RItuximab & Work

[Mish-da]

Hello all

I’m wondering if anyone has any advice on the following please.....?

Has anyone been on Rituximab and is a health care worker in the community. I’m a CPN.

I’ve just had my 2nd infusion, for vasculitis feeling pretty wiped out today with aches & chills. I’m off sick at the moment and plan to contact GP for a certificate.

Am I being a whus or should I be thinking about going back to work? I have the option of virtual working (from home) as I did during summer but it remained very stressful not helped by the fact I still wasn’t feeling great & I don’t want this impacting on potential effectiveness of this treatment.

I’ve been feeling rough for much of the year & was off sick for a number of months up until the summer.. struggling on.

I’ve had little benefits from previous DMRDS and desperate to feel better for the new year.

I would love to hear others that have or are in similar situations, or anyone’s opinions tbh. Feeling a bit worried & isolated with all this.

Thank you

Mish

[Boxerlady]

I'm not in your situation but if you're able to be signed off sick without losing income, I'd do that if I were you.

You're likely to be fit for work sooner if you take time off now and stay as stress-free as possible while waiting for your medication to work. As we all know, autoimmune diseases thrive on stress.

[mrsb]

Does this cast any light? gov.uk/government/publicati...

[Neonkittie17]

I have Rtx for RA and for quite a few weeks after I feel wiped out. I hope there’s a way for you to take some time off from work.

[Mish-da in reply to Neonkittie17]

Thanks for the heads up Neonkittle. I may well take time off then. Wasn’t sure if it was common for people to take time off after Rituximab

[AgedCrone]

Only The clinician who prescribed the Rtx infusions can tell you how vulnerable you would be if you continue to work.

Most GPs don’t have much knowledge of biologic infusions.

I have been having rituximab infusions for four years for RA & fortunately I don’t have any side-effects except feeling a bit tired the day after infusion.

Do call your rheumy/ Biologics nurse if you have one...... or contact your consultant’s secretary.

[Mish-da in reply to AgedCrone]

Thanks AgedCrone.

I’m guessing everyone is different in terms of experiences/side effects! I’m generally pretty sensitive to most meds & feel pretty rough today but only had 2nd infusion yesterday.

Just had email regarding shielding advice for us in extremely vulnerable category which I plan to adhere to.

[AgedCrone in reply to Mish-da]

Yes I got one or two of those letters today.....it’s sensible to work from home if you need to. I’m retired & my consultant doesn’t think I need to do any more than I have been doing all year....just taking all sensible precautions for an oldie.

I do hope your infusions kick in soon...once mine took hold it was night & day...& 95% of the time I feel well.

[Mish-da in reply to AgedCrone]

That’s great to hear Oldie 😉 take care

[Hidden]

Hi mish

No you are not being a wus. Ritux made me feel awful, wiped out for a week after the first infusion. I was on it 11 years (16 cycles).

Hope it helps you.

Kiki

[AgedCrone in reply to Hidden]

Are you saying you felt ill on Rtx for 11 years .....or just after the first infusion?

[Hidden in reply to AgedCrone]

Just after first infusion!

[Mish-da in reply to Hidden]

Thank the Lord!!

[StormySeas in reply to Mish-da]

That little exchange made me laugh! I think it’s very common to feel wiped out after RTX. After the steroid wears off I usually feel exhausted and as others have said, I think it’s important to take it easy if you feel you need to, and it sounds like you should. Don’t push it at first, and then start taking on more and see how you feel.

Maybe a week off and then see how you feel about remote working? It’s early days yet but long term, if RTX works, you should feel a lot better X

[Mish-da in reply to StormySeas]

Thanks stormyseas. Maybe I’m struggling a bit more because my vasculitis wasn’t under control before starting the infusions. I believe it can take a few weeks before you feel some benefits so yes having woken this morning I’ve decided to take the time I need to recover & speak with the GP. Enough of feeling guilty!!