 2.5 hours. No problems, no concerns.
The nurse and I sat and talked about how I am doing. She reports they have 7 Tysabri patients now! There have been a few that came and went but never 7 at once having infusions!

Stopped by to see the doc. I was supposed to have an appt after infusion, but I was there early in the day for testing for something else and he had called my house while I was in the other thing, so I just invited myself up . He said my MRI was wonderful, blood work came in just lovely, gave me a copy of MRI report "to frame", told me don't come back later, and off I went to infusion.

MRI report: NO new lesions, NO enhancing lesions, Further decrease in large lesions previously reported on, some are gone COMPLETELY! Nothing new to report!
Bloodwork: All levels normal, nothing to see here. Normal WBC count means you are clearing Tysabri as you should, liver panels normal, now get out of here.

( I'm pretty sure it's working now...)



__________________
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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Old 12-05-2008, 04:02 PM #744
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I wasn't too worried about the MRI part, because I've had them yearly in March. I figured after a year on Ty, that would probably be when he wanted me to have another done.

My next appt. is in January, so I'll just keep on keeping on!
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Old 12-06-2008, 01:06 AM #745
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That is so so great!!! It put a big smile on my face today. (I was reading this on my I-phone as I was waiting to give blood at the MS clinic).

Quote:
Originally Posted by Riverwild View Post
OK...now for my report!

NUMBER TWENTY ONE DOWN!!!
In and out in record time of 2.5 hours. No problems, no concerns.
The nurse and I sat and talked about how I am doing. She reports they have 7 Tysabri patients now! There have been a few that came and went but never 7 at once having infusions!

Stopped by to see the doc. I was supposed to have an appt after infusion, but I was there early in the day for testing for something else and he had called my house while I was in the other thing, so I just invited myself up . He said my MRI was wonderful, blood work came in just lovely, gave me a copy of MRI report "to frame", told me don't come back later, and off I went to infusion.

MRI report: NO new lesions, NO enhancing lesions, Further decrease in large lesions previously reported on, some are gone COMPLETELY! Nothing new to report!
Bloodwork: All levels normal, nothing to see here. Normal WBC count means you are clearing Tysabri as you should, liver panels normal, now get out of here.

( I'm pretty sure it's working now...)


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Old 12-07-2008, 03:51 PM #746
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After my second Tysabri infusion I had new MRIs of the brain done. Also, no new lesions, none enhancing, and some had disappeared since the MRI done in May of this year.

Just had Ty#3 and having some pain in the lower back but I had that after number two and more fatigue than normal right now. I have high hopes for Tysabri!

Yippee!
Weebs
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Old 12-08-2008, 02:29 AM #747
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Quote:
Originally Posted by weeble37 View Post
After my second Tysabri infusion I had new MRIs of the brain done. Also, no new lesions, none enhancing, and some had disappeared since the MRI done in May of this year.

Just had Ty#3 and having some pain in the lower back but I had that after number two and more fatigue than normal right now. I have high hopes for Tysabri!

Yippee!
Weebs
Yay for the no new lesions, no enhancing lesions and especially for disappearing lesions!!!

Glad to hear it's happening so fast for you!

Thinking on the lower back thing, how's the kidneys? No UTI's brewing, I hope!

Let us know how it goes!
__________________
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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Old 12-08-2008, 10:11 AM #748
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Hi
My name is laurie and the day after Thanksgiving I had my second infusion.
No problems. Just felt a bit itchy after leaving infusion site but no rash. Funny thing was my body itched all over above my waist. Went away after about 45 min. My issues start during the night following. I get very dizzy and nauseus when I get up or even lying down but about 8 hours later and I am good to go until I get hit with the fatigue quick nap and since then I have been fine.
I have begun shedding some symptoms and I've only had 2 infusions they told me maybe after the 3rd. So far I am very pleased.

Hope everyone has great results.
I am very happy to have found this site.
Thanks to all
laurie f
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Old 12-08-2008, 05:40 PM #749
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Quote:
Originally Posted by laurasari View Post
Hi
My name is laurie and the day after Thanksgiving I had my second infusion.
No problems. Just felt a bit itchy after leaving infusion site but no rash. Funny thing was my body itched all over above my waist. Went away after about 45 min. My issues start during the night following. I get very dizzy and nauseus when I get up or even lying down but about 8 hours later and I am good to go until I get hit with the fatigue quick nap and since then I have been fine.
I have begun shedding some symptoms and I've only had 2 infusions they told me maybe after the 3rd. So far I am very pleased.

Hope everyone has great results.
I am very happy to have found this site.
Thanks to all
laurie f
Hi Laurie and welcome to NeuroTalk!

I haven't had any issues after infusions, but I did have the itchies during a few infusions and I didn't have a rash either!
For the last three infusions we have been turning and rotating the bag to remix the solution and that seems to be working for me. It took me 4-5 infusions to figure it out, so try it and see if it works for you! Are you pre-medicating with benadryl or another antihistamine?

Good to hear you have some symptom relief! Let us know how it goes!
__________________
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!
.
Riverwild is offline  
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ewizabeth (12-09-2008), Victor H (12-11-2008)
Old 12-10-2008, 04:37 PM #750
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Riverwild

Thank you for the suggestion I will mention it next time.

thanks
laurie
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