Re: Change from Gilenya to Ocrevus
Posted: Thu Mar 01, 2018 3:56 pm
Hello all,
My doctor called me recently to inform me that my MRI results were piss poor (not her words - mine); clinically speaking, I'm doing fairly well (I pass the "no one can tell I have MS test"). I've been on Gilenya for about five years, and notwithstanding certain sensory issues, pain, and fatigue -which could all be residual symptoms from previous relapses- I haven't had a relapse. My MRIs have not shown any sign of disease activity either, until the most recent one. In fact, I saw the Neurologist a few days before the phone call, and she said that I'm doing very well and recommended that I continue as before. She could not comment on the MRI as it was not available when I went to see her. When she did contact me over the phone to tell me about the MRI results, she left it up to me whether or not I want to escalate treatment to Ocrevus. She did note that the lesion they had seen was large. I asked her to go forward with the process, thinking that I'll think it through further, and make my final decision when, and if, the move to Ocrevus is approved by my Insurance.
So, I've been giving it a lot of thought, and I have read most of what the scientific literature, and the limited patient experience that is available. I'm leaning towards going on Ocrevus based on the wisdom of aiming high (e.g., aim for NEDA), but, I thought I would run this by other people who may have been in a similar position to me to see what they think.
While I would certainly appreciate a yay or nay answer, I'm also curious about what factors you would consider in making your decision (if you were in my position).
Thank you in advance,
Kiyaan
P.s - I think it may be worth mentioning that I am a male in my early thirties, with a diagnosis of RRMS.
My doctor called me recently to inform me that my MRI results were piss poor (not her words - mine); clinically speaking, I'm doing fairly well (I pass the "no one can tell I have MS test"). I've been on Gilenya for about five years, and notwithstanding certain sensory issues, pain, and fatigue -which could all be residual symptoms from previous relapses- I haven't had a relapse. My MRIs have not shown any sign of disease activity either, until the most recent one. In fact, I saw the Neurologist a few days before the phone call, and she said that I'm doing very well and recommended that I continue as before. She could not comment on the MRI as it was not available when I went to see her. When she did contact me over the phone to tell me about the MRI results, she left it up to me whether or not I want to escalate treatment to Ocrevus. She did note that the lesion they had seen was large. I asked her to go forward with the process, thinking that I'll think it through further, and make my final decision when, and if, the move to Ocrevus is approved by my Insurance.
So, I've been giving it a lot of thought, and I have read most of what the scientific literature, and the limited patient experience that is available. I'm leaning towards going on Ocrevus based on the wisdom of aiming high (e.g., aim for NEDA), but, I thought I would run this by other people who may have been in a similar position to me to see what they think.
While I would certainly appreciate a yay or nay answer, I'm also curious about what factors you would consider in making your decision (if you were in my position).
Thank you in advance,
Kiyaan
P.s - I think it may be worth mentioning that I am a male in my early thirties, with a diagnosis of RRMS.