2018autoimmune diseaseDoctorsGilenyaMSMultiple SclerosisOcrevusPPMSTecfideraTreatment

Starting Ocrevus (the latest MS drug)


I started Ocrevus (ocrelizumab) on 30 January 2018. The drug was listed on the Australian PBS for Relapsing Remitting MS (RRMS) on 1 February 2018, which makes me one of the first in the country to start the drug (outside of a clinical trial scenario).

Why is changing MS medications so hard?

Switching MS medications is time consuming. You don’t simply stop taking one and start another. Aside from the fact that the initial authorisation is only available from a neurologist, MS drugs are potent. Regardless of which MS drug you may be stopping or starting, a gap of between four and eight weeks is required. Of course, the problem you then face is a slightly higher risk of experiencing an MS relapse.

I’ve been on two previous MS medications: Gilenya and Tecfidera. Both were oral tablets. Both worked relatively well managing my disease, even though I did have side effects. In the past, my disease outcomes on both Gilenya and Tecfidera would have been considered at least average, maybe good, and certainly not worrisome enough to prompt a change in treatment.

However, new international guidelines for treating MS, Brain Health: Time Matters in Multiple Sclerosis, recommend patients and neurologists aim high: a treatment that results in no evidence of disease activity (NEDA for short). In my case, when taking Gilenya and Tecfidera my MRIs showed a few new lesions. But a few new lesions isn’t the same thing as no lesions, and so my neurologist, Professor Helmut Butkueven, and I decided to switch to Ocrevus.

Helmut is one of the lead researchers on the Brain Health report, which makes me an incredibly lucky MS patient. Helmut’s goal is NEDA for all of his patients, and if changing medications will increase the chances of that, he is all for it.

What was starting Ocrevus like for me?

The beauty of Ocrevus is the delivery. One 600mg five hour infusion (given as an outpatient in hospital) every six months. That’s it. No daily tablets. No weekly self-injections. No monthly infusions. One every six months.

However, the first dose of Ocrevus requires two half doses two weeks apart. This is to minimise any adverse reaction to the infusion or side effects from the drug itself. In other words, 300mg on Day 1, and another 300mg on Day 15. Ocrevus also requires pre-meds, including antihistamines and a small dose of methylprednisolone.

As with all MS medications, there is a long list of potential side effects. I can report only two: after the first dose I was severely fatigued for five days with an embarrassingly runny nose. I had no side effects after the second dose.

All in all, a brilliant outcome. I was surprised to learn that my dose of Ocrevus was made up for that morning in the hospital pharmacy… I had (perhaps naively) assumed it was imported from a big pharma factory. I go back in early August 2018 for the second dose.

What is the big deal about Ocrevus?

Ocrevus is being called a wonder drug because it is has good results for RRMS: a reduction in the frequency of relapses and disease progression. I’m no scientist (please, get your medical information from an MS neurologist and your national MS society), but that result plus the lifestyle benefit of an infusion twice a year means a great deal to me.

It is also the first drug to have a slight impact on Primary Progressive MS (when compared to a placebo in a trial scenario it moderately reduced disease progression). However, that result wasn’t significant enough for Ocrevus to be listed on the Australian PBS for PPMS. There are more than ten drugs available for RRMS, and none for PPMS. Ocrevus offers a small glimmer of hope for those with PPMS (including Sammy, who I interviewed about life with PPMS), and I do hope the efforts by MS Australia and others to have Ocrevus listed on the PBS for PPMS come to fruition.

Despite being a ‘wonder drug’, Ocrevus comes with a list of disastrous long term risks, including an increased risk of breast cancer (I can’t believe I just wrote that, but there you go). You only have to go to the Ocrevus site to get the idea… Any drug that has a permanent half-page called ‘Important Safety Information and Indication’ means business. Still, like so many others with MS, I feel the benefits of slowing disease progression outweigh the increased risks.

And a caveat

This is a personal blog discussing my own experience. This is not medical advice, and it is certainly not an ad for Ocrevus. And lets face it, I was positive about Gilenya and Tecfidera when I started them, and only time will tell if I remain positive about Ocrevus.

6 thoughts on “Starting Ocrevus (the latest MS drug)

  1. Astrid, this is exciting!! The fact that only twice a year infusions are required in itself must make you feel that this is more like a trip to the dentist. Maintenance. Sending you lots of love. Xxx Peta.

    1. I will be definitely discussing this with my neurologist at my next appointment. Sounds very no fuss. But then neither is taking Gilenya, anyway it doesn’t hurt to ask the question??
      Thanks for sharing

  2. You are very brave. The high risk of malignant tumours, increased PML risk and lack of long term data put me off Ocrevus. I have previously tried Betaferon, Copaxone, Avonex, Tecfidera and Tysabri (over my 21 year journey). All came with their own pros and cons, but after testing positive for JCV with a high titre, I have found myself back in the relative comfort zone of Copaxone. Three low-risk injections a week with no serious side effects is just too good to pass up while i’m stable. It’s good to know there are options out there though – even if they do come with high risk. Wishing you all the best.

  3. I have just started ocrevus in dec is great hear of someone else’s story of taking it . Was hard to find information online about people’s stories as it is very new. I’m hoping for some good results as my ms is progressing.

  4. Hi Astrid, thanks for writing this!
    I am very new to MS and was only diagnosed with RRMS yesterday. My Neuro suggested I go on Ocrevus but only a blood test result comes back showing that I’m JC virus negative, due to the higher risk of the virus activating itself if I have it. Tysabri is my other option apparently.
    Anyway, I just wanted to say thank you for your blog about this new Ocrevus medication. It was extremely helpful to me.
    All the best 🙂

  5. I have previously tried Avonex & Copaxone, both with complications, so have been on Tysabri for the last 7 years. Tysabri has been great and had become part of my routine. After testing positive for JCV, and continuing well past the 2 year safe period, then a new lesion, my neurologist said it was time for a change. I am scheduled to start my first treatment of Ocrevus on Monday with the follow up treatment 2 weeks later.
    I was concerned about the longevity of testing and clinical trials and after reading Kate’s comments I am feeling concerned about malignant tumors and PML. One of the reasons for going off Tysabri was because of PML.
    Kate, are you able to let me know where you got your information on side effects from please?

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