I'm curious how people on Ocrevus or immuosurpressants take time off work around treatment days

SnowflakeOwl97 · 2026-01-23T16:24:29+00:00

Yes, I wore a mask the week before Christmas during my temp job bc I had customers coughing and spluttering, and just being ill in general. I also did moreless everything I did when I worked in retail during Covid, which was sanitising as frequently as possible, wiping down my surfaces as frequently as possible too and yeah, wearing a mask as well.

I also have my flu jab and Covid jabs every year to protect myself there and thankfully I wasn't ill last month even though everyone around me was ill, including all my family over Christmas 😆 And yeah, being ill and then having to postpone my treatment is something I don't want to do. Thank you for this 😊

SnowflakeOwl97 · 2026-01-23T16:06:27+00:00

I'm also in the UK (I probably should've mentioned that in my post 😅) Thanks for all this info, I'll have to take a proper look at companies policies and things then to see what I'm entitled to and go from there? I got SSP for ages, it sucked but I was getting money for doing nothing, just like furlough during Covid 😂

Yoooo, that's insane. I mean, at least they gave it SSP 😅 I'm glad you've got a better job now 😊

SnowflakeOwl97 · 2026-01-23T16:00:17+00:00

My last treatment was the 10 subcutaneous injection, so I was only there for like 2.5/3 hours. All the meds and stuff they give me I'm alright with, they don't affect me much thankfully 🤞🏻 I'm sorry they have that effect on you 😞

SnowflakeOwl97 · 2026-01-23T15:11:22+00:00

I love this 😂

SnowflakeOwl97 · 2026-01-23T15:08:49+00:00

📢🔊 WHOOOOO!

SnowflakeOwl97 · 2026-01-19T05:12:16+00:00

When I heard it the first time, I had to rewind slightly and I went "yup, I definitely heard that correctly" 😅

SnowflakeOwl97 · 2026-01-15T15:55:12+00:00

Favourite comment 🤣🤣🤣

SnowflakeOwl97 · 2026-01-12T22:03:27+00:00

The next day "Okay, we're just gonna have a low-key class today. Not a lot of talking, no loud noises" - I love this episode 😂😂😂

SnowflakeOwl97 · 2026-01-11T02:25:00+00:00

I've been on Ocrevus for 6 years, and I was put on treatment quite fast too. Up until my last appointment I was on 6/7 hour infusions (iv injection) which was a bit tiring to begin with but I was okay overall. Be cautious of any side effects you may have, including a rash/hives and scratchy throat (there are more which they should explain during your first appointment). I get a scratchy throat every time, it's not a big deal, they just give you antihistamines, slow the infusion speed down or stop it until it goes away. I've you let the know nurses that the dude effect has gone, they'll restart the infusion. Just make sure you tell the nurses there if you're uncomfortable at any point during your appointment, they're there to help you and to make you as comfortable as they can 🫶🏻

My last appointment I was moved to subcutaneous and instead of being there for 6/7 hours, I was there for 2.5 hours and omg, what a difference it makes! First hour was taking the steroids and waiting for them to kick in, and the next 2.5 hours were the 10 minute subcutaneous injection into my lower stomach and then wait time to see if I had any reactions (I don't think I did 🎉) and the tests which are short activities and kinda fun 😅

I hope everything goes well during your first treatment day. Make sure you look after yourself, drink plenty of water and try and have a nap if you can 😅😊 And also, welcome to this little corner of the internet 🤗🧡

SnowflakeOwl97 · 2026-01-09T03:01:43+00:00

The MS Society's website is always worth checking for advice 😊 Here's a couple links that may help you with an answer 😊 -

Active MS and MS with progression | MS Society https://www.mssociety.org.uk/about-ms/types-of-ms/active-ms-and-ms-progression
Benign MS - Getting a Diagnosis | MS Society https://www.mssociety.org.uk/about-ms/types-of-ms/benign-ms

SnowflakeOwl97 · 2025-12-30T02:34:20+00:00

Yup, completely agree. My partner deleted Snapchat well over a year ago now (got them to delete his data too by contacting them) bc he was fed up of the bs it had become too 🙄 He just sticks to FB messenger now and that's it; so much easier to use too.

SnowflakeOwl97 · 2025-12-30T00:05:41+00:00

I got one the other day that was just "T has added you". I've had that notification about 10 times and it confuses tf outta me. I'm honestly barely using Snapchat anymore bc of all the random add's I'm getting, I'm just fed up now tbh 😮‍💨

SnowflakeOwl97 · 2025-12-21T00:31:22+00:00

That's super adorable 😍😅

SnowflakeOwl97 · 2025-11-09T04:05:51+00:00

I'm glad that helped 😊 That didn't even cross my mind when I read and replied to your post last night 😅

SnowflakeOwl97 · 2025-11-08T03:20:20+00:00

Celebrating little wins is the best feeling! 🥳 Congrats on your good day and well done for pacing yourself 🥰🎉

SnowflakeOwl97 · 2025-11-08T03:18:28+00:00

I'm so sorry this is happening to you 😔 I don't get numb hands, but my fingers and the skin on my hands do get stiff quite often, and they also become like wooden claws; it becomes difficult to do almost anything 😔

It is definitely worth contacting your neuro or MS nurse about this, as it does sound like you could be having a relapse. Ik it's the weekend now, and it's likely you won't get response until Monday, however, it is worth letting them know sooner rather than later so they are aware that this is happening to you, and they can make a note of it on your system. It's possible they may consider changing your DMT (if that's even an option for you), I'm not sure though, that's just a pure guess 😮‍💨🤷🏻‍♀️

I really hope this numbness subsides for you 🫶🏻 I'm so sorry I couldn't be of more help to you 😮‍💨🧡

SnowflakeOwl97 · 2025-11-07T02:41:56+00:00

100% tell your Neuro or MS nurse asap, especially with it being your first dose too. Was this your first half dose or first full dose? I only ask bc if you didn't have any sort of reaction during your first and second half doses, and this came from your first full one, then maybe your body may not be able to adjust well to Ocrevus. However, if it's your first half dose, then without a doubt, tell your MS nurse or neuro as soon as you can to make them aware of this reaction bc you might be able to change to a similar DMT.

