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why do we get to choose MS medicine?

Hi all, I’ve been lurking round this forum for a while, while I was in limbo but here I am now coming out. I got diagnosed yesterday with MS. I was sort of expecting it: numb fingertips, dizziness and Lhermitte’s sign, and two MRIs showing brain and spinal lesions, and found out today at my neuro appointment that my LP was positive. So, yes, sort of expecting it but it’s still a massive shock and I just don’t think it’s even sinking in yet.

I was lucky in a sense that between first relapse and diagnosis was only 6 months so not too long waiting around worrying. Well, I did manage to worry a fair bit in those months! But I went into the neuro appointment yesterday hoping against all hope that there would be something simple from all those blood tests that they did that would have a simple explanation and quick fix. But it was not to be.

So, I have a question, forgive me if it’s a silly one, for those around here who read this and who have experience of these things: why is it with MS that the patient gets to choose which medicine they take? In all other illnesses (I think) the doctor chooses the medicine that the patient should take. So, why is MS medicine different?

I’m asking because I see my neurologist for another meeting next week where we will have more time to talk about the diagnosis and treatment and I will get medicine. So I want to be prepared. One thing he didn’t say though was what type of MS I have, and of course I forgot to ask. But I am assuming if he is going to put me on a DMD then I must have RRMS? Would that be right?

Anyway sorry for the long ramble! And thanks for reading, if you got this far!

Anjo

Anjo .

Good morning and welcome . I would think you will have been diagnosed with rrms .I was diagnosed 3 weeks ago and im between rrms and spms hes not sure which but will let me know asap .

I was offered a choice of 4 but my first choices out of the 4 are Lemtrada , and Tecfidera . The neuro doc alwys seems to have a favourite and will say "i think this will be the best one for you to take " but remember its you taking it not him and thats what the ms nurses are for , you will sit down in clinic and thrash out the pros and cons of each ,they all have side effects .

Im not sure if its down to postcode or a neuro pushing a certain drug out but in the end its down to you which one , and remember if you dont want to take a DMD you dont have too .

Hope that is of some help .

Best Wishes Iain .

Hello Anjo

I think that however prepared you are to be told you have MS, it still hits you like a brick in the face. It takes some time to come to terms with it, emotionally. And in the meantime you don’t really know how to feel about it. This can then lead you to be irritated by some aspects of the diagnosis which are in a way, safe to be annoyed with. Such as the choice of DMDs.

We are given the choice of DMDs in order that we accept the risks alongside the benefits of each DMD. The benefits of each drug is measured in the average relapse reduction rate. The risks are the side effects which each drug has the potential for. So the safest drugs have the lowest relapse reduction rate, but either the least number of side effects, or the potential side effects are likely to be easier to get over.

If you have a look at the https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid you can see the wide variety of drugs which are potentially available, and their possible side effects. It’s important that you know what risks each drug has the potential for.

You are not likely to have a completely free choice of drugs. Some of this is due to what prescribing centres have been set up in your local hospital. You are also restricted to the drugs for which you qualify, if you have ‘active’ or ‘highly active’ MS, you’ll qualify for different drugs to those available if your MS is less active. Then there’s what the neurologist prefers as well as your own personal choice.

So you’re pretty much guaranteed to have the option of Tecfidera, Plegridy, Copaxone, maybe Aubagio and maybe the older beta interferons like Rebif and Betaferon. You might have the option of Lemtrada, but this is a much riskier proposition and you need to have your MS classed as very active for this. Tecfidera is the first line drug with the best relapse reduction rate (about 50%) and it’s also deemed to be most successful at reducing relapses when it’s the first DMD you’ve tried. It has potential side effects, but pretty much nothing that is difficult to get over if you stop the drug. The injectables, Plegridy, Copaxone, Rebif and Betaferon are all about a 30 to 35% reduction. Aubagio is a tablet, but in my opinion is the worst of all worlds, only a 30% reduction rate with more potential side effects than the injectables.

Tysabri is a second line drug, so you’re not likely to be offered it as a first DMD. But it’s a great drug, monthly infusion and with side effects that are easy to get over if you nee to stop the drug. Unless you have antibodies in your system for JC virus, but even then your risk factor is quite well understood now. So as a second line drug, it’s great.

Lemtrada has the best relapse reduction, but it’s a really heavy duty drug with some quite serious potential side effects. If I were in the early stages of relapsing remitting MS and were otherwise fit and healthy; given the option, I’d go for it. But later on in RRMS, with more serious disability to begin with, I’d be a lot more cautious. And the side effects need really careful consideration.

It’s a lot to think about. But talking the options through with your MS nurse (assuming you have one, if not, contact your neurologists secretary and ask for the contact details) is a good idea.

And of course, ask questions on here. There are people who’ve taken all the different options. Some have experience of more than one drug. Everyone who’s looked into the various DMDs maybe has their favourite.

Sue

Hi there thanks for your replies Iain and Sue. There is so much to think about. I’ve been looking at the drugs available trying to imagine actually taking any of them. I already take quite a lot of medicines for another separate condition so it will be a matter of finding which MS medicine works with the ones I already take. So I might not have much choice, according to the neuro.

But I want to go in to the neuro meeting next week forewarned, even though he said not to read the Internet but I am only human and I can’t help but try to find out as much as I can. I think he said not to read the internet because he didn’t want me getting scared but personally I would rather know the worst and face it squarely.

so thanks again for your help, I really appreciate it

Anjo

The early DMDs were all much of a muchness in terms of how well they worked and how well people got on with them. Where more than one was available, it became routine for the patient to choose on the basis of what frequency/method was likely to suit his/her lifestyle and inclinations best, and this made perfect sense.

