Calling all Biologic Boffins! A question about Ritux... - NRAS

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Calling all Biologic Boffins! A question about Rituximab being a chimeric biologic.

Neonkitty59 profile image
26 Replies

Due to start Rituximab soon in April, and I understand that Rituximab is made from chimeric properties and was wondering if anyone knows if there is likelihood of any reaction or have known/experienced any reaction due to the fact it is murine ( derived from mouse) as I was allergic to the Enbrel clickpen after five weeks of successful clickpens and that is a murine product also (but Enbrel is derived from Chinese hamster!) Sorry to be scientific and if the NRAS people know anything then please enlighten me! I mentioned this at a recent steroid injection, to the Rheumatology Registrar and she said she thought it wouldn't make me react as "it was from a different part of the mouse!!" (Yes, I did say ... What, its squeak??!!) Seriously now, I so want this med to work for me but I wasn't too convinced by her answer/comment, but the biologics sister thought not and said my Consultant wouldn't have recommended Rituxmab knowing my reaction to Enbrel. Any biologic boffins out there know anything? ;-) Many thanks. x

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Neonkitty59
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26 Replies
helixhelix profile image
helixhelix

I'm not a biologic boffin, but I do know that these do work on TNF-a in different ways. So that might also help in making sure you don't react to rituximab (a monoclonal antibody) in the same way you do to ethanercept (or Enbrel which is a fusion protein). They are also very different generations of drugs so the whole process of making them is very different. Even if there may be essence of small mammal somewhere at the start of the process they are as different from each other as an Amstrad is to an iPad.

And I don't think our reactions to these drugs are as straightforward as say being allergic to peanuts, so anything with peanuts affects you. After all, you can be allergic to penicillin but totally ok with other antibiotics. It does seem as if all we can ever do with these drugs is try them....

Neonkitty59 profile image
Neonkitty59

Thank you Helix for your very prompt, kind and scientific words of reassurance. (After all .. your name is helix! ;-)) I did read some of the science behind them, and you are right I know about our reactions to Penicillin but not necessarily to other antibiotics, as I am that very person! There is no guarantee which drug will work and which one won't I know but I am hoping this time for one that will. I have had a year of being patched up on hydrocortisone injections and two anti-tnfs not doing enough so hopefully Rituximab may be the one to make a positive difference.

helixhelix profile image
helixhelix in reply to Neonkitty59

Helix helix may be a double helix (ie DNA) but it's also the Latin name of the common garden snail....so I felt it described how RA turned me from a person into a slow and slithery being.

Neonkitty59 profile image
Neonkitty59 in reply to helixhelix

No .. HH .. say it is scientific! That is how I read it ;-) x

in reply to Neonkitty59

Hi neonkitty I failed on embrel, inflix gave me drug induced Lupus and I reacted to Humira. I waited 15 months on pred for Rituximab to be licensed and finally got it in 2007. It's working very well for me and I've had 10 cycles.

Neonkitty59 profile image
Neonkitty59 in reply to

I'm so pleased it is working for you, Kiki and you are a Rituximab veteran! Proof it keeps on working! ;-) Did the Lupus subside on stopping the Enbrel. I do hope so, Do you know what happens if you ever have to have general anaesthetic when on the Rituxi? Presume you have to ensure it is not too near infusion time? Wait a few weeks. I just wondered and was one of the general things forgot to ask but can at some point.

cathie profile image
cathie

When I was on biologics the people in the unit used to administer them + antihistamine + sedative to reduce the possibility of reaction

Neonkitty59 profile image
Neonkitty59 in reply to cathie

Yes Cathie .. same will be done for me I understand. x

in reply to cathie

Sedative! I want sedative I just get 2 paracetamol an antihistamine and an infusion of methylpred.

Neonkitty59 profile image
Neonkitty59 in reply to

Methylpred is the steroid? Never had that steroid before. Is it something they use specifically for the pre-infusion? I know they give the combi of painkiller and antihistamine and steroid but didn't know which steroid.

