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Rituximab anxiety

Posted , 11 users are following.

jessica94999
jessica94999

Hi I am due to have my first infusion of Rituximab and am really anxious because of the risk of fatality that comes with it, has anyone else felt anxious about going on it. Also does anyone have any experience of the infusion and how you feel after it and whether I'll be ok to drive as i am going on my own to the hospital. Does anyone know how you feel in the days following the infusion as I work and will need to be at work on Monday. 

1 like, 16 replies

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  • frances85589
    frances85589 jessica94999

    Posted

    Hiya Jessica,I had my first infusion on friday.was given 2 paracetamol first then had canulla put in right arm.was then first given steroids and piriton through it.piriton to help with side effects.then when this finished and having to wait awhile the rituximab was given.was checked now and then for blood pressure and pulse.once did feel heart racing but all went smoothly but took 9 hours.I have felt drugged up now and then and legs heavy but I feel like that alot anyway with all drugs I am on.just wish I hadnt had to give up work but struggle to even do daily tasks.Its 4 days now gone and the steroids havent kickedin.just hope THIS one works cos others havent.wish you well.
    • jessica94999
      jessica94999 frances85589

      Posted

      Hi Frances

      Thank you so much for replying it is good to talk to a fellow sufferer and one that has just started on Rituximab, I have exhausted the list of drugs including methotrexate which caused fits and I now have to take a daily fit tablet, I then moved onto the anti tnf embreol the success of which was short lived, i did intially refuse Rituximab but the funding board would not allow funding for alternative drug as the condition is to bad for that to work, so I have been left with no alternative than to accept Rituximab as in the last 6 weeks I have been in hospital with cellulitous and now have a 7cm bakers cyst sitting behind the right knee which makes doing even the simple of tasks difficult and very painful and has also affected my mental wellbeing, a side of things that the consultants dont seem to take into consideration as being part of this condidtion. Sometimes I feel like a guinea pig in a medical trial as all these latest drugs have limited data on them, but that said i dont feel I have any choice than to accept what they offer in hope that I can get around and continue to support my children and grandchild as im a single mum. I do hope that you start to feel the benefit of the sterioids soon and that this drug works for you. it would be good to stay in touch and find out how we are both responding to it. Take care of yourself.

  • achybones
    achybones jessica94999

    Posted

    Hi Jessica. Please try not to worry, although I know that this is easier said than done! All of these biological/DMAD drugs have serious listed POTENTIAL side effects. I had the same experience as Frances, and apart from the exhaustion, headache and achy joints, experienced no other side effects. Unfortunately, it didn't work for me. But it has done wonders for others. In fact, this is the medication I had the least trouble with, ironically. I have had to make the difficult decision not to try the newest treatment, abatacept, as I can't personally risk my health further. But that is my choice. Good luck!
    • frances85589
      frances85589 achybones

      Posted

      Your reply to Jessica was lovely.was interesting to see you mention abatacept.if rituximab doesnt work for me I might be offered it.Can the side effects be worse then as I see you are refusing it
    • achybones
      achybones frances85589

      Posted

      Thank you for your kind comments Frances smile I hope that the rituximab does work for you. The abatacept was suggested by my consultant two weeks ago as a last resort. Unfortunately knees are totally gone, so in power chair now, but he asked if he could refer me to orthopaedic surgeon to discuss possible knee replacements. The problem is that I live alone and having just turned fifty, I have had 13 years of this disease with no chemical remission. My body will not tolerate methotrexate in any form, as my liver reacts to it. Many of the DMARDS are suggested to be only given along side methotrexate. Although I have had four different ones, where they have let me try them. i take each day as it comes, and my family think that I underestimate how ill the side effects from three of the medications have made me at the time. No one as taken abatacept at my hospital and it seems even more experimental than the others. I just feel that I can't take the risk of losing more independence at the moment. I haven't given up, but I need some time to come to terms with my latest news I think. Gosh, I have gone on a bit here. Sorry smile
    • frances85589
      frances85589 achybones

