Ritiximab

Hello, I have been on Enbrel for about 5ish years and it's not working as well, so coming off it 😞😞 gutted because I have been really good on it, until a few months ago, worked and at the moment cannot work πŸ‘ŽπŸ‘Ž

They have suggested Ritiximab infusion? How has it worked for people on this forum, please ? The other one they suggested is Abatacept?

Seeing the rheumy nurse on Tuesday to see which one they think I should take . Feeling quite confused

Thank you πŸ’

26 Replies

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  • Hi Jillyanne,

    I had the same experience on Mtx........for 7 years it was as if I did not have RA...then it stopped working & I was back to square one.

    I had my first infusions of RTX last October. Slight hiccup when I came out I a rash during the the first....but they put some anti histamine & a steroid into the drip & slowed it down & all was fine after that.

    The second infusion was quicker & uneventful. However , after a few days I did feel nauseous & fluey fir a few days...but it passed & so far it's all good news.

    As I'm sure you realise no two people react the same. I had my mid fusion appointment with my Rheumy nurse last week, & I am going to have two more infusions in April.

    Reading about RTX is scary, but I had no quality of life before the infusions & for the last 4 months I have been fine. Even breaking my arm in December has not shocked the RA back into action.

    Whatever treatment you go on to I really hope it helps.

    AC

  • Oh, I never new mtx could stop working after 7 years...and then to be back at square 1. YUk

    Im glad RTX is working for you, long may it last.

  • Thanks Suzanne.......yes I thought my RA was done & dusted, but I had all sorts of central nervous system symptoms. .......nausea, dizziness & the feeling that my head was being inflated.....the pressure was really unpleasant.i put up with it for quite a while as I didn't want to admit it was the MTX.

    But hey, that was then...right now I'm preparing for my trip to the sun next week......just dreading the journey, as although my arm is out of plaster it's still in a long splint & the surgeon says I mustn't lift anything for a month . I just hope the assistance I have requested. From the airline actually appears!

    How goes the teeth...hope all is going well & is not too painful?

    AC

  • Oh a trip to enjoy the sun!!! Wow, enjoy yourself and be very gentle with your arm as it needs time to get strong again :)

    I don't know what the sun looks like anymore. A very aggressive snow storm has hit the BC lowermainland!!!!! And my furnace broke, well to be honest, it caught fire. Thank God we were awake and my hubby just happened to be near the furnace closet when he saw a flash....We haven't had the need to use the furnace since the winter of 2008-2009. I mean when Vancouver hosted the 2010 winter olympics, we were trucking in snow from Alberta!!!

    Anyways one tooth is fixed and saved. The extra "fill" has been removed and no change to my RA... The tooth that has been bothering me, the one the oral surgeon pointed out, is being extracted this wednesday. My fingers are crossed. 1 tooth down, 2 to go.

  • Thanks Suzanne,,,,,,fingers crossed it keeps working.

    How goes the teeth? Hope the treatment is not too painful & you are feeling better.

    AC

  • I've been offline on and off due to this crappy snow storm!!! I am not used to this snow and sub zero weather.

    As for my teeth, the ones that the oral surgeon noticed is beeing extracted on wednesday and the one that I thought is causing the problem will be extracted or saved by an endodontest the following week. Yes on Valentines day...how romantic eh? I truly hope my RA calms down or simpley disapears....

  • I will hopefully be sitting in the sun in the Canary Islands then ...so I will raise a glass of something tasty & hoping it all goes well for you!

    I certainly hope you get some benefits from all this pain & expense you are going through.

    Take care.....AC

  • The Canary islands are on the other side of the world from me. The islands seem so exotic and exciting when I watch TV shows on where to vaction. I must put the Canary islands on my bucket list.

    My hubby and I are planing to go to Mazatlan this coming October. We need a vaction!! lol

  • Sorry to spoil your dreams Suzanne, but I would not fly all the way to the Canaries from Canada !I only stay there in the winter because I house sit for friends & right now sitting on a balcony staring out to sea feels like paradise!

    Lots of expats there, all terrified they will be deported after Brexit, & they won't be able to buy a decent house in UK!

    You can cover most of the islands in a day. I go to Tenerife & unless you play golf, or like to boogie all night there is not much to do!

    Look at the Italian Islands..Ischia is lovely & you could see mainland Italy too, Rome, Florence, Naples! Or the Norwegian Fijords in summer, or drive through France!

    Sorry to spoil your Bucket List..cross off the Canaries!

    AC

  • Really eh? I only like to play golf if I can cheat hahaha. ...and I haven't boogied all night since the late 80's. Oh that would be a sight to see me on the dance floor today ;)

    I've heard so much about Brexit, but I don't really understand it. Is Brexit like the bumbling buffoon of King Donald's presidency in the USA? Such a gong show that is happening in the US. I'm glad I'm Canadian.

  • The U.K. originally joined what was called the Common Market...the country voted (back in the 70's I think) to have Free Trade between certain European countries. Trouble was places likevUK, Germany & France were very rich, & places like Italy! Greece & Spain were not .....so how any sane person could,then decide we'd have free movement to work in any country that belonged, with no border controls I don't know. But it happened & of course people from the poor countries by now joined by a lot of very poor countries in Eastern Europe went & earned lots of money in the rich countries. But they would work for less than the people in the rich countries so people lost jobs to immigrants.

