Tysabri Check In, Support and Information Thread, Part Three!

Come on in and set awhile and let us know how you are doing, ask questions, tell your story or just check out the library!

Thanks for starting the new thread Riverwild

Just a reminder to everyone that this thread is for support for those who are on Tysabri, and for sharing information for those who are considering Tysabri.
Any other discussions related to Tysabri should please move to new threads on the MS forum, so that this sticky thread remains dedicated to just being for support and information, rather than debate.
Thanks!

Wow! I can't believe we are on Part 3! Thanks to all for making this Tysabri thread supportive over the years. It's also hard for me to believe I've been on this drug for exactly 2.5 years. And I remember starting out as a newbie and thinking Riverwild was so so far along. Time flies when you are feeling great!

I still can't believe I have had 47 infusions!

So much has happened since Tysabri first came to market. I think I have forgotten more than I remember about it all, and it's not from damage to my myelin anymore!

I was cleaning out files yesterday and I have this walloping huge Tysabri file with articles and studies and news reports and letters, etc. I just moved it to TWO thumb drives and my computer is blazing speed now!

It's sort of like I am now, as compared to pre-Tysabri. I'm still slow when I overdo, but it's NOTHING like I was before. My brain files are open and clear and running at a speed I never thought I would have again.

Thanks Ted Yednock!!

Happy 2011 everyone

I missed infusion #41 last Friday because of a headache I can't get rid of I think I'm getting a sinus infection but, I'm not ready to begin antibiotics yet. So I'm waiting to see what happens. I didn't want to have an infusion when I wasn't sure what was causing the darn headache. I have appointment next week with my neuro as well as my primary. If the headache isn't gone and I still feel congested I may begin antibiotics. I know the headache was originally caused by allergies but I wish it would either decide to become a sinus infection and I will begin antibiotics or just go away...LOL I think both my neuro and my primary will tell me to begin antibiotics if I still have the headache next week. BTW, headaches due to sinus congestion are common for me so this isn't a new symptom. I just don't know if it's an infection and I can usually tell.

Tomorrow will be 6 weeks since I had the JCV blood draw. I still haven't received the results I know my neuro wants me to stay on Ty regardless of the results of the blood draw because I'm doing so much better on it than I was before. Does anyone know of anyone who tested positive and chose to stay on Ty???????? My neuro did say I could take a few months off if I want to if I test positive. I just don't know what to do. At least I'm not experiencing any withdrawl symptoms from not getting my Ty fix last Friday but it hasn't even been a week. Ty has been wonderful for me!!!!!!!

I caught up on everything that has been happening by reading the posts of Ty part 2. Thanks for all of the info It really helps to know I'm not in this alone and that I can always count on someone here to help find the info I'm looking for.

BTW, Eddie, my wbc is slightly elevated since I began Ty. But, it's so close to being normal that the drs and I have decided not to worry about it.

hugs,
Shayna

I just got my test results....I'm negative I'm doing the "Happy Dance". I've scheduled infusion #41 for this coming Friday. By then I will have seen both my neuro and my primary and I'll know whether or not to begin antibiotics. I've had so many sinus and ear infections that taking antibiotics for them does not stop me from having an infusion. However, feeling crummy because of a darn headache does mean no infusion because I do get side effects from my infusions.

Thank you everyone for listening to me worry and complain about trying to get the darn test in the first place. 8 months is a long time to wait for a blood draw. and, that was a long way to go for one but it was worth it

hugs,
Shayna

Well, me, for now (I just did infusion #8) and I know / have read about others. I have a friend who is at about 2 1/2 years who is antibody positive and is still on drug.

The test shows that, at some point, a person was exposed to JC. It's still unclear, as far as I understand it, how much it increases risk.

JD

Hi All: I have been on Tysabri since Mar. 2011. Got result of postive for the JC virus in May and Neuro started me on Tysabri every other month. Medical carrier was Aetna at that time, now I'm on Medicae effective Sept. 1. Medicare is refusing to pay for infustions every other month, they WILL cover them every month. I understand that every other month is not following prescribing info from Biogen Idec, but, it saves them money if I go only every other month. My neuro now wants me to go back to every month and I'm not sure I want to due that based on the JC virus and numbers I see listed on the internet for PML and JC virus. I would love to hear from positive JC and on Tysabri patients and also from people with MS on medicare and how they have had the drug covered. Thanks all, Pat

Hi Pat and welcome to the Tysabri thread!

Hi Pat, I just had my 61st Tysabri infusion today; I am jcv+. I am on Medicare, 80% is covered thru part B and 20% picked up by my secondary.
Best wishes
Linda