New positive feedback Rituximab

[Tessthomy]

Hi 👋 all you RA-ers. Just looking for updated positive feedback on Rituximab. I Have been on Embrel for 6/7 years which worked wonders but has not started to lose efficacy. I am also in sulphasalazine which has also been excellent..my Rheumatologist has suggested Rituximab as she says it’s the next one she thinks will be good for me. Other feedback on here regarding this drug seems a few years ago so just wanted some upto date positive feedback. Thanks TTx

[3LittleBirds2]

Hi Tess...sorry but too tired to write a long post but there are lots of us on here that have Rituximab. I would say if you’re being offered it...go for it! 😊. Sorry will try and respond more tomorrow or check my Rituximab posts out...there is up to date stuff on the site however but not sure how you’d find it. Xx

[Tessthomy in reply to 3LittleBirds2]

Thanks littlebirds for even replying when too tired. ! Fatigue is definitely one side of RA that I find debilitating! I’ve had a search but finding upto date stuff on a specific thing is proving a challenge maybe if I start following you!? TTx

[3LittleBirds2 in reply to Tessthomy]

Hi Tess, I’ve had three cycles of Rituximab so far. The first cycle took ages to kick it about 16 weeks and then only had relief for 4 weeks. But the second two kicked in more quickly and had relief for a year...no need for extra steroids etc just painkillers but for damage I already have!! It’s given by two infusions which for me take a long time about 7 hours each but it doesn’t worry me as can relax and eat rubbish...I react if I’m given it any quicker but others are different and sail through it!! I’ve had infections on and off since August and a sinus infection that has been hard to shake off since Xmas but it’s swings and roundabouts...improves the RA but you get side effects?!! Having said that lots of people have had these nasty bugs this winter. Anything else you need to ask please do...but as I said if you’re being offered it definitely consider it?! 😊 xx

[Tessthomy in reply to 3LittleBirds2]

Thanks for all of that. When you say you reacted when you had it so it took longer what reaction did you have? I don’t mind the length of time it takes to do the infusion it it works! I’ve had hardly any infections on embrel and I’m really sad it’s started to lose efficacy as it’s been brilliant. I just hope Rituximab works as well and I also don’t get too many infections .. such a bore that we have to go through all this but as I always say there’s always worse diseases to have. Not much of a comfort though!!

[3LittleBirds2 in reply to Tessthomy]

Hi Tess...you’re welcome 😊. They increase the speed of the infusion slowly and if you cope with it you can usually have the second one at a much faster speed.. done in 4 hours as oppose to 7 for me!! I usually react when the speed goes up to about 125 but after an extra shot of anti histamine and stopping for 45 minutes I’m ok to continue doesn’t usually happen on the second one but they still do at a slower speed. My reaction is itchy ears, chest and back with a red hot face it’s fairly common but then also a lot of people are fine, I’ve sat by people who are done and dusted in 4.5 hours...but I don’t care as long as I get it safely!! I was on Enbrel too and had a slight reaction with that a rash on my tummy where I injected but apart from that I got on fine with it but sadly it wasn’t enough to get my RA under control.

[Tessthomy in reply to 3LittleBirds2]

I see. It’s so interesting to hear how you have got on with these drugs. I guess we all react differently. And thanks again for that info. I literally have no idea how it’s all going to go and it’s the unknown is scary but It was same for embrel.

One step at a time. Due to see nurse tomorrow. 🤞🤞On the plus side.. hopefully at least ball will be starting to roll as I have my first grandchild due in 4 weeks and so want to be well for that little delight 😍😍😍

[3LittleBirds2 in reply to Tessthomy]

Exactly!!! Hope it goes well tomorrow...let us know how you get on? I’m sure you will be well for your first grandchild arriving and something to look forward too 😍. Good luck xx

[3LittleBirds2 in reply to Tessthomy]

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[AgedCrone]

Hi...I have been on RTX since 2016......very successful......so far. I was diagnosed in 1999 & went through all the usual Dmards.

