Rituximab one vs two 1000g dose: Hello everyone. I saw... - NRAS

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Rituximab one vs two 1000g dose

ks1966 profile image

Hello everyone. I saw my pleasant rheumys nurse today. After doing her check up she decided to give me one dose of Rituximab instead of 2 doses this round. Any thoughts as to why she did this ? And has this happened to any one?

Many thanks.

51 Replies

It hasn’t happened to me but i think there have been older posts about it . Seems to have started at the beginning of covid . You could call your rheumy nurse again or contact your rheumys secretary, good luck, home all goes well .

My single infusion started before Covid…I vaguely remember there had been some trials..& as I say feel no different!

Hi some members on this forum have received just one infusion and I agree with weathervane it seems more common since covid. People have written they have done well on it and they might come on and answer you soon. I don't know why some hospitals have changed.I'm due my infusions in December and would be happy to receive one infusion. It may mean a lesser reduced immune system. You could maybe try leaving a message on your rheumatology helpline. I'm sure they would be happy to explain their reasons. Good luck.

Hi Sunny it was certainly the hope that just one infusion would lessen the side effects of low inmunoglobulins for me. It didn’t help enough as I’m always on the border of hypergamma, but it could have been worse I guess with two infusions. Having one made no difference whatsoever to inflammation (CRP never been above 5 .. usually zero and no flares or RA inflammation or RA pain whatsoever in 8 years of Rtx) so the infusions can and do work perfectly in that respect.) x

Thank you NK very interesting, I'm going to mention this when I go, as now I'm thinking 2 litre of drug in two weeks is a lot, just been happy to have it, but will be happy with one if they do blood tests to see how much b cells have depleted. All my iG's were in normal range recently, she didn't check b cells, I asked but she wasn't concerned, just checked previous years on the computer. I'm following your journey and always wishing for a good outcome for you x

ks1966 profile image
ks1966 in reply to sunnyweek

Hello. What are it’s indicative off?

I/we are not allowed at my hospital to proceed with Rtx unless we’ve had B cell blood tests. However igG at a decent, non hypergamma level usually means B cells are producing the immunoglobulin. I’m sure that’s what youf department are looking at. I am having monthly blood tests for B cells so as soon as they come back Immunology can check the level so o can repeat my vaccines. I hope my experiences can help and inform others. Thank you and I wish the very same for you. 💗 x

ks1966 profile image
ks1966 in reply to Neonkittie17

Best of luck. In which area are you getting your treatment

Neonkittie17 profile image
Neonkittie17 in reply to ks1966

Yorkshire

Thank you for that information NK about b cells producing the iGs. That's probably what my consultant was checking. I can now follow that through with her at a consultation. I assume then that your immunoglobulins will rise when your b cells return, but I remember you saying they never get very high (iG's), so I'm wondering if that is particular to yourself or whether it is because your b cells take so long to replicate.

Anyway, I'm sure you have enough on your plate currently than wanting to keep answering queries, so I'll leave you be, and I hope you have managed to complete your bulb planting, it will be a picture in the Spring x

Hi Sunny, I’m just waiting this next week for a tub to finish flowering ... some nasturtiums to finish and then I’ll cut back and lift some geraniums from that huge tub to come indoors and rest over winter. Then the remaining mixed spring bulbs will go in that. I’ve set aside 80.

No problem at all, I don’t mind answering anything that can help anyone re Rtx. People on here have kindly helped me too re go re their experiences. It’s not always the case your immunoglobulins rise or go to where they were when you stop having Rtx. It can affect your system for a very long time. Some people on here have had their immunoglobulins wiped out completely and have had to have IVIG to compensate. Mine isn’t like that but is low enough to be causing the issues with bronchitis. Apparently your igG needs to be <3 to qualify for IVIG. It is usually over repeated years of infusions the Ig diminishes but some people on here have had Rtx for many years and no problems. Then some have had an instant wipe out of their Ig’s from the first Rtx so it can be varied. When my IgG dropped to around 6 which was early 2018, that was the time I started with infections and bronchial episodes.

