Hi everyone. I had my Ocrelizumab infusion, first one, 11th Sept 2019. Next one due 11th March 2020. Im starting to experience the beneficial effects are wearing off. Has anyone else experience this? Ive got about 6 weeks to wait for the next shot. Any info would be greatly appreciated. BTW for me this drug has been a game changer. Up to this last week or so I have felt like myself again after years of struggling. Its been fantastic. Hear from you.
Hi Judy, is there an official Ocrevus advice number you can call? I thought a close monitoring of Ocrevus cases is set up to enable tweaks and adjustments. Hopefully, you won’t have to return to where you were before first treatment. I sincerely hope you find relief soon.
Your post Intrigued me for my own adventure into the first ever medication to slow or stop progression. My new MS nurse has started the ball rolling to see if I quality for the Ocrevus new drug. I can walk the requred distance, diagnosed MS Nov.2011 (less than 15 yrs) and in late Sept I had a head MRI, Spinal MRI and then the same with contrast. The results arrived just before New Year and I have an appt with my MS Nurse on 14th Feb.
I’m assuming this will be to arrange a full assessment by the newly appointed Ocrevus Consultant and then make an informed choice. Would you mind sharing your experience of obtain Ocrevus from the beginning, and timescales from MRIs to the first intravenous treatment?
Meanwhile, good luck in finding some answers.
Chrissie x
Hi judy 01, i had my first two half infusions march 2019 and first full dose Sept 2019 and have next booked for 11th march.
I felt really well for weeks after last infusion but for the last few weeks I have become gradually and generally unwell.Over the last week I have been very unwell and even seen by MS nurse on Tuesday this week.I had awful headaches ,brain zaps which i can only describe as frightening (which I havnt experienced before).My anxiety has increased again and my usual old symtoms (pins and needles,discomfort in legs and hands/bowel/bladder ) have been more problematic.
I really worry sometimes about possible PML
Im hoping that I will notice improvement after next infusion although being less stressed is also the key.
Where are you having your Ocrevus?
Hi Kerste, apologies for taking so long to reply. For some reason I didnt get the notification that I had received your reply.
Interesting to me, though Im sure not to you as you are uncomfortable,but that you are getting some old symptoms and new ones. I am due on 11th March also but due to family commitments was hoping to postpone the infusion but it is getting increasingly more obvious on a daily basis that I dont think this is going to happen. My walking has gone downhill with my right leg dragging whereas after the first infusion this all but disappeared. It was heaven. Mentally I feel Ive slowed but that could be to the Lyrica and Baclofen I have to take to keep the symptoms at bay. Not sure what to do at all.
The PML I believe is extremely rare. How are you doing now? Im based in Plymouth.
Judy
Hi
I had my 2nd full infusion after six months in december
and from January this year it has got better and better.
Similiar story to you after first infusion. It has been a real
game changer for me too. MS for 20 years. Been on rebif.
Copaxone, and gilenya. Last three years went downhill .
ocrelizumab has been great after hitting a brick wall.
It
Hi mwallace42 I’m now all set up for 11th March and took great comfort from your post so thank you. The mind plays tricks and I’ve started to wonder if my first full infusion will work as well as the first Ocrevus split infusion I had last year. But after reading your post to put it mildly ‘I can’t wait’. The first infusion for me was so positive physically and mentally so we are lucky to be fortunate that it’s doing something. I hope you are still doing well
judy
Hi judy
Thats great. All the best for Wednesday. I hope it gives you
quality of life back. I am doing so good . Life changing drug so
far. Keep fighting.