@StevenH67

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StevenH67

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.

newbie

@newbie

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

@StevenH67

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

@Vixen

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

@watsoncraig

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

@StevenH67

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

@TonyMS47

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

@StevenH67

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

Ralee

@Ralee

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

@StevenH67

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

@hollylb10

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

Peter_Bishop

@Peter_Bishop

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

@StevenH67

@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.

Galina

@Galina

Hi @StevenH67 , big Thank you for sharing experiences. I am going to get my first dose of Ocrevus in a short time. Was diagnosed 2 years ago for PPMS. Mild symptomes, working fulltime, living active live. Neuro wanted to follow dynamic thats why decision about Ocrevus took so long time. A lot of lesions in brain and spine but the same mild symptoms. And I hoped that consilium would decide - no DMT is needed. But their strong recommendation is to start with Ocrevus. Do thank you for all advises - a lot of water, Netflix, lunch...The first infusion will take 4 hours, I was told. Have you been advised to shelter after infusions? Could you go to work the day after? How the second infusion worked? Hope you are well! Stay strong!

StevenH67

@StevenH67

Hi @Galina I haven't been advised to shield. I didn't take any time off work after 1st half dozes. Was okay at work the next day, drove myself home after 2nd half doze, but I don't recommend that. I had planned in some holidays for 1st full doze in early February but I'm off sick just now anyway, week 17 and counting, the joys. Let me know if there is anything else I can tell you. Take care and stay safe. Thanks.

1

Galina

@Galina

@StevenH67 @DominicS Thank you! Will post updates after infusion. Take care!

DominicS

@DominicS

@Galina - I have had 6 infusions now. They are a complete non-event and nothing to worry about. You'll be good.

1

Galina

@Galina

Thank you @DominiksS

liriel

@liriel

What time did you start?

StevenH67

@StevenH67

@liriel my appointment was for 12 noon.

StevenH67

@StevenH67

@liriel...sorry, appointment was for 9am, was thinking of my 1st full doze appointment that was for 12 noon. Apologies..🤦‍♂️

Lframe

@Lframe

Is this the only infusion that is 6 monthly? My mums has just been told she’s to start a twice yearly infusion we are very new to ms and all I could find was this infusion on good old google

StevenH67

@StevenH67

@Lframe, hi, not sure about all the other treatments, sorry. I'd suggest looking at the MS Trust website, I found that pretty useful when choosing my DMT. It gives you lots of information about the treatments available to us. I hope that helps somewhat and good luck to your mum as she goes through her MS journey.

Viljoca

@Viljoca

Hi @stevenh67 I’m new to this do not sure how to msg you so just replying in the post. I’m trying to decide DMT snd looking at Tecfidera snd Ocrevus. I see you have just started Ocrevus snd wondering how this is going snd any side effects you are experiencing? Thanks..

StevenH67

@StevenH67

Hi @Viljoca I've not really experienced any side effects on Ocrevus. I did have a few with Tecfidera. I find the process of getting Ocrevus pretty easy. Take plenty of water, food, snacks, something to read. Sit back and relax. Only had one full doze. But no dramas with it. Feel free to ask anything else and good luck with your decision and whatever DMT you choose.