TYSABRI

[Mynamegoeshere1]

My doc wants me to start TYSABRI! But I'm terrified of it. Any advice from people on it?

Originally Posted by Mynamegoeshere1

My doc wants me to start [COLOR="blue"]TYSABRI[/COLOR]! But I'm terrified of it. Any advice from people on it?

Im not on tysabri, Im in your boat. My doc wants me to go on it too, but like you, its scares the daylights out of me. I wont do it!!

[Scooter24]

I love it, more energy, once a month IV, feel 500% better than I did on Copaxone and Avonex. I am JCV + also. Just had #24 2 days ago and have no plans to change for at least a year or more, I will let other people test out BG12, everybody is saying how safe it is but they said the same thing about Gilenya and TY at one Time. I get a brain MRI every 6 months to watch for beginning stages of PML. I will take the chance as I would rather have quality of life for a shorter term than what I had for long term.

[LL60]

I can only speak for myself. I was on Copaxone for 5 years, had a reaction to it and became septic.

I have had 35 infusions of Tysabri and the change has been dramatic. It is one infusion every 28 days. I am tired that evening, mainly because of the pre meds - benadryl and tylenol given to keep minor reactions from happening - and sometimes the next morning. Then I am good to go. Had a bad headache sometimes the first few months, don't have that anymore. Had a relaspe after 3 months, have had nothing since then.

Over 90,000 people have been on Tysabri. 212 have gotten PML. Other meds also cause PML. I feel like the odds are in my favor. And I would not want to give up the life I have had these last 3 years. I never want to go back to how things were before Tysabri.

Read read read. Research. And trust your gut.
Good luck to you.

[CougarMama]

I just had infusion #2 and am glad I made the decision to go on the Tysabri. I had previously tried Avonex (horrible side effects and 2 flares in 6 months) and Copaxone (flares every 3-6 months) and realized that I needed to make a decision on how I was going to handle my MS after my last flare, which affected my mobility.

For me it really came down to: 1) was I doing everything that I could to reduce my chances of continued disability (no) and 2) what were my options (tysabri, Gilenya, no meds, rebif, etc.) I really considered Gilenya but my doctor was concerned about the "unknowns" concerning this drug and some of the unusual infections that he had seen with this drug. I agreed to start tysabri but backed out at the last minute, afraid of my decision and the risk of PML. Ultimately for me, though, it came down to a gut feeling that something had changed with my MS and I needed to take action. In my heart I felt I was headed towards a disabling relapse and I needed to do everything I could to avoid it.

Good luck on making your decision. Only you know if it is truly the right mix of risks and benefits for you.

[Mynamegoeshere1]

I got the test and results and I tested negative. I should have nothing to worry about. I'm not scared anymore, but looking forward to a possible relief to everything!

[Mynamegoeshere1]

Ok, so my doc said the results were negative, but I read the report and it showed indeterminate which means it wasn't in fact negative. Now I'm scared again.

[soshime]

and I feel great, for the most part. I stil deal with fatigue daily, but I would DEF not want to go back to how life was before Tysabri. I was a trainwreck, and my brain looked marbled. I'm a bit nervous every time I notice some cognitive changes, but my neuro has such a close watch on me (that's why I heart her so much), with visits every three mos, and MRIs every six mos. (since I'm hi-risk, as I have a previous history of immunosuppressant usage).

I KNOW i'm in great hands. I feel a bit tired, like my batteries have been depleted, a couple days before my next dose, and then tired the day of my dose, and then fine again for the next 3-4 weeks. It's just an hour-long infusion once a month, followed by a period of observation (about an hour long, little less, where the nurses can observe you to see if you're having any adverse reactions to the medication).

If your doc recommends it, there must be a good reason as you're right, it's not a drug to be taken lightly. I'd sit down with him/her, relay my concerns, and give him/her a chance to address those. Do do some more research here on the forums, and in the web at large. And as always, VERIFY your sources, because there's a lot of junk out there.
And good luck - if you have any questions, please feel free to get in touch, ok?

sincerely,
soshime