10 months on tysabri and nothing

[BillsMs]

I just came back from the Cleveland Clinc yesterday complaining about tysabri. I am on my 10th infusion and do not feel anything. So my question to the doc was...I have had ten infusions and have not felt any improvment. Should I stay on tysabri or go to something like Copaxone instead....orginallyI was on avonex butwas not feeling that well...been researching tysabri and read all the good posting here about how really good tysabri has helped them....10 infusion fort me and nothing.

Do you think I should stay on tysabri or get off of it and try something else....I haven't read any on this message board that patients have said it has taken a year before they start making improvments....are ther?

I need your guys in put on this...What do you think?

Thank you

BillsMS

[KarenR]

Hi Bill,

Tysabri isn't designed to make you feel better. It is designed to help stop progression.

How are your recent MRI's? Do you have new lesions? Have you had any flares in the last 10 months? Do you feel stable?

What does your neuro say?

Some Ty users get the added benefit of a decrease in their symptoms. But that is just a bonus, and not the purpose of Tysabri.

Be well,

[Rich Marcell]

What she said!

I totally agree with the last post. I've had 32 infusions at this point, have had no symptomatic change at all during that time period (perhaps even some spasdicity increase during that time) but most importantly, no flare-ups nor any change to MRIs during that period.

[lac4x9]

I agree with the previous replies. The relevant questions with these medications is not 'do you feel better', but is instead 'do you feel worse'.

[lindaincolorado]

Hi Bill, sorry I missed your post I agree with the previous posts; just want to reiterate about the MRI-one should have been done at 6 months after being on Tysabri hoping one was done before starting Ty.
Some of the symptom relief is very subtle-balance, stamina.
Best wishes,

[REG53]

Hello Bill

I also agree with everyone else. I have been on Ty for 39 months and I have not had any improvements in my sx.

I have a MRI every 6 mos. and I am remaining stable. I have not had a flare during this time so I know it is working.

[Christine11]

Morning ! In total agreement that you won't feel anything specifically, but if its working you will see that on your MRI. The progression will halt because it's designed to surround your blood cells that are doing the myelin damage. When your MRI is compared to your previous one that is when you know its doing what it was designed to do : ) So now you just have to work on the damage that is already done by taking care of yourself, eating well and keeping stress to a minimum (usually not possible; ). Good luck and I wish you well, Christine

[ewizabeth]

I did not feel better on Tysabri. I thought I did for awhile, but then I realized I felt even a bit worse. My MRI's did seem to get somewhat better though, like my lesions were shrinking or fading on the scans.

At close to the three year mark I went back on Copaxone because I actually felt better on it and I was concerned about PML at that rate. I had no worsening after stopping Tysabri but I'm actually doing great! (knock on wood)

[sandy56]

Somewhat disappointed!

Hi. This is my first post here. I just got the results of my first MRI after being on Tysabri for a year. No improvements evident, but doesn't look like new lesions either!
Even though I didn't count on improvements, I honestly am a little disappointed. That's not rational thinking, but there you go.

[Ceci]

I think this thread goes to show that everyone is different.

I actually feel better after my treatments. My fatigue goes away, my balance improves, and I'm more tolerate to heat then ever before.

My last MRI indicated no new lesions and the ones that I have are shrinking.

[Betsy888]

Tysabri is the only MS med I ever used

It got me my sight back. I hated being blind. I will stay with it always. I did start Ampyra but still need Tysabri cause both helps me in different ways.