I had 5 years of no side effects whatsoever from early 2014 but the last 3 years have been difficult but I’ve always had zero inflammation in my joints or blood on Rtx and it's been the best med I’ve taken for mobility. My B cell repopulation is approximately 12 months so I’d not really get much time to make Ig before it’s zapped off on the next Rtx. It would only be back a short while. My B cells are detectable and do return so that’s good to know but they are a long time coming. You can also fluctuate in the time you take to repopulate as I’ve been 7 months then 14 then 10 but mostly it’s around 10-12 months for me. Many people follow a more rigid routine of them returning around 6 months. x

Thank you again for all the info, much appreciated. Gosh 80 bulbs in one large tub, it will look spectacular, maybe photograph it and show us x

I will do so when they bloom which should be around mid to late February. It’s a huge tub at the bottom of the steps down from the back door. The other smaller pots around 12 inch in diameter have about 15-20 in each. Mauve tulips and frothy yellow narcissus and some traditional orange eyed white ones, some smaller star shaped white and yellow tulips like little poached eggs and deep purple star ones and grape coloured muscari too. We planted loads of spring bulbs in the garden beds last year so hopefully they will reappear. I hope all goes well with your RA/Rtx. x

Can I ask where you got your grape coloured muscari from J? I only have traditional purple that I planted autumn before last & they came up beautifully but would love another colour, other than white or blue as I have a lot of bluebells so awash with blue. I've sourced the one with the white tip but would love full grape colour.

Hi, I’ve just checked with Farmer Gracy online and they no longer seem to have the Grape Ice one. They do have a lovely dusky purple one called “Night Eyes” which is similar to the Grape Ice ones as I’ve ordered some of those (for my silver ceramic snail!) I have ordered some very pale blue and white ones “Collection Grapevine”. There’s is also a pink/white/pale blue collection. Have a look as they now have a really good sale at the moment. They are without a doubt the best bulbs I’ve had apart from those I’ve brought back from Holland myself. The only thing you need to have is a good memory as to what the plant looks like, or to print off your order with the flower images on, as when you receive your bulbs, they come in little secure brown bags (all very eco!) in a ventilated card box and no images of the flowers on them, just the plant details/planting info. They don’t take long at all to arrive either. Hope you see some you like! 🌷🌷🌷

It's Grape Ice I'd seen. What I’m hoping for is just one colour. Never mind. Thank you though, I’d not happened upon Farmer Grady before, & it's helpful to know when you've had quality bulbs. I will have a proper look tonight, see if there's anything new that I fancy. Thanks again J.

Yes Farmer Gracy are fantastic. Dutch bulb experts. Just have another look to see if the Grape Ice have come back in stock this week. I’ve had no end of amazing spring bulbs from them. Everything has always bloomed from their bulbs. x

It’s back on again under “Muscari Grape Ice”! 40% off too.

I might just order some, thanks. I'm not sure what I'm wanting exists, I can't find the colour anywhere. Unless it was a throwback, that's possible.

That all sounds so colourful and uplifting. I may follow your lead and add more bulbs than I normally do it tubs for a greater show x

This mega tub needs lots or it will look rather lacklustre. Happy bulb planting! x

I've done it with anemones. They look spectacular as you have all the foliage below the pot top & the flowers reaching up. They're really forgiving too, you can plant the bulbs any which way & they'll figure the the way out!

Thankyou that's very useful to know about anemone bulbs, I'll get some of those too.

You'll see why it's helpful when you get them! Soak them in water for a few hours before you plant them, just lukewarm.

Sorry for hijacking your post ks1966

J, can I ask you something about nasturtiums? Ours this summer grew like a beanpole, or they would have looked like that if I'd trained them! How do I stop them growing so long? They were full of flower, just unruly.

My nasturtiums were supposedly a trailing type but didn’t trail too much! They got to a maximum of 12 ins in the huge tub but they had more space to do so, and in 2 smaller pots smaller pots and a medium hanging basket they gently curved/trailed over the sides and didn’t grow high. 8 ins maximum. Some people provide them a stick wigwam to grow onto. You can get a “Baby Orange” mini variety of seed. I’ve got some for next year. I don’t know how to stop them growing too big as I’ve always put mine in pots/tubs or hanging baskets. I think they are just very prolific growers. I’ve also harvested about 300 seeds from mine too. x

I should have thought it out before I planted the seeds. Serves me right, I found them in a box that had become hidden in the greenhouse & came to light when my h dismantled it. So it was a bit of chuck em at the soil & see! I'll look out for Baby Orange, it does look more compact, thanks. You'll have plenty for next year harvesting so many seeds! x

I chuck all sorts at the soil too and see 😄 and I’d love it if nasturtiums were growing like triffids as I love the bright colours! Yes I’ve a lot of seeds to go at both bought and harvested.

