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Tysabri Check In, Support and Information Part Three

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Old 10-03-2012, 02:00 PM #1
coraanne coraanne is offline
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Unhappy 10th Tysabri Infusion and infection...
Hi,
I'm Jenna and I am brand new to this forum! I just had my 10th infusion today. Got results of my newest MRI's and everything is stable YAY!
Here is my problem, I just finished up a 2nd round of doxycyline for and infection of the uterus (Endometritis) This is my third month having problems with this and my OBGYN says there is no normal cause for this infection and my Neuro wants to pull me off Tysabri if I have this infection again this month. I'm scared cause I feel like Tysabri has made my MS stable, but I also don't want to have some weird chronic infection that no one can explain.... and besides it hurts
Has anyone had something similar, or any advice?
Thanks,
Jenna
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Old 10-05-2012, 04:12 AM #2
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Hi Jenna, I started getting a UTI after every infusion (infusion #14-17 which involved antibiotics all the time. We decided to switch to every 8 weeks. That was 2 1/2 years ago and I have not had a relapse even on the 8 week plan. You might ask your neuro if you can try this before being yanked off. Of if that makes you nervous ask for every 6 weeks. Be proactive. Ask for the 6 or 8 week plan and ask the neuro to give you 2-3 months to try it. You might find the infections stop and the drug still helps. Good luck!


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Originally Posted by coraanne View Post
Hi,
I'm Jenna and I am brand new to this forum! I just had my 10th infusion today. Got results of my newest MRI's and everything is stable YAY!
Here is my problem, I just finished up a 2nd round of doxycyline for and infection of the uterus (Endometritis) This is my third month having problems with this and my OBGYN says there is no normal cause for this infection and my Neuro wants to pull me off Tysabri if I have this infection again this month. I'm scared cause I feel like Tysabri has made my MS stable, but I also don't want to have some weird chronic infection that no one can explain.... and besides it hurts
Has anyone had something similar, or any advice?
Thanks,
Jenna
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Old 10-17-2012, 05:58 PM #3
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I'm no doubt repeating the question but I can't trawl through so many pages so I'll ask... does anyone have any home fixes for the borderline UTI/thrush tingle feeling that no doubt comes under the V'itis umbrella of side effects?
Feel like I'm on FIRE!! But swabs and dips are negative.
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Old 10-18-2012, 11:23 AM #4
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I've heard about drinking cranberry juice ?? My ex had a kidney problem, he ate cherries/drank cran-cherry juice.
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Old 10-21-2012, 02:57 AM #5
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I was supposed to get Tysabri next Friday. As you recall I had the bad foot infection from the pedicure that delayed Tysabri by months. They wanted me off antibiotics for at least 2 weeks (which was yesterday) to see if the infection came back before getting Tysabri. Bad news. In the past 48 hours it has come raging back. I sent pictures to the doctor today and he said it looked bad. He said tomorrow morning (Sun) I have to be readmitted to the hospital. They need to drain the new abscess, culture for bacteria (since nothing grew after 6 weeks on the last botched one), and possibly do a bone biopsy if it appears the infection is in the bone. Likely it's more antibiotics. I'm sure I am off Tysabri for a long time--not sure if I'll ever be able to go back on. . I guess the doctors treating this will confer with my neurologist. So sad..........
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Old 06-30-2013, 05:00 PM #6
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Confused Tysabri
I am starting on Tysabri 7-11-13. And I am a little nervous. I've had RRMS SINCE 05 and have been on Gilenya since 2010. Took Rebif b4.
Melissa
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Old 06-30-2013, 08:31 PM #7
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7 come 11. A lucky day to be starting something new.
With all of the DMDs, luck is what you need most of all.
I hope your chances for Tysabri working for you are the best.

Welcome Melissa to NeuroTalk, so nice to meet you.
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Old 07-15-2013, 03:58 PM #8
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Hi Melissa, hope your 1st infusion went well !
On the 9th I had #83 I hope you do, at least, as well as I have!!
Good luck and my best wishes
Linda
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Old 07-24-2013, 03:35 AM #9
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Quote:
Originally Posted by Melissa herlevic View Post
I am starting on Tysabri 7-11-13. And I am a little nervous. I've had RRMS SINCE 05 and have been on Gilenya since 2010. Took Rebif b4.
Melissa
Hope your first infusion went well! Let us know how it is going for you and welcome!
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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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Old 07-24-2013, 03:37 AM #10
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#81 down, JCV negative again...
Life is good!
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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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