Hi there eveyone

I am starting on Rituximab next week with my first infusion and I am a little nervous to say the least!

Just wanting to know if anyone who is on it as any info on side effects etc. As we all know some Consultants/Specialist Nurses seem to gloss over the bad bits and only tell you about how good these drugs will be for you, sweeping under the carpet how the side effects could effect you. Most of all I would really like to know how well this works for most people - even though I do know that everyone is different - it would be nice to think that this drug will be different to the seemingly endless others that have so far failed to live up to their billing.

I would be grateful for any of your insider tips.

Thanks a lot

18 Replies

  • Hi Bakbre

    I had my first RTX infusion in April 2016.......I came out in a slight rash half way through so was given more anti histamine in the drip & all went fine after that. Two weeks later ...having been fine ...I had the second infusion....that also went well, but a couple of days later I felt a bit sick & fluey. I saw my Rheumy & he "guessed" - before a blood test - that the RTX had acted too quickly and depleted my B cells too fast....turned out he was right & by the time I got the blood results I was feeling fine & started to feel much better.

    I go for my next infusion (4th) next week.

    RTX has been really good for me...this last time it seems to have worn off a bit quicker & for the last month I have been a bit achey, but nothing I couldn't cope with....I'm still thought to be in remission. I take no meds at all except the odd paracetamol or Naproxen for OA....& now VitD through the Winter.

    The infusions can drag on ...I'm down to 6 hrs now....but we get numerous offers of cold & hot drinks,& a packed lunch. I usually sleep a lot, but with TPR every 30 minutes you get woken pretty regularly. I drive myself there & back for the infusions & feel completely find doing that.

    Good Luck, I hope you are as lucky as me.....I have been able to get on with my life on RTX,


  • Thanks a lot for your reply - it has made me feel less apprehensive.

    It would be wonderful if I could stop taking all the tablets I take, Hydroxy, Lefludomide, Gabapentin, Omeprazole, Alendronic acid and the steroid Prednisolone, even for just a little while. Honestly sometimes I forget what Iv'e taken and when!

    Anyway thankns once again

  • Your're very welcome...I stopped all meds & was just having Depomedrone injections before I started RTX as they were making me so I'll......but not helping the RA at all.

  • Hi there , i am hoping to get my 4 th round of rituximab around xmas . I had severe gastritis and i was in bed for over a week the first time . The nurse thought it was due to the steroid and since that i remind them to slow the rate down and i have been fine though im i am very tired for a few days . It had really made a difference to me as i can function much better and don't feel so ill . My white cell count has dropped badly in the last month and my gp has really been on top of it . I have to stop plaquenil for 2 weeks and after a week it has gone up a bit so to get checked again and hopefully go back on it next week . So it is important to keep on top of these issues when going through treatment. I hope all goes well for you , please let us know how you get on . Best wishes 🌸🌸🌸

  • Thanks for the info and also for the kind wishes. I will certainly let you know how things go.

  • Hi there

    You asked me to let you know how I got on with my first infusion.

    Unfortunately I had to go to the dentist with a bad toothache and she prescribed antibiotics because I actually had an infection. I rang the Infusion suite at the hospital and they told that if I had had any infection whatsoever and had taken antibiotics there had to be a 2 week gap before I could have the Rituximab, so they had to cancel my appointment. They have made me another for the 4th December, so again it's a waiting game.

    It seems to be a saga but keep your fingers crossed I can have it on the 4th and I can let you know then.


  • Hello Bakbre,

    I was offered Rituximab last year (May2016) when it still an experimental drug on trial. At the time I was recently diagnosed with SLE and lupus nephritis (class 5) following a kidney biopsy which proved positive.

    At the time I was so unwell and stressed that I opted for immediate established treatment i.e. Mycophenolate mofetil and prednisolone. Still on the tablets probably lifelong plus others!

    The iv infusions and hospital visits scare me😞 but Rituximab as you know is a monoclonal antibody and seems a more natural treatment with fewer side effects as opposed MF which is actually an immunosuppressant prescribed for transplant patients to prevent rejection. Excessive flatulence, nausea and fever are some of the more unpleasant side effects.

