Help! have to decide what DMT’s I’m going on next week and it seems like a minefield! Iv had 1 not so pleasant relapse and another barley noticeable relapse in the last 6 years. I’m not overly keen on injecting myself but my nurse said would probably be more like an Epps pen? I have GERD so anything that’s going to upset that is probably a no go! Any help would be really appreciated with any advice on side effects! Thankyou
What is your choice between?
If it’s the beta interferons, Copaxone (the injectables), Aubagio and Tecfidera; with GERD you probably want to steer clear of Tecfidera (nausea being a common side effect). Personally I don’t much like the look of Aubagio: too many side effects for too little gain. So what you’re talking about is the beta interferons and Copaxone.
The beta interferons can all give your side effects, like flu type aftereffects. That might not be a big issue with Plegridy, as it’s only injected once a fortnight; you can avoid the effects with paracetamol and taking it easy the day after though, so not much of a problem.
Copaxone is injected more frequently (3 times per week), but it has a good record on side effects. The one thing you have to remember is to rotate your injection sites. I took it years ago and I’m actually about to restart it (after years without relapses, it was assumed I was now Progressive, but 3 relapses in just over a year makes me now Progressive Relapsing!).
With subcutaneous injections, it’s a tiny needle that just goes under the skin. Many people prefer not to see the needle and so use an auto-injector. Personally, I’m not bothered by needles and I believe (no real evidence for this, just based on what people have reported on here), that auto-injectors cause more injection site reactions than just using the needle. In the beginning, it’s a bit weird injecting yourself. I started with Avonex, and I remember having to make my brain ‘force’ my hand to stick the needle into my leg. But that was intramuscular, so a bigger scarier needle. Subcutaneous injections are much easier, they don’t hurt and while you still have to get used to jabbing yourself, it’s not too bad.
If you have any other options, let us know: someone will have tried it and had good or bad experiences which they can pass on.
Meanwhile, if you’ve not seen it already, have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid
Best of luck.
Thankyou for kindly replying with so much good information! I believe they are pretty much my 3 optionsalthough they haven’t said for sure. I have looked on the ms decisions website! My level of ms is currently rather low apart from fatigue and bloody bloody itching! So it makes me think not to bother but I know that ms probably not wise! I think I’d get used to injecting I just wish they could say right… this one has the best reviews type thing!
I really appreciate this post as im in a similar position, just waiting for the appointment to come through to see my neuro and discuss DMTs.
It’s very scary and confusing thinking about starting treatment to be honest, but a necessary evil i guess.
Sorry, that wasn’t supposed to be anonymous! Just caught the button!
I am in the same boat! DMT is so overwhelming.
I am also thinking of not starting treatment right away as my symptoms are not too bad at the moment. Is that a bad decision? I have read about the importance about early treatment but I am finding it hard to decide on one!
Thanks to you all for sharing your experience and your advice!
I have been incredibly lucky and have been diagnosed for 17 years without going on treatment. I was 16 when i was diagnosed and drs took the decision to leave it a few years before looking at drugs for me as they had only just come out and there wasn’t so much data on the longterm effects.
I expect if a 16 year old was diagnosed today they may be put on them much sooner tho.
Overwhelming is the word though NL007
I think it’s a miserable decision to have to make.
No one knows what the heck is going to happen in the future. So the neurologists want everyone on a DMD. Unsurprising really. The only protection against devastating relapses is drugs. And yet they pretty much all come with possible side effects.
It’s all a case of balancing risk against reward. The risk of taking no DMD is potential relapses. But the risk of taking drugs is side effects. So everyone had to make their own decision, what is the most risk they are prepared to take for the relapse reduction potential?
Personally, I think taking a DMD of some kind makes sense. I’ve been unable to take most due to having a rubbish body that reacts badly to drugs. The only one I’ve actually been able to take is Copaxone. (Which is why I’m restarting it.)
But my body has taken one hell of a beating from relapses. Nothing really works properly, legs, hands, bowels, bladder, brain. They’ve all taken damage. Which means today I can’t walk, transferring from seat to seat is often difficult, I use catheters to empty my bladder and had a colostomy 2 years ago as I can’t empty my bowels. I can’t remember the plot of books I’ve just read, or the plot of TV series. Luckily I remember loads of stuff about MS!
So my advice would always be to think about taking a DMD. Regardless of your choice, don’t feel bad about that. Ever, regardless of what happens, beit a positive or negative. Just weigh up the options and make your decision for yourself.
Thanks a lot for your reply Sue. It’s really useful to hear from someone who has been living with MS for a long time.
It’s difficult to map the future out but it’s important to think about it!