I have been diagnosed with MS 2 years ago and use tecfidera.
Now i have to change the treatment because of my lymphocytes keep decreasing.
My neurologist suggested the Zeposia and interferon 1 b.
Is there anyone using one of this treatment ,any side effects…?
I keep stressing i do not know which one to choose.
Thank you in advance.
I am personally on Gilenya, and googling around a little Zeposia seems similar in that it reduces T cells. But isn’t that exactly what you have a problem with about Tecfidera? Seems a little odd to me to change from a medicine that accidentally did it to one that does it on purpose. But I am not a doctor!
Interferons I have been told are the older weaker type of medicine used before the get-rid-of-T cells stuff started. From what I heard, Gilenya was one of the first and they were apparently quite surprised how well it worked all of a sudden compared to earlier medicine. But please don’t take it as gospel. Gilenya at least reduced my lymphocytes to about a third of what it originally was, so as to stop T cells from roasting my brain. It hasn’t quite stopped it, but lots of people are using it well it seems. And then again, from my speedy glances, Zeposia seems rather similar, but also quite a bit newer apparently. Could be a slightly updated version. Seems to be aimed even more specifically at certain types of T cells, though mainly the same ones. It seems. Apparently.
And then it seems the even newer approach is to target B cells instead, so that they do not tell the T cells to go roast the brain. There’s a limit to how much T cells can indeed be safely reduced, but burning all the B cells is apparently less dangerous. So this is stuff like Kesimpta and Ocrevus.
Your doctor will likely know much more than I and be much smarter to listen to, but well overall it seems to be a [how much do you want your immune system weakened + side effects] vs [how strongly do you want to stop the MS symptoms] matter of balance overall with MS. There it seems Zeposia is stronger than Interferon 1b at least. And it also seems to have rather more risks of other various infections and such as a consequence due to the weaker immune system.
Again, it seems. I am only nearing the end of my 2nd year. I like reading up a lot, so I read a lot of various stuff, including some research papers. But anything can be found on the internet, also rubbish. And everyone has different MS. So well trust your doctor and take what I write with a grain of salt. Hope your choice works out well for you!
Just wanted to clarify a little but ended up writing another 100 pages long post, sorry about that.
I personally kept getting relapses/attacks on both my first and now my second medicine, so I am in the “bring out the stronger stuff, ravage my immune system doctor!” camp, and will then see if I can handle the side effects. I imagine things like not stopping the steadily increasing effects of prickling and loss of sensation as well as muscle weakness and the consequences of that. I was unable to walk and jog properly for a month or so during my first year as part of my right large thigh muscle seemed to switch off. 2 times 3day IV steroids stopped it and made it recover mostly, leaving me with just a slightly soft and bouncy leg that needs a little more babysitting while walking, but otherwise works just fine for anything I use it for.
Similarly, I had almost my entire left side from fingertips to toes covered little by little in prickling and the [wearing a plastic cover over my skin] weak sensation thingie that many experience it seems, and that was also stopped and mostly recovered from 2 times 3 days on IV steroids. Various traces linger to remind me of the horrors that could have been.
Now that I am experiencing the 3rd round of such a thing, this time in my face and mouth, again within half a year of the last time, I figure the medicine despite it’s current already present side effects isn’t enough to slow down the disease development as much as I want. And then I make the personal call that side effects beyond apparently very rare ones can perhaps be managed, maybe overcome, maybe lived with, or at the very least mostly removed by removing the cause of them, whereas the disease development happens if it happens and has potentially irreversible debilitating consequences that may severely reduce quality of life permanently. At least I buy some time you could say.
So basically I make the call that I’d rather live with heavy side effects and adjusting my life to them as much as possible than lose usage of my body. I want to have as many children as possible and engage as actively and energetically in their lives as possible. If I then have to otherwise live in a bubble and never do anything other than staying safe then that’s fine.
I’m drawing a caricature hoping it’ll be easier to understand.
Basically I make the call for my own body based on what’s important to me, knowing that it could be a disaster no matter what I choose depending on my luck, essentially.
Similarly, for you as well there is no right choice beyond what you ultimately pick based on what’s the most important for you. Essentially all medicines have side effects that could be as bad or worse than the effects of the actual illness. We all just try to play the odds. What’s really nice these days rather than some time ago is that there are a lot of new kinds of medicine that try to affect the illness in different ways, so there are plenty of alternatives to try. Plenty of attempts with the dice. Whereas we only have so and so much brain that can be roasted.
I am entirely biased towards my choice, because it has so far kept me hanging on to my full mobility by the skin of my teeth. But others have quite the other way around had their lives improved a lot by finally dropping the medicine that was tormenting them and letting the body work it out by itself. There are success stories both ways. Everyone’s got their own MS. I’m starting to drift into saying the same stuff you probably hear 500 other people tell you all the time, so I’ll cut this endless blabbering short, but just basically believe in what your body tells you and try to follow that based on your own priorities, regardless of what you might otherwise hear or read. Nobody else can feel how MS is for you, and nobody else can really tell you whether any medicine is ultimately working out the way you wanted it to, it’s all estimation, generalisation and educated guesswork.
And well indeed strange people writing endlessly long forum posts.
Your own body knows better than anyone! Worrying and stressing out over it also apparently makes the illness progress faster, so pick something and have faith in it for some time at least outside of obvious disaster emergency calls from your body.
Thank you for your kind reply and sharing all the things that happened to you.Yes as you said if do not try we can not know the results.
I am gonna continue with the medication as it seems the right to me.