Rituximab infusion

Karen293
Karen293 Member Posts: 20
edited 17. Jul 2012, 07:57 in Living with Arthritis archive
Hi

I'm new to this forum but I have just started a new treatment called a Rituximab infusion. I had my first infusion yesterday which I knew was going to be a long day but I came home shattered but unable to sleep I think due to the extra prednisolone given.

I wanted to know how other people got on with this treatment. Ive had RA for about 5 years now and have been unable to work due to pain and lack of mobility. Tried 4 DMARTS' and Humira but nothing worked. Fingers crossed this is the treatment for me. :roll:

Karen

Comments

  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hello Karen and welcome to the forum.

    I am also on Rituximab and it is working well for me so far. I will send you a proper reply tomorrow. But just wanted to say "well done" for getting through the first infusion and that the feeling of being absolutely shattered yet unable to sleep because of the steroid infusion mirrors my experience exactly.

    Sorry I can't reply properly now but will do tomorrow when I have more time.

    Thinking of you.

    Tillyxxx
  • lindalegs
    lindalegs Member Posts: 5,425
    edited 30. Nov -1, 00:00
    Can't help but just wanted to welcome you aboard Karen. :D

    Luv,
  • Karen293
    Karen293 Member Posts: 20
    edited 30. Nov -1, 00:00
    Thank you everyone for your kind posts of welcome and support. It is also great to find Tilly who has had the same treatment. Looking forward to hearing more when you are able.

    Karen
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hello again Karen

    Hope you are feeling less shattered after your infusion on Monday.

    Just to say I haven't forgotten you and will post a proper reply later on today.

    Thinking of you.

    Tillyxxx
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hello Karen - me again :roll:

    Righty ho - will try to pen a proper reply now as promised.

    First, just to say that I am so sorry you have had such a difficult time and that I hope that, as you say, Rituximab turns out to be "the one for you". My understanding from the consultant is that Ritux works in a different way from the other biologics so hopefully it will do its stuff for you even though you didn't benefit from the Humira.

    I had my first Rituximab infusions a year ago now and, despite being unable to have the prescribed second doses after 6 months due to other health issues, it has been working well for me so far, with no apparent side effects. I was told at the start that Ritux is not by any means a fast acting drug, and that it could take at least 6 months to know if it was going to help - which is why the associated steroid infusions are an added bonus in terms of helping the joints in the meantime. Like you though, I don't get on well with the steroid infusions and they do stop me sleeping and also tend to make me very depressed for a while afterwards. That said, if the Ritux continues to work well for me and I can go a year between infusions, I reckon it's well worth it! I am aware that, after a year, the Ritux is "wearing off" for me but I know it is still doing something because there is no way I would have managed before with only a "middling" dose of pred and anti-inflamms (I don't take methotrexate alongside, or any other DMARDs). My understanding is that each set of Ritux infusions can last anywhere from 6 - 18 months and I met a lady at the hospital recently who was happily going a year between infusions without any problems at all. At my hospital they routinely do two sets of infusions 6 months apart to start with and they only make a decision on the success, or otherwise, of the drug a while after the second set. That may be standard practice but I'm not sure.

    As to feeling really "wiped out" afterwards I think that is only to be expected - both because, as you have discovered, infusion days are long and uncomfortable and because of the way the drug works. I was told by the consultant to expect to feel "pretty rough" for a while afterwards due, as he so beautifully put it to "B cells dying off all over the place" :shock: but I didn't end up feeling anything like as bad as expected. Just very washed out for a few days.

    I really do hope it helps you Karen and please do keep us posted. There aren't many forum members on Rituximab so I'm pleased to be able to talk to someone else on it too. And given that I'm a couple of infusions ahead of you, if there is anything you think I might be able to help you with, please do just let me know.

    Thinking of you.

    Tillyxxx
  • Karen293
    Karen293 Member Posts: 20
    edited 30. Nov -1, 00:00
    Hi Tilly

    Thanks for getting back to me with your story it was very interesting and gives me hope that the infusion will give some relief. As you say I felt rough for a few days but am now feeling about normal for me. Maybe a little down now and then but that's the pred side affects. Still not sleeping a well as I did but getting better I think.

    At the moment I manage on 10mg of pred a day, methotraxate and pain killers. I gained a lot of weight due to my poor mobility and now reducing this slowly by calorie counting. Although taking pred and with the inflamation I can have lost a few pounds one week and put on six the next! But any weight loss seems to be helping. I just wished I'm done it earlier but my consultant and nurse kept saying wait until the treatment works and then I could build up my mobility and weight loss would be easier and working on getting down further with the pred. But nothing did work up to now and the pounds just pile on.

    At my infusion there were a few other ladies and they were saying like you said that they were only needing treatment once a year. All sounds very promising. As you also said it's not a quick fix and may take many months to kick in but at least hope is still there. Off for another blood test on Monday to see whats going on before the second infusion the following Monday.

    Anyway I'll keep you posted and thanks again for your story and words of support, feeling much better today and up for the fight.

    Take care

    Karen
  • kathbee
    kathbee Member Posts: 934
    edited 30. Nov -1, 00:00
    Hi Karen

    I too had my first Rituximab last year and it did help for a few months, but then I seemed to pick up infections easily. I have had my second lot 3 weeks ago, almost one year apart. I am hoping that this time it helps for quite a bit longer. The rheumy clinic told me I should have let them know how I was feeling and had another dose earlier.

