Hi, I am new to this but would really like some help or advice in regards to Starting the rituximab infusions? How safe is this medication and effective? I have been on methotrexate combined with Etanercept injections for about 7 years and stopped methotrexate as it causing me bad side effects. Having stopped this for a year I was managing fairly well until last month I have been very unwell with flare ups and new joint damage in other areas of my body. I am worried about which medication to try next whether I should try methotrexate again or start on rituximab infusion. Any suggestions or advice will be very much appreciated.
Rituximab infusion : Hi, I am new to this but would... - NRAS
Well my husband had first infusion last year. No side effects. Think he only realised how well it worked when it began to wear off. Had to wait ages to get next infusion to be organised.
Unfortunately he had last infusion at the end of February.... although his joints are great, he has to shield. Your immune system takes a hit. Just bad timing I guess. But I would take advice before you have it, this covid 19 isn’t going anywhere soon.
Hi , sorry you are suffering. I have been having rituximab infusions every 6, 9 or 12 months for last 12 years combined with low dose methotrexate injections. Rituximab has been my life saver. Not really had side affects from it. I had my last infusion 3 days before lockdown!
I know it doesn't work for everyone , but it is worth a try .
I have had RA for 26 years and tried all sorts of medications.
Hope this gives you a bit more confidence to give it a go. Best wishes.
I’ve Had RA 20+ years... been on Rtx since 2016 ...I have tried twice to go beyond six months and flared within a couple of weeks both times...so I really hope I get my infusion in July......I can’t take Mtx.....so will just have to grin & bear it...it has been such lifesaver...I don’t want to switch drugs ..so painkillers will have to do the job.
Hi, your story sounds the same as mine but I’ve been on ritx infusions for several years and it’s been very good for me, have had the odd hiccup through becoming complacent, I am usually good for a year but last time left it 18 months and ended up back on prednisolone, but once you understand the system to get a follow up without becoming too riddled you can lead a fairly normal life, it is a learning curve to understand yourself and deal with an ever changing personnel in the nhs
Hope this helps
A friend of mine has just had it confirmed she can have her 4th set of infusions. Because of Covid, she was afraid they wouldn't allow it. She swears by Rituximab and is very relieved, although anxious. She is very high risk from Covid partly due to Rituximab, but she also has COPD, and a heart condition.
Hi , I have been receiving rituximab infusions for the last 4 years I have not experienced any side effects and have benefited greatly from them. I find that if I have them twice a year it gives me about 8 good months, I find it takes between 4-6 weeks to kick in. I also use 20mg methotrexate by injection weekly. This helps me maintain a reasonable way of life I would recommend that you give the infusions a go if offered. Good luck
Thank you. As I’m currently taking Etanercept injection I’m wondering if it be better to continue that and go on rituximab if they start me on it rather than methotrexate as I couldn’t tolerate it very well towards the last year. I will speak to the specialist and see what they suggest. But feel more confident with considering rituximab.
Rituximab has been my saviour after two years battling with R.A. and having adverse reactions to the other DMARDS. I have not experienced any side effects whatsoever but the sheer joy of feeling almost “normal” again has been wonderful. The downside of the drug is it makes you more susceptible to infection than most, which is not ideal at the moment. It’s why my next dose got delayed and I’m having to shield atm but I hope to get my next infusion in early July. Bring it on!
I have not been able to take Pred for years..did try it again with first Rtx infusion- but it has such awful effects Rheumy said OK with out...& I now have very good good life on Rtx.
But I’m not complacent ....I had seven very good Years on methotrexate and thought I was set for life ...but I wasn’t ...so now I’m just thankful for every pain free day.
I really hope you do manage to get off the Pred.... it really is the Drug from hell.
Out of interest, would the majority prefer to have Rituximab ,and have to shield ?
Although I don’t personally have to shield, it seemed easier for my husband & myself to both shield. The idea of him staying in one room etc seemed unbearable. I have to say I’m climbing the walls. Haven’t left the house / garden since the 17th March...
I have been on Rituximab since 2006 - the first three pairs of infusions were part of a trial and put me into remission for 7 years. Now they seem to last me around 12 - 18 months, may last being Jan 2019, so I expect to need another fairly soon. However, I am advised that, during the current epidemic, I should avoid another treatment for now. But it should be noted that is advice for me and should not be considered general. As for side effects, all I get is flushing to the upper body the night and following day after infusions. Otherwise it has been a life saver (except for my feet!!)
