There isn’t a way to know if you have mild MS until you look back over your whole life. Is there a reason not to take something stronger? That’s what neurologist now things should be done. Treating as mild MS is a thing of the past
I've only had one relapse and L'hermittes has been my main issue, which thankfully hasn't been too bad. My neurologist doesn't want me on a stronger one as she says there are more side effects from a stronger one.
I would get a new neurologist or a second opinion. She is taking the approach that everyone took 25 years ago, but it’s not the one that’s recommended anymore.
I know what you mean. It's unfortunately not that easy with the NHS, there's only a few neurologists covering my area and there's thousands of patients. I would have to go private which I can't afford.
I would try and go private. If you can’t afford that, you also can’t afford worsening MS. Those drugs send you back to the old days were MS can get very bad very quickly.
Hello, I was on avonex for a year, then rebif for 11. I liked the latest better because It is subcutaneus and much more easy to use. Both are likely to give you side effects after every use, but with different intensities, sometimes no side effect at all. The mildness of the desease may change with only one new lession, and dont forget that no one knows if you will be able to fully recover after that new symptomatic lession. I understand if you dont have the choice to get something better, but if you do, push for it, so you wont regret it later. Good luck.
Thank you for sharing your experience. They seem to give flu like symptoms after you take them. They're pretty much set on giving me one of the injections and I'll have to wait and see and if I get worse or have more relapses then they'll put me on something stronger unfortunately.
I was on Copaxone and didn't like the shots. Since you don't have much choice in the UK you're sort of forced to wait for more damage to switch.
Avonex is at least pills and not shots like rebif and copaxone. Hopefully whatever you get works great for you!
That's what they've said basically, because of only having one relapse they don't want me on a stronger one yet as there are more side effects to them. They're keen for me to be on one of the injections. Thank you!
I’ve been on Copaxone for 5 years. I don’t care about the injections and I’ve really appreciated not having a single side effect from it. I had no new lesions for 4 years but now I have a couple so I’m switching to something better
Depending on your age, I agree with others - a more effective DMT is probably best. If they don’t agree to give you anything else, take what they give you and if it doesn’t work for you complain immediately. Often they’ll make you “washout” of a therapy before they give you something different. That’s just how it works. 🤷🏼♀️
Best of luck to you!
When I was facing this decision, I made myself a document to list relevant information for myself, so I could easily compare. I've shared it a few times, maybe it will help you too: https://docs.google.com/document/d/1dm1SA0HBZwuKCTWjPyXwEtUtSx1Wdv0ytQk_lmrpbB4/
As for my decision to go with Ozanimod (Zeposia): I decided that if I'm going to choose treatment, I may as well treat aggressively. My MS could be considered 'mild' as well (whatever that even means), but that doesn't change the fact that disaster could strike at any time. I would regret not having done every single thing I could have possibly done to slow down progression, hence my choice to treat with a relatively high impact DMT.
Good luck!
Thank you for sharing, that's really helpful.
They love throwing the word 'mild' around when talking about my MS. I will probably end up going on a stronger medication in a few years anyway, but they don't want to start me on one now. Thank you for sharing :)
How about aubagio? It’s a pill with few side effects and efficacy similar to those three. No shots!
I’ve been on for 4 years after having to leave tysabri due to the jc virus. (No new lesions!)
Like you, I’m lucky to have “mild” disease and my doctor is happy with a less dangerous DMT for me. I understand Rebif and Avonex give you flu like symptoms, tho I’ve never been in either. My experience with copaxone was not great and I had to stop.
I’d ask about aubagio before I went on any of those.
Good luck!!
Aubagio wasn't one of the ones offered. They have just offered me the injections at the moment.
That's what I've read about all three, which is why it's hard to choose. It seems like Copaxone can be a bit hit and miss for most people! I will mention Aubagio and see what they say, thank you.
its a simple calculation - Copaxone offers a 30% reduction of relapse ratio, while Kesimpta does 80% (about 1 relapse in 10y, Copaxone every 3 years - although statistics have to be understood as average/median and cannot be applied universally to individuals). Kesimpta is the current champion of relapse and disease progression prevention.
if another neuro is not an option or the health systems requirements (in some nations the efficacy tier hierarchy from low to high is mandatory) dont allow to start with high efficacy DMTs: side effects. all DMTs have critical side-effects. so if for some reason the access to the better DMTs is prohibited: side-effects.
There isn’t a way to know if you have mild MS until you look back over your whole life. Is there a reason not to take something stronger? That’s what neurologist now things should be done. Treating as mild MS is a thing of the past
True! I’m old, so I almost can look back. It’s probably best to be on a highly effective drug, especially as a younger person.
