Truxima (Rituximab) Advice please?

[3LittleBirds2]

Hello and Happy New Year!

I had two Rituximab infusions in December, these were my 5th cycles.

I’ve been feeling a bit more blurgh than usual after these infusions and just put it down to the Christmas rush prep etc, I’ve just pulled out my alert card and it says I was treated with Truxima (Rituximab) when I used to receive Mabthera (Rituximab). A quick search and I’m thinking my medication has been changed to the cheaper alternative but no one has told me or did I even need to be told..I can’t get hold of anyone until next week at my Rheumatology Department but i guess I could ring Medical Daycare tomorrow.

Has anyone else had experience of this and did they notice feeling a bit more off than usual after having it? I’m taking it that the NHS are using a cheaper alternative which is fine but I would have liked to have been informed?!

Thanks for reading and wishing everyone a very healthy and pain free New Year!

[Hidden]

This is wrong and I would question this. Not related to RA but my father took a branded medication for years for his heart . He was given a cheaper generic drug . He suffered side effects. The out come he had to fight for the branded drug although they did offer him an alternative generic drug he declined given his branded medication after much disapproval and no problems since. Very often these alternatives all though classed the same have slight variations hence they are cheaper.

Make a list of the symptoms your getting with alternative drug and if you feel that this is the reason you feel bad stand your corner.

[3LittleBirds2 in reply to Hidden]

Thank you for your reply, I’m glad your father fought his corner.

I will check with the hospital when everything is back to normal but yes, I should have been informed!

[AgedCrone]

I don’t know what the legal NHS regulations say but my local hospital recently changed from using Mabthera to Truxima, & all patients who were receiving Mabthera received a letter saying the change was about to take place, and if we had any queries we should speak to the rheumatology pharmacist.

I did this and the pharmacist agreed that I would be able to stay on Mabthera.

In fact the Pharmacist told me that since Truxima had been introduced the price of Rituximab had come down because their sales had gone down because of the competition.

Other ladies I see at the clinic who did change to Truxima are all doing OK...maybe you have just picked up a Winter bug....I hope that is all it is.

Look at the NICE recommendations.....and speak to your Rheumatology nurse.

Hope you feel better soon.....Happy New Year.

[3LittleBirds2 in reply to AgedCrone]

Hi

Happy New Year to you..I was hoping you would reply 🙂

I had seen posts on here about others who had it changed but as I hadn’t heard anything or been informed when I had my review appointment I assumed it would still be Mabthera. I’ve just feeling more side effects than normal but put it down to Xmas etc, but just checked the alert card and I was treated with Truxima.

I will be ringing for clarification as soon as I can, I can’t say I’m surprised that I haven’t been informed but it’s not right is it?

Wishing you a very healthy and Happy New Year and thanks for info. Xx

[Tessthomy in reply to 3LittleBirds2]

Hi and happy new year. This is a wee bit alarming and disconcerting as I have my third cycle coming up on the 12th. I might call my rheumatology team and get some advice regarding this.

They certainly shouldn’t have changed it without your permission. side effects or not. It’s a bit like when I was on Embrel. They did ask me so I would hope they would again.

Thank you for bringing this to our attention. I’ll let you know the outcome when I get to speak to someone. In your case, Let’s just hope its a virus that goes away very soon and not side effects which would be annoying.

Keep up posted. TTx

[3LittleBirds2 in reply to Tessthomy]

Hi Tess and Happy New Year!

I hope I haven’t alarmed you too much, but yes, we should be aware of it! I didn’t give it a thought when I went for my infusion.. I’m just glad to be having it done when I’m there but I’m aware now!!

It may be just one of those things but I feel rough enough to pull out my alert card and it says Truxima on that. I will ring for clarification and ask why I wasn’t informed and will let you know.

Good luck with your infusion on the 12th and hopefully you’re still on Mabthera but can check with your department before hand. Xx

[Tessthomy in reply to 3LittleBirds2]

I don’t think I even have an alert card🙃 ?!

[AgedCrone in reply to 3LittleBirds2]

I must say I’m a suspicious soul & ever since Truxima appeared, even though I have been assured I can stay on Mabthera, I have always looked & asked if the bag of fluid is Mabthera.

I do think you should have been informed....NICE do suggest drug changes are discussed with patients....but I don’t know if that is a hard and fast NHS ruling.

Since it is now being used in my clinic I do still ask & check with my Rheumy/Bio nurse. Possibly because prior to RA I had some really bad drug reactions.

Unfortunately I have once again failed at leaving longer than 6 months between infusions......so I am off for a single infusion on 14th. Apparently only having one infusion can sometimes help extend the period between infusions,..can’t understand how...although it might slow down the cell depletion?

Right now I’m fed up to the teeth with RA & eveything to do with it!

But HeyHo...New Year & all that.....hope we all fare better in 2020!

Let us know what answers you gets about not being informed.

[3LittleBirds2 in reply to AgedCrone]

Maybe they think it’s such a small change it doesn’t warrant being informed? Bit like when you buy cheaper alternatives of say aspirin or paracetamol.. but this is not in the same league it’s heavy duty drugs?!!

Like you..I’ve had awful side effects from RA drugs I’ve had over the years but with Rituximab (Mabthera) I’ve been ok...it’s been a game changer no steroids needed etc for a year.. so I don’t want that messing with!!

