Rituximab immunology: Morning all, I am on Rituximab... - NRAS

NRAS
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Rituximab immunology

Morning all,

I am on Rituximab and have been on it since 2009, I usually have infusions every 9 to 12 months. I am currently undergoing tests for another condition and in doing that they have established that my immune system has taken a battering. My IGM is <0.20 and my IGG is 5.79. My rheumatologist has requested I see her next wednesday and the letter states "we need to discuss alternative treatment options due to immunology concerns"

I am gutted and concerned, Rituximab has been a life saver for me. It's not invasive on my life, I work full time and it's perfect for that as I don't have to miss a large amount of work to have treatment.

I know I can't second guess what she is going to say to me and I'm sure I'm overthinking it but it's made me realise that our bodies are fickle things. Just suddenly they can decide nope, I'm not doing that today and nope I'm going to cause that med to react in this way.

Has anyone else been on Rituximab and had to change? If so what did you change to? I've been on infliximab and Humira previously.

Can someone just give me a slap and tell me to stop worrying haha 🤣🤣

8 Replies
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That's really gutting for you!

Have a look at the pages on current treatments on the NRAS website site, so that you can see what alternatives might be discussed at your next appointment.

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Thank you. There are so many more meds now than when I was diagnosed. I just need to stop stressing and go to the appointment with an open mind. I trust my rheumatologist.

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No slapping from me. I reckon you've got more than enough on your plate as it is. Second guessing what your rheumy will say is not useful, really, but (being an Olympic grade worriter and fretter) I can understand why you would. Be kind to yourself and do some research into alternatives and maybe indulge in some displacement activity. It's not too long to wait. Please tell us how you get on. Wishing you all the best

J

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Thank you. We do put ourselves through some stress don't we. I'm spending the weekend watching Dr Who ready for the new series starting as a distraction.

I trust my rheumatologist to make the right decision for me, she is amazing. This disease is good at keeping us on our toes isn't it haha xx

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NO SLAPS - Take HUGS instead.. xox and keep us posted - i had 1st infusion last monday xx

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See what rheumy suggests... No need to commit to anything on the spot. Do research on whatever meds she/he's considering for you... Then when you feel more comfortable give your rheumy your opinion/decision. Best wishes!!! Hopefully the next med will be just as effective for you, if not better🤙

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Hello,

Normal IGg levels range from 6.0-16.0 g/l and IGm levels from 0.5-2.0 g/l. For completeness IGa levels range from 0.8-4.0. So your IGg level is down though the IGm may be within normal limits.

I developed a condition called Rituximab induced hypogammaglobulinaemia three years ago having been on Rtx since 2008. Like you it proved to be the drug which greatly improved my quality of life. Unfortunately, the condition remained undiagnosed for 3 years, due to a hospital oversight. The abnormal immunoglobulin levels were missed. You can read full details of my history in previous posts.

Anyway, I am still on Rtx but now require treatment for my acquired condition which involves weekly subcutaneous injections of immunoglobulins. Not pleasant as the amount injected is 50 mls and has to be administered in three different sites in my tummy. This treatment is for life.

You can research the subject before you see your Rheumatologist and be well informed for the appointment. My advice is to discuss the situation with your Rheumatologist but if you do have this condition request a referral to an Immunologist as they are the experts and you deserve the best treatment options.

Hope Wednesday goes well and that they have caught this problem in time. Let me know how it goes. Will be thinking of you.

Best wishes Pam X

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Hey,

Sorry to hear that you have to have weekly injections, but if it means you can stay on these meds I guess it's worth it 😊

So I saw my rheumatologist and it isn't just my immune levels she is concerned about, my liver function is elevated, my kidney function is decreased, I'm aneamic and I'm showing high levels of inflammation 😂😂 she said I'm a walking picture of everything that she didn't want to see.

So we are stopping rituximab, I get married in October so she has said she will see me after then to discuss treatment options, but on the 12th of October she is seeing me again to give me a steroid shot in my knee and a general one in my butt to make sure in as comfortable as possible for the wedding which is lovely of her.

It's such a shame rituximab is my miracle drug, but thankfully there are so many more out there now so I'll be ok. I just need to keep going and things will sort themselves out I'm sure.

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