Advice on treatments

Symptoms and treatments
1

Hi

Newly diagnosed… I was wondering if anyone could offer advice on treatment? Neurologist has recommended the strongest treatment of the fusion, but I have a meeting with MS nurse to discuss all my options. I just wondered if anyone had any advice on any treatment options

Thank you

2

Hi,

I’m afraid I don’t have any advice as I think you’re a little further ahead in the process than me, but would be interested to hear what the MS nurse says? I have my first MS nurse appointment next week, and I’m not quite sure what to expect.

Hope your appointment goes well.

Take care.

3

Hi Kate,

There are two drugs that can be given by infusion, Tysabri and Ocrevus.

I am on Tysabri, but have it by sub cut injection, which is an option. I was advised that I needed a strong hard hitting treatment as I had very active RRMS. I haven’t had any real problematic reactions to it and everything seems to have gone quiet for me. I have my first MRI since starting treatment almost a year ago next month.

The MS nurse will be able to advise you, as to which they think is best for you and why. Sometimes people pick based on their own personal circumstances and beliefs. Whilst you wait to see the nurse, you can read about and compare DMTs here:

Good luck and let us know

Jx

4

Hi Kate, My neurologist confirmed my MS diagnosis then said I’d have a meeting with my MS nurse,which I did, which lasted an hour or so. Plenty of questions asked and to ask…make a list.Then had follow up appointment with neurologist again and he had already picked out the dmd which would work for me the best as I have active RRMS.Phoned MS nurse again and she arranged the drugs to be delivered to the house Vumerity one tablet in morning one at night for a week then 2 tablets in morning 2 tablets at nigh from then on…hope you get the answers you want when you see your MS team

5

Thank you all for the replies and advice. I have been looking at different DMTs, it just all feels a little overwhelming

6

When I met with my neurologist he told me which would be best for me age wise and with active MS.he gave me booklet on vumerity with a diary inside to keep a track of side effects.He also gave me a A4 size booklet on the other 14 dmds available…he did say it was my choice to read and decide, but after reading vumerity seemed the best fit for myself

7

There are also (documented) holistic and functional medicine approaches that address nervous system damage and detoxification (toxins contribute to much of the associated inflammation and pain). If you’re interested, let me know. Wishing you the best!

8

Also down to your own personality and lifestyle. I was offered a DMT which requires tablets twice a day, at the same time everyday half an hour before meals.

I could never stick to such a schedule and would miss and mistime them for sure!!

I’m now on Kesimpta, supposed to be highly effective and a simple once a month self injection. Works really well for me and no relapses in the 18 months I’ve been taking it.

Of course if you don’t like needles it wouldn’t be the one for you.