Forum

RRMS and DMD's

I got DX last year and been asked if I want to go in to DMD’s. I haven’t had many relapses so I was surprised when I was offered it. I’m finding the descison hard to make, at the moment I’m plodding along day by day. Still finding it hard to accept that all this is real

Part of me thinks I should go on them coz I don’t know what’s around the corner but if I do it makes all this too real (if that makes sense)

Now I’m considering the new tablet rather than the injections, just wondering what peoples thoughts are & what your experiences are?

Thank you

Hi, I was only recently diagnosed amd told to go on dmds ASAP. So I decided ok it will be medicine juice to make me better. So I looked into what was on offer, injections so that was a no straight away. I then talked myself into it and realised it was no big deal so agreed that I would with myself. Anyway the day came and it completely knocked me sideways to the point I have had a huge breakdown and decided meds wasn’t for me. I liked the thought of the tablets but the side effects have put me of and now I have gone back to the idea of injecting. Ok I have chosen copaxone as it’s got least side effects no blood tests etc just a daily injection. I have sent myself into a right spin about this but I need to focus on the positive. Daily injections and bye bye ms… so that’s me really in a spin but picked up the courage after weeks of tears and panic attacks. I am still petrified though. What are your thoughts? :slight_smile:

Hi, I’m newly diagnosed and will be seeing the MS specialist neurologist in July. I’m hoping I’ll be offered the new pill to be honest as I’ve had 2 significant episodes this year and from what I have read DMDs do slow progression. I want to take all the help I can get really as I have 2 young children who need me up and about for as long as I can be.

Sorry I can’t help with your decision over whether to have the tablet or the injections but from what I have read they both reduce relapses by 30% and can cause some reactions but I have to admit I’d much prefer to swallow a pill than inject myself. I am also working on modifying by life (Tai Chi) and diet (not quite Swank but close) as well as take whatever drugs I’m offered. Oh and of course my blessed Vit D!

Good luck

MJx

Forgot to say, the reason I don’t think I want the pill is because it can cause liver problems, you need a blood test every 2 weeks for the first 3 months and you can have hair loss and diareaha and sickness. Although weight loss sounds good lol… but i am still thinking about it if i can’t bring myself to take an injection.

Hi I’ve been on rebif for the last 14 months and neuro offered me the new pill at last appt in March but he did say if I’m happy on rebif then he thought I should stay on it but Sod’s law I’m in the middle of a mild relapse at the moment but still staying where I am regarding meds…would rather have blood checked every 3 months than every two weeks… If you do choose rebif you will get over side effects quickly and it seemed the most effective drug in slowing this illness down… Whatever you choose to do I hope it is good for you take care Baz

I’m in a similar situation to mini mouse. I think I am going to try the tablet as they are available on the NHS now to patients that request them. The blood test every two weeks, that is a bit much for the tablet and in that respect an injectable DMT seems a tiny bit better as an option.

Being a newbie you have a choice not take anything and get worse or take a dmd and not get worse.

Yes you may find taking a DMD does not agree with your body then you just pick a different one.
The game is finding one that your body gets on with and slows or nips MS in the bud.

I would say forget any worrying of side effects as your be more worried if you end up in a wheelchair. You would not get liver damage maybe raised liver enzymes then they would stop your DMD and move you on a different one. (thats the point of bloodtests)

As far as Gilenya (tablet) you only have a blood test once before you take it and then another a month later for 3 months. After 3 months they give you 3 months supply and leave you alone. There is no every two weeks.

Very few people get diarrhea or have liver problems and most DMD’s (interferons could effect liver) which is also rare.

You don’t take anything and get worse and its too late the damage is done!
There is no cure and their is no real repairing so you do everything you can to reduce the risk of damage!

