klouise 02/06/15
Last reply 2 years ago
Which DMD?

Hi

I’m new to this, but would really appreciate people’s advice on tecfidera/deciding on a DMD. I’ve been struggling with this decision for a few weeks now. I had one attack last October, which was disabling, but am now pretty much completely recovered, with no hangover symptoms. I have been trying to decide between the UK first-line drugs i.e. tecfidera vs injectables. To sum it up, my head tells me that tecfidera is the most effective and I should opt for that, and my neuro has subtly hinted (which is about as strong as they seem willing) that it is the most sensible choice, but I am very anxious about the PML link and evolving risk profile: the unknowns. I feel fine at the moment, and the part of me that’s scared just wants to take copaxone, even though I know it is less effective. Rightly or wrongly, I’m finding it very difficult to adjust myself psychologically to actually wanting to take tecfidera. Anyone else struggling with this? Any advice?

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brokendancer
3 years ago

I went through all the for/against when I was diagnosed – then told PPMS so choice of what injection was redundant.
Two years on and all change, proven RRMS after all and aiming for Tecfidera too, it’s such a personal choice. I really don’t care if I flush like a beetroot if I feel a bit better in general, don’t have to go to the hospital regularly or inject myself (I’m a wuss!)
I think you might need to list what you’ve been offered and write plus/minus points to help you pick.
Good luck whatever you decide 🙂
Sonia x


stumbler
3 years ago

@klouise , as Sonia suggested above, a lot depends on how these DMDs fit into your lifestyle.

Try not to get to concerned about risks. Every DMD comes with risks, but we get monitored regularly to keep those risks acceptably low. If the monitoring were to show an increased risk, then your DMD choice would get reviewed.

Good luck.


klouise
3 years ago

Thanks both. I think I am getting bogged down with these risks (perhaps because they’re so much more concrete and measurable than the prognosis itself). You’re right Stumbler, I should be a bit more trusting of the medical team. It’s a hard decision though, when so much seems to be at stake. Very hard to be rational about it. Sonia, I hope the tecfidera works for you.


stumbler
3 years ago

@klouise , crossing a road is a risk, but we do our monitoring to ensure it’s as safe as it can be. Taking drugs isn’t that much difference.

We just need our medical team to tell us if there’s a great big truck coming! 😉


cameron
3 years ago

Also, your decision about which drug will likely have opened up the big can of worms – i.e. coming to terms with having MS. As you say, you’re new to all this. Without having to make a decision on drugs, you could have had more time to make the adjustment – but no, here it is, in your face. Some reflective time would have been good. So- if you accept that you’re not yet in the right frame of mind to be perfectly prepared for decision-making, going with the neuro’s recommendation is maybe the least risky option. Nothing is final – as people have commented, you’ll be closely monitored and there’ll be the option to change meds if they’re not working as they should. xx


tracyd
3 years ago

@klouise

Your choice of DMD is a personal one, you need to list up the pro’s and con’s for each in relation to your life, family and lifestyle.

The decision will be different for everyone, the reasons behind it will be different for everyone.

Depending upon how your relapses affect you and their severity that choice may change. When you’re considering the side effects of each bear in mind that tea, coffee and wine also have side effects, everything in life is a measure of risk. Don’t forget to include on your pro’s and con’s the impact of your MS now and potentially in the future.

Good luck with your decision and treatment – whichever it will be xxx


ruggermad
3 years ago

I’m on Tecfidera, it is my first ever DMD and I have been on it for four months now. I had two bouts of flushing which wasn’t really anything and some very mild tummy issues when I first started taking the tablet.
For me its been a doddle, the hardest thing is remembering to take the tablet.

Good luck.


ruggermad
3 years ago

Just to add, I am JCV positive and have had worries about the PML link. My MS nurse monitors my bloods every three months and she will tell me if I am heading into PML territory I am sure.


upstatefan
3 years ago

I’ve only been on one DMD so far, Copaxone. I don’t like the injections, but i’ve tolerated them fine. It’s more of a nuisance. I haven’t had any major relapses since i started taking it 3 years ago….so fingers crossed it seems to work. I’m personally pretty excited to see it go generic, which would be nice to reduce to costs.

As for Tecfidera, I wouldn’t mind switching to it if given an opportunity. But right now Copaxone is working for me so I’m hesitant to rock the boat. Stopping the injections sure would be nice though. Good luck whatever you choose!


klouise
3 years ago

Thank you all for your good advice! It’s really helping to hear from others who have experienced this. And Cameron, you really hit the nail on the head when you say that making the decision has forced me to confront MS. I was pootling away not really thinking about it before, quite happy in denial. Thanks Ruggermad and UpstateFan for sharing your DMD experiences, it’s good to hear they’re going well for you.


demonrockhopper
3 years ago

Hiya,

I have been on Copaxone for 4 years. It’s keeping me very well!
Initially the injections were a drag but I’ve been very lucky. No site reactions and only had breathing issues 4 times. Probably due to rushing it after exercise.
I have been asked if i’d like to change but i’m staying with what works for me.

Best wishes

Ian


zialoker
2 years ago

I don’t know if this will help you at all – I was on copaxone for 8 years and did very well on this I had no problem injecting myself however it was a hassle with international travel I have been pulled aside in customs (interestingly never in the UK) and given the third degree about why I’m carrying needles despite taking medical letters. BUT I started to get the dishing where the injections start removing your subcutaneous fat and you end up with these dips I have now moved to tecfidera it is more to remember as its 2 pills a day and you MUST take with food it may be trial and error in terms of what you eat I was recommended babybel for breakfast (it’s the fat content) and I don’t think it liked orange juice but once you have that sorted and what works for you your stomach should settle. I’ve been on tec now for 8/9 months


klouise
2 years ago

Thanks Zialoker. I’m glad tecfidera seems to be going well for you. I’ve been on it for around a couple of months now. The side-effects have definitely subsided, flushing having been the most obvious. Still have my anxieties, but getting on with things regardless, and trusting my MS team.

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