@nobodyin

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nobodyin

Ocrevus and Covid 19

Hi all, was due to receive Ocrevus on April 6th but, in light of current situation have put it back to May. Having PPMS I can't afford too many delays any advice?

Vixen

@Vixen

Hi @nobodyin. Of course, this is a horrible time to be thinking about starting treatment, with all the chaos going on around us. But, is the delay from you, or the hospital team?

nobodyin

@nobodyin

MS nurse rang me to ask my opinion, think I will try to contact my specialist for her opinion/greater clarity. Was to be my second treatment 600ml in one go this time.

Mlgilber1

@Mlgilber1

Mine was supposed to be March 26th, but the infusion center called to say my neurologist has stopped all Ocrevus infusions. It would have been my third full dose. I’m really upset it’s being postponed.

kellzz

@kellzz

I am just completing the paperwork for Ocrevus and I have decided to not follow through yet because of this whole corona virus... Urg.. I have PPMS as well. It sucks. @Mlgilber1 what are the side effects like? Do you like the treatment??

Mlgilber1

@Mlgilber1

@kellzz I really like it so far. I’ve been on it two years and have had no new or active lesions. It’s even helped with some of my symptoms and I haven’t needed my walker since two months after starting. I was really fortunate that it’s helped my symptoms a lot. I rarely get nauseous now, don’t really have tremors or spasticity anymore, helped my cog fog, and better balance. I always get infusion reactions, but they’ve been minor like itchy ears or itchy scalp. Because I react it usually takes 7-9hours for my infusions. After the first two half doses my symptoms did flare for a little over a month, but then were better than before I started. It happens to some people, but not everyone. I haven’t had a flare up of symptoms post infusion since then. I will feel a little weak and rundown for a week post infusion, but then return to feeling pretty good. Also, about a month prior to my infusion my fatigue gets super bad and some symptoms will get a little worse. We like to call it the crap gap, but it doesn’t happen to everyone and the period of time you feel fatigued before the infusion does get shorter and better over time. I don’t feel that bad right now, but delaying my infusion for a couple months scares me. Thankfully my neuro did say he doesn’t want his patients going for too long without it so I’m hoping they can reschedule me first thing after April. It has been very different experiences for everyone though. I get sick less since I’ve been on it, but some get sick often since it lowers the immune system. Since it does lower it I did end up with a UTI and shingles after my first two half doses, but it hasn’t happened since. I’m part of an Ocrevus Facebook group and everyone gives a lot of great info if you’d like to join and check it out. Just search Ocrevus on FB and it’s the first group to come up. Good luck with whatever you choose to do!

JoJoK

@JoJoK

@kelzz I’m a step further behind you - waiting to be assigned an MS nurse and have (had?) NHS appointment for beginning of June for starting procedure of having Ocrevus. Haven’t even got as far as paperwork yet! Waiting to speak to neuro about whether or not to go ahead. Less than two weeks ago he was adamant that it would be fine... not so sure he’ll say the same now. Worried about immunosuppressant effects plus travelling into central London and to overrun hospital to get it (we live in rural Wiltshire). I’m very lucky that I ‘only’ have RRMS and it is pretty benign - reckon for me that the NHS has got more important priorities to deal with. I feel for you with what must be a much harder decision to make. Wish you the best of luck. Xx

DominicS

@DominicS

I'd swerve the whole Facebook thing. www.ms-selfie.com is a good source of credible, doctor lead advice. I am on Ocrelizumab too. It seems it is ok. Perhaps even beneficial!

DominicS

@DominicS

Folks, keep up with the science! - When nothing was known it was entirely reasonable to suspect there are DMT related risk increases. - Firstly: there is a rapidly growing body of evidence that people on DMTs are not faring any worse than 'regular' people. - Secondly: it appears that being on a DMT may even be beneficial as it is helping the body's immune system not to overreact and damage the lungs. - See these: https://youtu.be/6sjyx46UJ7I https://youtu.be/z4oPSlKK3eI www.ms-selfie.com https://youtu.be/_NpQOR7eXF8 https://youtu.be/eo_e-d2tJeg - There is a massive effort underway to ensure that infusions and blood tests etc can carry on as normal in relative safety.

