Last reply 1 week ago
I’m as green as grass…

I have just been diagnosed with rrms
To say I’m gutted is an understatement, however my consultant has recommended me for Ocrevus or lemtrada ASAP. I’m leaning with Ocrevus in all honesty, I want your experiences if any of you have any. I’m certainly not looking for backing from anyone because this is my choice I just want insight.

Cheers in advance guys

Marlon

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mlgilber1
2 weeks ago

Hey! I’m on Ocrevus. I’ve only had my first two half infusions, but I’m doing so much better than I was. Most of my symptoms have disappeared or lessened tremendously. I can now walk fast and without using my walker. My cog fog is gone along with spasticity, cog fog, swallowing issues, and the ms hug. It’s lessened my fatigue and my tingles. I used to be numb and tingly head to toe, but now I just get the occasional tingle in my feet and my legs used to be bad… they were numb, tingly, burned, and felt heavy, but now they’re pretty much back to normal. I did have a slight infusion reaction during the first half of a itchy scalp, but they took care of it. I had no reactions during the second half. I just recently came down with shingles which is so painful and I know that ocrevus lowers the immune system so it probably triggered it. I recommend getting vaccinated before it. I believe vaccines have to be given 6 weeks prior to the infusion and lemtrada also is an immunosuppressant. When I was going to do lemtrada my other neuro actually had given me meds for shingles to take for the weeks leading up, but shortly after I got into a ms specialist and decided on ocrevus so I never took the med. I’ve also heard some positive things for lemtrada as well. Deciding on a dmt is always difficult. Let me know if you have any questions. Best of luck!


marlon_dagg
2 weeks ago

Cheers for the rapid reply. Shingles doesn’t sound too clever but I guess its rough with the smooth? I suppose I best get into my ms nurse/consultant to start with the vaccines cos I just want to get cracking with this.
I promise you when I have questions I’ll be turning to you lol!
Looks like this page is gonna become a big part of my life.


stumbler
2 weeks ago

@marlon_dagg , you could try selecting the “Ocrevus” tag that has been added automatically to the foot of your post above. This should locate all previous mentions of this treatment.


vixen
2 weeks ago

Hi @marlon_dagg, we have all been there with being gutted/floored/devastated, and yet here we all are getting along with our lives in various ways. You wouldn’t have been asking this question a year ago, as Ocrevus has only just been licensed in the U.K. I’m not on either of these DMTs but, from what I have read and heard of, Ocrevus seems to be well tolerated during and after treatment. I got diagnosed last year -a complete surprise with no real previous, and this site has had a huge impact on my life so glad you found it. Take care, eat healthily, rest loads and stay as balanced and stress-free as possible. X


marlon_dagg
2 weeks ago

@stumbler not really one for webased carry on In all honesty, more I’ll speak to you in person type of guy lol! So my apologies just trying to get the hang of this site.
But I’m sure I’ll be speaking with you guys in the very near future.
Cheers x


nutshell88
2 weeks ago

Its a shock indeed.
I remember when I first got it I lost my eye couldnt study well so many headaches and break downs
Was suddenly the slowest to go upstair at school

My parents didnt tell for 5 years
Chose interferron when i found out couldnt take it so went on betaferon same case went on avonex couldnt stand them
Afterwards i chose to free myself off meds for 9 years

Best thing is to live
Keep living your life just
as before but dont stress and most importantly dont worry

Be safe

Worked and studied in uk 2 years went back to saudi
Now i have a job started gilenys last month
Im 99% fine just slow at rare moments but not disabled


grandma
1 week ago

@marlon_dagg welcome to our exclusive club. Just remember with ms, there is no such thing as a stupid question! Totally agree that in an ideal world face to face is always better, but we make the most here, and we are all so diverse, and very often live hundreds of miles away or even across the pond, but here you can rant, cry, moan, celebrate (I’m hoping to be doing the latter later on today when I have benn to court and won my tribunal to get my mobility car, of nineteen years back after mr government took it away if Feb stating that I was insufficiently disabled to warrant it. Anyway I digress we’re all here to listen, we don’t judge, and you can always send a private message, so just like talking to your mate in the pub! Welcome aboard and keep posting


marlon_dagg
1 week ago

@grandma, best of luck today. The government are s***bags but I’m guessing you’ve already realised this? Anyhow gotta get myself prepped for work… I must build cars 👍🏻


lightning87
1 week ago

Welcome to the club 🙂

It is a shock to the system being told you have MS. I had perfect health, rarely ill so to be told I had lesions after everyone telling me I was being silly thinking it was MS was hard. But you get yourself up, dust yourself off and hit it head on. We will all have crap days but remaining positive is the best advice I can give. Live your life as you would pre diagnosis and try be as stress free as possible. It isn’t the end, merely a new chapter and you have all of us.

I’m on Tecfidera so can’t comment on other DMDs but go with your gut – it’s never far wrong.

All the best x

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