Last reply 3 weeks ago
1st Ocrelizumab / Ocrevus experience

Hi, just thought I’d share my experience of my 1st half doze from earlier today in order that someone else may get some use from it. 1st half doze completed today in Glasgow. So far, so good. I got out about 330pm. I was given lots of advice by lots of people. Seems to have worked well. Few sweets, packed lunch, lots and lots of water, phone for music and netflix…with obs done every half hour it has fairly flown by. Hope this helps more 1st timers in the future. Feel free to contact me if you want any more details of my 1st experience of Ocrelizumab/Ocrevus. Thanks, hope you’re all well, take care and have a great evening. Steven.

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newbie
1 month ago

Hi @stevenh67, pleased to hear your 1st dose went well. I had pretty much the same experience and I had my 2nd dose yesterday. If anything slightly better with second dose (apart from a slightly awkward half hour of drinking water as couldn’t provide a urine sample on demand) as with the first dose I itched like mad and came out in a rash that gave me extra antihistamine for – second dose no adverse effect.

My only issue has been night time hot flushes – but no idea if the is Ocrevus, the steroid they give with it – or just the weather!

All the best for your second dose too


stevenh67
1 month ago

Hi @newbie…lol…had slightly similar issue with sample this morning. Wasn’t aware they’d request one qnd I’m of an age I need to time my drinks lol. Glad 2nd doze a bit better for you. Sometimes its hard to tell what’s MS, non MS or temperature related problems isn’t it. Frustrating. Thanks for the well wishes. Hope you keep as well as possible.


vixen
1 month ago

Hi @stevenh67, great stuff. Make sure you take it easy for a few days and keep drinking plenty. Your profile says you were on Tecfidera; did that not work out and you switched to Ocrevus?


watsoncraig
1 month ago

Hi @stevenh67 Glad it went well. I have just had my first full dose over in Falkirk, smoothly I may add. A sample @newbie and @stevenh67 not a request made of me


stevenh67
1 month ago

Hi @vixen back to work today, didn’t sleep much last night so thankfullyI don’t start until 1pm, will do the best I can there and be careful. Thanks for the tip re water. Will make sure I do that. As for Tecfidera it reduced my lymphocytes to 0.4, took 8 months to get them back to a level that I could start on Ocrelizumab yesterday. @watsoncraig glad you had a smooth full doze in Falkirk.


tonyms47
1 month ago

This is good news to me. I’m going to have my first half dosage on 17 August. So reading your experiences is comforting. Thank you.


stevenh67
1 month ago

@tonyms47 hope it goes as well for you as it has so far for me. All the best.


ralee
1 month ago

Glad it’s gone well for you. I’m hoping to start Ocrevus in the not to distant future as the hospital have started again. I was put on Tec as a stop gap.


stevenh67
1 month ago

Thanks @ralee hope you get on well with Tec and you get on Ocrevus as soon as you can if that is your preferred option.


hollylb10
1 month ago

How long did the first dose take? I am due mine in a few weeks x


peter_bishop
1 month ago

Thanks for the info. I’ve got my blood tests on the morning to check I’m OK to have my first infusion. With all the restrictions on hospitals we’re you allowed to have anyone with you.


stevenh67
3 weeks ago

@hollylb10 first half doze took from 9am to about 530pm in total. 2nd half was from 12-5pm.

@peter_bishop no-one else in with me. Had room to myself for 1st half, shared ward for 2nd half.

Sorry for delayed reply…been working lots and not been on here much. Hope it all goes well for you both.

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