DMT or Not. If so, which one? 🤷‍♀️
I’m at the point where I’m being offered DMTs. When I ask the nurse “what would happen if I don’t take them”. She’s says no one can answer that because everyone is different. I’m thinking there surely must be some data, which shows the risk of decline without them? Or else how would they know that taking them is a good thing? Anybody know where I can find research/info? I do now take pain killers regularly but the old me would not have. My ideal word does not include drugs… But I don’t want to be naive and hurt myself long term. Symptoms are manageable in the here and now but any significant decline would take me over that point. So if I do go on them, which one? I’ve been offered Tecfidera, Ponvory, Kesimpta, Ocrevus and a two hour appointment to talk it through with the nurses. Anyone here opted for no drugs? Anyone here got experience with any of these drugs I mentioned??
Hi, i was only dianosed just over a year ago, i am fortunate that so far my ms doesnt stop me from doing anything but i chose to go on a dmt in the hope to protect the future me, i have now been on kesimpta for 8 months and so far its going well, i am still able to work as a nurse and only have minor side effects. Dr Aaron Brostor an ms dr from overseas did a video comparing dmts to the use of seat belts in a car, we put a seat belt on just in case a crash happens to try and prevent or limit damage to ourselves from the crash, we do this everytime we get in a car but most of the time a crash doesnt happen but the belt is there just in case. I thought this was a good way of describing the use of a dmt. I dont know any specific data surrounding the use of them but i have seen some of the studies with kesimpta that compared the use of kesimpta against a lower level dmt but not against no dmt, i think alot of data might be the effectiveness between different dmts rather than none but i could be wrong.
@SmileyRiley I'm on Tecfidera and have been since 2019. Every MRI since has been stable with no further lesions or growth of pre-existing ones. The downsides are: having to eat something substantial before taking them or you may suffer diahorrea. The extremely small risk of brain infection thingy. However they watch you extremely closely and you have regular Bloods taken, every 3 months. If you fall out of, or even head towards the acceptable parameters of safety (to ensure you're not at risk of brain thingy) then they react very swiftly and take you off it. It's kept me stable for years and once I'd worked out a routine for food to have with the capsule, then there hasn't been any nasty side effects. One of the common side effects is called 'flushing' where your face or other part, goes red for about 20mins or so. It feels a bit like sunburn and looks like it. I get it occasionally but it quickly passes.