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  #1  
Old 03-27-2012, 04:13 PM
cocogirl cocogirl is offline
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Having to get off of Tysabri

I had my 40th infusion and one week later I was in the hospital with acute pancreatitis. I do not want anyone to thing the Ty causes pancreatitis because it does not. I just have battled chronic pancreatitis for 3 years and I am at the end of the line on what can be done for me. No, I do not consume alcohol which is the leading cause of pancreatitis but auto immune problems can cause it and that I do have.

I will be having my pancreas removed this summer and I do not need to have anything else that interferes with that. Some might say that an exacerbation would do that but I am talking to my neuro again in another week and he along with my gastro and my surgeon will have to plan the best path for me.

I hate to be off the infusion because of it's help, no new lesions in 3 years. I hate to be off because of the ease of the treatment, one morning out of my life every 28 days.

To all that are on Ty I say fight the good fight. To all considering going on, it is a great drug!

It's been great but I need to start having quality of life again and with me being JCV+ I think it is just too much for my body with all the other issues.

Thanks for all of your help and input these past few years

Cocogirl/Patti
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  #2  
Old 03-27-2012, 05:11 PM
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momof4boys momof4boys is offline
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Good Luck

Patti
Wishing you the best with your upcoming surgery. I'm sorry you have to go off Tysabri but I'm glad it worked as well as it did when you were on it.
I'm going to fight the good fight on Tysabri as long as I can. I had my first infusion 2 weeks ago.

Good Luck with everything~
Amy
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  #3  
Old 03-28-2012, 07:26 AM
cocogirl cocogirl is offline
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Amy, I will try this again. I am praying you do as well as I have done and even more. With your boys that need you to be able to do as much as possible, you need the benefits of Ty. I would still be on it but I had to many other health issues that were MS unrelated. Take care of yourself!
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  #4  
Old 03-28-2012, 09:12 AM
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hotwing hotwing is offline
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TAKE CARE.

Quote:
Originally Posted by cocogirl View Post
I had my 40th infusion and one week later I was in the hospital with acute pancreatitis. I do not want anyone to thing the Ty causes pancreatitis because it does not. I just have battled chronic pancreatitis for 3 years and I am at the end of the line on what can be done for me. No, I do not consume alcohol which is the leading cause of pancreatitis but auto immune problems can cause it and that I do have.

I will be having my pancreas removed this summer and I do not need to have anything else that interferes with that. Some might say that an exacerbation would do that but I am talking to my neuro again in another week and he along with my gastro and my surgeon will have to plan the best path for me.

I hate to be off the infusion because of it's help, no new lesions in 3 years. I hate to be off because of the ease of the treatment, one morning out of my life every 28 days.

To all that are on Ty I say fight the good fight. To all considering going on, it is a great drug!

It's been great but I need to start having quality of life again and with me being JCV+ I think it is just too much for my body with all the other issues.

Thanks for all of your help and input these past few years

Cocogirl/Patti
PATTI,

SO SORRY TO HEAR ALL OF THIS AND THE LONG BATTLE YOU HAVE HAD WITH THE PANCREAS.

I WISH YOU ALL THE BEST IN MAKING DECISIONS IN THE UPCOMING WEEKS AND MONTHS AS YOU MOVE FORWARD IN CONSULTING WITH PHYSICAINS AND YOUR HEALTH CARE.
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  #5  
Old 03-28-2012, 09:32 AM
lindaincolorado lindaincolorado is offline
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Join Date: Dec 2006
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Patti, I, too, am so sorry for your health issues and your need to go off the med you have been happy with

I hope all goes well with your surgery and health!

Best wishes
Linda
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  #6  
Old 03-31-2012, 07:19 AM
cocogirl cocogirl is offline
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Thank you Hotwing and Linda for your support and kind words! I had the stint removed yesterday that was supposed to have moved on out of the duct on it's own. The Dr. noted that there was extreme stricture in the Common Bile Duct again. I just wish I knew how much Ty plays into any of this, if any. I will have a few days to relax before I go to the neuro and the gastro so I plan on enjoying it the best I can! You all fight on with the Ty!
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  #7  
Old 03-31-2012, 04:54 PM
Myoak Myoak is offline
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I pray your heart and mind are strengthened in the comfort of Godís very own love for you, Coco.
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  #8  
Old 04-01-2012, 02:33 PM
cocogirl cocogirl is offline
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Myoak, thank you so much for your words of comfort and encouragement! God has been very good to me and will continue to do so!
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  #9  
Old 04-20-2012, 07:43 AM
soshime soshime is offline
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best of luck, Cocogirl!

I think we met in a convo-room once. . . but anyways, i'm sorry to hear you have to go off of Ty, and wish you the best of luck with your upcoming pancreas surgery. i too know what it's like to be on the awesomeness of ty for too long and its ease - i go for dose #57 this morning. '='
so, be well and be merry. BG-12 i coming soon.

soshime
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