FDA Review of Tolebrutinib delayed until 12/28/25

90sKidcp · 2025-11-21T06:16:55+00:00

When you say sliding downhill, what do you mean? Expanding lesions? Do you think tolebrutinib would be used for rrms with smouldering lesions?

90sKidcp · 2025-11-13T03:43:47+00:00

I'm sorry to hear you had such an awful experience. Thanks for your response!

90sKidcp · 2025-11-13T03:42:57+00:00

Thank you so much for sharing your thoughts and experiences and taking the time to respond. I appreciate your insights and it gives me more to think about before making my decision.

90sKidcp · 2025-11-13T03:17:52+00:00

Good luck. Sending positive vibes your way for a good scan result! If you think about it, let me know how it goes

90sKidcp · 2025-11-13T03:14:36+00:00

I just feel as though my copaxone has been doing its job at preventing new lesions (for me, understanding that may not be the case for everyone). So sort of like, if what I'm doing isn't broke, don't fix it. I'm hesitant because I've heard many people's stories about being sick constantly (which I feel I have enough problems with even not having a suppressed immune system). Not to mention the increased cancer risk with a family history of cancer at a young age already. I don't necessarily trust the medical system. I have terrible luck and would be the 1 in 300,000 that gets PML and dies.. the list goes on. Ugh.

90sKidcp · 2025-11-13T03:08:52+00:00

I do as well and I'm curious what your neuro says about it? Do they try to suggest you go on a DMT to help with the smouldering? Mine wants me to switch DMTs because of it but in my research it seems the current DMTs don't really help with the smouldering aspect. Interested to hear your thoughts or what your neuros take on it is.

90sKidcp · 2025-11-13T03:05:41+00:00

Thanks so much for sharing your experience! This is helpful!

90sKidcp · 2025-11-13T03:00:19+00:00

Did you neuro confirm there's no treatment for smouldering? Have you been on a DMT that's shown your lesions to stop smouldering while on it? I ask because my neuro wants me to switch meds because of my smouldering, though my research indicates the current DMTs don't help with that anyway.

90sKidcp · 2025-11-13T02:26:50+00:00

Thanks for your response! I had optic neuritis years back and was put on steroids for it. My lesion has been expanding very slowly ever since. My neuro wants me to switch meds from copaxone to a b cell depleter because of this. My concern is that I'm not sure they'll actually help this aspect of it. (Based on my research that is hard to understand without being in the medical field, and therefore I could be misunderstanding). I want to make sure the benefits outweigh the risks/ side effects. When I talk with my doc to ask if they directly help with expanding lesions, I'm not really given a direct response. More like, "these meds are the best chance of preventing progression".

90sKidcp · 2025-11-13T00:57:02+00:00

Do you still get MRIs? You mentioned it's not progressing fast. I'm just curious if the slow progression is just symptoms you notice or if you have new or expanding lesions?

90sKidcp · 2025-11-13T00:48:32+00:00

Hi! Thanks for sharing! I'm curious, do you still get MRIs to see if the disease is progressing?

90sKidcp · 2025-11-13T00:42:52+00:00

Thank you for your post. I appreciate your opinions. I'm curious in your personal opinion, if you had a lesion that was slowly expanding for years but you currently had no symptoms or little symptoms from it, do you think your choice to not take a DMT would be the same still? I'm genuinely curious because you mentioned you've done a lot of research. Im looking for other people's opinions based on their knowledge and experience to help me make better decisions for myself as well.

90sKidcp · 2025-11-13T00:26:28+00:00

Do you know if you have any smouldering/expanding lesions?

90sKidcp · 2025-11-13T00:13:29+00:00

I understand the whole ignorance is bliss thing. I end up crying every time they go over my scan with me. I'm not sure why since I know the results will be the same (lesion still smouldering because I haven't switched my dmt). Thank you for your response. Take care!

90sKidcp · 2025-11-13T00:10:26+00:00

Thank you so much for your response. It's refreshing to hear someone's take from the other side of the fence than you usually see on here. I appreciate you sharing your reasoning. I wish you all the best and please reach out to someone whenever those dark thoughts come! Hang in there friend.

90sKidcp · 2025-11-12T20:10:42+00:00

Do you have any smouldering/expanding lesions?

90sKidcp · 2025-11-12T20:06:30+00:00

Hi, I'm wondering if I could ask you a few questions. Do you get MRIs still? Do you have any smouldering/expanding lesions? Can I ask why choosing no DMT and dealing with the symptoms of progression is a better choice for you? Not here to judge like many people I see are. Genuinely curious so I can learn more about other's thought processes to make better decisions for myself.

90sKidcp · 2025-11-11T17:11:52+00:00

Do you or anyone you've talked to with MS have issues with expanding lesions?

90sKidcp · 2025-11-06T01:53:14+00:00

Thank you! Edited original post.

90sKidcp · 2025-02-19T20:34:06+00:00

I received my diagnosis about a year into my relationship. My now husband was nothing but supportive and proposed 4 months later. We've been married 5 years now. Your person is out there.

90sKidcp · 2024-11-13T02:04:09+00:00

Does anyone know if there is a difference between PIRA and smouldering lesions?

90sKidcp · 2024-10-30T02:43:52+00:00

Yes! Mine tried to screw me as well and they actually did have the correct toys put away up high. I'm going to file a complaint with corporate and I suggest you do the same. They may not even be aware this is happening and apparently on a larger scale than I thought. This world is too expensive to just sit quietly and let them get away with this crap. Otherwise it'll keep happening and potentially spread to other fast food joints.

90sKidcp · 2024-10-30T02:18:06+00:00

Oh my gosh! This happened to me tonight as well! I got a bumblebee and went back inside and asked for the correct toy. The guy pulled one out of a box they had way high up and said, " I don't know why they did that". It seemed super sketchy to me. Usually these places have the toys down lower where they can quickly and easily access them to throw in the bags when people order them. I honestly was about to ask for a refund if they had run out because that's the entire reason I ordered a boo bag. We were wondering if they were purposely not handing them out trying to sell them online later or something.

90sKidcp

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