      Posted

      Oh bless you.you have every right to go on.I also cant take methotraxate anymore as it irritated my liver.on sulfasalazine.have tried humira and embrel with no luck.I do wish you well.Life can be so cruel
    • jessica94999
      jessica94999 achybones

      Posted

      Dear Achybones, thank you for your reply and the list of symptoms you suffered following your infusion, its good to know from someone that has been through it rather than reading a leaflet that quite frankly petrifys me. I am sorry that it was not successful for you and fully understand where you are coming from in respect of the next drug and admire your decision, one I know from personal experience would not have been easy to make. I hope and pray that an alternative drug is made available to you as surely they cannot leave you without any kind of drug. Take care of yourself.
    • wendy09342
      wendy09342 achybones

      Posted

      I was on Abatacept for years and had no side effects. I encourage you to try it.
  • maryann62350
    maryann62350 jessica94999

    Posted

    Hi Jessica.  I feel the same anxiety about these infusion drugs.  They delete your immune system even more than Demards. I hope you do what is Right for you. My best to you!
    • jessica94999
      jessica94999 maryann62350

      Posted

      Hi Maryann 

      Thank you for your reply yes that is one of my worries the effect it has on the immune system but know I am left with no alternative at this time than to try this drug. Thank you for your best wishes take care of yourself.

  • Light
    Light jessica94999

    Posted

    I've been on Actemra once and I did have side effects though nothing lasting – manageable ones: a 3-day flu-like symptoms and some strange skin colouration. Your doctor should have briefd you on what to expect... I do hope so....

     

    • jessica94999
      jessica94999 Light

      Posted

      Dear Light,

      Thank you for your reply. No my consultant has given no further information than the leaflet they provide so hearing from another person who has been on these drugs is so helpful, Take care

  • bill12447
    bill12447 jessica94999

    Posted

    Jessica

    I have been on two different biological drugs for RA for years, and am still on them. When I started I had to sign a form to say that I understood the risks of the drugs potentially being carconegenic. I have to admit it took me a week to say yes. At the time I had exhausted all of the mainstream drugs so I started on Infliximab when it first came to the UK. That was an infusion with a full day in hospital but my it was worth it, from being a person who did really struggle with RA in almost every joint, to almost pain free, virtually overnight. I have since moved to Etanercept (Enbrel) as it is easier to self inject and involves no time off work. I can't say if the drugs will work for you but can only tell you of my experience. As for side effects, I can honestly say I have had none. I hope all goes well with the infusion.

  • jaan-mari44824
    jaan-mari44824 jessica94999

    Posted

    Hi Jessica

    I am about a year late on your post, but since this time last year i have had the same struggles about Rumaxitab. I live in South Africa and here it is given in High Care to monitor for possible adverse effects. When my dr suggested it I saw it as new hope but had to carefully explain pottential side effects and risks to my husband. I am 35 and have an 8 year old little girl. I do not suffer from RA as you do but from a severe degree of Sjogrens syndrom that has affected my kidneys so far and started leaving me with joint pains when flaring up. I have suffered with this condition since my daughter's birth and have never been able to show her who her "real" mommy is. I had my first infusion on 7 July 2016 and the second on 25 July 2016. After the infusion days i felt slugish and generally unwell, but was able to work the next day. But every day got better and better after the infusions. I had no body aches no confusion, no head aches. I felt like my old self again. Yes I do have to avoid sick people and get more shots now, but it is worth it. In December i had a flare up again, but it was not nearly as bad as the previous ones. Today I had my third infusion, i am feeling sick and in bed, but I hope that tomorrow the sun will shine brighter again. Good luck with your choices. I hope you find something that makes your life worth it again😘

    • wendy09342
      wendy09342 jaan-mari44824

      Posted

      Hi Jaan-marie

      Please can you tell me how long it took for the Rituximab to work. I have both Sjrogens and Rheumatoid Arthritis? It's 7 weeks since the first infusion and 5 weeks since the second infusion and I don't feel one scrap better.

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