I am going for my 1st infusion Tuesday, the 5th. I have to admit I am very nervous!! So I will be reading this thread with great interest!

I'm hoping for great results, but seems everything I try if there is a side effect I'm the one to get it!!

Hi Marcia! ( Love your name, it was my mother's name too!)

My advice is to relax Tuesday and I hope things go well for you!

Your infusion center/neuro may have you premedicate with Benadryl or Claritin if you have problems during your first infusion. A lot of places have people do that automatically. Be sure to ask them what their procedure is if someone has any reactions.

Please let us know how it goes with you Tuesday! We'll be looking for you!!

Thank you!! "Marcia" spelled this way is uncommon it seems! Your Mom has a great name! All my infusion center said you will be fine... I will relax (or try too), am sure once I get the first one done, I'll be fine. I have this terrible habit of reading the worst that can happen, before I read the good!

Thank you again, and I will for sure check in Tuesday!

I go for #14 a week from Monday.

I've had nothing but wonderful results.

The improvements kind of snuck up on me. I realized after 5 or so infusions that I no longer needed my afternoon nap

I'm back to working full time, my numbness and cog-fog are virtually gone. I have my life back.

My last MRI in November showed no new lesions and some of the old ones were shrinking

I know Ty is not designed to alleviate symptoms. But I think it has given my body the space and time it needs to begin to heal.

It's all good.

I wish the same for all of the others that have joined the "T" Party.

I go for #15 on Wednesday the 6th. I have nothing but good things to say.

I was scrupulously, even obsessively compliant with Avonex for 16 months after my diagnosis and although my MRI was stable my symptoms were not and life had become an endless cycle of exhaustion and pain with 5 rounds of IVSM in 13 months. And although I never complained about side effects and truly did not mind the shots, in retrospect I think Avonex contributed significantly to my fatigue and depression.

I have no side effects on Tysabri. It takes 3 hours every 28 days in a very pleasant, relaxing environment with nurses who are extremely competent, kind and patient despite my lousy veins. Thanks to a them, a very competent, organized neuros office, good insurance and some luck I have had no procedural SNAFUs like some people have had.

I saw significant improvement after the first infusion. But I think that is unusual and mostly because when I started Tysabri, I was still in a lingering miserable flare that had not responded to IVSM. My MRI is unchanged since diagnosis. Fatigue is still my rate limiting symptom and has forced me to "retire" from a profession I love though I still hope to work again after some re-training. But overall my fatigue is much better and easier to manage than before Tysabri. Most days I have only minimal amounts of pain on much less medication.

It's not a cure. I still have symptoms every day and believe that I am still seeing steady albeit very slow progression. But my symptoms are much better my overall quality of life is vastly improved. Although Tysabri is only supposed to decrease relapses and slow progression and MRI changes I completely agree with Karen that by quieting disease activity Tysabri gives your body time to heal itself. which it can do if there is not too much damage already accumulated.

I'm not at all worried about PML though I don't discount the very small risk.
I would recommend Tysabri to anybody who had any problems at all with any other disease modifying med.

That's my long story.

I go for another infusion soon.

I have attached the updated graphs from my Tysabri Log.

-Vic

Attached Thumbnails

 

Great to hear how well some of you are doing on tysabri,I will be talking to my neuro in april when I have an appointment ,this rebif is very hard to deal with anymore...

Good Luck with your neuro appointment, Mr. B!

If you need any information or talking points, just ask and someone will jump in!

Let us know how it goes!

I'm new to this group and looking forward to learning what I can -- and hopefully contributing something as well. My new bride is scheduled for her fourth Tysabri infusion next week after developing antibodies to interferon (Betaserone for a year). Do any of you know the percentage of patients who develop antibodies to Tysabri?

Thanks
JJ

Hi JJ and welcome to NeuroTalk!

The drug monograph lists information for antibodies under "Adverse reactions- Immunogenicity. See pages 9 and 10.

http://64.233.169.104/search?q=cache...lnk&cd=5&gl=us

Hope that helps you!

I had my 10th infusion last week. I haven't been tested for antibodies, but I haven't had any reactions to suggest that they have developed either.

How is your fiancee doing with Tysabri so far?