Only side effect so far has been a couple of sinus infections...& despite having the vaccination I had flu in January....but I'm willing to cope with those niggles as my RD pain is 95% controlled....I just take the odd Paracetamol & Naproxen.

[Tessthomy in reply to AgedCrone]

Thanks agedcrone. I’m really a bit nervous about the whole immunity thing as my consultant said it attacks different molecules to the ones that etanacept does. Which means I could be more prone to infection than when on etanacept. Flu sounds nasty. I guess we all have to take precautions as in hand washing and staying away from germs but I realise this is unavoidable sometimes. Sounds like the Rituximab is doing it job though. TTx

[AgedCrone]

I think if you are going to get flu you will jolly well get it. However I do wonder if being on RTX was the reason I succumbed this year?

I had the influenza vaccination, & I had never had flu before. I was really careful ...I drove everywhere.....no public transport ...went to supermarket at 8am before the crowds & their germs appeared,(yes I could order on line,but I like to choose my own fresh foods) ...had antiseptic gel in car, handbags & house...& I had flu for two weeks. Go Figure!

But if having flu is as bad as it gets I'm content to stay on RTX. Just a bit of inconvenience going for infusions every six months is a price I'm wiling to pay.

If you do go on to RTX I hope it's successful !

[Tessthomy in reply to AgedCrone]

Yes if you’re going to get it you’re going to get it. I’ve had flu two or three times in my life, glandular fever and pneumonia, ! maybe because you hadn’t had flu before this is why you succumbed. But yes a small price to pay with everything else in mind. They have said if it works it could last a year/18 months.. but again a small price to pay for even 6 monthly visits if it kicks RA in the butt!!! TTx

[CloudTreeDrive13]

I've been on Ritux for a while now. You would normally have an infusion every 6 months but I went a whole year before I felt I needed one. Was sick with taking methotrexate as well so stopped and just take Leflunomide. So take it and see how you go. We all need to find the right combination of meds. Yes, I know .... Easier said than done lol. Take care xxxx

[Marycullen in reply to CloudTreeDrive13]

Wow, I am on Rituxan for the second time and I have to have it every 4 months. About two to three weeks before the infusion sometimes I need an injection of steroids. I hope this keeps working because the only one I have not tried it Simponi.

[Pam-51]

I have been on Rituximab since 2008, Methotrexate and prednisolone for over 30 years. Rituximab is the only drug Ihave been on that provides adequate relief. However, it is not without problems. Immunosuppression is a major issue and for the last 2 years I have needed infusions of immunoglobulins to supplement my immune system.

I developed a condition called hypogammaglobulinaemia which caused multiple infections. I believe this condition to be caused by the use of Rituximab and the research would back this up. I couldn’t have coped without this drug but this side effect is life changing. I have had shingles 5 times, numerous chest infections and UTIs.

I am currently waiting for an appt with an immunologist to stabilise my condition. Don’t want to frighten anyone but feel one should be aware of this particular side effect which seems to be particularly prevalent in patients who are on Rituximab. Please make sure you are monitored for IGg levels if on Rituximab so that any issues can be dealt with promptly. My IGg levels were low as long ago as 2012 and this was missed by the hospital. It was only when I diagnosed myself that this condition has been treated.

Best wishes all Pam

[Marycullen in reply to Pam-51]

Pam thank you for your reply. I was wondering why my rheumy started having my immunoglobulin tests done. I have a friend with RA and she has to get infusions if antibodies but she is not on Rituxan. I know this is a tough drug and I am scared of all the side effects you have experienced. How often do you get your Rituxan. Mine is every four months. I wish uncoils go a year but my RAnhas been aggressive for the 18 years I have had it. I live in the USA.

[Marycullen in reply to Pam-51]

Pam I forgot to ask you. I have not had shingles yet and there is a new drug for shingles that is not a live virus. Have you had that immunization

[Pam-51]

Had not heard about this new drug. Thanks for the info, will ask GP next time I see him.

Take care. Pam