I was officially diagnosed a few weeks ago, and my neurologist gave me the names of 4 DMT’s and told me to research them before seeing my MS nurse.
My appointment is not for a couple of weeks and after reading up on MS and the DMT’s I’ve become quite scared and confused. I’m sure its just an initial thing and most people must go through this, but as I don’t see my nurse for a while, I thought I would post on here and hopefully get some feedback.
Did anyone else go through this emotional rollercoaster?
Is it up to me what drugs to take, or my MS Nurse?
Oh God girlie yes!! Hard to take it in. At least your team are proactive & want to start you on DMTs asap. Not all bad, mine served me well for 10 years. Take your time, digest your diagnosis & research your options, it’s up to you what you take, entirely. Look forward & keep positive, it’s your choice. xx
Yup the choice is entirely yours. This always struck me as odd. If you go to the gp and say you need an anti biotic they don’t ask you which one you’d like. I mean, we don’t know! You expect the medics to know and advice or suggest. However,it’s fairly simple once you get over the shock of everything. (If one ever does).
Diagnosed two years ago, I chose Plegridy. Like most, I didn’t like the idea of stabbing holes in myself so it seemed easy. An injection once a week. For me, big mistake. Suffered serious low mood/depression for 48 hours after injecting. I mean really serious. Didn’t want to get out of bed, get washed, get dressed. When I’d eventually resurrect, I would be in floods of uncontrollable tears. Just didn’t want to do it. Then, exactly two days later I’d be back to normal, wondering what that had been all about. I would dread the next injection then though. After six months I came off that and chose Tecfidera. A simple twice a day tablet. Any possible side effects are easy to manage and your bloods are checked every three months to check all is well.
I’m not on any now as it turns out my dagnosis is Primary Progressive and not RRMS. Nothing for that one as yet. Keep asking uestions on here from people who know. Good wishes.
Btw, I should add, that was just my reaction to Plegridy. Others take it without any probs.
You can choose from those suitable for you. It is entirely your decision.
This can be overwhelming, and lots of us just want someone to tell us which will be most effective for us, and at first I was quite annoyed that no one would do this for me; I felt like I was expected to suddenly learn everything about neurology if I was to stand a chance of making an informed decision.
I asked my nurse why it is done this way, and she explained that one of the most important things is compliance. If you start taking something, they really want you to take it properly, so it really has to be up to you because you know yourself best. There’s also no real way of knowing if one will work better for you than another. I pushed my neuro to tell me which he would suggest but then decided I didn’t agree and I went with something else.
So, think about the practicalities of your day to day life, your attitude to risk and side effects, injections vs tablets, how often you want to have to medicate (from tabs twice a day to one injection a fortnight) and so on. There’s lots of useful info here if you haven’t already seen it Guide to decision making | MS Trust
Thank you for your replies. I will think long and hard about the options, I am a little concerned as I have to fly to the USA to work in June, and will have to take that into consideration when starting the meds.
A further question I would like to ask, if you don’t mind:
I am currently having issues with my left leg. It started after seeing my neurologist and I thought as I have an appointment coming up wih the nurse, I would talk to her about it - not sure if I should contact him and let him know.
Because I have this sluggish dead leg feeling and pins and needles in my foot I am having difficulty driving a manual car. I have therefore decided to try and get an automatic, and someone said I may be able to get help with it, any ideas how I go about it?
Sorry to bombard with questions, I’m just not sure which way to turn.
This was my gripe when I was first diagnosed; lots of information, but no real guidance; and you were just told to go away and choose a DMD. The one they wanted to put me on in the first instance (Tysabri) had too much in the way of side effects and risks for me to be comfortable with it (the idea of PML scared me too much, and blood tests and hospital visits what seemed like every other day!), so I declined that one. I chose one which might possibly be a bit antiquated these days (Rebif) but has a proven safety record over twenty odd years… and while it’s still doing the job, I’m happy to keep using it.Not keen on needles, but the gadget that comes with Rebif - the Rebismart - does most of it for you - I haven’t had a relapse since I started on it in 2014 - and I don’t see any need to change at the moment. Lowest risk drug which does the job and stops relapses… fine in my book!
With reference going to America to work in June; I presume who you will be working for will pay for your DMD’s? They are expensive about £10,000 per year; good job President Trump was stopped getting rid of Obama Care.
See News & stories | MS Trust that may help you decide what DMD to have. I think though it will be a case of suck it and see; different ones suit different people.
Driving - have you informed the DVLA about your diagnosis? you need to. They will most likely ask for your licence back and send you a three year renewable one instead. Also tell your insurance company - they won’t increase your premiums but if you haven’t told them and need to claim they could refuse cover.
Flying - if you choose an injectable this will have to be declared before you travel as it is included in ‘liquid’ allowance.
re getting help with a car, the only help I’m aware of is a Mobility car. If you are awarded Enhanced Mobility PIP you get the option to exchange your monetary award for a car, but you don’t own the car, it’s leased. Awards are reviewed every couple of years so it may be taken back.
I’m no expert and others may advise you better than me.
Finally, I’d say the issues you have with your left leg are definately MS related so mention it to MS Nurse (you can ring her and ask her opinion).
I am thinking your suck it and see, might be the way forward.
Luckily I am only over in the US for the month, so if there are many side effects hopefully I will be back to see my MS nurse before things get too bad.
I will speak to the nurse about my leg when I see her. Its quite infuriating as I like to run, and its been like running with a breeze block attached to my ankle. Not stopped me though, although not going as far, and always in company incase I fall.
Trying to stay positive, although its soo much to take in. Im sure everyone has felt like this.
Yes, as all the others have said, it’s a big thing to get your head round, having an MS diagnosis. And then to choose a DMD from all available.
In terms of choosing which DMD to take, it’s going to depend on exactly what’s been offered to you and your personal choice. I’m surprised you’ve only been offered the choice of four drugs. And hoping that these four aren’t just Avonex (or Plegridy), Befaferon, Rebif and Copaxone. The reason I’m hoping it’s not just those is that they are the old style DMDs. They are all injectables and all have an expected reduction in relapse rate of 30-35%.
Many people have spent years on one of these drugs, with fairly minimal side effects and few relapses. But since there are now other first line drugs available, which are more effective and are oral therapies, I’d hope that you’d be given the option of Tecfidera at least (relapse reduction rate of about 50%).
The choice of drug ultimately is yours, but do look at the link posted by Teal, as it might help to have more info about the various drugs, and their potential side effects. And talk to your MS nurse, they will help to guide you.
If you do go for an injectable drug, you’ll need to get a letter before flying (probably from your MS nurse or GP) which states that you are carrying a drug which is a) delivered by injection and b) contains liquid. You should of course, always carry medicine, including injectable DMDs in your hand luggage. But a letter proving what you’re taking should satisfy the airline. If you are worried before flying, phone the airport / airline and check that you’ll be OK.
Without a doubt take your medication in your hand luggage. You don’t want to risk that getting lost! Also keep all/any meds in the original packaging that has your name on it. I travel frequently and just do as expected, all to hand in the required clear plastic bag. Never been a query or problems.
Something to look forward to, which is nice.