Rituximab stopped in NI

[Maverick77]

Hi fellow luppies

My Lupus nurse has just informed me that Rituximab is no longer being offered to patients because of the dangers it poses with COVID. Alternatives will have to be looked at. I personally find I’m doing quite well on leflunomide. Good luck with alternatives🤗

[CarolMcl]

Hi, thanks for the information. I'm in Scotland and have just received my 2nd infusion 2 weeks ago, as far as I'm aware they have to continue here??

[Maverick77 in reply to CarolMcl]

Hi CarolMcI I was due to have my last infusion in October but my consultant informed me that patients on ritux had no immunity so I chose not to have it. I have since started taking leflunomide and it seems to be working. Stay safe.

[CarolMcl in reply to Maverick77]

I hope they continue to work well for you and keep you safe 😊

[Maverick77 in reply to CarolMcl]

Thankyou carolMcI❤️

[weathervane in reply to Maverick77]

Im in Ni as well , i just started rituximab again after a year break as had radiotherapy. I had the second one last Thursday and now my husband and son have covid 😵‍💫. I found one particular rheumy nurse was extremely negative- if I caught covid I could die , her words !!

There seems to be great results with the antivirals so if i do test positive i will be straight on to my doctor.

Im glad you are doing well on alternative drugs that must be a relief for you .

Best wishes

[Maverick77 in reply to weathervane]

Hi weathervane I was told the same in October. As you say the antivirals seem to be a life saver and omicron is not nearly as bad as the delta variant. Look after yourself❤️

[weathervane in reply to Maverick77]

You too Maverick, stay safe xx

[Ingrid1234]

This is very odd! The WORLD LUPUS FEDERATION Survey asks respondents about access to biologics with specific questions.

Wondering whether this danger is only highlighted in NI?

[cathie]

The problem with rituximab is well documented. What’s new is decision about what to do. I’m interested that there’s still an element of choice.

[MOOG144]

Hi I was told by my Rheumy that the NHS lost the licence when I enquired about a new course.....

[Roarah]

It is still being used in cancer and autoimmune patients but research does show b cell depleting drugs negate MRNA vaccine effectiveness at preventing severe infection. A year after last rituxinab MRNA jabs do provide protection and if fully vaxed before treatments starts seem to be showing promise as well so my hospital/,cancer center is advising that all new patients with certain lymphomas or SLE to get fully vaxed before starting treatments.

All patients at my hospital on any MAB treatments are advised to keep masking but at my hospital masks were used by patients on MAB treatments years prior to covid so not really a new thing.