I was expecting my next Truxima infusion on Tuesday but have received a letter from the clinical director of my Rheumatology department only this morning informing me it will be RIXATHON instead.
The reason given is that it is now significantly cheaper than Truxima.
Anyone else had RIXATHON or been told they will be switched to it?
Hello Lolabridge sorry I'm not on these meds, but I have noticed a few people saying that their meds have been changed for a cheaper, or non branded version. I know my co codamol which I take also keeps changing it's brand name too. Hope that things work out for you with this change, take care x
Hi , i was asked at last rituximab infusion if I would switch to Truxima , a biologics nurse told me confidently that the Truxima has been found to not give as good a result as the rituximab. I decided not to swop over as I have been on rituximab for years with great results and I would be devastated if that happened . The reason they suggested a change was cost , I discussed it with friends and family before making the decision. I hope treatment continues to work for you , best wishes 🌸
I'm not being offered a choice but a fait accompli it would seem!
Sorry you are in this position, ive read your later posts and i think you are doing the right thing by querying the change in drug . Please give us an update and let us know how you get on, best wishes for your next treatment. It’s traumatic enough going through treatment during covid without other stresses and worries Xx
Thank you for your concern. I will keep you posted! x
Have you discussed this with either your Rheumatologist or the Rheumatology pharmacist who can give you an overview of the clinical, not financial, reason you have been informed of the intended change.
It is possible if the hospital still use Truxima you will be allowed to remain on it ....if you don’t ask you will never know!
No opportunity for discussion. Just the letter which arrived on Saturday which seems to indicate that it's a fait accompli! However, the wording of the letter suggests the Medical Director or Rheumatology is not that happy about the decision. I will phone him tomorrow morning. (see my later reply to this).
They cannot just switch you like that. According to nice guidelines the decision to switch is made between the patient and the consultant. I was told I had to switch to a biosimilar drug, I'm on enbrel and I didn't want to switch. I typed up notes explaining why and my thoughts about switching and I was able to stay on enbrel.
I've read lots of stories on here about how people's hospitals went about switching to the biosimilar drugs, people being told it was exactly the same drug when it's not. One of my nurse specialist in a telephone conversation told me it was exactly the same drug, I had to stop here mid sentence and correct her, telling her the clue was in the name bio SIMILAR! Think lots of hospitals just hope that patients will just go along with it. I read on here that someone was emotionally blackmailed into switching was told if she didn't switch she was denying others the chance to go on the drugs, she cried buckets over it, that was totally out of order. Any monies saved is not put directly into rheumatology. x
Link to Nice quidelines below last paragraph.
nice.org.uk/Media/Default/A...
Hi Paula, (my email is finally working again so will be in touch this week 💗) that’s awful about the person feeling so upset as they were leant on to change and made to feel guilty. I’m sad to hear that. I am glad you stood your ground too. Hospitals hope you roll over and accept, even if potentially detrimental to yourself, and you owe it to yourself to say no if you can’t face a possible deterioration which may happen and may not, but we know many people who have had positive and negative experiences so it’s hard to say. For me I will do exactly the same again if I am asked to change. X
Hi Paula
Thanks for drawing my attention to your experience and the NICE guideline on switching from biologic to biosimilar. Unfortunately I don't think it applies in my situation as they are trying to switch me from one biosimilar of Rituximab to another biosimilar of Rituximab. However I am going to raise my concern about this (see my later post) as it seems I'm being presented with a fait accompli.
Yes, I realised after I'd posted that you are already on a biosimilar drug.
When I was doing my research into biosimilar drugs I watched a video that Nras had done. A consultant was answering questions that the then CEO asked. At that time a few biosimilar drugs were coming onto the market and anyone switching from an original to a bio drug would be put on the cheapest one at the time. The question was asked that if someone had already switched to a bio similar and then a cheaper one became available would they then be switched again, the answer was no they shouldn't, they wouldn't have to keep changing if a cheaper one became available. Perhaps if you phone the Nras helpline and ask them for advice. xx
Hi Lola, can you speak to the rheumatologist about this or your rheumy nurse to see what their views are. How long have you been on Truxima. I presume it has worked very well for you?
I was leant on like Paula a couple of years ago to change from original product to biosimilar although not the same med, but from Rituximab (the original brand) to Truxima and had a very heated debate with a pharmacy manager on the phone as I was on my way on holiday in the car - passenger not driver! The pharmacist was quite aggressive in tone and insisted it was the same and told her exactly why I knew it was not and she was annoyed I knew my medication and my condition and no doubt annoyed she couldn’t steam roller me into submission!
Then she followed up the call with a further episode of leaning on me via a letter! I took it to my rheumy consultation which was a week after and my rheumy typed her a letter there and then with me at her side which said I would still be taking Rtx original product on her recommendation and not changing. My nurse said the pharmacist was known to phone people and try this.
The pharmacist on her call to me also asked if I knew what a biologic was?!! I said .. I would hope so as I’ve been taking one for five years! I was polite but was firm. I told her and explained why I knew Rituximab and Truxima were not the same and as I had been so horribly immobile and had a lot of joint damage due to meds prior to Rtx not being successful and finding a med that really worked and I had been on for five years was wonderful, I wasn’t going to stop taking it on a pharmacist’s say so and especially as it’s was someone who didn’t know me or my RA history. I did say if I was offered a different medication biosimilar in future and not an original product, then that’s different as I hadn’t already been taking the original product. I didn’t think it was sensible to potentially spoil what was working well for me to try a cheaper product. My rheumy and nurse said it wasn’t their decision to have the pharmacist phone patients and they were furious.
Good luck Lola and do ask your rheumy. I didn’t have to tell mine why I didn’t want to switch as she was wanting me to remain on my original med.
Thank you for your response. It's shocking that you were treated in that way. Unfortunately I have not been consulted nor do I have the opportunity of discussing it at an appointment with my consultant before the infusion is due on Tuesday. However, I'm going to do my best to get the decision reversed for me, using reasons very similar to yours. (see my post below)
Thank you all for taking the trouble to reply and for your suggestions.
I am going to call the Medical Director of Rheumatology that sent me the letter first thing tomorrow morning and ask for TRUXIMA again on Tuesday. I will tell him it was the first drug that worked for me after trying 4 others that made me ill during the year after diagnosis and during which time my RA was uncontrolled and damaging my joints. Also I’m not on MTX so if the new drug doesn't work or makes me ill I have no back up drug other than Steroids and increasing the dose of those and/or having steroid injections whilst we wait for the RIXATHON to exit my system and which will put me at increased risk of serious problems if I get COVID.
I think everything you said is perfectly acceptable to keep on Truxima and exactly what I’d say. Wishing you luck with your phone call and please let us know how it goes and I hope you get Truxima on Tuesday. 🙏
Crossing everything [as far as poss] 4u; I'm on Truxima + minimal sulfa tab and am overdue my nxt infusion so yr post has alerted me, just in case. Will also make note of yr argument for Truxima as previous meds nearly did 4me. Wishing you the very best x
Truxima (Rituximab) Desperate for some hope and others experiences
Truxima infusion
Rituximab causing itchy skin??
Fed up with my feet 😒🦶🦶
