Rituximab - 3 month wait list

clarebarber1

]Hi all!
I have just joined this forum looking for advice for my mum.
Over the last years my mother has had flare ups around this time of year and in each case has had to wait approx 3 months for a rituximab infusion.
The same has happened this year- she has been seen and the treatment approved- but the hospital is only treating 2 patients per month because of nursing shortages- and they are estimating February.
The last 2 Christmases were miserable as she was in so much pain.
Does anyone have advice about how to tackle this?

[Deleted User]

Hi Clare,

Welcome to the forum, it’s lovely to meet you.
Your mum is waiting for her rituximab infusion. These are given irregularly as needed. Have you told the rheumatologist team about your situation. They may be able to help your mum avoid this in the future by fine tuning when she starts through the process of requesting her next dose. Is there a possibility of going to a different hospital? What is she being given in the mean time to cope with the pain?

I feel for you, you must all dread this time of year, I wish we had some help to offer, it’s good that she has you to help. Here’s our information about rituximab

https://www.versusarthritis.org/about-arthritis/treatments/drugs/rituximab/

It seems that she needs it annually, there must be some way her rheumatoid team can get round this - at least for the future. There are strong painkillers that can be prescribed, I know they aren’t desirable but even if they offer a good nights sleep your mum will cope better during the day.

Please let us know how you get on, I’m sure there are many others stuck in this same situation as yourselves.

Yvonne x

Jackie47

Hi. Three months that’s not good at all. I would suggest ringing the Rhuemy helpline if you have one,hospital direct,badger your GP anything to try to bring this forward. Another option is to request a Depo Medrode steroid injection which goes into a muscle and is slow releasing. It dampens down any inflammation . I had one 11 days ago and I benefit from it. Good luck.

stickywicket

Hi and welcome from me too.

I'm sorry your Mum is having a rough time of things. Rituximab is usually given at 6-12 month intervals but, as it's an infusion, does require a high percentage of nursing staff to patients.

I wonder why your Mum usually has flares at this time of years. Is it simply that her next infusion is due? ie does she normally have them annually? Maybe there are other factors which could be tackled.

The survey 'Cloudy with a chance of pain' found that “days with higher humidity, lower pressure, and stronger winds are more likely associated with high pain days,” This is for all kinds of chronic pain not just arthritis, Of course, we can't change the weather but it's important to keep warm both in how we dress and in heating. Is your Mum able to keep her house warm? Also, at this time of year, people are less inclined to move about. Keeping joints moving with range of movement exercises, especially when flaring, can make a big difference as can going for a well-wrapped-up, bracing walk, even – as is my case – in a wheelchair. Diet is another thing we often change for the worse in winter. Sugary, fatty comfort foods can creep in where fresh fruit and veg would help our metabolisms more. Some things here might help https://www.arthritiscare.org.uk/living-with-arthritis

I hope your Mum can get her rituximab before February and, if not, maybe the rheumatologist could prescribe something else to tide her over (If she already takes methotrexate perhaps it could be increased) but the above suggestions should help a little.