Tysabri Check In, Support and Information Part Three

[shayna]

Originally Posted by Natalie8

Shayna, that's awesome!!! I am so happy for you!!

Thanks Natalie. It was such a relief to finally receive the results and learn that they were negative. Now I can just continue with my wonderful Ty and not receive pressure from family members to take a break. I'm really looking forward to #41

hugs,
Shayna

[shayna]

Originally Posted by komokazi

Congrats Shayna! Finally received my Stratify 2 paperwork last week. Hope to get tested soon (and get results relatively quickly) as I'm now over 4 years on Tysabri.

Thanks Komokazi I hope you receive your test soon. Is there somewhere close to home that you will be able to have the test done????? I had to travel to Fresno, California to have mine done...but it was worth it!!!!!!!!!!

It's amazing to realize that some people have been on Ty for 4 or 5 years. You're an inspiration to all of us

hugs,
Shayna

[clarkstar]

1st infusion in the bag, no problems to report

[Riverwild]

Shayna, glad to hear that you finally received your results and that you tested negative!

Linda, I cannot imagine what is taking so long! I had my results back in less than 4 weeks! Let us know when you get your results!

Chris, I can't believe that you still haven't been tested! It blows my mind that some people have to go through so much to get this test! I would think it would be in the pharmas' best interest to get the long term users tested ASAP.

Clark, so happy to hear that you had your first infusion and that the process went smoothly!

[roadaction13]

hi all - I just got my 6th tysabri infusion; it's my first one since I found out I tested positive for the JC virus.

I was diagnosed 3 years ago and had 2 relatively minor flares with just sensory symptoms but had a pretty major post-partum flare for most of 2010 that peaked with swallowing problems and other scary stuff in the summer.

As a longtime HIV/AIDS activist, I know people who have died of PML (it was still relatively rare but more common in the days before effective anti-HIV drugs, when people became very very immune suppressed). I'm staying on the drug for now, but will be looking for alternatives at the 1 year mark or so.

I still have (maybe permanent) peripheral neuropathy in my feet and legs from the flare, and get my first MRIs since starting tysabri in a few weeks.

I'm wondering if anyone has ever seen statistics that look at women who had their most major or only flare as a post-partum one, and how many of them continue to experience major flares and/or progress to SPMS, and how many go on to not have flares if they don't have other children??

JD

[Grammie 2 3]

Originally Posted by Riverwild

Shayna, glad to hear that you finally received your results and that you tested negative!

Linda, I cannot imagine what is taking so long! I had my results back in less than 4 weeks! Let us know when you get your results!

Chris, I can't believe that you still haven't been tested! It blows my mind that some people have to go through so much to get this test! I would think it would be in the pharmas' best interest to get the long term users tested ASAP.

Clark, so happy to hear that you had your first infusion and that the process went smoothly!

I found out yesterday that I was positive as I said, I will not stop Tysabri. It would have given me peace of mind to be negative but I still feel the blessings of Tysabri for me out weigh the odds of pml... my neuro agrees.
Yesterday I had #52

[Riverwild]

Originally Posted by Grammie 2 3

I found out yesterday that I was positive as I said, I will not stop Tysabri. It would have given me peace of mind to be negative but I still feel the blessings of Tysabri for me out weigh the odds of pml... my neuro agrees.
Yesterday I had #52

I know you'll remain vigilant. You're still a trailblazer!

We don't know that having a positive or negative response makes any difference. We don't know how or when we are exposed to the JC virus. Someone could test negative now and be exposed and test positive six months from now. There may be other factors that make a person develop PML.

I hear that old TV broadcast in my head sometimes. "This is a test of the emergency broadcast system. This is only a test."

I get the stern warning at every appointment and know to report any changes in thinking, affect, vision, right or left sided weakness, etc. despite having a negative test result.

[azoyizes]

I had my 18th Ty infusion last week, and things are going pretty good.

I'm so glad I read the last of your posts, because no one mentioned testing for PML to me. My neuro only mentioned a six month break after two years, but I'm going to refuse. I don't want to backslide. I would rather take my chances.

[legzzalot]

The only good news I got last week... Ty is keeping the lesions at the same count. And My JC Virus testing was neg!
There was an issue with my last infusion (surprisingly not a blown vein this time.) but the medication was sent up a tube and not walked up from pharmacy.... 4 hours later they finally made me a new batch..... it was a royal pain. Took all day. That was Monday. Now here we are saturday, and I am still fighting the sinus infection. Getting better though.

[Grammie 2 3]

Originally Posted by legzzalot

The only good news I got last week... Ty is keeping the lesions at the same count. And My JC Virus testing was neg!
There was an issue with my last infusion (surprisingly not a blown vein this time.) but the medication was sent up a tube and not walked up from pharmacy.... 4 hours later they finally made me a new batch..... it was a royal pain. Took all day. That was Monday. Now here we are saturday, and I am still fighting the sinus infection. Getting better though.

The good news is GOOD NEWS
The medication mix-up doesn't sound like fun-extra four hours
Get well soon
Linda