I got my dx of RRMS in December and wasn’t offered anything except the 5x different injections by the neurologist. I went onto Rebif at the end of January and my symptoms gradually got worse (maybe not the result of Rebif but they had nearly disappeared by the time I got my dx) - now they are almost constant and I’m hoping that at my next neurologist appointment in June he will be able to help me. My symptoms are - I have do’s as I call them, and I get a pain (which the GP and MS Nurse has informed me is nerve pain) which is like when you jump into a pool without holding your nose and sometimes it feels like I have a pain behind my eye. It is always on the left side of my face/head. My right hand takes on a mind of it’s own and my right leg goes weak. Sometimes my speech is affected. This can happen for hours - each do only lasting a couple of seconds but coming every 12 - 15 seconds. At the moment it is almost constant. I have to stop stirring tea, buttering toast, cooking, writing, carrying things etc, and it’s really getting me down. I have not got anyone who will talk to me about it and tell me why it’s happening. My first neurologist said it’s not a relapse, it’s just a continuation of what I had and it’s not the Rebif. So what is it then?? (This was the neurologist that told me I had MS in a completely unprofessional ‘By the Way’ manner while he was looking at something on his desk) Let’s hope this new neurologist takes more of an interest and can tell me after months of this happening why it is happening, if it is the Rebif or other, and get me sorted once and for all. I have stopped my Amantadine to see if it is causing my intoxicated feeling and actions and the Pregabalin isn’t doing anything.So far my medication for MS sucks and hasn’t helped one bit and what was my neurologist doesn’t seem to care. Does anyone else have this problem?

Sorry - I got carried away and ended up ranting I hope you get sorted with the medication Minnie_Mouse. The injections aren’t that bad and you get used to them quickly but only you can make the decision of what you can cope with and what will help you. Let us know what you decide and how it goes.

Hi!

Hobs is absolutely right-100%.

My MRI scan at diagnosis (June 2013) looked very grim. For this reason, I was recommended to go with Alemtuzumab (aka Lemtrada). Lemtrada is the ‘top end’ treatment with its own pot of risks.

Did I have a choice? Yes

Do I want to end up in the worst place imaginable- Hell, a vegetable etc, etc?

Absolutely No!!!

Still not really sure what to do. My ms does seem mild at the moment, but there is that worry what happens if 2moro I have a bad relapse.

My first relapse, I was quite poorly and the second (& I think third) have been mild. With a handful of symptoms, guess I’ve been reasonably lucky so far, but then what happens if I’m not so lucky next time (if there us a next time) I don’t want to wake up one morning and think why didn’t I have the DMD’s

The tablet I’ve been told about is called Teriflunomide (Aubagio) I was told, by my ms nurse, blood tests every two weeks for 6months. This drug has come out this year, so still very new.

WWouldn’t it be easier if the doctor told me, I am to go on to meds.

My (rather aggressive) MS was well-controlled by Avonex for about 7 years. Then my MS got the upper hand, and I had a bad couple of years with relapses that did a fair bit of permanent damage. It all settled down again when I started on Tysabri, but I do sometimes wonder what would have happened if I had made a fuss and got started on the stronger drug a year or two sooner than I did. If I had managed to dodge one or two of those relapses, I would probably be walking a heck of a lot better now than I am. There’s no point regretting the delay now, but I can’t help it! My advice to you? Try not to let things drift when you know in your heart that you ought to be taking determined action to protect yourself.

Alison

Hey MM mild is good hopefully your take a DMD to keep it that way.

Ah gotchya no idea on Aubagio, I know from Gilenya Facebook group few had it and complained about side effects and switched to Gilenya. But then againpeople complained about G and moved to Aubagio it just trial and error and move onto the next.

If you did want to go needle for what its worth rebif don’t hurt and no problems with me on injection sites, copaxone was a pain in the but with that lumps for days on end and they did sting, Oh Rebif can make your limbs ache the next day for a few months.

Still having a blood test every 2 weeks is not that bad find which arm is best for sucking some blood out and stick with that arm.

With me it’s the right and it never hurts, I did read while back with Aubagio it does make you go red faced for a few weeks you might wanna read up on it at a few places.

