Rituximab doses

[Galaxy2]

Hi All

Hope everyone is ok. This a question for anyone on rituximab, I’m really interested in the dose you receive .

I’ve been having rituximab for years, sometimes over 4 weeks a time sometimes at 2. I don’t react very well on the day so have to have the infusions very slowly . I’ve also have had to have a very long break of 2 years because of recurrent infections and a very depleted immune system but my vasculitis symptoms have been bad this year so I’ve started treatment again. However straight away I had an infection and I’ve been given a choice of stopping after 1gram (2weeks treatment for me) or having another 2 weeks, of treatment. I’m in two minds as I really feel I need it but don’t want to end with depleting my immune system too much again.

I’m interested if anyone receives 1 gram and feels that is enough. I know ultimately it’s my decision I have to make but any input would be really useful.

Thanks

[Nadine99]

My husband has Rituximab every 6 months, we were told that 500mg is now the norm. My husband's immune system, his IgG was down to 2.6 so his new consultant stopped his Rituximab for Sept 22 and Mar 23 and he felt awful, all GPA symptoms returning. After jumping through a few hoops, we saw a new consultant and he had his Rituximab in August. He is already feeling generally better but at the time his IgG had raised to 3.72. Hopefully he will now receive his Rituximab every 6 months despite having very low immune. We know he is very susceptible to any and all infections but we actively keep ourselves to ourselves and still wear masks in busy places. How this relates to you I'm not sure but just giving you our take on it, best wishes

[Galaxy2 in reply to Nadine99]

Thanks so much for your reply Nadine, that’s really interesting to hear 500mg is the norm fir vasculitis now.

[Grizzly-bear]

I’m on 500mg every 6 months - your dosage seems to be particularly high. I was in Renal failure with a load of other symptoms when initially put on rituximab so seems strange for you to be on such a high dose, unless you were initially on a lower dose and have blood tests to show it wasn’t doing much.

[Grizzly-bear in reply to Grizzly-bear]

During induction I had two doses two weeks apart but since then it’s every 6 months as a ‘top up’

[Galaxy2 in reply to Grizzly-bear]

Thanks so much for that , I’m not sure why I’ve been on such high doses, I was right from my first treatment. Really appreciate your response, do you find 500mg is enough to keep your symptoms under control?

[Grizzly-bear in reply to Galaxy2]

I get minor grumbles such as a bleeding nose that lasts a couple of weeks and occasionally I’ll have a joint flare up but they self resolve and are all very manageable for me. I wouldn’t go on extra treatment for those things.

[Galaxy2 in reply to Grizzly-bear]

Thank you for that, good to know that 500mg manages your symptoms. Were you initially on a higher dose?

[Grizzly-bear in reply to Galaxy2]

My first dose was 500mg two weeks apart (so 1g total), and then from that point it has been 500mg every 6 months. I had thought this was standard for vasculitis now.

[Galaxy2 in reply to Grizzly-bear]

Thank you, I asked as I’m just confused why my doses have been so different . When I started I used to have 600mg x4 each time. Im only little too and thought it was based on body weight. I’m so glad I asked this question now . Really appreciate your answers

[Grizzly-bear in reply to Galaxy2]

Your dosage sounds more similar to what is used for rheumatoid arthritis that is non-responsive to other treatments. RA patients on rituximab get it 4x per year typically and have larger doses.

Initial dose 2x 2 weeks apart then 6 months is also in line with rituximab website protocol for vasculitis (scroll down for the diagram): rituxan-hcp.com/gpa-mpa/dos...

Good luck. How you can lower your dose and not be as exposed to infection. Also hope you’re on Co-trimoxazole daily on a prophylactic dose as that’s also standard when on rituximab (I’m on this on the lower 500mg every 6 months dose)

[Mooka]

Have you had your immunoglobulin levels checked? I had the full two years of rituximab but stopped because of all the infections I was getting. I flared and had another couple of doses but the infections were bad again. My ig levels were really low and so went on immunoglobulin replacement therapy. Immunoglobulin is occasionally used as treatment for vasculitis. Not often as it’s expensive. This is a known side effect of rituximab.

[Galaxy2 in reply to Mooka]

Thank you Mooka, immunoglobulin was considered for me at one time but then I was told there was a funding issue and I wouldn’t be able to have it so I’m left with rituximab. It was great for a while but has caused it issues for me

[Mooka in reply to Galaxy2]

It is expensive. It had to go before a board for it to be approved for me but my immunoglobulin levels were so low I was given it straight away. Good luck hope you get to a good place soon. Incidentally I have Bronchiectasis, a lung disease, caused by my repeated chest infections so do be careful.

[Galaxy2 in reply to Mooka]

Thank you, I have long term issues too due to repeat infections,,all such a balance isn’t it

[Gurberly]

I'm also on 6 monthy doses of rituximab 500mg. It seems to have kept my vasculitus in remission with no real re-occurance of my original vasculitis symptoms.

My IgG levels have been fairly constant at just abouve the 6g/l level for the past 18 months, so no real issues there.

[Galaxy2 in reply to Gurberly]

Thank you for that, everyone seems to be on 500mg, interesting and I’m so glad I asked. I assumed I was on a standard dose but really don’t know why I’m on a high dose

[Hidden]

I'm somewhat amazed at the number of people that are on the Rituxan maintenance and say they have regular flares. I almost died in 2017 with the C-Anca GPA which caused total kidney failure and had me in the hospital for 3 weeks. I had dialysis for 9 months and stayed on Azathioprine and prednisone for about 2 years. I've been in remission for 4 years now and have not had any drugs related to GPA treatment and maintaining remission. It just makes me wonder how many other people could be the same but instead they follow the recommendations of the Rheumy and take the 5 month Rituxan. Yes, I still have aches and pains left over from the disease but nothing like when I was very sick. Keep in mind that does kill your immune system and leaves you vulnerable to severe infection that could take your life if not careful.

[Galaxy2 in reply to Hidden]

Thanks for your post. That’s great to hear your treatment worked so well and you have stayed off medication. I was on other immune suppressants for years before rituximab and have been on pred for 12 years now but it was rituximab that really worked for me initially, for a while at least I got my health back. However I don’t like being on it , the depleted immune system is frightening,

[ZiggyDiego]

I have had 1g rituximab every 5-6 months for 6 years. In the last cycle I had to wait just over 6 months because I was having surgery. I flared a lot. In my 7 years of vasculitis I’ve had 2 relapses and multiple flares so we are sticking with 5 monthly infusions of 1g now. I am not on prednisolone or avacopan. I’ve never discussed the dose with the doctors and I’ve not heard that 500g is normal. I guess it depends how easy it is to control your vasculitis.

[Galaxy2 in reply to ZiggyDiego]

Thanks for that, you’ve been on it for around the same time as me.

[Rosie7may]

I had 500mg rituximab for maintenance after the initial two doses 2 weeks apart and then every 6 months for 2 years then whenever needed every 9 - 11 months for 4 years. I was then switched to rixathon every 7 months and now I don’t know, no appointments given since. August, last dose was January.

[Galaxy2 in reply to Rosie7may]

Thanks Rosie, I hope you hear soon when your next appointment is