I recent post here prompted my question. My neuro (who retired two years ago) told me to stop Avonex at age 65. I was dx 25 years ago (when beta was on lottery) and started Avonex 22 years ago. My MRIs have always been stable (a few mild relapses over the years but only CRABS back then) so I continued Avonex.
I now have a new neuro who suggested Ocrevus, if he saw any MRI changes, and compared an old MRI 2004 to latest 2018. No changes: Stay on Avonex. I know that there are many theories about DESCALATION from HIGHER EFFECIACY DRUGS after age 65. I will be turning 53 (mostly stable on Avonex). So, continue Avonex, if it's not broke why fix it?
Although how many folks are continuing treatments after age 65? I know it's controversial, but just looking for feedback from my fellow MSers. Why did you escalate treatment, have you deescalated, or just maintained the status quo? Hoping to start a current discussion on what other folks are doing here. . .
Thanks, in advance, for your input! :)
I am also very interested in this subject. I am 60 years old and have been diagnosed and on Rebif for the last 16 years. My MS specialist says that he doesn't really think the Rebif is doing much anymore (I have been very, very stable on this drug). He means that I would be doing about the same without the drug (immune system not as strong). I trust him, but... There seems to be a possible ulterior motive to this coming off the drug stuff that wasn't present when I was first diagnosed. I think that the high cost of all the newer drugs is forcing the insurance companies to "make rules" to get the best results for the most people. My gut tells me to hang in there, even past 65 years of age. (maybe until 70) This is my life, and I am very reluctant to take chances with it.
Would absolutely love to come off, but I am way too afraid to do that!
One cousin with ms is 77 and she is still on a dmd, I am soon 73 and have been off for about four years. It depends upon what variety of ms you have, she and I both have progressive ms but my variety does not respond to the drug so I am saving a lot of money, giggle.
dmoli01 - Hi, I'm 70 and have been on monthly Tysabri for seven years. I had years and doctors with misdiagnosis or knowing nothing, so I was without treatment for over 40 years. Now, I don't want to continue on Tysbari because of the being positive PML. I have seen people receiving Ocrevus so that might be a possible alternative. As far as I know, I have to still continue treatment forever.