Last reply 4 months ago
medication

Hi everyone,
How did you decide on which medication to pick? I made a decision a long time ago, and have now started to better research my choices. I am on cop axone 20mg- I have had no major issues at all. I just want to make sure Im making the best decision for the long run
Thanks.

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mlgilber1
4 months ago

For me personally, my first neuro told me to do some research, but I trusted her recommendation which was Tecfidera at the time. I wasn’t on it long enough to say if it helped or not. Now my ms specialist feels I need something a bit more aggressive after my last relapse so he gave me 3 options, discussed them with me, then gave me info on all 3 to take home and to then make a decision within a week. He really took his time and made sure all my questions were answered. I decided on ocrevus, but haven’t started yet. At first I didn’t like looking up info because all side effects terrified me and I never saw many positive reviews on any of the dmts (this was before I knew about this website). Now I do a lot more research. I’m really happy you posted this question because I’m also interested on how others made their decision.


dd11
4 months ago

Thank you for your comment @mlgilber1 . I was in grade 12 when i made my first decision and I made the call in an hour of being at the doctors- I chose copaxone because there was minimum side effects and I felt it suited my life position well as i was going into uni. What stood out to you with ocrevus? I was doing a lot of research today and it is very hard to figure out what is best for me (even though what I’m on has not caused any worries by myself of the doctor)


mlgilber1
4 months ago

I’m so sorry to hear that you were diagnosed so young! A couple different things stood out to me about Ocrevus. The 3 that my doctor gave me the option of were ocrevus, gilenya, or tysabri. I’ve heard good things about the other 2 as well and know many people in this site are on those 2. First I looked at side effects. I know they have to monitor your heart at first with gilenya which freaked me out a little because I already get racy, heart palpitations, and chest pains a lot. I’ve had ekgs and nothing seems abnormal, but it still kind of scared me. I know with tysabri it has the potential to cause the brain infection which is why they test for the jv virus every month and that terrifies me even if I come up negative and I wish it didn’t terrify me because I know so many people have great experiences with it. The main side effects that they informed me on with ocrevus was that it suppresses the immune system and they don’t know if it increases the chances of getting breast cancer, but more people on ocrevus than the group with the placebo ended up with it in the long run so it is something to watch out for. I also thought about what works for my lifestyle. I’d prefer to do an infusion every 6 months rather than one a month and I’m not a fan of taking pills especially since I’m already on so many (but adding one more isn’t a big deal). In the end, I also chose ocrevus since it is the more aggressive one of the three and because it suppress’ the immune system. They are still doing further tests on me for neuromyelitis optica (devics) and an immunosuppressant can help prevent relapses for that as well. They currently don’t have treatments for that disease. And I prefer the more aggressive one since I’ve been having relapses so close together. Sorry, I know that was long. Hope it helped, but I’ve also heard great experiences with capoxone!


dd11
4 months ago

@mlgilber1 thank you for taking the time to explain your thought process. It seems to me that you made the right decision for your personal reasons! and that’s why it is hard for a doctor to exactly say which one to use- but it’s a hat decision for us! i wish the best for you .. feel free to message me whenever , this helped me a lot!


mlgilber1
4 months ago

@dd11 It really is a hat decision for us! I’m glad the capoxone has been going well for you! Message me whenever you’d like as well!


ilyssa19
4 months ago

Hi, I decided my medication by having a long appointment with my neurologist about all the options I said. She laid out each option thoroughly and told me the effective rates of each one. She also helped me to decide which ones could be best for a young adult Since I’m currently a student, I decided it was easier for me to take a pill twice a day rather than go for infusions. Thus, I’m on Tecfidera, which has worked for me for almost 2 years.


booh85
4 months ago

I am also type 1 diabetic, so it did cut down my options a bit since I was very concerned about anything that might put further strain on my kidneys. I also think it depends on what fits into your lifestyle. Injections aren’t an issue for me, but remembering is. Taking a pill twice a day isn’t gonna happen for me. We ended up on Tysabri. My doc & I made the decision together, I guess. I just had to be up front about what I was capable of & likely to adhere to.


stumbler
4 months ago

@dd11 , you might find that this tool helps you :-

https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid

It is specific to the UK, so just pretend you live this side of the pond to use it…..

Ocrevus isn’t featured in this tool yet as it is a relatively new treatment for the UK 😉

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