Picking a treatment - Is it OK to do this?


I was diagnosed with MS a month ago, and have an appointment with the nurse in a month, and the consultant a month after that.

Does anyone know, am I likely to have any say in the drug regimens offered to me?

I have picked my preferred one, but I realise it may not actually work like that :slight_smile:

Does anyone have the time to tell me what sort of things are discussed at these appointments, how much say I’ll get in treatments, and anything else that may be useful to know? I would be extremely grateful, and willing to learn from any of you.

My preferred treatment is currently Tysabri. Is it available in Kent? Do you have to have tried a lower category DMD before this is available? How long does the monthly IV treatment take to administer? Is anyone on it? How awful were the side effects for you? It’s easy to gloss over the side effects when you just read them, but when actually confronted with them, it might make sobering but necessary reading.

Many thanks.


Hi Nev,

See Tysabri (natalizumab) | MS Trust

Others will tell you of their experiences as I’ve never taken a DMD; PPMS.

Good luck


Hi Nev

You may not be able to get Tysabri as it’s mostly classed as a 2nd line drug. This means that generally you need to have been on a first line drug and ‘failed’, i.e. relapsed whilst on it, or have been unable to take it because for eg of a side effect. You can also get it (assuming it’s available in your area), if your MS is active, i.e. you’ve had 2 relapses within a year and MRI shows you have new lesions.

It will also depend on what drug therapies are on offer in your area. Tecfidera is now likely to be available everywhere as are all the old injectable drugs (Betaferon, Avonex, Rebif and Copaxone) although often these are in slightly different forms, so Copaxone is now a three times a week drug and Avonex is now Plegridy, a once per 2 weeks subcutaneous rather than weekly intramuscular. Gilenya is another 2nd line drug. Interestingly, Lemtrada is often the first and only drug people have if their MS is highly active.

It’s an odd situation that people are told to go away and think about what drugs they want, but then find that their options are limited to what is available in their area plus their neurologists preference. Also sometimes a neurologist will describe a persons MS as highly active (which then qualifies them for more drugs) because of the lesions in their brain, which do not always manifest in the number of relapses or symptoms.

So, it’s good that you know what your preference is, and it’s possible that you can get it, but don’t become so firmly attached to that choice that you’re completely devastated to find you can’t have it.

There’s plenty of other issues related to which DMDs you could be offered. Your MS nurse will be able to tell you what drugs are available in your area and also what drugs the neurologist is likely to offer you.


Thank you George, for the link with a bit more detail than I’d previously found on Tysabri.

Sue, a massive help that, thank you.

A couple of things I’d read were indicating to me that it was a treatment not necessarily given out at first. If I remember accurately, I was told I have 15 lesions, and 2 are currently active. Also, at the moment I am currently still driving trains and diarrhea and nausea might not be too welcome on a non-stop service for over 2 hours! However, the aims of the health service may differ to mine, they will want to keep me alive to make their figures look good, whereas I want to live and earn an income! That’s why I feel it could be worth pushing politely for this, but I know nothing about the process so I’ll just have to wait and see.

I do remember the consultant asking me very pointedly whether I was feeling any effects from these active lesions and I said no, because I didn’t believe so. Not so sure now, but the power of suggestion can play tricks sometimes can’t it? I do feel some effects but nothing like some people talk about relapses being like.

I will just have to wait and see!

Thanks for advice,



Have a look on the https://shift.ms/ website. It’s used by frequently younger people than us lot (I know some are young, but nit all). Many of the people using the Shift chat room have managed to get Lemtrada, the criteria for which as a first line drug are similar to those of Tysabri. You may be able to find other people on there using Tysabri as first drug and/or pick up tips from the Lemtrada users.


Hi Sue,

Have joined up, will test the water.



Two penn’orth: if I were eligible for a stronger DMT, I’d seriously consider Lemtrada. Currently taking Tecfidera and haven’t had any noticeable side effects, except an occasional runny nose.

Well, I admit I went through the list of drugs and their side effects as though I was selecting options on my new car, rather than what the MS team would want to put me on, so perhaps I’d better play it by ear for a while? LOL!

A five day stay in hospital while they fill you up with Lemtrada sounds great though



A lot of people just go in each day and get to sleep in their own bed at night.

OK, didn’t know that might be an option, thanks!

All the best,