Last reply 2 months ago
Dmt help

I have my consultation next month to decide what treatment I’m going on for rrms. I have no idea what I’m walking into apart from I can decide between injection and oral tablets. I am certain I’d prefer the latter. Can anyone give me advice on what’s best with least side effects? Thabks

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grandma
2 months ago

@blagaman182 There are lots of DMT’s, which ones have you got to decide between? Are you really anti injections, has your ms nurse given you reading material? These questions need to be answered first and side effects are different for everyone so all info will come from anecdotal evidence. There’s lots to consider.


dj-ldn
2 months ago

@blagaman182 I was diagnosed in January and have decided to go with tecfidera. I am on week three now and the side effects aren’t too bad. I did turn red for a couple hours on day one but that’s about it.

Its like @grandma said, there’s sure to be different oats for different folks.
Also you can type in keywords into the search thingy at the top of this page and find past or existing discussions, just in case you wanted to have a look at what people here have said about the individual meds .

Hope this helps.


daveo
2 months ago

I think the general consensus is that injectables are old news . There are better drugs available that have a higher chance of working for you and hopefully will lead to a better outcome.

Look at the efficacy of the drugs you have available. It’s a trade off between risk and reward. Find out what the risks are and find out what the rewards are and think hard how you feel about that.

The option of best with least side effects doesn’t really exist. It’s sort of one or the other. For what its worth, i would say that side effects are probably managable and statistically the worst case scenario wont happen. There is a load of info available. I’m happy to point you in the direction of some solid info if you like.


dominics
2 months ago

@blagaman182 – ask your neuro their view on the treatment rationale that is becoming the norm. The so called ‘Inverting the pyramid’ approach where the thought is that it is best for your long term prognosis to treat with the most efficacious drugs asap instead of stepping slowly towards them.

Ideally your neuro should be having a conversation with about your attitude to and understanding of risk vs reward vs utility. This should then be put in the context of your individual circumstances. Unique to you so trying to use a general baseline or remarks as being useful for you is very tricky.

You need to take a long-term view. MS is never benign and is smouldering away whether or not it is manifesting itself in symptoms or MRI.

You can try reversing the question to them and asking what reasons they would have for not prescribing you the highest efficacy treatments (Ocrelizumab, Alemtuzumab, Cladribine). See how they respond.

BTW – I take Ocrelizumab as my 4th DMT in 26y. If only it was available sooner, I’d have been agitating for it back then.


cammo
2 months ago

@blagaman182 I chose Gilenya as I didn’t want to go down the injection route. It is working and my neuro doesn’t want to change anything.

I would have chosen Mavenclad if it was around when I was diagnosed. A pill for 5 days once a year for two years… brilliant. It is apparently a form of chemotherapy but same risk profile as Gilenya.


blagaman182
2 months ago

@daveo any information would be great thankyou


katherineee
2 months ago

I ordered booklets from MS Trust and MS Society which really helped my decision as all the information you need is there for you to cross examine.


milliepipkins
2 months ago

Lemtrada (alemtuzumab) is aggressive and has a lot of side effects, but it is highly effective. However, if it doesn’t fit in with your lifestyle or its not for you, there is such a large variety of other drugs to take. The MS Trust provides a DMT booklet which really helped me make my decision.


tomsoshi
2 months ago

I’m on Rebif for the past 5 years since diagnosis. No major flare ups in that time, but overall the efficacy is pretty bad so i wouldn’t wholeheartedly endorse it. I heard from my neuro that the NHS aren’t prescribing it any more (i’m in singapore) . But i’m starting to feel like a dinosaur so we are discussing more modern alternatives!

The side effects (flu like symptoms) still affect me and are very annoying but manageable. but that’s different for everybody.


grandma
2 months ago

@tomsoshi I was on the first DMT, Avonex, which was well known for Its flu like symptoms, but as it was a weekly injection I learnt to do it at 9 at night so when the symptoms hit a couple of hours later I was in bed. Can you choose when you take the Rebif? I don’t know enough about it, am now on Tecfidera and
I must admit taking 2 tablets a day is a joy after 23 years of sticking a big needle in myself👍😜


breezy19
2 months ago

Copaxone was my first med and I was on it for 3 years. It has the least side effects – the occasional soreness or redness at injection site, but no other problems ie. nausea, susceptibility to infection. And it was surprisingly easy to get used to injecting myself.
On Gilenya now for the past 2 months after new activity on my mri. I haven’t had any side effects yet at all, thought it is known to cause some, mostly susceptibility to infection. The one thing I wish I’d known beforehand was that once you’re on it, you can’t have any “live” vaccinations, such as yellow fever vaccines, which can restrict future travel plans to some parts of the world. If I’d known that, I would’ve gotten the vaccinations before starting Gilenya!

While I personally would have no hesitation in recommending an injectable to start, all the evidence in recent medical literature shows a significant reduction in rates of relapse and progression in those that start early with Gilenya and stronger, as opposed to those that start on an injectable and change to a stronger med years later. So perhaps think about the “hit it hard and hit it early” school of thought. Cos it’s too late to change your mind once you’ve had progression. The side of effects of a medication might be nothing compared to the side effects of MS progression….


kimb640
2 months ago

Hi @blagaman182 hope you well 🙂 I don’t know if this will be any use to you but I have been using injections for my RRMS (the rebismart device) for just over two months now it’s my first DMT and for me personally I’ve only suffered with tiredness on the injection days and injection site reactions I look like a human pin cushion haha other than that I feel relatively normal …. that been said we’re all different and I’m sure you’ll find one suited to you and what your happy with 🙂 a lot of helpful people on here will be able to help you 🙂

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