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Old 12-22-2011, 08:13 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
Riverwild's Avatar
 
Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
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Sorry I have been among the missing! It's a combo of work and the season! Hope everyone's doing well.

@Linda - Yippeee on the negative!
Glad to hear that! I predict you are one of the people who are in that percentage of false positive and the 11/10 is the bad one...
Let us know how the doc talk turns out.

@Natalie -did you get your results back yet from your second test?

@Kathy (kadi1805) - Hello and welcome to the thread! Sorry it took so long to answer you, I've been missing for a bit!

Tysabri is designed to slow the progression of the disease and reduce relapses in relapsing/remitting MS. It's an infusion that is administered every 28 days via IV in a certified infusion center or your doctors office in some cases.

Some people who are on Tysabri have a return or an increase in some areas of function, usually because the drug stops/slows the inflammatory process and allows healing to take place.

Others just maintain but report no further relapses or reduced relapses.
Some have no sign of enhancement or new lesions.

Every doc is different in their monitoring of their patients so I can only speak of my experience. My doc saw me every three months when I started until he was satisfied that the drug was working for me. He did an MRI at 6 months and again at 1 year. After that I don't think I had another MRI for 18 months, and that was just to do a check since my insurance paid for it. I now see him every six months.

Insurance is a whole different ball game. There is no set answer for anyone since everyone has a different policy/company and different benefits. The monitoring program (TOUCH) will be in touch () with you and you can ask them to coordinate your benefits or query your insurance company and let you know how it will be paid, but it's usually covered. If they come back and tell you that there's a problem, they will work with you and your doc to overcome the hurdles. They have a program as most drug companies do these days that will help you with the cost of the drug if you qualify, and you may be able to get reduced cost from your infusion center if you qualify.

First visit- vitals taken, then they are supposed to ask you 4 questions and give you a brochure that explains the questions and what you should be reporting. They want to know if you have had any changes in meds, have taken any steroids or immune suppressing drugs or if you have had any changes.

They do the IV access and they run the bag of Tysabri mixed with normal saline fluid over the course of an hour and then they are supposed to watch you for an hour to be sure you have no adverse reactions, and then off you go. Many people report being tired for a day or two after the infusion. Some don't have any problems, some do. In my case, the whole procedure takes about three hours.

Be sure to drink a lot of fluids the day before and prior to your infusion so you are well hydrated so they can find a good vein. Bring something to do (reading, knitting, etc) since you'll be there for a few hours. I usually sleep through mine since I work nights and I never get enough sleep!

If you have any reaction, your doc may prescribe benadryl and tylenol. Everyone's different and so are the docs, but it's become standard to try and treat any allergic reaction before tossing in the towel on infusions.

You can read back through the Tysabri posts and see that each of us have a different course. Come on back and ask any questions you have on your road through this and there is sure to be someone who can help you with answers. Let us know how it goes for you!

(that was a long post!)

Merry Christmas, Happy Hanukkah, Happy Kwanzaa to everyone!!!
__________________
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?


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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
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Negative for JC virus antibodies!
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I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
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