Tillytop profile image
Tillytop

Hello,

I know little about the scientific stuff I'm afraid but I do understand your concerns. After developing antibodies (over time) to both Infliximab and Humira and having to stop them, I too was very concerned about starting another biologic. I was given the choice of Enbrel or Rituximab and went for the Rituximab on the basis that it works differently - ie by attacking the B-Cells, rather than being an anti-TNF like the others. So far, after almost 3 years, I have had no problems with it, so it seems as if it was a good choice for me. Having said that though the consultant explained to me that although Infliximab, Humira and Enbrel are all anti-TNFS they all work in a slightly different way so in theory being allergic to one drug shouldn't make us any more likely to be allergic to another.

If you do go for Rituximab, really good luck and I hope it helps you as much as it has helped me.

Tillyx

Neonkitty59 profile image
Neonkitty59 in reply to Tillytop

Thank you, Tilly and I am so glad to hear it is working so well for you. Long may that continue. I am due to start Rituximab on 1 April if all the blood tests I have this week are OK. x

Tillytop profile image
Tillytop in reply to Neonkitty59

You are most welcome. Good luck with the blood tests and with the Ritux!

Tillyx

Neonkitty59 profile image
Neonkitty59 in reply to Tillytop

Thank you Tilly. I always have a blocked nose/sinus October-May so perhaps Rituximab will unblock it! Hopefully not too much the other way. x

Tillytop profile image
Tillytop in reply to Neonkitty59

You are v welcome! Although I never had sinus problems my nose was always v blocked too - and I had wondered if the fact that it wasn't blocked any more was down to the Ritux. But I had never connected the nose running so in fact it may be all part of the same thing. Hope it does help with your nose too!

Tillyx

Neonkitty59 profile image
Neonkitty59 in reply to Tillytop

Thank you Tilly ;-) Although I do get many spells of blocked sinuses I still can smell things very well! I think it is likely to be the Rituximab too! (As long as I don't go all drippy!!) x

in reply to Tillytop

Does your nose run a lot Tilly? Mine has run since I started on Ritux nearly 7 years ago.

Tillytop profile image
Tillytop in reply to

Well it's funny you should say this Kikideelili because it does! I had never connected it to the Ritux. How very strange!

Tillyx

Idontdoflats profile image
Idontdoflats

Hello NeonKitty,

I was taking Enbrel injections last year. At the beginning the improvement was amazing - only after 2 injections I had no visible swellings and the pain almost vanished - but that was short lived. I continued taking Enbrel and reported the 'side-effects' to the nurses in the RA clinic. I was told the 'slight injection site reaction' is common and the headaches have nothing to do with Enbrel (It was the size of a lemon across the area injected) I felt unsupported and miserable.

The balance wasn't right - the RA pain had almost gone, but so had the social part of my life. I took the injections on a Friday and so most weekends I was too tired to do much, felt sick for 3-4 days and itchy.

I knew something was serious when I asked for a Hamster wheel for Xmas. (Ok sorry, trying to keep it light)

It's only when I texted the nurse a photo of the area I inject, I was told to stop immediately. My body was creating antibodies to fight off the 'infection' - that's my reaction to Enbrel!!

After 6 weeks of clearing my body of Enbrel I was given new meds.I am now using Humira. Early signs are good and I have no whiskers :-)

Lesson learnt - don't be afraid to keep telling the Rheumatologists how you are feeling. Your response is unique to you. Don't be afraid to disagree with them if you don't feel right.

Hope the above helps you and others. Wishing you luck with your new treatment.

