@Bing15

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Bing15

Ocrevus first infusion

Had my first infusion of ocrevus today, all went really well until the last 10 mins when I developed a rash on my face, they immediately stopped the drip and abandoned the last drop and gave me extra antihistamines, 3 hours later I’m home and seem fine, fingers crossed I can continue with my second round in 2 weeks time 🤞🏼 I know rashes can be a common thing as long as they are controllable I’ll be wanting to continue 💪🏼. Hope everyone is doing ok.

Mlgilber1

@Mlgilber1

I got a rash during the first half, but not the second. Then, during my first full I got itchiness in my ears.

Bing15

@Bing15

@mlgiber1 and they were happy for you to continue with yours? I have heard a few people mention they got a rash, hopefully it’s all manageable 🤞🏼 X

Mlgilber1

@Mlgilber1

They were fine with me continuing. I even know a couple people that have pretty bad more serious reactions the whole time, but they still continue their neuro just keeps the infusion rate slow the entire time so the infusion usually will take 9 hours instead but that’s rare.

Ripple

@Ripple

@bing15 that's great to hear it allwent ok for you. I am hoping to be considered for Ocrevus soon. How are you doing now?

Bing15

@Bing15

@ripple im doing ok, the steroids always seem to cause a bit of swelling to my knees but nothing bad 👍🏻.

DominicS

@DominicS

@bing15 - my first full hit (I had the 300x300 split first dose in Jan) is due next week. It seems that infusion reactions are not that uncommon. The you G woman beside me the first time had a coughing fit so they stopped for an hour then reduced the flow rate and she was fine. I wld not be surprised if I felt a bit odd at times with the first single hit. Still, beats the hell out of leavi G MS untreated. Still, the highest risk part of my day will be driving to and from the hospital, not taking Ocrelizumab. Glad to hear you are doing OK. Stick at it.

Bing15

@Bing15

@dominics I will do, and good to hear you think ive made the right decision, I know we are all different but so far this is totally manageable 🤞🏼

DominicS

@DominicS

@bing15 - forget me! The research says that treating it aggressively from the get-go improves your long term prognosis. When I started there were nothing bar steroids for relapses. I got Interferon, Copaxone, Tecfidera and now Ocrevus. 20/20 hindsight is a wonderful thing!

Highlander

@Highlander

@dominics Why's your hindsight dropped by ten in one minute, I'd go to spec savers if I were you 😀   <span style="color: #ff0000;">PS Sorry @highlander , I just removed @dominics ' duplicate post, which makes your post seem strange - Admin (Stumbler)</span>

Bing15

@Bing15

@dominics well thanks for your input and good luck with your full dose 💪🏼 I’m back in this Thursday for my next hit 💉

Ripple

@Ripple

Good luck and I hope it goes well. I agree positively that hopefully this gives us all our best fighting chance of stopping further progression

Bing15

@Bing15

@ripple thank you 😊 and good luck with your choice of medication too, keep in touch.

Ripple

@Ripple

@bing15 thank you. Out of interest how much time are you taking out of work following your Ocrevus infusions? (I'm guessing maybe people would need a bit longer away from people / workplaces during the 'cold/flu' seasons)

Bing15

@Bing15

@ripple unfortunately due to the nature of my work I haven’t been in since my relapse as I wouldn’t be able to be on my feet all day, may have to look for a sitting down job soon, hate doing nothing but it’s been unavoidable so far.

Ripple

@Ripple

@bing15 so sorry to hear that, I can imagine it must be frustrating. I have a sit-down job but it's very full-on. I've been working full time hours 9-6 until recently. I had two relapses within six months and the cog-fog / numbing late afternoon fatigue was causing me real problems later in the day so I've now reduced my hours to a 4pm finish time to see if it helps manage / juggle things a bit more easily. I hope things ease up for you soon following your relapse and fingers crossed you can find something work wise which would work for you round things

Bing15

@Bing15

@ripple thank you and good luck with your work hope get the balance you need to cope.