Anyone taking these DMDs?

Hello all,
I have recently been diagnosed with RRMS. My most recent scan showed two new lesions. My consultant has recommend that I begin treatment (DMD).

I am trying to decide between the following:
Ocrelizumab/Ocrevus (infusion)
Ofatumumab/Kesimpta (injection under skin)

Is anyone currently taking either of these DMDs and could share your experience, symptoms, how it has/hasn’t helped your MS, etc. I am scared to begin medication because but also feel that it’s very necessary due to my MS being active in last year and how it could affect me if I don’t start a DMD.

Thank you for reading. :slight_smile:

1 Like

H Beth1, im in the same position as you and been offered the same 2 drug’s.

Ive not decided yet on which but its all so scary.

I would too love to hear peoples opinions on them.

Xx

1 Like

Hi there Beth1 and Becksx,

Welcome to the forum.

Your dilemma is a common one, and some members here will likely have experience of the drugs you’ve been offered, but I have only used Rebiff, which they don’t use much now so I’m afraid I can’t advise. However, if you click on the following link to the MS Trust’s ‘Decisions Aid’ I think you will find some useful information. Try the ‘MS Decisions tool,’ it’s helped many.

Hoping it helps you,

Ben

1 Like

Hi, I am having my 2nd ocrevus infusion next week. I didn’t have any side affects from mine, it was much easier than I expected as I’m not very good with hospitals. I haven’t got anything to compare with as this is the only dmt I’ve taken and my consultant thought this was the best one for me. Hope this helps :heart:

2 Likes

Very helpful thank you for sharing. I have decided to go with this treatment.

1 Like

Thank you!

Hi there, ime having to have the infusion, are there any difficulties with it, ime waiting on letter to have the first 1 soon, How many hours are you in hospital while they do it, ide be very much appreciated for your feed back.

2 Likes

Hi, I found the infusion much easier than I anticipated. I went in at 9 and came out about 2.15, a bit tired but I’m always tired. Your 1st infusion is done in half, so you would have 1 appointment and go back to hospital 2 weeks later for the 2nd half of your infusion. Think it’s to see how you react to it, hope this helps.

2 Likes

Hello. I will let you know when I start treatment how it went. I am waiting for a date from hospital to have my first ever infusion. I know the first dose had to be split into two sessions, half of dose then two weeks later the other half. Then every 6 months if I’m correct. Good luck and hope all goes well with your treatment. Thank you for reaching out!

3 Likes

Thank you for reaching out. I am on the list now to be scheduled for my first infusion. Hoping it all goes well. I am very pleased with my nurses and consultants. They have been very helpful. Also happy to have chat forms like this for support.

2 Likes

I hope you don’t have long to wait, the infusion itself went really well for me. It actually went much quicker than I thought it would, good luck for yours and let us know how you get on. Take care, Angie❤️

1 Like

Hi there, A hope your next fusion goes aswell as the first, To be frank ime on other medication, Backlofen’ Pregablin’ And the 12 Spays a day of Sativex, and Anxiety’ Depression’ tablets, and I hope Ocelizumab doesn’t clash with them, But ime sure my Specialist Nurse knows me better, And wouldn’t suggest this for me, Because the more I read about it, the more ime worrying, I’ve got to be strong and hope this goes fine for me, Thanks For listening…:+1:

Hiya, honestly try not to worry too much. Your specialist team will know what medication you’re on and wouldn’t let you have the infusion if they thought it was going to interfere with any of it. I’m on gabapentin amitryptilin and I’ve been ok❤️ let me know how you get on. Take care

Hi there,
I’m due to start Kesimpta [subcutaneous] hopefully soon.
Neurology we’re debating the Ocrevus [intravenous] but decided not to pursue --I did hear it’s a milder option to Lemtrada, which I tried previous and unfortunately suffered the worst of the side effects.
I think both Kesimpta and Ocrevus are equally good; though subcutaneous may be less abrasive than intravenous on me this time.
Best,
JP