Ritixamab

[Callabag64]

Started Ritixamub last year and told infusion could last up to 12 months, it is almost 12 months since my infusion, has anyone else found that it has lasted longer ? Keep waiting for flare up.

[Neonkittie17]

That’s good going. I went 14 months first time then a year a couple of times, then 8 months, then 6-7 and now the last time was almost a year.

[emmajj1971]

Thats really good for a first time. I have them every 6 months and it took 3 lots so 18 months before I felt any improvement.

[Jillyanne]

Well done and may it continue , unfortunately mine only last about 6/7 months , 7 weeks ago I had my infusion , they would only allow me one infusion instead of the two , apparently because of Covid , I am now having a few problems , so not sure what the hell is going to happen

[AgedCrone in reply to Jillyanne]

In fact it is probably nothing to do with Covid.....it is now becoming common practice to only have one infusion .....research has shown that lasts just as well as the double infusions, so don’t worry.

I have had a single infusion the last twice and they both lasted the same length of time as the double infusions I’d had over the last four years.

I am very grateful ......the less drugs I have to take to remain comfortable the happier I am.

Don’t expect to need the double infusions in future.....I’m sure your rheumatologist will know if you might need a double infusion at some time in the future....but let’s hope you can manage on the single treatment.

[bpeal1 in reply to Jillyanne]

I had two lots in May, so it might be due to COVID or could be that your health authority are changing their policy. My consultant tried switching me to one infusion a few years ago but it didn’t go well for me so she put me back on two lots every 6 months. Every time I see the biological nurses I have to say I have two lots, every time they say “we only give 1 lot now” and I reply “but my consultant said I need two lots” they stroppily say “we’ll have to check with her but I’d be surprised if she agrees” and then I get my appointment for two lots.

[Jillyanne in reply to bpeal1]

😂😂😂 love it , I have a new nurse , my regular one has gone on long term sick and she regularly gets stroppy 😏😏

I have emailed her twice with no reply

[Paula-C]

I heard somewhere, can't remember where that someone's lasted three years. I did know a lady a few years ago and hers lasted eighteen months. xx

[KaysDad]

I took part in one of the initial trials for RTX which involved 3 sessions at 6 monthly intervals, needed or not. After the third session, I was in remission for 7 years. Since then, treatments have lasted 18 months to 2 years. Just a about due for my next one but want to hold out until the covid-19 vaccine is available to me and the get treated after that.

[Yenleg]

Mine lasted around a year for first couple. Now I’m around 6-8mths.

Can I just ask how you all feel after infusion? I tend to feel faint,dizzy and sick for a while after.

[Callabag64 in reply to Yenleg]

Yes I feel quite weak, and light headed, first infusion stopped half way through owing to side effects, so didn’t get full dose till second infusion 6 months later.

[Pulfs]

I have infusion every 6mths but last round was delayed from May to end of September . Had my usual 2 sessions. I need it regularly as after about 5mths I start to feel very fatigued and because of this delay had a steroid shot to keep me going. Have had retuximab for last 8yrs and best thing for me. X

[-Mii]

I had an infusion in June so due in December ... but the last time it lasted 9 months but at 8 months I came down with a huge flare! Seem to go backwards then had weeks for it to kick in again !..... amazing when it does though X

[KMC15]

Wow that's great. Mine seem to only last 5 1/2 - 6mth. I'm having my 3rd lot on 26th nov then 10 dec I am definately ready. Was hoping after this many i would get longer but each time seems to last same. Hope it kicks in this time as tbh sont feel makes tons of difference.

[Paisley58]

Congratulations that's fantastic. I only get 6mths before I have to go for another round. However, because of Covid, I haven't seen my Rheumy team since January and only spoken to them twice since then. Due to Covid they are saying they don't want to bring me in for another infusion so currently being managed with steriods, shielding and bed rest as in agony, swollen and very fed up.

[Callabag64 in reply to Paisley58]

So sorry that you are suffering, let’s hope that we will have a vaccine soon and we can all get back to normal and get our treatment back on track.

[Paisley58 in reply to Callabag64]

Amen to that🙂🙏