I recently had my first Ocrevus infusion and must say was not too bad in terms of effects. I got a hot flush once but was very short lived. The nurses at the Southampton Victoria House Infusion Centre was amazing to say the least. It was a long day started about 9 am got out around 3:30 pm but you start on the slower speed at first so will take a while. I would suggest try having your infusion in your non dominate arm since the machine tends to not like you moving the arm you are having the infusion in too much. After it was done I felt a little tried but other than that I feel ok so far.
So a good start to the treatment hopefully will stay that way. Remember to pack a good lot of snacks if its your first treatment and a bottle or 2 of drink. Also something to do like read a book, a tablet to watch stuff etc.
That’s good to hear. Now the drug gets to work to keep you well. The high-efficiency drugs really can stop even very active RRMS in its tracks. That is what Tysabri has done for me this past decade, and I hope that Ocrevus does the same for you.
Glad you had a good experience.
I’ve had my first two (first dose split, a couple of weeks apart) and particularly enjoyed the pre-med steroid they give you.
A couple of days of better movement and less pain before the normal discomfort returned. Sadly, they won’t give long-term steroids because of other not-so-good side-effects. It was definitely the pre-meds too - I’d been on a clinical trial which involved giving those pre-meds, but not the ocrelizumab.
Nice that things are working out well for you! Starting a new medicine is always a little scar isn’t it? I hope it’ll keep doing wonders for you.
I’ve been considering myself whether to swap from Gilenya to Ocrevus or Kesimpta. I find it hard to figure out if one is more effective than the other. The research I could find does not all seem to point in the same direction.
They’re both all about wiping out b cells, but seems ocrevus is faster and stronger due to the higher dosage, leading it to also wipe out sneaky b cells already in the brain that are otherwise hard to reach, or something like that. On the other hand Kesimpta is inserted under the skin rather than straight into the veins, and so heads somewhere I cannot remember faster and thus apparently leaves some particular b cells that are very necessary for maintaining even a little power against infections alive.
It sounds like my doctor wants my next medicine, if needed, to be Kesimpta, and some particular study I read did list it as having slightly better results under certain circumstances, and well they basically both have excellent results for the suppression of attacks so I don’t suppose I really need to worry that much, but lately I’ve been made to worry about smoldering and long long term loss of brain mass due to having had lots of very large wounds without much symptoms and my doctor warning me that there’s a limit to how long the brain can compensate, as well as a feeling of a constant small attack happening over months, and so I have been trying pretty hard to find all the data I could on the matter.
Ah got the same choices I did main Kesimpta was kind of a no no for me from the start as always had a slight fear of the sight of needles and was unsure if I could self inject. Gilenya was considering but I know sounds vein of me but the side effect of possible hair loss kind of spooked me. Ocrevus while is a pain in the butt because it takes 6-7 hours for the first 2 half doses you have (2nd dose is 2 weeks after your first) since you start on the slow rate. But from the people there getting treatment too it goes down to 3-4 every 6 months when you on the high rate. After I did feel a little wiped out of energy but that seems to have gone after a few days.
Oh I hadn’t heard of Gilenya hair loss! I hope I can avoid that…nothing so far after one year at least.
Ah yes I too have been concerned about whether I can really manage self-injecting, but seems to basically be a small tube where the needle doesn’t actually come out until actual injection so thought I might be able to handle it. I will admit to only having to worry about medicine once every half year after that initial bit of work being quite appealing to me though. Our fridge as is normal in Japan only cools down to 10 degrees which I believe isn’t enough for Kesimpta so worrying a bit if I can even store it.
My doctor has only mentioned Kesimpta though so seems he’d prefer that. Not sure Ocrevus is available at all in Japan either.
Well, either which way no switches until I have obvious activity it seems. Last couple of times the doctor has said it was just old wounds acting up, though I keep trying to explain the area of prickling has increased from just the corner of my lips to like half my face. He seems to think I am just too stressed and worried in general. Hopefully the scheduled MRI in a week will show some proof.
Ive just started at Victoria House, might see you there one day. Been on Ocrevus for a couple of years, but recently moved into the area.
When they are able to speed it up, it will be a much shorter day!
Ah yeah I hope to be in one of the fast rate chairs at some point as being sat in the slow rate chair for 7 hours is a adventure of keeping yourself amused. But the nurses could put up with my cheeky attitude which is a plus XD All in all was a good experience just wish the taxi rank was a little closer since walking is a little tricky for me.