    In UK we had a referendum last year & by a small majority voted to leave! Britain is Exiiting = Brexit!

    At least I think that is what is happening !

    AC

  • Sounds like NAFTA.

    North American Free trade Agreement between Canada, USA and Mexico. You must be hearing on the news about The Donald complaining about being ripped off by Mexico...We Canadians wonder why he isn't complaining about how NAFTA allows the US to rip Canada off...

  • That is how it started off....but in NAFTA you can't just go to the US or Mexico, not work, but end up getting, health, housing, & cash benefits can you? YOu can in the EEC. We even lost our Navy Blue passports & got Maroon colour EEC Ones! Big Deal!

    There is also no requirement to soeakmEnglish, except in the medical world. But even that isn't fool proof ..but I think that will now be changing

    That is what happened when the Common Market ended up as the European Economic Community the EEC!

    There is a court run by people who have higher status than UK courts. It was taking us years to deport convicted terrorists...because they had married a UK Citizen....& were entitled to a "family life" no matter what crimes they has committed! Crazy!

    The EEC hasn't had a signed off Audit for years ....one accountant who refused to sign off the accounts was bullied out of her job.

    So you understand why about 52% of those who did vote, voted for BREXIT!

    Off to bed now....early start at the torturer.....I mean the physio tomorrow!

    Night! Night!

  • explained well

  • My iPad is playing up...I'm not going mad...my first message just disappeared....I thought it had gone into the Ether

  • My messages are disapearing too. I just thought it was because of this dang snow storm. 5 days of, what I can only discribe as a blizzard... grrr

  • Thank you, that's really positive πŸ’πŸ’πŸ’•

  • Hi

    I dread the day when abatacept stops working for me......I wish they would hurry up with the research to show which drug is most likely to work for us.

    I was on enbrel for 6 months but it didn't work at all for me πŸ˜”.....moved onto abatacept and it's been good for me, 2 years now. Reading up about abatacept was scary too......think all the drugs we take can seem scary. Rtx was also suggested for me, the only reason I went for abatacept was because its a weekly injection I can do at home rather than a hospital visit for an infusion. I'm still working so just thought it less hassle etc. I also thought that if there were any nasty side effects, then abatacept would be out of my system quicker than an infusion which I think is supposed to last 6 months ish. Maybe your rheumy will be able to give you guidance but quite honestly I don't think they know what will or won't work for you. It may come down to your preferred choice of administration. Good luck! And hope you come away with the best option for you.

  • Like you Beaches I would have preferred injections, but I had breast cancer a few years back & supposedly RTX was the best choice for me. Apparently all sorts of health conditions dictate which Biologics are suitable.

    i didn't want my life "on hold" whilst I waited for dates 6 months ahead, but I got my next infusion dates a couple of weeks after my first so I can plan ahead........although sadly my social life is not so exciting that I have events planned 6 months ahead !

  • Dear Jillyanne, this is what happened to me I had 2 does that are suppose to last 6 months. For me it got rid of the pain, but I was also very sick for 4 months. The pain started coming back. I g ot the infusions in Aug 2016 . I am now in Jan of 2017 and I am having to go through a lung biopsy and bone marrow. It seems like any RA medication has caused me lung disease, 3 different skin cancers and now we are looking at blood or bone cancer but I also have a Solitary nodule in my lung. This is what it did to me. I don't know if anyone has a positive side. This did help with the pain. The side effects were really hard on me. Good luck with this...Danna

  • Oh wow, I am so sorry you are going through this 😘

    Hope it all works out good for you πŸ’

  • Wow Danna....which drug caused all this? Did you have lung problems before you had the ??? Infusion?

    What explanation does your Rheumy give you for such a terrible reaction?

    As I said to,Jillyanne...ii had two RTX infusions in October & so far I am 90% pain free & going on to have two more in April.

    I do hope the doctors can deal with all the terrible symptoms you are having.....try to be positive ..even though I am sure you are very wary of any more medication.

    AC

  • Dear Ac, I was pain free as well, but sick as well. It seens like all the Bio drugs have had serious side effects on me. I never had lung disease until the methotrexate. My doctor doesn't listen to me and leaves it up to me on the types of medicine i want to go on.. After all of this I am going to start taking action Take control over my own body. ,,,Danna

  • My rheumatologist always discusses with me the reason he is putting me on any drug & and he asks me if I have any questions .

    Luckily I only felt a bit queasy after the second RTX infusion,.....we'll see what happens in April!

    With something like RA which could last a lifetime you shouldn't just be choosing a drug at random,

    I don't know anything about how to choose RA drugs.

    That's Why rheumies train for years...to know which drug to, treat an individual .

    Can you change doctors......a new start might help?

    AC

  • sorry to hear this good luck

  • I've just been put on Cimzia after Enbrel quit. It is another anti-TNF inhibitor. I asked my doctor how it's different. "It's PEGylated," he said. Well whoopdedoodaday, I thought. But he explained further that it meant that the molecules were bigger and therefore hung around for longer where they were needed. I believe it it is working better, but it's only been a couple of months, and it is a two week wait between shots, and it doesn't quite stretch all the way.Rituximab was originally developed as a cancer wonder drug, now they find it works for this as well. I don't know its mechanism of action.

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