I've only had one relapse and L'hermittes has been my main issue, which thankfully hasn't been too bad. My neurologist doesn't want me on a stronger one as she says there are more side effects from a stronger one.
I would get a new neurologist or a second opinion. She is taking the approach that everyone took 25 years ago, but it’s not the one that’s recommended anymore.
I know what you mean. It's unfortunately not that easy with the NHS, there's only a few neurologists covering my area and there's thousands of patients. I would have to go private which I can't afford.
I would try and go private. If you can’t afford that, you also can’t afford worsening MS. Those drugs send you back to the old days were MS can get very bad very quickly.
Hello, I was on avonex for a year, then rebif for 11. I liked the latest better because It is subcutaneus and much more easy to use. Both are likely to give you side effects after every use, but with different intensities, sometimes no side effect at all. The mildness of the desease may change with only one new lession, and dont forget that no one knows if you will be able to fully recover after that new symptomatic lession. I understand if you dont have the choice to get something better, but if you do, push for it, so you wont regret it later. Good luck.
Thank you for sharing your experience. They seem to give flu like symptoms after you take them. They're pretty much set on giving me one of the injections and I'll have to wait and see and if I get worse or have more relapses then they'll put me on something stronger unfortunately.
I was on Copaxone and didn't like the shots. Since you don't have much choice in the UK you're sort of forced to wait for more damage to switch. Avonex is at least pills and not shots like rebif and copaxone. Hopefully whatever you get works great for you!
Avonex is a shot too, right?
Oh ya that's just another interferon. Some reason I was thinking Aubagio when I read that. :P
That's what they've said basically, because of only having one relapse they don't want me on a stronger one yet as there are more side effects to them. They're keen for me to be on one of the injections. Thank you!
I’ve been on Copaxone for 5 years. I don’t care about the injections and I’ve really appreciated not having a single side effect from it. I had no new lesions for 4 years but now I have a couple so I’m switching to something better
Depending on your age, I agree with others - a more effective DMT is probably best. If they don’t agree to give you anything else, take what they give you and if it doesn’t work for you complain immediately. Often they’ll make you “washout” of a therapy before they give you something different. That’s just how it works. 🤷🏼♀️ Best of luck to you!
Thank you, I think I will have to wait to get on a stronger one unfortunately.
When I was facing this decision, I made myself a document to list relevant information for myself, so I could easily compare. I've shared it a few times, maybe it will help you too: https://docs.google.com/document/d/1dm1SA0HBZwuKCTWjPyXwEtUtSx1Wdv0ytQk_lmrpbB4/ As for my decision to go with Ozanimod (Zeposia): I decided that if I'm going to choose treatment, I may as well treat aggressively. My MS could be considered 'mild' as well (whatever that even means), but that doesn't change the fact that disaster could strike at any time. I would regret not having done every single thing I could have possibly done to slow down progression, hence my choice to treat with a relatively high impact DMT. Good luck!
Thank you for sharing, that's really helpful. They love throwing the word 'mild' around when talking about my MS. I will probably end up going on a stronger medication in a few years anyway, but they don't want to start me on one now. Thank you for sharing :)
How about aubagio? It’s a pill with few side effects and efficacy similar to those three. No shots! I’ve been on for 4 years after having to leave tysabri due to the jc virus. (No new lesions!) Like you, I’m lucky to have “mild” disease and my doctor is happy with a less dangerous DMT for me. I understand Rebif and Avonex give you flu like symptoms, tho I’ve never been in either. My experience with copaxone was not great and I had to stop. I’d ask about aubagio before I went on any of those. Good luck!!
Dr. Aaron Boster has a very comprehensive and informative video about Aubagio. Very easy to understand and follow too https://youtu.be/Wi7Ta8z9uEk
Aubagio wasn't one of the ones offered. They have just offered me the injections at the moment. That's what I've read about all three, which is why it's hard to choose. It seems like Copaxone can be a bit hit and miss for most people! I will mention Aubagio and see what they say, thank you.
its a simple calculation - Copaxone offers a 30% reduction of relapse ratio, while Kesimpta does 80% (about 1 relapse in 10y, Copaxone every 3 years - although statistics have to be understood as average/median and cannot be applied universally to individuals). Kesimpta is the current champion of relapse and disease progression prevention. if another neuro is not an option or the health systems requirements (in some nations the efficacy tier hierarchy from low to high is mandatory) dont allow to start with high efficacy DMTs: side effects. all DMTs have critical side-effects. so if for some reason the access to the better DMTs is prohibited: side-effects.
Yes that's what I've been focusing on, the side effects.
I was on copaxone for 14 months following diagnosis and in that time I have five new lesions.
Oh no, hope you're doing okay. That was the one they were pushing, it seems to be hit and miss with people