New Diagnosis, being offered DMD but which one?

Hi There,

I got diagnosed 3 weeks ago after nearly 3 years of MRI scans and an arm full of blood tests… NHS has been amazing. I’ve only had two episodes and have been told I have RRMS that is active, saw the MS nurse this week and she has said I’m able to have DMD but I have to make the choice, they all seem very daunting, or do I stay drug free and try the exercise and diet route.

I know at the end of the day it is my choice but I’d love to hear other experience of the below therapies.

Injectables:

Rebif

Avonex

Plegndy

Copaxone

Tablets:

Tecfidera

Aubagio

For the tablet program I have to go on a three month waiting list to get an appointment to see if they are for me. The nurse thinks Copaxone at 3 times a week would be best for me.

Look forward to hearing from those whom have trod the path in front of me.

Helen

x

Hi Helen,

I’m afraid I’m a few steps behind you (appointment to discuss DMDs in a few weeks). Out of interest were you offered Lemtrada as a first line DMD?

Hi Katy

I wasn’t it is only after the meeting with the nurse that I looked up the different treatments, as the neurologist said I had a mild form and drugs probably weren’t needed, slightly confused over the whole thing. Having read some other comments I think drug therapy early on is a good path to follow, but the side effects sound awful. I’m the main breadwinner and self employed so having weeks of bad days, although I did manage to battle on through the double vision etc of the 2 episodes so maybe I’m tougher than I think :wink:

Have a good weekend, tingle free!

Helen

Ive been taking Tecfidera since November. I did my own research and when I had my neuro apt we discussed lemtrada too, but I wasnt able to choose it as I didnt fit the requirements :frowning: However tecfidera is probably the best 1st line treatments with excellent % rates for drops in relaspes. The side effect werent half as bad as I first thought and have reduced significantly since 1st starting with only slight flushings and tingling sensations every now and then. I never suffered from stomach problems, so unless things change for me, im happy to continue on tecfideraGood luck with your decision…

Active MS needs treating. It rarely stays mild forever and sooner or later you start to use up your healthy brain reserve. If it was me I’d want the most effective possible. Out of the ones you’ve been offered Tecfidera is the most effective.

I chose Lemtrada as that’s better still.

Think of a DMT as an insurance policy - you might not need it now but it should stand you in goodstead in the future.

The MS Trust have a DMT comparison chart. Its basic but a useful starting point. If you are looking for comprehensive information without any sugarcoating Barts MS Blog is the best source of info around.

Thank you for taking the time to reply. I’ve been looking at all the drug options I have been offered, but I think hearing first hand experiences is very helpful, the when you read about the side effects on a medical site they have no human feeling behind them. I’m not one for taking medication.

I’ve found the OMS site, which seems interesting. A life style change and drug therapy looks a good way to go. Now got to get my partner on board… he is in denial about the whole thing!

Going to get out there in the sun and top up my VIT D!

cheers

Helen

Thank you for your reply. I’d not heard of the Barts MS Blog, so going to hunt that one out. Did look on the MS Trust drug comparison site that had been suggested by the nurse, I guess this is why she is giving me a month to think about it, there is so much info to look through.

My brain already feels somewhat depleted, I’d put that down to age, nearly 50. I’m learning that this is a learn as you go thing and I need to monitor myself to see what works best, but hearing others experiences gives me strength and hope. I had a friend who had progressive MS and died within 5 years of diagnosis, so I was alarmed at first but now see very few people get that ill from it. I’m sure this forum will be of great help to us newly diagnosed.

All the best

Helen