Now that there is a broader range of DMDs on the shelf, things are a bit different; it isn’t like being asked to choose between the chicken and the fish any more. Drugs have different efficacy profiles and different risk profiles too (as a rule of thumb, the better it works and the more powerful it is, the more potentially troubling/hazardous the side effects).

That is why it is, in my view, essential that the neurologist recommends the one (or ones) she/he thinks will get the job done for you with minimum risk. It drives me potty when I hear of neurologists who offer a range of choices like a Chinese menu, with little or no guidance: in my opinion that is just not remotely good enough. They are the experts and we aren’t. It is their job to guide our deicsions. If they don’t do that, what exactly are they there for?

Good luck with your decision. Make sure you get your neuro’s strong recommendation, even if you have to swing him/her by the ears to get it.

Alison

Hi All! thanks Alison for your reply. I totally agree with you that the neuro is the one with the specialised knowledge so surely s/he should be the one to decide or at least make a recommendation. Given I have absolutely no idea - or rather very little idea just based on reading websites - whereas the neuro has trained and worked for years with these things and got all that experience.

So my plan is, read the info available on this website, then put the whole issue in my neuro’s lap. Given I don’t even have a preference for infusion, injection, tablets, whatever. I think in my case it might be more up to the neuro too as I already take a fair amount of medicine for a separate problem so he will have to find something that fits all that too .

Anjo

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My neuro literally did used to write down a list of all the various DMDs then for each one that I couldn’t take, he’d draw a line through. Until eventually every treatment had a line through it. And then he decided that I was progressive anyway so it probably wasn’t such a big deal that I couldn’t take any.

And if you’re already on a cocktail of other drugs, then you do have a point that your neuro may have to make the decision based on what will go with what you are already taking.

I think these days it is more of a conversation between equals rather than a ‘here’s a catalogue, pick one’ (which is what they used to do with the old beta interferons, I was given a pile of videos and told to watch them and choose one) or the more traditionalist way where the professional makes a choice for you with no discussion.

You do still need to be aware of the benefits and risks of the drugs you take, and that is the reason why you play a part in the selection of DMD.

Sue

I wondered this myself… so I’m supposed to be my own neurologist now? HTF am I supposed to make a reasoned choice, when I’ve just been dumped with the news and all the literature… can’t possibly decide! In the end, I spent a sleepless night or two before deciding that the one drug that they’d said they were going to put me on wasn’t actually what I wanted - it scared the xxxx out of me! - and although I wasn’t that keen on needles, I’d feel happier with the old style injectable interferon - so I told the neuro I’d be happier on that. Rebif is considered antiquated now, but appears to be doing the job… and while it’s doing the job, I’ll carry on and let it! Lowest risk drug that controls relapses and isn’t likely to kill me off…

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So in fact, you’ve just proven the reason why we take part in selecting the DMD that is right for us. It’s the one with which we are happiest in terms of risk versus benefits. This is not the same as being our own neurologist, it’s about sharing the choice. It’s a vast improvement on years gone by when we’d be told this is what you will take regardless of risk factor. Sue

when i was diagnosed in 2008 the choices were rebif or copaxone.

my ms nurse was excellent.

i’d heard of flu-like symptoms with rebif and i hate flu so i chose copaxone.

my nurse was surprised because it is a daily injection but let me go on it.

the daily bit didn’t bother me at all.

however after feeling like a brave warrior for 4 years i started to miss some of the injection sites because they were painful.

then i ended up with bad lipotrophy on my arm so my nurse offered me one of the new tablets.

i chose tecfidera which also carries a risk of PML but i have my bloods monitored closely, every 3 months at the ms clinic.

both the DMTs i have had were easy and the only reason copaxone gave me lipotrophy is that i didn’t rotate the injection sites.

good luck and if you choose an injectible, make sure you rotate the injection sites.

carole x

Quite right, Sue. I am all for a person with MS being is an informed customer - I’ve always tried to be one myself. It’s a collaborative effort between medical advisors and patient - the therapeutic alliance, and all that. Apart from anything else, a medication that you have chosen with confidence and as a free agent is one with the best chance of helping you, not least because it is the one you are most likely to take as per schedule. DMDs, like contraceptive pills, are most likely to fail if the user doesn’t always quite get around to taking them out of the packet.

So I am not suggesting at all that we should submit tamely and uncritically to whatever is proposed by our medical advisors; I am sorry if I left you with that impression. But I do think that the experts have a responsibility to us to make some pretty clear and specific suggestions about what they think is best for us, and explain why. We can only be truly informed customers if we have the right expert guidance on which to base our deicsions, and we are none of us consultant neurologists.

Alison

Yeah, I understand that; I didn’t know very much about it at the time, though, and plumped for Rebif cos the other ones scared me too much! I guess since diagnosis we’ve all learned a bit… glad I turned down Tysabri, and happy that some new things are coming along, which may be helpful in the future. And I m not forgetting that the person who has the final decision about what they’ll take is the patient - Neuros and nurses can recommend all they want, but essentially it’s up to me what I put in my body! Quite happy to go along with suggestions made by trusted people more knowledgeable than me… but it’s a delicate juggling act between risks and benefits of each individual drug. Hope I’ve made the right decisions, but that’ll be something we can never know for sure, I guess…