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Decisions, decisions... (I'm in a pickle!)

Hello fellow MSers, just wanted to crowdsource some advice if I may… I was diagnosed very quickly in Aug 2020 (as a hospital inpatient) and I started treatment in Nov (copaxone). I was offered cladribine from the off, but I discounted it because I was worried about having a compromised immune system (esp during Covid), and I’m hoping to have another child soon (copaxone only safe option for pregnancy). Anyway: I'm now totally rethinking everything - mainly because I’m worried I might had three sensory relapses since Aug. (Why it’s taken the penny a while to drop on this front is because I bunched all this activity in with the Aug relapse, because it was all very new and I had no idea what was going on. Not that I’m implying I know what’s going on now! :) ) I'm seeing my neurologist in March and I’m thinking I need to go to that meeting prepared (whether that’s with a request to change treatment, or at least a request to have an updated MRI). I’m on the F/B cladribine group and have had some useful advice on there re: that drug - just wondered if there were any other drugs people recommend I research? (I’m hearing a lot about Ocrevus but not sure I’d qualify for that at this stage). Oh, one last thing - my energy is a lot better now, and I know copaxone is thought to take six months to build up in system (most of the numbness occurred before I started on it). So the other thing is that: do I persevere with the copaxone and see where I am in a year’s time? I know I’m the only person who make any choice, but people’s thoughts appreciated - many thanks Xxx

Hello @tee_bee and welcome to Shift. You've been through a lot in a short period of time, and in with the usual fears, you're thinking about another baby. The problem is, when we are diagnosed, there's barely time to get used to to and we're having to make decisions about scary-sounding medicines on top of everything else. Your body is still getting used to this invader, and trying to recover from relapses. Most people would tell you that it usually takes a year to fully absorb a diagnosis and find a 'new normal'. So, it's clear that your health needs top priority at the moment; sleeping and eating as healthily as possible. Yes, Ocrevus is the great new hope, very new. But not everyone is suitable for every DMD, so your neuro will be the best advisor. And in your case, that would need to feature a baby-safe option. Lots of women on here have faced the same decision, so you might find the search box useful for researching pregnancy. The MS Society website has great information on all the DMDs available. Are you definitely planning to have another baby? If so, then that will have to inform your choice of meds. If not, then your options really increase. I take Tecfidera, which is easy tablets and has no impact on lifestyle or routines at all. It does sound like you have a positive attitude, which is your greatest ally! There is lots of support on here for you - we've all been where you are. Sending lots of love and wishes for your journey......x


Hi Vixen, Thanks so much for your lovely response. Yes I definitely found the treatment choice overwhelming (it was offered to me over a patchy video call, approx three weeks after I was discharged from hospital - I was like ‘err, do I have to decide right now?!’) I was offered tecfidera too (alongside cladribine /plegridy) - I was in a real dither, and it was the pregnancy thing that led me to copaxone (plus that at the time I felt it was ‘safer’ than the rest). But I’ve realised I was probably too quick to dismiss possibly more effective treatments. And maybe I need to rethink a second pregnancy, or at least not prioritise it to the detriment of my health (I don’t know - it’s all so confusing). I’m pleased to hear you’re getting on well with tecfidera anywho - have you had any tummy upsets on it? I’ll do a bit more research ahead of March. On the whole I’m feeling positive - just have occasional wobbles (which I’m sure everyone with MS relates to!) Xxx