If you want to ask about Gilenya have a butchers here

I was diagnosed a couple years ago with RRMS and was offered the injections straight away which was so much to take in after only a few mild attacks. A week after my diagnosis I found out I was pregnant so that put my meds on hold (and gave me a bit of time to make my decision). I remember choosing Rebif and when my neuro asked why not Avonex, as its only once a week, I said I was scared of the needle. My neuro kind of kicks me into reality and said I’d get over the thought of an injection and think more about how it would fit into ur life. With a once a week injection I have slight aches one night a week which I sleep through, I have been using it for about 8 months now and hardly notice the side effects. I take my injection on a Fri night and get to forget about MS until the next Friday night :). I have not had any relapses, is it because of the drugs? Who knows but I know that I would rather take every chance I can at delaying this disease as I read the stories of so many people effected.

Hi Minnie,

I was diagnosed a year and a half ago. I know what you mean about taking dmds makes it all seem more real.

Well, I went on Rebif at the beginning of last year and it really didn’t work for me. I had really bad side effects and got really depressed. I had to stop after two months. I then took six months out to see if my own regime would work i.e. vit d, vit b12, etc, gluten, dairy free. I had an exacerbation in that time but did pretty well. I feel that my MS, at the moment is pretty mild.

I started on Copaxone nearly two weeks ago as I thought that I really needed to give something else ago. As Hobs has said, once the disability is there, there is no going back. Copaxone has been brilliant, for me, apart from the first day when I used the auto injector and injected into my thigh muscle. I have never felt so much pain. After that, I have injected manually. It gives you more control and now I find it incredibly easy. I take the injection out two hours before, put an ice pack on the area and inject. I’ve had a few site reactions but that’s it. Nothing major. I also feel that it is already working and offering protection. I feel pretty much 100%.

So, I would definitely go on a DMD and from my experience I would choose Copaxone.

I hope that this helps and good luck with it all.

Adrian x

I have noticed Copaxone seems to agree with more people than Rebif.

Hi Minnie Mouse

I do know where you’re coming from. I went from first ever symptoms to DX in just 3 months and was then offered DMDs immediately which made it seem all the more real while I was still getting over the shock of diagnosis. I had just had a huge relapse which left me numb and seized-up from the waist down,I had been barely able to walk and my hands were very numb meaning I kept dropping everything. I was discharged from hospital when I could only just walk again and they sent me home with no support (not even a referral to physio) knowing that I live alone with my son (then only 15 yo). If only I had known back then what I know now I would’ve made a big fuss about that!

Anyway, six weeks or so later I used the msdecisions website and had a long discussion with my nurse who showed me all the auto injectors etc and gave me a large information pack about the options available back then (5 years ago). The msdecisions website has a useful section where you tick your priorities and it helps you narrow down your choices to find a drug which suits your lifestyle.

I chose Rebif and it kept me relapse free for nearly 4 years. I only came off it due to two more nasty relapses last year so I had to change to Gilenya (which is only available if you have tried an interferon and still relapse). For me, the decision to take a DMD was easy as I had had two significant relapses in 3 months and I wanted to do something positive to prevent that happening again. Which one wasn’t so easy but I did read a survey recently which said that the more involved you are in the process, the more likely you are to stick to it and not miss doses. Take your time and make an informed decision based on what is important to YOU. If it doesn’t suit you afterwards due to the side effects or because you continue to relapse, then you can switch and make another informed decision.

Good luck

Tracey xx

Thank you to everyone’s thoughts & opinions. I think it prob is the best to go the DMD’s just in case, so far I have been lucky. I think what i find hard is that i had my first symptoms was back in 2005. Nothing major happened that I was aware of. But then I must of had relapse as the pins & needles started which in turn I got DX with ms in June 2013. I got told from the start that wasn’t eligible for medication so that was my frame of mind & ignore it all. Before Christmas I started to struggle with it all. Then I had my appointment with my neuro and that’s when the injections were first mentioned. Now I have to deal with it all again, which is the bit I’m struggling with. But I don’t want to have regrets but at the moment my ms does seem mild compared to most, which I am greatful for.

This is why I’m struggling to make a decision, so much to take in

Oh what’s the websites for ms decisions?