Sorry, to hear that you’re having a bad time with the RA , it’s a bitch isn’t it, I hope the infusion brings you some relief I really do and thanks for your advice I really value it. Xx

[3LittleBirds2 in reply to AgedCrone]

Just wanted to say I don’t feel it’s a bug, I just feel different, weird and can’t put my finger on it. Hot flushes, dull headache and tummy pain, with sniffles, which I would get with Mabthera but not for this long..will ring for advice but will just ride it until it passes! Thank you 🙂

[AgedCrone in reply to 3LittleBirds2]

Strangely enough that is exactly how I feel without the sniffles ...banging head ache this morning...(& no it’s not a hangover)

I don’t usually get any reaction after an infusion except feeling very tired.

Maybe mine is because I need an infusion?

Damn this disease!😟☹️

[3LittleBirds2 in reply to AgedCrone]

Nope, no hangover for me either I didn’t touch a drop last night!

I’m thinking it could be this horrible damp weather with me too...it’s always affected me even before RA...we need some dry heat and sun on our weary joints!!

Hope you feel better soon! Xx

[charisma in reply to 3LittleBirds2]

Being new to infusions, I’m not sure how I ought to feel but have noticed after the one received on Dec 24th, that I sneeze just once now and then, have stonking headaches, hot flushes with cool chills on some days too.

I have put flushes down to still taking Prednisolone 10mg a day, tapering slowly. And that they add a steroid drug to the premed drip... upset my body’s adjustments!

I also thought maybe getting the infusion a bit faster might have upset my poor old body... I was a bit wiped out after the first but by the second week after was much better.

This time, just feeling unwell and wondering if I’ll ever get used to changes RA brings. No two years (or two months) are the same!

Maybe slowly lengthening days will help perk me up!

[3LittleBirds2 in reply to charisma]

Yes, I agree I think the flushes were the steroid effects but that usually wears off after a couple of days, it’s been two weeks now. Like I said in a previous comment I felt rough enough to put the Alert Card out of my bag and that’s where I saw I’d been treated with Truxima.

[charisma]

Hi 3LittleBirds2

You are right, Truxima is the brand name of one newer biosimilar that the NHS use in place of Mab-Thera ie Rituximab.

I just started Truxima infusions (first two Dec 10th and 24th). It might be worth finding out if they expect your system to adjust to the change, and also note differences in how it is affecting you.

Welcome to the community, and Happy New Year!

[3LittleBirds2 in reply to charisma]

Hi Charisma and Happy New Year

Thanks for the welcome but I’ve been a member for a few years now but just don’t come on too much now..I’ve been fairly stable on Rituximab, well apart from severe damage I got whilst trying to fins a medication I could tolerate! 😊

I had my infusions on the 6/12 and 20/12, how are you feeling after yours? These were my 5th cycle and I’ve feeling a bit rougher than normal. Do you still have the Mabthera or have you been changed to Truxima as well?

Thanks for replying!

[Otto11]

Hi

I’m on Truxima but was supposed to start Rituximab 2 years ago however my Consultant called me to let me know it would be Truxima instead. I believe you are supposed to be informed of any swapping to a cheaper version but looks like this didn’t happen for you. My friend was swapped from Humira to bio similar without being informed & it has not been as effective for her so they are now swapping her back to the original.

My daughter also had similar with a recent iron infusion. About half way through I looked at the bag & noticed it was different to normal I mentioned it to the ward staff who agreed this was different & said we don’t like this one. Great! My daughter was unwell after for a week or so but ok now.

I have struggled a lot over the past 2 years & have asked several times to be put on original but they refuse each time. I only have half dose due to numerous hospital admissions with infections since starting it.

I hope you manage to get some answers & that Truxima works well for you x

[3LittleBirds2 in reply to Otto11]

Hi, Thanks for your reply!

Sorry, to read you’ve been unwell since starting this treatment, it’s a double edged sword isn’t it, the medication helps the RA but we get blighted by side effects. I was already prone to Sinus and Water infections but these have got worse since Rituximab and I’ve definitely felt yuckier since most recent one.

Glad you’re daughter is ok now and well done for spotting it too.

Thank you for your good wishes and I will update if and when I hear anything. All the very best to you too and a healthy and happy 2020. X

[Otto11 in reply to 3LittleBirds2]

All the best to you too x

[orange33]

Hi, do not have alert card for Rituxamab.

I did speak to RA Doc but seemed unaware these were available.

I have had no information regarding Rituxamab change yet??

I have infusions for PN. I also have RA.

I hope this is just a blip for you.

I hope you feel better soon.

[3LittleBirds2 in reply to orange33]

Hi Orange

Thanks for you reply, I don’t always get an alert card, I’ve had 5th cycles and two cards..the most recent one this time but maybe that was because of the medication change.

I really hope you can stay on your Orginal Rituximab, drug changes can be daunting especially if we are doing well on one...I absolutely think we should be informed.

Good luck and very Happy New Year! X

[3LittleBirds2]

Thanks to everyone who took the time over the New Year to reply, I’ve emailed my Consultant’s secretary today and she’s forwarded my email on to him... I will update if and when I get response, I’m afraid I have very little confidence in my Rheumatology Department and have had to fight my corner every step of the way..I sometimes think I know more than them now!!

[3LittleBirds2]

UPDATE - I received an email back form my Consultant Secretary apologising about not being informed about the drug being changed..and they’ve forwarded my email to the specialist Pharmacist about my symptoms..which is just great...NOT!!!! I’ve spoken to another lady who had Truxima at the same hospital at a similar time and she’s been feeling exactly the same and wasn’t informed about the change!! Doctors appointment for me next week to get these symptoms checked out! 🙄 Thanks for replies.