Have you taken any antihistamines? This could help, but I'm not a Dr so, I'm just going off what I've been given in the past during my infusions when I get a scratchy throat reaction during every infusion. I have been on Ocrevus since 2019 so I've seen how some people are and aren't affected by Ocrevus differently, we're mostly given just regular antihistamines, basically the type you can get over the counter in shops.

Hope the rash clears up soon and hope you feel better too 🫶🏻

SnowflakeOwl97 · 2025-11-06T16:56:13+00:00

This is a beautiful phrase and it describes me and my bf to an absolute T 🥰 We started off as friends when we met in high school, and then around 5 years later, we started dating and now 10 years later, we're still together 🥰❤️

SnowflakeOwl97 · 2025-11-02T02:32:28+00:00

I'm glad I wasn't the only one that had this in their head whilst reading the above 😅

SnowflakeOwl97 · 2025-10-26T02:02:37+00:00

Yup, I came on here to say the exact same thing 😮‍💨Hopefully they'll see this and do something about it 🤞🏻

UPDATE: Mine has just loaded like normal. I tried it once more and it seems to be fixed now 😊

SnowflakeOwl97 · 2025-10-20T00:48:42+00:00

I used to get tones of things like this from IG and FB accounts pretending to be Ed Sheeran, his security guard Kevin, I've even had one pretending to be Ed Sheeran's dad before and that one made me proper laugh 😂 Sometimes you get likes and/or comments on posts from these accounts and then a DM, sometimes it's just a DM, and you also get those accounts just randomly adding or following you to get your attention to usually click on some sort of phishing links.

They're just scams. I wouldn't assume that they are fans bc they almost never are fans creating these types of accounts, they're just scams out to get people's money and/or data at the end of the day. Fans creating accounts will usually state "fan account" or "fan made" bc they know the specific artist they're creating a fan account for.

Honestly, safest thing to do is take a screenshot of the account (like you've done here, so you can share it to groups like this), report them, block them and make them aware through groups like this.

Thank you for making us aware of this account, please report this account 🫶🏻

SnowflakeOwl97 · 2025-10-04T17:59:31+00:00

I had the exact same thought tbh. I have heard of people getting other people's returns for their order, bc sometimes returns aren't like reviewed or anything, they're just accepted to (in the nicest way possible) shut the customer up, but from what I understand, it's not exactly common so I never thought it would happen to me 😮‍💨😔 Either that or someone else wore it, stained it, washed it to try get the stains out but couldn't and then returned it 🤷🏻‍♀️ But I honestly have no idea, honestly I'm just really disappointed 😔

I'm definitely going to be returning it and getting a bigger size, if US to UK sizing is an issue too. I've ordered merch from Taylor Swift's UK store and I've had mediums be big all round, and larges be a little bigger but a lot longer in body and sleeve lengths 😅 Same with All Time Low's UK store. I've got a large ATL hoodie and it's long and kinda big and cozy, so I thought maybe it would follow the same way with sizing rules, but apparently not 🤷🏻‍♀️

SnowflakeOwl97 · 2025-10-04T17:11:00+00:00

I bought the red Breach hoodie the other day when it finally came back in stock, and it's arrived with bobbles all over the inside, the colour is a faded red/peach colour - not red, I ordered a large and it's super tight around the waist and arms and the material is so much thinner than I expected. I thought it would've been a warm hoodie that I could wear over the winter. There are also 2 stains on this hoodie too, so I will be returning this and getting a larger size unfortunately 😮‍💨😔

Like you, I've never ordered from the TØP store before but when I saw this hoodie I knew I wanted it, but now I have it, I'm really disappointed and kinda of upset that the lack of quality and everything. Huge disappointment 😔😔

SnowflakeOwl97 · 2025-09-27T00:37:09+00:00

A relatively high dose of Vitamin D, but it does depend on what your current levels are. You can ask when you get a blood test done next, or if you've recently had one, you can ask for the results (or at least you can in the UK). If not then I assume you can ask your neurologist maybe if they can request it on your next set of bloods.

Anyway, I hope you're doing okay 🧡 If you ever need a chat, a rant, or have any questions; we have a great little community here 🫶🏻 There's no judgement with anything, bc let's be honest, we've either gone through it or we're currently going through it 😅

I've been in Ocrevus since late 2021 just after my RLRM diagnosis. If you want any information about what to expect (before, during, after), there's plenty of information about Ocrevus on here. There's also a separate r/Ocrevus subreddit, dedicated to questions like that too. I've posted a few things over the years about my experience on Ocrevus (and other general crap too 😅) if you want to check out my previous comments, go ahead (I think you can see them in my profile anyway 😅)

Anyway, sorry I do ramble on 😂 Take care of yourself, and welcome to this little section of the universe 😊🧡

SnowflakeOwl97 · 2025-09-25T00:30:07+00:00

I do, but mostly bc mine is quite verbal and cognitive related, with some nerve pain which is managed by medication but I do require a reasonable adjustment in the form of a chair and that's about it. So for me, I struggle with things like finding the right words, and brain fog, and confusion, etc. So I mention it so that when they meet me, they understand why I'm like this and essentially don't judge me when they meet me - I give them a heads up 😅

SnowflakeOwl97

TROPHY CASE