Tysabri Users - Questions, Questions and More Questions

[Sumanadevii]

I will be having my fourth Tysabri infusion on Monday.  I have been keeping a journal ...It is called "Hoping for a Miracle"...lol...At any rate, I had my first infusion a bit too late and landed in the hospital for thirty days.  The day I was released I had my second.   Now infusion two and three seemed to give me three weeks of great hope.  I move better and am able to walk a bit (nothing to brag about but about thirty feet - three times per day - used more as an exercise as I do believe my walking days are way over).  By the fourth week I crash and crash hard.  Not bad enough to need a hospital but again unable to get in or out of bed on my own and it becomes dangerous for me in the bathroom without supervision.  It is too easy for me to fall.

So my questions:

Do you find the week before infusion a difficult time?

Have you ever heard of someone taking infusion every three weeks rather than every four?  (I recently was reading an MSers blog..unfortunately it was dated 2007..where she said she was being given them every three weeks.  However, no idea if she is just a pretender or if it is possible as I haven't read that any where else).

Did you find as you were on Tysabri a longer time period that things got better...no crash into the fourth week?

I know steroids are a no no...although it is allowed (as in my case) for emergencies.  Has anyone been allowed a low dose pill of steroids (rather than one gram IVSM) during week four?

I would appreciate any advise other users have or hope...I always like the hope part...

[Cosmobirdy]

When I first started Tysabri, I did have the crash during the week before my next infusion.  After the first few months (maybe 6 or 7, hard to remember), I didn't notice that anymore.  I had heard about the crash before I started, so thankfully I wasn't surprised by it.  I'm sorry to hear that you are having such a rough start - I hope things will level out for you soon.

As far as getting infusions every 3 weeks, I don't know much about it.  I, too, remember reading somewhere about a person doing that, but I don't know the details of why or how it turned out.  I have read more things about people spacing the infusions longer than every 4 weeks - going 5, 6 or even 8 weeks between.

I don't know anything about getting low dose steroids during that 4th week.  It certainly would be worth asking your neuro about - it would be great if you could find a way not to have such a dramatic crash each month.

Hang in there,
Rita

[poorkid]

I have been on Tysabri since February and also seem to crash the 4th week.  It did get a bit easier as time went on and I felt such a difference on Tysabri for the better!  The problem for me is that I seem to be very sensitive to the treatment and have had some fairly severe reactions during the infusion.  There are times where I have only received 1/2 of the bag.  I am premedicating very heavily now with Benydryl, etc and it seems to help.  

I am in the middle of my 1st attack since starting and have an MRI tomorrow.  I have an appt with the neuro in a week to discuss if I can stay on Tysabri or not.

I DO think it is working and hate to quit!  

As far as doing it every 3 weeks instead of 4.. That would scare me quite a bit.  It seems to be such a powerful drug and already causes me some issues so I would hate to increase the dose.  I really doubt that they would do that but don't know.

I know I didn't directly answer your questions.  I hope that it continues to help you!   I think that you will begin to see more of an improvement and less problems that 4th week after the 6th infusion.  That seemed to be my magic number.

[Sumanadevii]

That should be advice not advise..