*knock knock*

Can I join you lovelies here? I just went to my neuro and he agrees that my ms is getting worse on Betaseron and so we are going to try Tysabri! I'm very happy with the decision.

Had my JCV blood test done and will hear back from that soon. Anyone know how likely it is that someone will test +?

Welcome msbelle
I do not have an answer to your question, but even if + you can take Tysabri for 2 years with very little to no risk of pml. It would be great if you are -
I have been in the indeterminate range for over a year. The range is .2 or less neg - .4 positive - I have been .24-.28 and most recent .21-.25.
Good luck!
Linda

I read that something like 56% of Canadians are JCV +? That's nuts. I'm still waiting on results from my test.

BUT, funding has gone though and the infusion centre should call me tomorrow to set up my appt NEXT WEEK! Can't wait.

Hey there

It is true that around half of the population is JCV+ ... which is sad for us. Your titre level will be important though. In Australia, if you are over 1.5 then they want you to stop using Ty - I am 2.406. As yet my doc hasn't made me stop so I have stayed on this last six months. Will be seeing him in early Feb so that may change.

It all comes down to what you deem as acceptable risk. I haven't quite figured out mine, but for whatever reason I don't like the sound of the oral meds.

All you can do is research and work out what is right for you.

Here's hoping you are JCV- because it is a wonderful drug.

Regards

They're starting me on Tysabri ASAP even without the JCV results. Is that normal?

You can always stop if your titers are high. Hope it works for you.

Well I just spent the last hour reading through previous posts! I learned so much! What an informative thread! I am sure thankful to be in Canada where I don't have to worry about infusion costs.... that's brutal.

Waiting on the call from the infusion centre so I can get in! I'm going to call them myself on Monday, even though Biogen assured me that they'd call me I am impatient. Especially because I am pretty sure a fall that caused me to have bursitis in my hip seems to be making some other symptoms worse as well. Pre-fall (a week ago) I was walking with a cane. Now even though my hip is almost better I can't walk without a walker. Trauma seems to cause relapses for me so I wouldn't be surprised if that's what's happening.

First off--Welcome MSbelle! Sorry you have to be in this club but happy you have choices in what you treat your MS with! Best wishes for your success on this drug!

Next...I had # 100 on the 22nd! Great day! The nurses threw a surprise party to celebrate, did another interview and had a great time! Total shock over the sneak party, cake, balloons, streamers, flowers, cards!
As usual, no problems, no concerns with infusions!

Even better? (picture sigh of relief here) I applied for assistance from the hospital and I qualified for a payment plan and a discount. It wasn't much and I hated asking but I was on my way under for the third time and tired of fighting the tide but it gives me some relief and time to figure out what I am going to do. (PS! Thanks for all of your helpful suggestions, they gave me good ideas and I am going to act on a few of them!)


I still want to run away with my retirement fund and quit my job and go follow music festivals across the US, with the boat on top of whatever we drive off in so we can live on a river when we're not traveling! (Is this what they call midlife crisis or second childhood?)

Hope y'all are well! Life is GOOD!