Newly diagnosed of MS

New diagnosis and before diagnosis
1

Hi

I have recently been diagnosed with having active RRMS and still trying to get my head round it as it came as a complete shock (as i expect has done so to all). I’m at the stage on deciding what medication to take or whether to take any. I’ve looked through some medication and thought I’d picked one but was told by the consultant & MS Nurse it wouldn’t be strong enough for me so they suggested another (Mavenclad).

Is anyone on this or know anyone on this? I’m struggling to decide what’s best

I still need to do a lot of reading and research on MS as I know very little, its all overwhelming

Any advice would be very helpful

Louise

2

hi louise

mavenclad sounds great as it is in tablet form whilst the other ‘big guns’ are by infusion.

the others are lemtrada and tysabri.

do some reading on them all.

lemtrada also sounds great.

i was diagnosed in 2008.

neither lemtrada nor mavenclad were available then.

your ms nurse will be a great support for you.

be strong and with your choice of drug, you give ms a good kicking!

carole x

3

Thank you Carole I will do some reading on the others too. I had picked the injection Copaxone which they said no too due to strength. It’s a lot to take in and glad there is somewhere where we can ask questions and get support x

4

copaxone has a 30% relapse reduction rate.

tecfidera is 50% as is aubaggio and gilenya.

research the effectiveness of mavenclad.

it may be better than the others.

ask your ms nurse about it.

5

Thank you that’s helpful x

6

Hi Louise

I’m sorry you’ve had to come and join us on the bad ship MS, but welcome anyway.

Have a look at MS Decisions aid | MS Trust

All the disease modifying drugs (DMDs) are detailed. Your neurologist was right that Copaxone, while it’s easy to take/inject, and has few side effects, probably wasn’t strong enough. And now that there are so many better drugs available, it makes sense to take something with a bit more welly.

You need to weigh up the effectiveness of the specific drugs together with how well taking them will fit into your life and their potential side effects.

Generally, the more effective, the more possible side effects. But, and it’s a big BUT, taking as good a DMD as you can is likely to pay dividends for your future. Avoiding potentially disabling relapses is the aim of the game when you are newly diagnosed.

For people like me, having had RR/SPMS for more than 20 years, initially even the less effective drugs weren’t available, and subsequently I’ve had side effects from 3 different DMDs that’s meant I couldn’t take any at all for most of the time. I’m now quite badly disabled.

Take your neurologist and your MS nurses experience and opinions on board, but make sure you are happy with the drug you end up taking. After all, it’s your body and your future. You need to be certain you are taking the right medication for you. With most of the DMDs, if you don’t get on with them, it’s easy to swap. With a drug like Mavenclad, it’s action is longer lasting, so it’s not so easy to swap over (doses are taken in months one and two, then twelve months later). But I’m sure that your blood tests would show up any untoward effects after month one so it’s not as risky as it sounds.

Good luck with your drug choice. Feel free to come on here and ask as many questions as you need to. Since Cladribine/Mavenclad is a fairly new drug, we generally have less experience with it, but there will always be someone who can advise. Try posting on the Everyday Living board for personal experiences of the drug. That might help.

Sue

1 Like
7

Hi Sue

Thank you for your advice it is really helpful.

I have been busy reading and researching but find it helps getting advice from people with the knowledge of real life experiences.

I was debating on not taking medication but after more talks decided its best too, to help fight now and help lessen my relapses for now and in future.

Hope all is well with you

It really has helped coming on her and asking questions and getting feedback.

Still getting my head round things but being positive as the more i speak to people more I realise there is a wide range of people with MS at different stages with different symptoms and different coping mechanism .

I’m sure I will be asking more

Louise :slight_smile:

8

You are asking the right questions and from my experience if people on this forum don’t know the answer then nobody does.

I was preliminary diagnosed yesterday and the dr said that medication would not be helpful at the moment.

I suppose that many of us don’t have any medication during the MS diagnosis limbo phase?

Whatever you have been prescribed - ask on here first.

Dr A

Ssssue - its not the bad ship MS its the good ship MS as there is an exceptional passenger list

9

HI Dr A I agree prior knowing that we/I have MS, no medication was taken which made me question the reasoning to take any. With me my episodes (now I know my symptoms in the past were episodes)have become more frequent and most recently affected my eye sight for nearly 3 months, I feel maybe if I had been given medication it wouldn’t have been so bad or maybe prevented/reduced the episode. Its the unknown that’s really scary for me. I have decided and agreed to go with Mavenclad. I’m due to pick them up next week. Weighing up the pro’s and cons and speaking further to the MS Nurse and family I have decided to give it a try. From reading I know the medication will not prevent episodes but hopefully help reduce them - Fingers crossed :slight_smile: I hope all goes well with you after you recently being diagnosed. Louise