Tysabri is not working- maybe Gilenya will?

[NettiP]

I have been on Tysabri for over 3 years and had hoped for more. My neurologist is pointing out that over that time period my MRI does not show any new lesions- that is the good news. But I went from no cane to cane to wheeled walker and partial use of the wheel chair.

I would like to hear from people who switched from Tysabri to Gilenya or another treatment modality:
• Why did they switch?
• How long was the washout period?
• Did they have any relapses during the washout?
• Is Gilenya working for them?

[Andy75]

Hi,

I have not been on Tysabri as long as you, but I am considering switching also. The reasons:
1. Feel worse (I know it is not supposed to help with symptoms, but they have increased in number and severity.)
2. Tested JCV+ last month. Hoping it is a false positive, but still....
3. Have terrible veins and not a good candidate for a port

I am not sure if I will switch to Gilenya or wait until BG-12 comes out.

It is a hard decision. Is your doctor open to you trying another med?

[NettiP]

Thanks for you reply. I have basically exhausted all other options. Therefore I have to decide if I will switch to Gilenya or wait for the approval of other drugs next year. All 3 seem to be delayed and I’m desperate! You caught my interest, when you said that you did not expect it to impact your symptoms. Would you mind further explaining....

[Andy75]

I am sorry to hear that you have exhausted all of the other options.

I have had stable MRIs since starting Ty, but my symptoms (e.g., fatigue, vertigo) have increased in frequency. Before starting Ty, I had no issues walking, but now I have started to develop foot drop and have difficulty walking, even doing grocery shopping. I am not using an assitive device, but now I have to hold on to the grocery cart and rest for a few hours when I get home.

I know that Ty is not supposed to alleviate our symptoms. But there are many miraculous stories. One young lady I know went from a wheelchair to walking down the catwalk at a runway show. I am thankful for the stable MRIs, and was hoping for stability in my symptoms, especially balance issues.