Username

@Username

I've been on ocrelizumab since 2018. Unfortunately the infusion I was due to have this month, has been postponed until further notice.

ItsMewithMS

@ItsMewithMS

Thanks Dominics for stepping in and for the posts. These are certainly times where the recommendations change by the hour. I'm due for my first full infusion (so third Ocrevus infusion) on April 15th...then they called to move it but thankfully to just the 16th. Hopefully that holds. I get my infusions at my Neuros office that has it's own infusion center. Hopefully the site doesn't get taken over or the staff to help manage health care at other centers or the equipment isn't needed by other sites deemed more critical. Hope I stay on track. Report this morning of more cases locally and one is a high school girl that recently took a spring break trip to Atlanta, Georgia with her choir. As this would have been in a bus packed with other high school students for like 24 hours I'd expect more cases to arise from that and their family. Still under control here but seeing the typical doubling of cases every couple of days.

nobodyin

@nobodyin

Am awaiting advice from my specialist as to how much difference to MS progression a delay in Ocrevus would make. Also awaiting a blood test to check my lymphocyte count. Thanks for all the info.

nobodyin

@nobodyin

May the 4th the new D-day for me, followed by 12 weeks isolation, may have to get out of the house though had enough already, shouldn't have delayed.

Will_Middlemoore

@Will_Middlemoore

I had my second half infusion on the 23rd of March and have been feeling great so far. I was only diagnosed with RRMS in December but had two relapses in quick succession and very active symptoms, hence my doctor's eagerness to get me on Ocrovus despite Covid-19. I was given the choice but I'm glad I chose to go through with it personally. I don't know how good my recovery was GOING to be (maybe the same) but I have regained pretty much all my movement and have started regularly working out and living my life fairly normally (epidemic withstanding) with Ocrovus. I've heard that it can be deemed safer than first expected due to the fact that it goes after B Cells, not T Cells (the cells used to fight viruses like Covid-19). I'd back everything Dominic has said and posted as well. Good luck with it and I hope you make the right decision for you 👍😊

EdmontonAlberta

@EdmontonAlberta

@kellzz Do this as soon as possible; you have nothing to lose. I completed my first two 1/2 dosages six months ago. Had my 3rd (?) drip this week. The first drips had a slight improvement; been walking (pushing my limits) since Tuesday. No challenges; other than the usual bladder problems, I am comfortable with the results.

ItsMewithMS

@ItsMewithMS

As a follow-up I did receive my first full infusion this last Thursday. They did change the location as my regular clinic is shut down and therefore shifted the infusion one day. As I wasn't in a dedicated room but using an infusion bay with a recliner type chair surrounded by a privacy curtain they requested that I wear the mask I had worn in throughout the entire infusion. Thankfully we had a few N95 masks in our shop for woodworking projects and have been using them. It was a bit uncomfortable to wear it through the entire infusion and they said I could sneak snacks under it to survive the ordeal ;-) I definitely now feel for those that need to wear masks all day, every day at this point- After the first two half doses I felt an upswing within a couple weeks of receiving the infusion so am hopeful this will happen again. At this point I am still recovering from the infusion as the night after the infusion I, again, had a night of very limited sleep and then the next night made up for it with 9 hours of sleep! I feel a bit crampy and out of sorts but will go and stretch and so something active (like ride my stationary bike or some yoga) to shake it off. My neuro said I could delay my treatment for one month but I decided to go ahead as our area currently has very few Covid-19 cases but just to our East is Milwaukee with many cases, to the south is Madison with some as well as to our west is the Twin Cities which is a larger metropolis with some activity. I will be able to self-isolate in my home for a few weeks as we are adequately stocked. I actually expect our area may see more cases in another month and as people are starting to resist the isolation and anxious about the loss of income and contact I think delaying would have not been the right decision- So- fingers crossed I made the right decision and, as @Dominics points out the interviews with the experts and experience seems to show the impact on the B cells and not the T Cells, which is what Ocrevus does, may actually be to our benefit if we are impacted. At this point I'm trying not to ;-)

DominicS

@DominicS

Be strong. Wear a seatbelt ;)

nobodyin

@nobodyin

Asked to have it sooner but, got infused today. Another should have to go on the list.

Vixen

@Vixen

Phew, nice once, take it easy now.....