Hi Flowers. I’ve had reactive arthritis since my 20’s. I’m now in my 40’s. I have iritis & glaucoma too. I’ve been on Infliximab every 6 weeks for 15yrs. Then i had to miss a couple of infusions, as i had 2 ear infections. Unbelievably painful. Had to go to a&e. The right eardrum perforated the infection was so bad. I had 2 lots of antibiotics. That’s why i couldn’t have the treatment. (My right ear still isn’t normal. Plus i now have an infection in my left ear again. But i’m on antibiotic ear drops).
I’m writing this. Because i understand you’re bound to be nervous at starting a new Immuno drug. I thought after i stopped the drug for a couple of months i’d be a bit sore & stiff. But my God. This drug is a MIRACLE. When i was off this wonder drug my vision was deteriorating so rapidly. I couldn’t see the pavement. I was so scared to leave my flat. Loads attacks of iritis. But my joints. I was literally bedridden. The pain was indescribable. From my feet, knees, hips, back. Everything. I was using a stick. I walked like a 90yr old. I was on steroids, strong painkillers, stuff to protect my stomach. I felt sick the pain was so bad! I was put on Humira. I was injecting myself. But was told it could take 3 months to get into the system. It did nothing for me. Made me alot worse. I’m still having my infusions. Although i did have a break from it, as my gp thinks i had a mild version of this awful virus. My Rheumatologist actually thinks, the infusion might have helped me fight off the virus, as it’s meant to stop inflammation! He thinks it stopped my lungs becoming inflamed. Their thinking, is, it would be an extra thing for your body to fight, if you have another flare up of arthritis. So my hospital UCH are still doing infusions. They’re not stopping them & my God i’m so grateful. Like i’ve said. I’ve had this bloody painful disease 27 yrs & that last flare up i had was the worst pain i’ve had in my life!! So go for it & try not to analyse it too much! Just be grateful they’re offering you some sort of treatment & good luck! X
Thank you for your message. I’m really sorry to hear that you’ve gone through so much. I do feel more positive in considering the rituximab. They offered me this about 6 years ago but I was too afraid to start it, luckily the methotrexate and Etanercept injection actually started to work and help my joints for the last couple of years, but now methotrexate was affecting my liver and make me feel worse then usual with sickness. I stopped methotrexate for a year, and was fine, until last month I’ve had a sudden flare up of all my joints. I already have permanent joint damage in my elbow and hands and fingers and now noticing more damage happening so fast. I’m just not sure if they will have me start on the rituximab now with the situation we are in or if I should go back on methotrexate maybe at a smaller dose. They have given me predinsolone (steroid tablets) to take for 6 weeks but I’m still worried I am have more joint damage whilst waiting for what to do. I will speak to the specialist and see what they advice.
Hi Flowers. Sounds like you’ve been through alot too. This is a horrible disease & makes you feel old ‘before your time’. But thank God we can have some sort of relief. I was on steroids with my infusion. But i hated them. I started to lose my hair on the crown. So i asked them to stop it. I sound vain. But hair’s important! Like i’ve said. They’re still treating people at my hospital. Hope they’ll know what to suggest. I’m sure they will. Good luck & this forum’s great. You can come on here, day or night. Someone’s bound to be up. We all know how you feel. Especially at the moment. We’re all feeling vulnerable. We all wish you well. X
Thank you! Didn’t expect the responses but it’s made a world of difference to know that there are other people that understand what we going through. I had lost so much hair being on methotrexate and even now that I’ve stopped it it’s still light. It’s ashame but I guess we are lucky that there are treatments out there that can help.
Yes they suggested this a few years ago for me but the methotrexate combined with Etanercept was working, I then went off methotrexate due to side effects and was fine for a year, now they suggesting something different, they mentioned rituximab before this whole virus thing had started, and they also suggest I could go back on methotrexate.. just not sure what to do
I had my first set of infusions last December. The only side effect I experienced was a severe headache that started during the night after my first infusion. It was bad enough to miss work. I decided that dehydration was the cause. I hydrated much more the second time and had no problem. The med seems to have worn off for me at about 4 1/2 months, so I am really ready for my next round which hopefully happens in June.
All the best to you!