I guess I should start of by saying my MS is progressing at a fairly rapid state. I have been taking Tecfidera for about 11/2 years. my last MRI, taken about 2 months ago, showed one of the largest lesions had shrunk but it also showed numerous new lesions in my frontal lobes. So it is painfully obvious Tecfidera is not working.
Since things were progressing we decided to switch to Tysabri. However, my JC antibodies test came back "Low Level" positive. But there were no Titer levels listed. So for now that has ruled out Tysabri.
I saw my Neuro yesterday to discuss our options since my MS is steadily progressing. I also took my son so I would have an extra set ears. My Neuro said he talked the the Tysabri reps and they read my test results. They told him I was ok to take Tysabri. But, my Neuro, myself and my son all expressed a concern in taking Tysabri because I tested positive.
The end result was. my Neuro was going to get my Titer level, and speak with a colleague in Lafayette who has experience with patients on Tysabri with positive JC antibodies. I am gong to research Gilenya and Monday we will make a decision.
After saying all that my question is what are the experiences of MS'ers on Gilyena? Have you noticed and improvement in your MS? If any what side effects have bothered you the most? And finally is there anything I should be concerned about in taking Gilenya?
MS is scary but the treatments are equally as scary. Any input would greatly appreciated!!
Thank you for putting up with such a long post! But I am at the bottom of the barrel and I am growing more concerned.
Since things were progressing we decided to switch to Tysabri. However, my JC antibodies test came back "Low Level" positive. But there were no Titer levels listed. So for now that has ruled out Tysabri.
I saw my Neuro yesterday to discuss our options since my MS is steadily progressing. I also took my son so I would have an extra set ears. My Neuro said he talked the the Tysabri reps and they read my test results. They told him I was ok to take Tysabri. But, my Neuro, myself and my son all expressed a concern in taking Tysabri because I tested positive.
The end result was. my Neuro was going to get my Titer level, and speak with a colleague in Lafayette who has experience with patients on Tysabri with positive JC antibodies. I am gong to research Gilenya and Monday we will make a decision.
After saying all that my question is what are the experiences of MS'ers on Gilyena? Have you noticed and improvement in your MS? If any what side effects have bothered you the most? And finally is there anything I should be concerned about in taking Gilenya?
MS is scary but the treatments are equally as scary. Any input would greatly appreciated!!
Thank you for putting up with such a long post! But I am at the bottom of the barrel and I am growing more concerned.
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