I agree with you, I'd be happy with one if you have the same effect, I'm having mine in December also and have been booked in for two. Good Luck 🙂

Thank you, same to you, 9th and 23rd for me, I'll think of you, and I hope it works as well for you as your previous ones.

I am the 7/12 and 21/12, Shame we're not in together, we could have a chat! Good luck with yours too and thank you xx

Whereabouts are you going for yours?

Southmead Hospital Bristol, how about you?

Treatment Centre, Nottingham, I could have sent you a message though, I'll be glad to get it done but think I'll be careful over Christmas

Me too! Mine has been delayed several times due to Covid and needing dental treatment, not great just bediene Xmas but at least we're getting it done , I agree have to be careful over Xmas and January too. I've just been called up to have my booster jab but not sure if she get it as Rituxumab may wipe it out!

I think if you have it very soon you'll be ok and time to make antibodies, similar to flu jabs, 3-4 weeks before infusions. I had mine just a week ago. Really its the best time I think as we can't have it for at least another 6 months after Retux.

Sadly, not the case for me i can't get mine until the 28/11.

Well I'm sure you will be extra careful then for while after, I know I will be as we can't be sure how well the vaccine has taken, I'm wishing you all the best for the infusions next month x

Thank you and to you as well xxx

Yes…it has been happening a lot…,it is believed one infusion can last as long as two.I have only had one for…I think…the last three infusions & I feel no difference.

I had only one dose not two and I have not noticed the difference as it has worked well.

For the last three years I’ve had one pulse of Rtx and it’s worked perfectly fine and no breakthrough flares etc. The hospital started doing it well before the pandemic but also one in the last year or so they said one infusion/pulse is safer to do I was told. My Nurse said research showed one pulse worked as well as two and it has for me. Also the thinking is if it works as well enough with one pulse/infusion then why over medicate? I’m sure if your symptoms come back quickly you’ll be put in for another infusion as soon as they can.

Unfortunately when covid started for a lot of us on rituximab our infusions were delayed, due to the nature of the drug and what happens to our immune system on it. When infusions restarted it was just one dose and they tried to make it a year in between or change you on to something else. I'm back to my two doses as of the end of November but they are changing it to a biosimilar from 1 December.

My rheumatologist tried one dose about 5 years ago. Unfortunately it didn’t work for me so I went back to two doses but the vast majority of patients on Rituximab at my hospital have their RA controlled very nicely with single doses.

Yes, since Covid I have had one infusion, I was told apparently one is just as good as two 🤔🤔🤔Not in my case , luckily I now have a new Rheumatologist and she has agreed to put me back to the regular two .

One just does not work for me .

Some people it does work for and you might be one of the lucky ones .

Might be worth a try and see how you go , you can always go back to two

there was a trial for well managed patients to see if one infusion would work… as far as i know its worked for some and they are happy and if it hasnt worked they are back on two think its more to do with managing your case well on the minuim ammount of meds. Deffo started before covid

Neonkittie17 profile image
Neonkittie17 in reply to Nik8210

I was happy to try just one as my side effects from Rtx were/are troublesome. One worked as well as two for me.

Hi. I have been on one for a few years now. Rheumy wanted to try it as two was not lasting as long as he wanted. Now I am on one very 6m which works for me. With two I would get maybe 7-8 m so not worth the extra as I can’t use anti-tnf and this is a long haul so less medication over the longer term is better. I am happy with this regime but everyone is different. His thought process was based on a double blind Swedish study. I also have problems keeping weight on when RA is active and am small so that was a factor in his decision. Every 6m keeps my appetite stable for longer.

Good luck! Have an open conversation if you are worried and what the options are if you feel one does not work. I did have to up my methotrexate by 2.5 and that seems to have done the trick for the past few years.

Got my retuximab infusion on Friday been told it will be only 1 instead of 2 I’ll see how I get on afterwards

I would always ask why! But then I'm an awkward sort of person.....

Why is my middle name! 🤣😆

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