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

[Main1234]

Hi

Being a CPN is stressful especially within the current climate of Covid.

You will also be classed as extremely clinically vulnerable I’m guessing.

You need to look after your health before you can begin to look after others.

As you work in the NHS you will be able to have an OH assessment and your pay will not be affected for the first 6 months.

Take care of yourself and keep safe .

[Mish-da in reply to Main1234]

Hi Main

Thanks for your reply. Yes your absolutely right...

Unfortunately I’ve had a lot of sick leave over the past year only returning to work in May. Now on half pay. But when you have illnesses like these there is nothing you can do, I know no amount of money is worth risking your health....Hopefully in a few weeks I will feel fit enough to return. ( I’d like to know others experiences post RTX treatment)

I’ve heard a lot of positives around Rituximab and am fortunate to have been given this treatment!

Got Occ health assessment next week.

Take care too 😊

[Main1234 in reply to Mish-da]

My OH had RTX 7 weeks ago he received 2 infusions 2 weeks apart after a relapse of his GPA.

I think we were looking for a quick fix but as someone else wrote its a slow burner!! He is also reducing his steroids and started on MMF from AZA.

He has been tired and has a nap in the afternoon , thank goodness he is retired tbh not sure if it’s the reduction on steroids that makes him tired or the change in medication it’s difficult to know really but on the second week after reducing steroids he is less tired. He uses now at 7.5mgs.

He was fine after the RTX again fatigued. Not sleeping as well as usual at night.

Are you able to work part time ? If you look at the link for RTX at the bottom of the messages people have very positive experiences and it seems to suit most people.

[PattyMPA]

I was only on Rituximab or Truxima and my doctors did not want me working with the public or my husband due to extra risk from COVID. So I moved my counseling practice home and now counsel virtually only and quite pleased with it. We get deliveries of what we need and barely go anywhere.

[AmyS1]

It is hard to have a rare illness as a CPN it takes a long time to recover. You might be best to have some more time off and then gradual return. Occ Health Dr was good for me.

[Mish-da in reply to AmyS1]

Yes it’s a tough job particularly during these difficult times never mind the illness Amy. What’s also hard is many people including friends haven’t even heard of it so can’t relate it to anything. Sometimes I feel my managers don’t see it as a serious illness which is frustrating too. Hopefully occ health will be supportive which I’m sure they will be.

[philtw]

Hi

I’ve had rituximab a number of times and only took the one day off work.

The day of the infusion

[Mish-da in reply to philtw]

Your very lucky... again a reflection on how every one responds differently.

[AmyS1]

There is info on the vasculitis website that may be helpful for employers and friends. Take some official info about the illness to your occ health remember that they may have never come across it before. Nb it took me a couple of years to really be in remission. It is hard rushing back to work doesn't always help. Make sure that you are having the best treatment etc.

[Mish-da in reply to AmyS1]

Good idea I will have a look at that😊

[Kafkaontheshore]

Hi ya,

I’m a community CNS. I was diagnosed with GCA mid September but been off work since mid August. Feel bad about it as only two of us in role locally. I am though wiped out by small tasks and my activity levels are way off my normal. Get very bad fatigue etc. Not on your drug just pred and methotrexate but being considered for tocilizumab as just had a flare.

My work supportive and I can go back on a phased return when I am ready. Hope it works out well for you 👍