@jellysheep 

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jellysheep

Some queries about Aubagio, Mavenclad, and Tysabri as first DMT.

Hi, everyone. I've not posted here before, but I've been really enjoying the Shift.ms Instagram account and weekend takeovers a lot as it's brought me comfort after a recent-ish diagnosis of RRMS. If any of the takeover people are on here, thanks so much for having the courage to help others in understanding more about MS. :) But I feel like I need to reach out to this helpful community now and seek a more direct form of help, as I've spent the last few months not having decided on a DMT, and my list of questions are ever growing! :-/ The good thing is that I *have* managed to narrow my options down to three DMTs that appeal to me. AUBAGIO folk: I don't seem to see many of you around... anywhere! I've struggled to find any experiences from people who have RRMS and are taking this as a first DMT. Is there a reason for this? Less popular DMT? If so, why do you think this is? Perhaps overshadowed by people choosing the harder hitting treatments from the outset? Maybe the latter thing is to do with the research that came out and said it's best to go on a more effective DMT in the early days, soon after diagnosis. Please let me know about your experiences, side effects, and how you have been getting on with this interestingly shaped little tablet. :) TYSABRI folk: Not going to lie that this was verging on being my first choice, until it sunk it that it would be 4-6 weekly infusions. I'm worried that I'd feel more like my life was running to an organised schedule and diarised as opposed to living life not having to worry about regular dates. I'm not an incredibly social person, so I wouldn't need to worry about clearing my schedule as such. It's just the feeling I would have of being constantly committed to something, if that makes sense. (And fellow females will empathise with the annoyance of 'that time of the month' seemingly coming round too quickly as it is!) Also, being told that "you are likely to experience a relapse when coming off this treatment" is a bit scary, as well as the PML risk. (My bloods came back as JC negative, so I would be eligible for this DMT, if chosen.) For some reason, and I don't know if it's the MS doing this (or a side effect from working from home and lockdowns), but I'm starting to feel more and more anxious about driving and travel in general, so having to attend hospital regularly for the foreseeable future might cause me some anxiety about transport when nearing the date of an infusion. The only change I see with this treatment is the switch to injections when that's more commonly rolled out, and someone who has had the Tysabri injection said they were told by their nurse that this may become a self-injectable at some point in the not too distant future. But I do feel that this more convenient home method of taking Tysabri is too far into the future for me to make a decision based on this even happening. Please tell me your experiences of Tysabri, positive or negative. I'm interested especially in how scheduled your life feels, especially to anyone who dislikes routine and regularity. MAVENCLAD folk: I would love to hear from as many of you as possible as this is looking to be my strongest choice at the moment, purely because it would make me feel more "free". I've read a really helpful thread on here from someone who was documenting how they felt after each day went by after taking a tablet, and the side effects didn't seem as bad for them as they have been built up to be. This took the edge off this option feeling like it'll be a massive and sickly ordeal, and I understand it still is for some, if some of the replies on that thread were anything to go by. But the fact there are people who take this who aren't totally knocked off their feet or throwing up all the time or loosing hair gives me a more positive outlook about Mavenclad. My biggest concern that's holding me back... BIG concern, for sure... is the warning that it may cause cancer. It was one of the first things I was told about at the hospital, and I also read that it's there as a box warning in the USA. Maybe also here in the UK, I'm not sure. Cancer seems to be running in my family, so this is obviously a worry. I do have some questions about Mavenclad that I would like more insight on, though. 1) I've read that circumin (turmeric) has an effect on Mavenclad. I tend to use this anti-inflammatory spice on certain foods, but I will stop using it during treatment if it's detrimental. Just wondering whether anyone read about this, too. 2) I've heard and read in a few places now that Mavenclad is recommended as a treatment for those who have tried other treatments and failed, yet I've been offered this as a first DMT. Has anyone been taking this as a first DMT? 3) Is the risk warning for causing cancer supposedly for the time the tablets are being taken and the immune system is low? Or is this a continual risk even after your cell count is back up to normal levels? 4) How many years have you personally experienced or known Mavenclad to be effective for? 5) My final concern about this form of treatment is that I have always had trouble managing stress, so I'm worried this could undo any good that Mavenclad could be doing for me in the long term, like reducing its period of efficacy. I'm getting better at stress management, though, which coincides with me saying "No" to more things at work and requesting less intense work to help with cognitive issues and fatigue. Thanks for reading this far! Looking forward to your replies. :)
@lisamarieromy

I’ve had my first Tysabri infusion 2 weeks ago. I have decided to make this my monthly “MS day”. I don’t mind dedicating one day per month if the medication works well for me. after the infusion I had no side effects except for being really tired. Not “I’ll go to bed early” tired but “I have to sleep right now” tired. So I slept for hours, and afterwards I felt fine. The next day I felt as nothing happened. But this is different for everyone, and it may be different with my further infusions. I was/am JC-negative as well. I am also worried about having to stop and then relapsing big time. Hope you feel safe and confident to make a decision. All the best to you!

@jellysheep

Thank you. Looking at it like taking one day out isn’t so bad, I suppose. Glad your first infusion went well. Was choosing a DMT a hard decision for you as well, initially?