My First Ocrevus Treatment

[hairbrain4]

It went pretty good today. I got there at 9:30 am and left at about 3 pm. I was hydrated so no problem with the needle. I didn't have any site reaction or any other reactions at all. It was almost as if they only gave me saline only for 4 1/2 hours. The worst part was having to sit in a recliner the whole time. I have lower back problems and it was causing my legs to hurt. Had to get up and walk around a bit a couple of times. The only thing I have noticed since I got home was, I haven't been able to sleep. I think I dozed off for about 30 minutes and that's it. I go back for part2 on the 25th.

[kdali]

Hooray! 🎉🎉🎉 I had issues with the extended sitting also.

[ssdw1958]

Good luck to you I have to set up an appointment for my yearly dose

[Peruzzot]

I hope they make you feel better. It's good to know they'll let you get up and walk around. For my iron infusions I just have to sit there. The first one I did took 8 hours. That was at the military hospital in Landstuhl. The ones I've had since then have been in a Hemotology clinic here in South Carolina. 2 sessions 1.5 hours each spread over 2 weeks. I like that a lot better.

[erash in reply to Peruzzot]

I’ve been to landstuhl (1979 dropping off patients 😉)

Are they giving you smaller doses or are u restarting the initial half doses in SC?

[Peruzzot in reply to erash]

Landstuhl just gave me 1 large dose to start. The clinic here in South Carolina uses a dosage that is split in half. The doc said that people tend to react better to the half dosages plus they don't have to spend the entire day sitting in the chair "bored to tears." He said that the half dosages could be infused faster than the large dose hence only 1.5 hours vs 4 hours.

When I first got the infusion my iron level was 4.1. The lowest level of normal is 12. After the infusion my iron level went up to 8. After I moved to South Carolina my iron levels were tested again. They dropped back down to 6. The best I've gotten up to so far is 10. We'll see how good or bad it is later this month when I get tested again.

[erash in reply to Peruzzot]

I assume the iron levels aren’t due to Ocrevus and that’s a separate issue you are being treated for..hopefully

[Peruzzot in reply to erash]

Has nothing to do with ocrevus. The doc is still trying to figure out why my body won't hold on to its iron.

[Midgey_Midge06]

So glad it went well. Hopefully u will be able to get some sleep soon 💜💜

[anaishunter]

You could try to ask them for a bed. Sometimes they have the option at infusion centers. In case it's more comfortable for your back.

The "high" might be from the steroids. I had that the day after.

[jimeka]

Even though you can’t sleep, rest. Your body has been through a lot today, so take it easy, glad it went well, blessings Jimeka 🦋 🍫

[greaterexp]

How wonderful!

[jkdavid99]

I had my first half today too. Just a little chest pressure but not enough to stop it. I had a lot of drugs today valium, Benadryl 50 mg advil, tylenol, steroids and ocrevus. Good job. We are on the way to better.

[erash]

So glad it all went well for you. Perhaps the insomnia is a temporary effect of the steroid premeds. Please let us know if that continues as others have identified insomnia post- Ocrevus too. P.S. what fun things did u do to pass the time during the infusion?

[hairbrain4 in reply to erash]

I'm pretty sure it was the steroids or as I call it "Wonderwoman Juice" because I slept last night. Today I feel pretty much back to normal leaning on the higher energy side. I took it easy yesterday even though I felt like I could move a mountain. I have had several Solumedral infusions & know the routine. The body wants to work but the brain doesn't because it hasn't rested.

[pamgarner]

the can't sleep comes from the steroids, I told my dr I could get addicted to them, I had soooo much energy, at 2am I could clean my house and yours!Glad your treatment was non eventful

[hairbrain4]

Yep! Been there done that a few times. Only thing is you pay a price if you go overboard even if you feel like you can. When you come down off the steroids, you crash big time because you wore your body out but didn't know it. At least that's what happened to me the first time if took steroids.