Because information about Tysabri has gotten scattered, here is a place to keep it "together".

We have a LOT of resources available here.

We have people who were in the trials, people who fought to get Tysabri returned to market, people who testified at the FDA hearings both about the drug and the risk monitoring program, and people who are on the drug now!!

This is the place to ask questions, get information, talk to people who are on Tysabri, and help each other out.

I've been on Tysabri since May of 2007. I had my tenth infusion today!! I have had no adverse side effects. My 6 month MRI was the best I have had since diagnosis. I've had amazing results!!

I truly believe that Tysabri is working exactly as it is supposed to work. It's reducing relapses and slowing progression of the disease. Whatever comes after that is gravy, the cherry on top, the extra doughnut in the box!

I got some gravy, too!

I go for my 3rd tysabri infusion next Wenesday, February 6. I had a reaction during second infusion (pain in upper back, shortness of breath, tightness in chest) so I will premedicate with benadryl. I was given benadryl in my iv when experiencing the reaction and it was resolved within 10 minutes. I actually was at the end of my infusion when I told the nurse I was having a problem so I received all of the ty.

I was wondering if anyone else has experienced anything similar. I am hoping and praying that I can tolerate tysabri and it helps.

I have noticed a bit of an increase in energy since starting.

I get my 10th infusion a week from next Monday. I'm glad you started this thread because I was going to ask a question of some of the Tysabri veterans.

My next infusion will be nearly five weeks instead of my normal four because they have such a busy schedule at my doctor's office. Has anybody noticed feeling worse or more tired when they have it a little later than normal? I wish I were having it next week instead, I feel like I need my Tysab-tini soon.

I haven't missed by more than a day, so I can't help you on the length of time. I get the feeling I need more sometimes, usually around middle of the third week. I'm not sure if it's because I am doing more or what, but I would hate to miss an infusion or be late!

Hi Wiz, this is alias lindaincolorado Twice I have gone 5 weeks and it was rough. The fourth week I start to run down, so the 5th was not good. My daughter told me to NEVER do this again
Good luck,
Linda

Hi Linda!

It will be five weeks, two days on Monday. Last night DH thought I was having PMS, though I'm past that stage in life. I need my Tysabri fix, Monday will be infusion #18 for me... (right RW? )

We'll be waiting to see how it goes with you Barb! Just don't forget to premedicate!

Geez, the CRS is bad! I can't even remember who I was responding too!

I too am on Tysabri and started in February of '07. Thus I have had 12 infusions so far.

From the very first infusion I was always given two Tylenol and one Benedryl about 20 minutes before the infusion was started. You infusion center didn't do this? For some reason I though it was part of the TOUCH program protocol.

As others have stated, I have had very good results from my first year on Tysabri. I had MRI's done about 12 months ago and another set done just last month. No new lesions nor active lesions were found on the new MRI's.

My bladder frequency/urgency issues have declined by about 90% and my spastic episodes with my legs have decreased by around 95%. It is more difficult to tell if my cognitive dysfunction has improved. Also my tremor in my right hand is still just as bad.

I know that the Tysabri (and all the ABCR drugs) are designed to slow the progression of the disease and not treat the symptoms, so I am very happy to see positive results in the symptom end of things too!

Best,

Dave

I just had #9 today. I'm tired for the first couple of weeks after my infusion then feeling good a week or two before my next one. I love just going once a month rather than giving myself injections. I am a baby when it comes to needles.