So so scared of Rituximab!

patacake
patacake Member Posts: 6
edited 26. Sep 2014, 13:44 in Living with Arthritis archive
Hi,

I've been living with RA for a few years now, gone through various meds so far and am currently on Enbrel. Unfortunately i've been getting far too many flares so my rheumatologist is now considering Rituximab. I've read lots on the internet and many posts here but the whole thing is just so frightening. This seems to have taken over me and my life so quickly. Outwardly i still try to be cheery calm person everybody expects but inside i'm so scared. I have two teenage daughters who raise their eyebrows when my excuse for not doing something is relative to the arthritis. On one hand I need them to understand how hard this is, but on the other I dont want to frighten them. My husband is lovely, I love him dearly, but he treats me like an invalid sometimes and I dont feel like he sees me as his wife anymore, just someone he's got to look after. I need to talk to someone about how scared I am who knows where i'm coming from. Am I going to be able to keep working on this treatment, should i just stick with Enbrel (i've been told i cant go back to it if the rituximab doesnt work?), how am i going to feel, what are the long term effects/outlook???????? :cry:

Comments

  • barbara12
    barbara12 Member Posts: 21,257
    edited 30. Nov -1, 00:00
    Hello patacake and a warm welcome to the forum
    I wont be much help has I have OA be it in most joints...but many on here will say they have to tell you all the scary stuff and its not always like that..it is hard on our family's..I have to stop my OH doing things I can and not letting him take over although he really means wells :)
    I am sure someone will be along soon to advise on the meds and you will find it helps to talk things through with us...we all have our own pain so really do understand..
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's unusual to hear from you so I guess you are struggling very much with this. I am not sure what I can say to help but maybe a first step is for your daughters to read 'There's a Gorilla in my House' and 'The Spoon Theory' so at the very least they stop raising their eyebrows (something at which teens excel but this is not appropriate). I am aware that the teenage years can be difficult ones but it is also the time that the process of maturity begins and showing trust in one's offspring is part of that. Arthritis is not an excuse, it's a reason why we sometimes cannot do what we wish. and why others have to step in and help.

    I know what you mean about the 'invalid' thing, the only time my husband has looked after me is post-op, I manage during flares (which are relatively rare now thanks to triple therapy) but I am lucky in that it's just us, both in our mid-fifties and used to each other. My PsA began the year we married so it's been the 'extra' in our relationship all the way. My husband feel helpless because he cannot make things better for me but, as I tell him, no-one can and that's my burden, not his.


    I hope you keep your internet research to reliable sites. I have never checked my meds on the web, just listened to my doctors and weighed up the pros and cons for myself. Enbrel tried to explode my liver so I'm not its greatest fan but others on here swear by it. I've done infliximab too, now I'm on humira (supported by injected meth and sulphasalazine tablets). Obviously I would prefer not but this triple therapy has brought my PsA under some control and that is the important thing. I have joint damage in my knees and ankles which has led to OA, and that is now affecting my hips but that is because I began the meds far too late for any true benefit to be found.

    Side effects are not guaranteed, they are listed to protect the companies which manufacture the drug from lawsuits, end of. I have always blithely assumed that side effects would not be a problem and (until the Enbrel) they weren't. All of these high-duty meds sound very scary but what counts is this: if they improve the quality of your life (and ergo that of your family too) then they are worth it. We are also closely monitored when on these things and I for one was grateful for that.

    I can't help you make the decision, nobody can, but please come on here and nag it over with us: we know what it's like and it's damned difficult at times. I wish you well. DD
  • stickywicket
    stickywicket Member Posts: 26,700
    edited 30. Nov -1, 00:00
    Patacake, RA is very tiring in itself but doubly so when we struggle to present a different face to others in order to protect them from our pain. Sometimes it's necessary. I see my RA as my problem but one which inevitably affects all those close to me. If we love someone their pain hurts us, end of.

    I guess we each have to work out for ourselves, in conjunction with our families, how we deal with our arthritis. My husband has always known he'll get very short shrift if he tries to treat me like an invalid. On the other hand, there are days when I have to tell him stuff's bad so would he please do a, b and c. When my sons were at home, as teenagers, we made some plans eg I did their washing (not too difficult) and they did my ironing (very difficult). If they wanted to eat at odd hours they cooked it and, if they made a lot of mess, they cleared up too. I don't think teenagers frighten easily. My two coped well with my breast cancer when they were teenagers. We just gave them each as much info as they asked for and no more.

    Can you explain what you mean by your husband not seeing you as his wife anymore? That sounds so sad.

    I get the impression that the fear about the rituximab is actually an accumulation of lots of other fears too. All our meds are scary and every new one is very scary. However, if the disease is not under control we just have to bite the bullet sometimes. Uncontrolled RA is scary too.

    We do know where you're coming from, patacake, so if we can help, please continue talking to us and / or, if you'd like to chat with our helpline people, just give them a ring.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello again, how are things today? DD
  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
    Patacake - that was such a sad post. I hope you come back and talk to us. Fear is more than understandable because it sounds like you feel backed into a corner a bit and quite alone. Your husband doesn't see you as a wife and your daughters are raising eyebrows - how do you see yourself? Focus on how you feel about you (not the prospect of rituximab) and find a way forward from there. You are still a wife and mother and a worker, those are three amazing and hard things to be. Why doesn rituximab scare you more than enbrel? I'm just about to start on enbrel and after an initial moment of :o I decided it was all less frightening than unchecked arthritis and it's side effects and consequences.
  • patacake
    patacake Member Posts: 6
    edited 30. Nov -1, 00:00
    Thank you all so much for your messages. Its lovely to know you're all out there! I'm going to try find the books for my daughter's to read. I've tried to only look briefly on the web re meds but it's hard to stop sometimes! I don't want this horrible thing to define me and I try to carry on regardless but I do understand that this is my choice and without the meds life would be extremely different.

    Well, must go now as have sick daughter in bed ATM so back to being a mum! Thank you all again and as the big man said 'I'll be back!'
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I am sorry, I didn't make it clear, they are not books, just articles on the internet so easily found and printed. I hope your daughter feels better soon and yes, please come back because we do understand how complex living with arthritis can be. DD
  • stickywicket
    stickywicket Member Posts: 26,700
    edited 30. Nov -1, 00:00
    If you want to check things on line stick to trustworthy sites such as this one, NHS Choices and ARUK. Hope your patient recovers soon :)
  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
    hi patacake , alot of us are in similar position , myself been on Enbrel , Simponi & now on tocilizumab for last 8 months , but my doctors want to put me on Rituximab & ask to stay on this drug a bit longer ( early next year )

    the side effects from Rituximab do seem scary compared to tocilizumab which I have had no side effects from but it comes down to how well its controling your RA , talk to your rheumy nurse as they will have several people on the drug , you could try arthritis research UK & National Rheumatiod Arthritis Society websites for information

    as sticky said "Hope your patient recovers soon"

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