Why did my infusions get stopped?

[SwimmerBTC]

I’ve had several Rituximab infusions, usually every 9 months to a year apart; the last one was in 2021. In 2022 I was informed that Rituximab would be replaced by Rituxithon ( I hope that’s right) as its cheaper. I haven’t got a problem with this.

In March 2020, the week before lockdown, I went for an infusion but my rheumatologist briefly saw me to explain that she would not let this go ahead because of the uncertainty about Covid. I accepted this as nobody knew what was to occur.

Since then I’ve requested an infusion on 3 occasions but they’ve been refused. 2 of these occasions have been at a f2f with a specialist nurse the other was a telephone call I made to the helpline.

A long story but my question is does anyone have any insight into why I’ve been denied the infusions? I’m on 22.5mg methotrexate weekly injections, folic acid everyday apart from methotrexate day and sulfasalazine twice a day.

I’m seeing my rheumatologist in 4 weeks and I’d like to be prepared as I feel let down. My last blood tests show inflammation and my joints are very painful, worse than they’ve ever been. I feel I need an infusion.

Thanks for reading to the end of you’ve got this far!

[Amnesiac3637]

Sorry you’ve had problems but the only one who can tell you why you haven’t been offered an infusion is your rheumatologist. Presumably you’ve been having regular blood tests since you started on MTX and it may be that your disease is stable on both MTX and SSZ negating the need for Rituximab or its equivalent.

Only guessing the above but it would be better to wait for your appointment and write down and go armed with all the questions you won’t remember to ask when you get there! Best of luck.

[SwimmerBTC in reply to Amnesiac3637]

Thanks for your reply.

I do need to prepare myself for the appointment; it’s so easy to forget what one intended to ask when f2f with the rheumatologist! She is very good however it does take me a short while to tune into her accent and understand what she’s saying.

I’m disappointed that I haven’t had a f2f with her since pre Covid, apart from the 5 minutes explanation when she stopped my infusion just before it was about to happen. I’ve seen the specialist nurses who are but they haven’t had the answer to my question about infusions; just said that’s what rheumy said.

This appointment only came about because I contacted them in December. I was in the middle of traumatic dental work and I needed advice re pain management and what to do about methotrexate injections. The dentists (I’d seen 4 by this stage) had advised me to stop methotrexate as it would make the antibiotics less effective. I told the rheumy nurse that I hadn’t been seen for over a year; that the dentist informed me the RA was effecting my gums; and that I was becoming increasingly inflamed in my hands, feet and shoulders. I received an appointment in the post that week!

So I shall have questions written down. Thanks again for your advice.

[lala1958]

Hi SwimmerBTC

I was on Rituximab for a couple of years and my BP went thru the roof in addition to it not being so effective, I was getting it every 6 months then 2 weeks later, then 6 months wait again. It was not performing that well so I requested something else. Amnesiac 3637 is right, your Reumy is the with the power to say yes or no depending on your symptoms and blood work. I’m in Canada and I see mine every 6 months. If I have questions aka 2 biologics at once, will it harm me ? dental work etc I usually get a call from the girl that confirms the appointments, not even a nurse and she will relay a message from him. I feel your frustration, keep trying to get in for a face to face, write an email to them and be your own advocate as no one else will care more for you than yourself. Our healthcare system is terrible here but I’m not sure about the NHS. Btw I am on my last drug for RA. Humira every 10 days. Until they produce a new one that’s it’s for me. Good Luck and keep pressing on. You deserve to be treated well especially with the pain and inflammation you are going thru so go armed with your questions and write down her answers. Big hugs 🫂

[Jackie1947]

You say you were refused but did you not ask why?

[SwimmerBTC in reply to Jackie1947]

I was refused and despite asking I was just told that the rheumatologist refused and they did not know why. At the time I thought it may still be related to Covid so I did not push further.

[Bluegolf1975]

Hi

I’m not sure I can advise about the Rituximab infusions as I have never heard of them.

But as your Rheumatoid Arthritis is very active even with Sulfasalazine and Methoject

Then it may be worth asking about having a drug like Benepali which is a drug I take alongside my methoject to help control my symptoms. The combination of methotrexate injections and Benepali has been incredible for me. I hope this helps.

[Jackie1947 in reply to Bluegolf1975]

Benipali put my RA into remission. I still take Sulphazaline but that's all

[SwimmerBTC in reply to Bluegolf1975]

Thanks for that suggestion; I shall ask if it’s an option.

[Bluegolf1975]

I really hope it helps