    Rituximab has produced dramatic effects in some patients and has good medical reports recently. Who knows? I may be offered it at my next consultant nephrology appointment?

    I found Chpt 22 in LUPUS: DIAGNOSIS & TREATMENT pub LUPUS UK 2009 formerly known and published as Lupus - a GP GUIDE TO DIAGNOSIS. Each chapter is written by a specialist/professor. Not too technical and can be understood by intelligent lupus sufferers and the lay. Regards, phillippo

  • Thanks for the info re the rituximab. I can understand how you feel about hospitals because I am the same but I also absolutely hate needles and injections of any kind! I am praying that it works.

    I hope that you are feeling better now.

  • Hi there

    My 18yr old son had his first infusion for lupus nephritis class 4, 9 days ago. Not one reaction during or after it! Next one next Tues. Praying it works for his SLE (just diagnosed end September).

    All the best!

  • I do hope that it will also work in my case. At the same time as I am praying that it will work for me, I will say a little prayer for your son as well -18 is very young to go through this awful disease.

    Thanks for your kind thoughts.

  • Hello. I was put on it a couple years ago for RA and although the process in the hospital is always daunting the benefits for me have been amazing. I still hate going but would second guess it as it has given me my life back. Still not in remission but able to work and dress myself- so a win for me there.

    Just let the nurses know you are nervous and they will be careful. You will get to know them as if it works you will be back regularly. Good luck!!!

  • Thanks for replying, it has helped to put my mind at rest. I sound like a real baby and normally I am not but the thought of injections/needles have always terrified me (I have been known to pass out at the sight of a needle and that was only for a blood test!)

    I think that this will be worse and like you say very daunting but if it works I will put up with the needles. After 2 years of trying lots of different drugs,each of which didn't work, I am praying that this does the trick.

    Once again thank you.

  • Hello, my boyfriend had 1st round in August/September (4 infusions) and we were also quite scared and did not know what to expect, so I know how you feel. First thing: the process is really fine, nothing to be afraid of. He had no problems, except of 2nd one i.e. third week. I have read that the second in the first round is the hardest and it was true in his case. He got extremely tired and had fever (39 degrees). But, actually, the bad part was the fact we didnt know if these were side effects or he got ill. He was hospitalized, got infusion and felt better within an hour. They found out that the he felt probably bad because of lupus fighting, since Rituximab had yet not been working but his Mycofenolat had been already out. So what is good to be ready for is, that if you will feel really bad, go to hospital (no need to unnecessarily suffer, they can help you), just to be sure everything is all right, but dont panic, it is probably only very short transitory phase, it will go away and you will feel better than for a long time before. Except of this, everything went completely smoothly, just bring a book or funny friend, because it will take few hours. Since then it is amazing, his health condition is incomparable with the situation before Rituximab, but we are still only waiting for first results, so we will see. Good luck and dont be scared, you are definitely doing good step for your health!

  • Thank you for replying, it was very kind of you. I am glad to hear that your boyfriend is felling better and I am hoping for a good result also.

    Thanks once again

  • How did you get on? Have you gone yet?

  • Unfortunately I had to go to the dentist with a bad toothache and she prescribed antibiotics because I actually had an infection. I rang the Infusion suite at the hospital and they told that if I had had any infection whatsoever and had taken antibiotics there had to be a 2 week gap before I could have the Rituximab, so they had to cancel my appointment. They have made me another for the 4th December, so again it's a waiting game.

    Thanks for asking though, it is very kind of you and really appreciated.

  • What is it for? We never hear of that drug in the United States

  • The best thing to do is go on to the Internet and type in Rituximab or Biologicals but I will try and put down here what I have been told.

    The ones we have had up to know are called DMards I believe but the Rituximab is in a new breed of drug called Biologicals, which work in a completely different way. As far as I understand it the DMards suppress your immune system so it doesn't attack you but the Biologicals actually kill the B cells slowly. It is quicker to get into the system and apparently in trials it worked in about 78% of patients. It also has the benefit that if it does work it can last (according to my specialist nurse) for anything up to 2.5 to 3 years. It was produced originally for Rheumatoid Arthritis but it has shown benefits in other auto immune diseases. I have UCTD and RA so hopefully it will benefit both.

    Hope that helps

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