Last reply 16 hours ago
Ocrevus and SPMS

Hi everyone,

I was with my Neuro on Monday and shd told me that, given the evolugion of my symptoms lately my RRMS may had become already an SPMS.
Thus she recommended me to start taking Ocrevus and leave the treatmenr I am on at the moment (I’ve been taking Tysabri for the last 8 years).

I think it is a good decision even thojgh there is still no studies sating that Ocrevus works on SPMS…

What do you guys think? I’m making the change anyway but I would really like to hear your opinions and impressions on the topic.

Thanks, regards and Happy New Year!

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dominics
7 months ago

I imagine your neuro – with likely 15+ years of clinical experience – has v good reasons to suggest you have Ocrelizumab.

The study work on the class of drug that both it and Alemtuzumab belong too point towards them being – and I use this phrase loosely – the next best thing to stem-cell treatment.

Perhaps ask yourself why you shouldn’t be taking it instead of why you should?

I am biased insofar as I start mine on Friday 😉

Best,

Dom


stumbler
7 months ago

@jacobo_santamarta_barral , there is a study (https://clinicaltrials.gov/ct2/show/NCT03523858), presently recruiting, to evaluate whether Ocrevus slows progression in both Primary Progressive (PPMS) and Secondary Progressive (SPMS) MS.


emmarichards
7 months ago

Hey,
I could have written this exact post ! I too am hoping to leave Tysabri after 10 yrs and make the jump to Ocrelizumab. I have been in touch with Dom (comment above) so will follow this post with interest. Good luck with whatever you decide,

Emma

Thank you for the replies, guys.

Dom I can’t think of any reason why I shouldn’t change the treatment, honestly…

stumbler I will tell my neuro about the study because I don’t think she is aware of it…she said there were no studies going on

I will keep you posted.
Thanks again!

So, some news…
I talked to my MS nurse and he told me that for the first time after 8 years the JC virus gave a positive result.
As a result my doctor is going to give me the new medicine earlie than expected.m, which is a weird coincidence, don’t you think?


stumbler
7 months ago

@jacobo_santamarta_barral , MS in an unpredictable condition. Nothing surprises me…….


mlgilber1
7 months ago

I have RRMS, but I’m on Ocrevus and doing really well so far. I was lucky that a lot of my symptoms have disappeared or lessened tremendously. I was told before going on it that my MS is aggressive, but I’m finally starting to get so much better. I went from using a walker to not needing one at all. Best of luck! And let me know if you have any questions.


dominics
7 months ago

@mlgilber1 – how long did it take before you started noticing any differences? Has it has any effect on your eyesight?

I start my Ocrevus in about 10h from now. Am off to bed.

best,

Dominic

@mlgilber1 I’m so happy to hear that!!! Really happy for you.
I really have high expectations for Octevus…
I have the same questions as Dom

Btw Dom I wish the best of luck for you tomorrow!


mlgilber1
7 months ago

@dominocs and @jacobo_santamarta_barral Well I have a really negative effect to the steroids so at first I felt a little worse for two weeks, but within a month is when my family and I noticed I was doing so much better. They have approved me to do future infusions without the steroids if I want. It probably took two to three weeks to get rid of the walker. Keep in mind it’s made to slow progression and can take up to two years before improvements are seen so I was very lucky. I have my first MRI next month to see if there’s a difference, but I feel so much better. My legs were numb and tingly for over a year and then felt normal. No more spasticity really either. Lately I’ve had more tingles, but I’m positive it’s just a minor flare due to getting the shingles or a UTI. Both are very common side effects and can cause a flare up. I’m really happy with my decision though. I wasn’t sure I’d ever feel normal again and now after only the first two half doses I’m getting back to my old self. @dominics Good luck with your infusion! I did get itchy during the reaction, but the nurses are awesome at taking care of infusion reactions.


mlgilber1
7 months ago

@dominics I’m not sure if it’s had an effect on my eyesight. My eyesight was doing a lot better until this little flare so right now I have some blurring, but don’t think it has anything to do with the Ocrevus.


dominics
7 months ago

Thank you, @mlgilber1 . Writing to you from the infusion suite! Will let you know how things go.

Br

Dominic


petlamb
3 days ago

@dominics Hi, I’ve just seen my MS Nurse today and she has mentioned Ocrevus to me as an option now that I am SPMS. The first thing I did when she left was to come on here and research it. Lo and behold, yours was the first post that I read! Just wondering how your journey with Ocrevus is shaping up as you have been on it for seven months now so maybe you’ll have some useful opinions.

Thanks in advance!

Suze


chantals
3 days ago

I am following as I am interested in Ocrevus for my active RRMS. I hope to see you guys do well on it!


dominics
3 days ago

@petlamb – it is great to be able to say that I feel great and so far both infusions have gone super-smoothly.

Unless it was medically contraindicated I’d bite their hand off. So many people seem to have to fight for it you are v lucky.

When you look at the patient years on the drug it is extremely well tolerated.

PM me for anything else.

Best,

Dom


petlamb
1 day ago

@dominics Pleased that it’s going great for you and thanks for your reply. 👍

Suze


silvana_hansen
1 day ago

@dominics and @petlamb After putting in my complaint to PALS I am finally getting an MRI early September followed up by an appointment with The Neurologist, the first in 15 years. I know he is resistant to prescribing anything so I need to go armed with information as they keep saying there are no drugs available for SPMS. Do you think Ocrevus would be the best option for me to request/demand. I’m fed up with being fobbed off and ignored.

Silvana


itsmewithms
1 day ago

@silvana_hansen my Neuro suspects I am heading into SPMS which would follow the averages…I am in my mid 50’s and have been diagnosed for 15 years. Given that he recommended I switch off Rebif (which I have been on for 3 years following 11 years on Copaxone) he recommended I consider (in this order of preference) Ocrevus, Mavenclad and Mayzent. There are drugs approved for SPMS now…at least there are in the US


silvana_hansen
1 day ago

@itsmewithms thanks for the info. I’ll look into those and whats available in UK. Then I can be prepared when I get my appointment. Much obliged.


petlamb
1 day ago

👋 @silvana_hansen Good luck with your appointment with the neuro – read up on the posibilities beforehand and sock it to him ✊ ! No more Mr Fob Off! My neuro appointment in in November (no MRI), but I will be going armed with as much info as I can get my hands on! Can I ask please why you complained to PALS?

Thanks in advance,

Suze


silvana_hansen
1 day ago

@petlamb I was encouraged by gina_king and highlander to complain to PALS. The only test my Neurologist gave me was the hammer on knee and pinprick test, way back, and he told me that no drugs would help me. My first symptom was optic neuritis 20 years ago. But MS wasn’t mentioned till 2003. Now that I know that there were treatments available when I was RRMS I am angry that nothing was offered. Now I’m told I’m SPMS and there are no drugs to help. I am so cross and feel as though I’ve missed the window of opportunity to slow the progression. So I will be going in armed and dangerous! I’ve been ignored for too long!!!


petlamb
16 hours ago

@silvana_hansen I’m so sorry you’ve been treated so appallingly. You have every right to feel so angry. It’s an abomination. A complaint to PALS was definitely the right move. YES – go in all guns blazing and make yourself heard. Don’t be quietened. Say all you’ve said on here. Anyone and everyone would be feeling the way you do right now. We’re all behind you. Please let us know when you get your appointment.

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