This isn’t a complaint: I really do appreciate I am in a position to choose and know I am very lucky to have options. Just kind of need direction…
Neurologist said I can pick from any of the DMDs listed on the mstrust site - the list is massive!! I asked for any recommendations/suggestions but he said it is entirely my choice just maybe go for one thats more effective.
Ive used the tool on mstrust site and on the mssociety site too and it didn’t really narrow things down much at all - the list is still so long! How do you choose?! What was your deciding factor?
Does anyone have any tips, advice or things I should consider for narrowing this list down before I start flipping coins and rolling dice?!?!! I’ve been reading all the info and its so hard comparing them!
Background: Recently diagnosed. Never taken a DMD. Never had an infusion. Never had to self inject. Have a history of occasionally forgetting pill times. Am scared of needles but am able to push myself when I really have to.
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@busybroccoli That doesn’t sound particularly helpful from the Neurologist at all.
The way I see it, there are a couple of things to weigh up, both efficiency of the DMT and also how it fits in your lifestyle.
The MS trust I believe has them rated in efficiency, so for example things like Ocrevus, Kempsita and Tysybri are the highest, i.e less chance of a relapse in the future by someone like 70%. So your first thought is do I want to hit hard straight away.
2nd thought is, how will I manage the treatment schedules, so again using the same examples, Ocrevus subcutaneous injection or IV drip, you would need to have this 6 monthly at the hospital.
Tysybri would be monthly at the hospital by drip (possibly injection depending on hospital) so a big commitment and Kempsita at home injection once a month.
If you went for a middle efficiency drug i.e mavenclad, it would be pills at home and only a week first month, a week second month, then you repeat again 12 months later.
Personally I chose the Ocrevus subcutaneous injection 6 monthly at the hospital, as it was quicker than the drip and only twice yearly.
If you start to narrow it down, keep posting questions on here, as other MS users might have tried different ones. and you can get targeted advice.
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Hi BB.
choices are good - at least you can feel that you have a little control back 
On my diagnosis letter, my consultant recommended that I chose an effective anti CD20 therapy because, he says that I had an aggressive initial presentation and a following relapse already. Based on that and, I don’t like hanging around in hospitals and, I didn’t fancy more pills (I often struggle to remember mine aswell) - I chose Kesimpta. He seemed to approve of that choice. It looks easy enough to do (no real needles or syringes).
I suppose the choice is really yours to pick what fits with you best. From what I’ve read on here, it can be changed later if it really doesn’t agree with you.
It might be worth putting the kettle on and making a Pros and Cons list while you’re trying to decide 
You may be on it for a long time so, it’s good if you can be part of this initial process.
Good luck and, all the best mate x
Jon.
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Hi @busybroccoli from what I know the general advice these days is to go for the most effective ones ( not a problem when I was first diagnosed- there was a list of 3 DMTs in total and basically they all did the same thing - and they are now classed as lower efficacy !). As @jthatcher says , go through the list and pull out the more effective ones, write down any side effects, how often they are taken and how they are taken.
So far as I know most if not all those that suggest self injection use an injection pen. Certainly with the DMT I use (Avonex which is one of the early and lower efficacy ones) I don’t see the needle and simply put the injector against my thigh and press a button . Cons with Avonex - it’s one of the lower efficacy ones, I inject every week and it can leave me feeling a bit rubbish for a couple of days
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Well I think that’s a poor show from the neurologist. He or she has spent years being expensively trained to know about these things and have a professional opinion on how your MS is behaving and to guide you accordingly. It’s just not good enough to leave you to it when the range is so wide. It’s one thing if the choice is limited to a particular class of drugs - they usually are much of a muchness. But that is not the case here. Anyway, you’re not complaining so I should shut up too.
These are worth a look. I find the info better quality and easier to compare like for like than any other source. I’m trying to paste the link but if it doesn’t work then search on MS Selfie Info Cards and you’ll find them.
My policy all the way through 25+ years has been to take the most effective drug available to me. For me, this is overwhelmingly the most important aspect of treatment. I’ve been on natalizumab for many years. If you are being offered those kind of drugs - and evidently you are - that means your neurologist thinks your MS is up to no good and means business, and this suggests to me that going for the most effective thing available might be a good move for you too. But I really wish you had more guidance from the experts.
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Thank you all so much for all the insight. Its really useful to hear from personal experiences and makes things less daunting! I really appreciate it so much!!
I definitely want to hit it hard 
also being aware of the risks too.
I’m not really doing too much these days as its taking so long to recover from the symptoms after last relapse/s BUT once when/if I’m over them I would love to get back to living life so will need a hard think about schedules. I hadn’t been considering that before as I thankfully work from home and these symptoms have made me a bit of a hermit.
Maybe a silly question but does anyone know if more frequent dose options offer more consistent protection over time or does that not really make a difference?
I’ve had a look through those MS Selfie info cards and they are great!! Like a very serious top trumps which helps make the information really clear to compare. I feel they should really hand something like that out at appointments!
Lots of reading and thinking ahead of me now.
I am really really grateful for all of you spending the time to give me plenty of info to think about and sharing your experiences, it’s been really helpful!! Kettle will be doing overtime for a bit I think!!
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my guess is that the frequency of dose is all about making that particular drug work as well as it can. I doubt whether dose frequency itself has much to tell you when you’re trying to compare one drug with another.
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Like the nightmare game of top trumps that no one wants to play! Thank you for making me smile.
The good news for the day is that the most effective treatments really are very good indeed. It’s a world away from when I started 25 years ago. If there were a good time to have MS(!), this would be it.
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Hi, personally, I’d recommend Tecfidera. x2 tablets a day, 50% lower risk of relapse, side effects pretty minimal and a lympho count every 12 weeks.
I’ve been on Tec for nearly 8 years and have been relapse free in that time. Clear on MRIs with NEIDA too.
EDSS score is 0.
Good luck with whatever DMT you choose.
Retro.
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Thanks Retro, I appreciate the info & insight!