Hi, I have apparently had PPMS longer than I thought due to neurologists not communicating effectively with me or at all. I have recently been approved to receive Ocrevus treatment, but it looks like there are more cons than pros to it with a relatively low success rate. As I have few symptoms mainly centred around a weaker right leg and ankle, the MS is not causing me too many problems. I would appreciate any advice from anyone with PPMS who has had experience of Ocrevus and what their opinions are.
Hi, I’m not on Ocrevus as I don’t fit the criteria for it now but 6years ago I would have because believe it or not I was walking fine and working in construction but now am bedbound and occasionally move in a motorised wheelchair. I don’t know the cons apart from a Google search but even so I would jump at the chance even though it might only positive thinking Good luck
Hi I am on Ocrevus and personally do not notice a difference but my neurologist does on my MRIs. No new or enhancing lesions.
I’m sorry to hear that and I am definitely more positive about the treatment after meeting with an MS Nurse. PPMS is so variable and difficult to think objectively about, so I’m still finding out more information.
Thanks for your reply, have you had any adverse reactions to Ocrevus? I had an interesting meeting with an MS Nurse last week which helped clarify some facts for me, but I’m still a bit concerned about side effects and the impact on your immune system.
Hi Amber,
I’m PPMS and I’ve been put on Ocrevus. Firstly obviously your nuro is the only one qualified to say. That said, I’ll say that what gets me through is my saying that “It’s the best time ever to have MS.” which is because of things like Ocrevus.
Prior to that and I think I was one of the earlier ones to get it (it’s really has just started to be used for PPMS) there was nothing just the inevitable decline.
The main idea to to slow progression which I’m sure you’ll know for me it has actually improved things just slightly but that slightly means being more confident doing little walks and so on. It’s also early to say how it will go. Since I’ve been on it there hasn’t been progression.
Personally, I’m not medical and everyone has their own thoughts, but I’d strongly suggest earlier is better. Just get on it.
It has taken time to accept my MS is a real thing, but it really is now. The next is that PPMS only goes one way. So for me Ocrevus is a beautiful gift that I’m very grateful to get because it gives me a chance when there aren’t any other really .
Again your Nuros who to speak to but for me its a no brainer and I’d be petrified if I had to come off it.
Experience wise the infusions are basically just a chill out day away from work. Lately maybe a few more infections/colds etc but to me at least that’s nothing for even a chance to slow things down. So from what I’ve experienced all very positive.
Not to scare you or anything everyone is different but for me the point is to try to keep as much as you have for as long as you can.
Best wishes,
Andrew
1 Like
I have not had any side effects at all. Guilt free way of spending a day
Thanks, I’m in the process of changing my neuro as my original one was just rude and didn’t listen. I also have to consider which times of year would be best due to my job. The MS nurse said I should think about it and let her know, but I’m thinking of starting in Feb when I’ve got enough time to be off work to start and unwell if affected. There has been a near total lack of communication and information from the hospital over the past few years and as I haven’t noticed anything until very recently, it’s still new to me. I do definitely want to stop the MS and Ocrevus appears to be the way forward. It’s good to hear it has worked for you and hope it continues to do so.
Thanks for the help
Hi Amber
I’ve had my first ocrelizumab infusion and no ill-effects at all.
Don’t delay, get on it ASAP. The approval process takes time, then they have to find you an infusion slot, so you have very little chance of picking a date to suit lifestyle. Besides, once up & running, it’s one day every 6 months.
Consider also a clinical trial (phase 3) of one of the -brutinibs (BTK inhibitors). Running now, some are still taking on candidates. In tablet form rather than infusion, it’s more convenient but a lot of supporting visits for tests. One downside is a % of subjects develop a liver toxicity though otherwise they are potentially more targeted than ocrelizumab. I developed the liver toxicity so had to stop the trial but as said at the top, am now on ocrelizumab.
Graeme
1 Like