Rituximab and possible side effects: I am due to... - LUPUS UK

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Rituximab and possible side effects

Galaxy2 profile image
15 Replies

I am due to start my first rituximab infusions soon (four over four weeks) and although not great timing have the opportunity to start a job working at home around the same time. I have been not able to work for some time and am really considering the job because of my financial situation rather than because I feel well enough.

My concern is the timing and I would be really interested to hear how others have felt after their infusions and would I be mad to think about returning to work at the same time.

Thanks

Jenny

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Galaxy2 profile image
Galaxy2
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15 Replies
weathervane profile image
weathervane

Hi jenny , ive had 2 courses of rituximab now . The 1st I found quite difficult, i was very tired and i had severe gastritis which last 5 days . The second course was much easier , the drip was slowed down which may have helped and i was on a higher dose of omeprazole. It maybe be worth discussing this with the rheumy- although not everyone reacts the same way . I hope it goes well for you and your new job works out well 😀

Galaxy2 profile image
Galaxy2 in reply toweathervane

Thank you, I suppose it may be a case of waiting to see how I feel after the first one and yes you're right worth asking my rheumatologists opinion

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi Galaxy2 ,

Good luck with the rituximab infusions. I hope you find them helpful. Let us know how you get on.

Good luck with the new job too. Are your new employers aware that you have lupus? Have any special considerations or adjustments been made to help you manage better in the role? If you need more information about lupus and work, we have two booklets that you can read and download at lupusuk.org.uk/working-with.... If you need physical copies posted to you, please just send me a private message or email paul@lupusuk.org.uk with your name and address.

Galaxy2 profile image
Galaxy2 in reply toPaul_Howard

Thanks Paul, I will actually be self employed. I have been in the support group for esa for a long time and have been trying to get a job doing permitted work on limited hours to test myself and have found it so hard as soon as I mention my health problems I feel that employers don't want to know so I have concluded being self employed is my only option at the moment. I will be working from home too so hopefully will manage ok.

Thanks for the advice

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply toGalaxy2

It is still worth taking a look at the guides because organisations like Access to Work can still offer a lot of support for people who are self employed.

happytulip profile image
happytulip

Good luck x

Galaxy2 profile image
Galaxy2 in reply tohappytulip

Thanks Happytulip

weathervane profile image
weathervane in reply toGalaxy2

Best wishes for the job , let us know how the infusion and the job goes xx

EOLHPC profile image
EOLHPC

Wishing you every best wish. Please let us know how things go with ritux & work

🍀😘🍀😘 coco

Galaxy2 profile image
Galaxy2 in reply toEOLHPC

Will do, thanks coco

misty14 profile image
misty14

Good luck Jenny, hope you get on well with both. X

Galaxy2 profile image
Galaxy2 in reply tomisty14

Thank you x

Wenwen profile image
Wenwen

I had two infusions with rituximab. There are premed to help easy any reaction. Mild Headache was what I felt. However, I had shingles after about 3 weeks later.

As you know any immunosuppressive agent could trigger this. Shingles occurs when gets older or poor health condition. I had vaccine which may help thecshihles were last only about 10 days with antivirus drug.

Of course, you will have shingles only if you had chicken pot early in life.

Shilges are very painful and rashes normally appear on one site of the body. It is different from other rashes, See the doctor right way if it happen

Galaxy2 profile image
Galaxy2 in reply toWenwen

Thanks, Shingles and chicken pox have worried me for years ever since I have been on immunosuppressants, I have a teenage daughter who has never had chicken pox and every time it went around her primary school I was waiting with dread and adding to that I worked in a hospital and felt so exposed to infection. I think after these infusions I will be really careful where I go and be on alert.

Thanks

Wenwen profile image
Wenwen in reply toGalaxy2

Shingles are reactive of the chikenpox virus that in the body already. Contacting the discarches of shingles may cause another person to have chickenpox. It is always good idea to have vaccine for kids

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