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look
3 weeks ago

Hi @karlsohare,
I believe (correct me if I’m wrong) that these types of drugs are supposed to reduce the number of relapses once you’re on them. I was on Copaxone for a few years and it kept me pretty well but that’s the thing you don’t actually know totally how it’s working but every time I’ve come off DMTs bang I’ve ended up relapsing (like right now as I came off my Extavia for a few weeks). I hope this helps a bit but time will tell when relapses are lessened or don’t happen so often or indeed at all.
⭐️Loo


arbee
3 weeks ago

I agree with @look rather than making us better they are supposed to slow down the rate at which we decline so it’s a bit difficult to judge how much of an effect they are having.

I’ve been on Tecfidera for 2 years now and I haven’t had a relapse in that time, if I would have had one without taking it or not is impossible to tell, I assume that it’s working but maybe it’s just a coincidence and I wouldn’t of had a relapse anyway. The only thing you can really judge is if it’s not working, if you’re taking a DMT but still declining/having relapses then it’s clearly not working for you but if you haven’t had any new symptoms/relapses then you can only assume it is working (although there’s no way to know for sure if that’s down to the DMT or not). If you’re feeling quite well then long may it continue 🙂


karlsohare
3 weeks ago

@arbee and @look I know it’s not a fix and it’s aim is to slow my ms down but so far so good is what I mean. I’m less numb and balance has improved so fingers crossed it’s working x


itsmewithms
3 weeks ago

Copaxone was the first DMT I was given when Dx in 2005. The neuro (at U of M in MN USA) said he preferred it for me versus the only other alternative available at the time as he thought it was overall more effective although it had a longer “load time”…so it would take a bit longer than the alternative to be effective but once it was it would be better tolerated. This made sense to me as mine didn’t start out particularly aggressive and never has been. He also liked it as it didn’t have as many side effects for people so wasn’t as noticeable while you were taking it. He thought it would take months to be a full effectiveness but thought I had that time. This article also notes a longer “load time” or efficacy. While you feel good you can do more which is the best thing you can do 😉
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5299631/

As they note above it is supposed to reduce flares so you feel good as much as possible. If your MS acts up is a sign that it isn’t working and you should check in with your Neuro. If I had symptoms that lasted more than 24 hours I would call them and they would do an MRI to see if I had an active lesion…if I did I would be put on Prednisone (crazy high doses infused) for 5 days and then tailed off for another 5. Over 11 years I had several flares visible in MRIs and also must have had some without noticeable symptoms as there were lesions mounting I didn’t notice.

We have something called Neurological Reserve where your brain rewires around a lesion like we reroute around road construction when driving. As long as you are a nimble driver and there aren’t too many roads closed this can work well. The trick is to keep as many roads open as possible and remain a nimble driver 😉
https://www.healthcentral.com/article/neurological-reserve-how-the-brain-can-adapt-to-ms-damage

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