Neonkitty59 profile image
Neonkitty59 in reply to Idontdoflats

Sounds almost the same as how I was on Enbrel. The site reaction lasted all week and then it was time for a fresh one! No Humira isn't derived from mouse, or Chinese Hamster as Enbrel is, so no need to stock up the fridge with cheese or sit on the skirting board!! Hope Humira goes well for you. Not enough improvement to keep me on it. We are all different and what suits one of us ... etc. I am always honest and my plain speaking hasn't always been welcomed, but my main consultant prefers I speak this way to her as she is the same. Thank you for your kind wishes.

earthwitch profile image
earthwitch

It would be useful to know exactly what you were allergic to - it may not necessarily be the enbrel itself. Some of my US friends have said that even the packaging or the materials that the injector are made from or the other stuff in the injection fluid can trigger allergic reactions. Did you try the Enbrel as a prefilled syringe to see if it was different to the clickpen? You could also check with the manufacturer exactly what else is in the injection, and whether any of the packaging contains potential allergens.

As far as the murine bit goes, I believe that taking MTX with murine based biologics minimises the possibility of allergic reactions, but that MTX isn't necessary with some of the others.

Neonkitty59 profile image
Neonkitty59 in reply to earthwitch

I was told to come down to 15mgs MTX whilst taking Enbrel/Humira clickpens .. Humira have hard plastic covers and although it was only last year I think Enbrel were the same (but why do I think those needle covers/caps were a bit more rubbery?? Memory is usually very good but I am a bit blank on this for some reason .. probably the bad state my joints were in made me fuzzy minded) ) but I did read that Enbrel had Latex in its cover. I am not allergic to the Latex which can be found in the covers of rubber syringe caps etc, as I have just had a Latex allergy test last month. I was tested by a dermatologist last month for Latex. As I have strawberry and melon sensitivities the dermatologist said many people who have allergies to these find they test positive for allergies to colophony (Rosin/Pine tree sap) and also Latex, so that is why he felt I may have Latex senstitives. I did point out to him I used latex gloves some years ago when doing various artwork and that had no effect but he said you can suddenly become allergic to things. So I have tested negative to Latex allergy. There was no option to change to a syringe as Enbrel nosedived after five weeks of brilliant promise/relief .. the plan was to quickly change to Humira after the initial 12 weeks of Enbrel as there was a research study starting which my Rheumy was keen to have me on.

Valent48 profile image
Valent48

Hi, I do know biologics vary so much, I understand that although Enbrel is Chimeric it is less Chimeric than other Biologics and you do not build up anti bodies against it. They are all revolutionary in the treatment of RA, but of course we will all experience different results and side effects. Enbrel is very safe and available for injection at home, some Biologics will only be given in the hospital, due to adverse event but whichever makes you feel better then that's the one you go for.......I am new to this site but have worked in Rheumatology, (still very confused,) my Rheumy does not know if I have both Lupus & sero negative inflammatory arthritis...anyone else out there in a similar situation.? Back to Biologics......all have good clinical evidence, see which is better for you..at least there is funding now....

Neonkitty59 profile image
Neonkitty59

Hi, That is exactly what I DID!! I was told I had developed antibodies against Enbrel. Have tried both Enbrel and Humira both at home as I am not needle phobic. Now it is Rituximab. I believe someone has spoken recently about Sero Negative/Lupus on a separate thread. I am sure I saw our RArebird talking about this quite recently. Use the Search option at the top to type in the key words, and all the relevant posts/info will hopefully appear. Ask a new question then you can get all that is relevant to you in one place. ;-)

Valent48 profile image
Valent48

Hi Thanks, I'll do that. I'm really sorry to hear you developed anti-bodies......fingers crossed for Ritux...

Neonkitty59 profile image
Neonkitty59

Hi Valent, Thank you, I hope you find the med to suit you and you find other people here who can share their experiences with regard to Lupus and Sero-Negative. Anything I can help with I will of course reply to when I see your post. ;-) I find here it is easy to get information from the Search box, and have a look on the NRAS general info pages if you haven't made your way there yet, as I always find them very helpful. There are so many lovely people here who offer positivity and friendship. Neonkitty x

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