    I found both times that the steroid part of the infusion makes me not able to sleep but at the same time the antihistamine makes me sleepy and not well, at least for the first night or two. So there I am, cant keep my eyes open hardly but am all over the bed unable to keep still. Not good, but a couple of days later I feel ok.
    Its a long time to sit hooked up to a drip for around 6 hours and I get very restless, but I prefer it to having to inject myself as I did every 2 weeks with Humira which caused too many side effects for me. I am still on Methotrexate alongside the Rituxi and I have over the years tried a few other DMARDs - Leflunomide, Hydroxichloroquine, Suphasalazine as well as the Humira.

    Hope all works out well for you.

    Kath
  • Karen293
    Karen293 Member Posts: 20
    edited 30. Nov -1, 00:00
    Hi Kathy

    You seem to have had all the same treatments as me which is great to hear. When I'm at the rheumy clinic everyone seems to be doing so much better than me. So it has been great to find you and Tilly with similar experiences. :P

    I've been lucky so far with not picking up many infections or bad side affects, other then the pred that leaves me nervous for no reason and times I just can't sleep. The Humira looked promising for a few months but then just stopped working. Like you I think I would rather put up with the infusions then injecting myself fortnightly.

    I also tend to just try and cope with the pain and not keep pushing for more consultant appointments. I don't find the rheumy clinic very helpful, they are just so busy I think. However this time reading your story I need to push for more treatment if needed.

    Like you I found the antihistamine makes me feel very sleepy very quickly, but within a couple of hours I was getting over that and the rituximab takes over making you tired and just the restless waiting for the bag to empty! Anyway round two shortly.

    Thanks so much for telling me your story and kind support.

    Take care

    Karen
  • kathbee
    kathbee Member Posts: 934
    edited 30. Nov -1, 00:00
    Karen293 wrote:
    Hi Kathy

    You seem to have had all the same treatments as me which is great to hear. When I'm at the rheumy clinic everyone seems to be doing so much better than me. So it has been great to find you and Tilly with similar experiences. :P

    I've been lucky so far with not picking up many infections or bad side affects, other then the pred that leaves me nervous for no reason and times I just can't sleep. The Humira looked promising for a few months but then just stopped working. Like you I think I would rather put up with the infusions then injecting myself fortnightly.

    I also tend to just try and cope with the pain and not keep pushing for more consultant appointments. I don't find the rheumy clinic very helpful, they are just so busy I think. However this time reading your story I need to push for more treatment if needed.
    Like you I found the antihistamine makes me feel very sleepy very quickly, but within a couple of hours I was getting over that and the rituximab takes over making you tired and just the restless waiting for the bag to empty! Anyway round two shortly.

    Thanks so much for telling me your story and kind support.

    Take care

    Karen


    Hi Karen
    I underlined some of the things you said in your post.
    I so understand what you are saying, its the same for me and after 13 yrs of being diagnosed with RA and 20 yrs with OA, you get to feel a bit fed up to put it mildly.

    Also the line or two you wrote that I have put in italics - yes you need to push as otherwise you get left behind, that what I feel like, I am just naturally a pushy and demanding person and have now found that it does oneself no favours at all.

    Let us know how things go for you please.
    Kath x
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hello again Karen

    Glad you are getting over the infusion but sorry you are still struggling to sleep and feeling down - that is definitely my experience with the steroid infusions - specially when you are already taking pred as are you and I both. Pre-Ritux I was struggling to manage on 20mg meth and 20/25mg pred but before the Ritux started to wear off, I had stopped the mtx (due to side effects) and reduced the pred to 5mg daily. And I think that if my second set of infusions hadn't been posponed I may have been able to reduce the pred still further. So hopefully you will benefit from it as much as I have done.

    I so understand what you mean about the weight gain though cos I am in a very similar situation myself - not very mobile due to other health issues and fighting the effects of the pred. But I have been amazed in the past at how quickly the weight dropped off without much apparent effort, when I became more mobile and reduced the pred so I hang onto that thought when I feel down about my weight.

    Really good luck with the second infusion Karen - and please do keep us posted.

    Tillyxxx
  • Colin1
    Colin1 Member Posts: 1,769
    edited 30. Nov -1, 00:00
    Hi Karen this is my third year on Rituximap and im about to get my third infusion. Had my ups and down with so many other medical problems but i can honestly say Rituximab has been great and given me back part of my life i thought i had lost. I was constantly in a wheelchair when i started on it and now only need the chair for shopping and such. I am no longer in that 24/7 pain and i dont hurt in bed anymore. Hope it works for you. Like you i went through all the meds but this is going really well. It seemed to work for me within a couple of weeks and although ready for the next infusion i'm not nearly as bad as i was.
    You take care
    Colin
  • Karen293
    Karen293 Member Posts: 20
    edited 30. Nov -1, 00:00
    Thank you everyone for your kinds words, it has been great knowing there are others out there going though similar problems and meds.

    You have all given me a good boost of hope, so thank you again.

    Take care everyone, I'll keep in touch

    Karen
  • kayoswald
    kayoswald Member Posts: 15
    edited 30. Nov -1, 00:00
    Hi there, I hope you don't mind me intruding into your post but I am currently looking into the Ritumixab infusions and found your post helpful. I feel all over the place at the moment and its hard to know where to get any adivce and help from. I have been on Humira for about three years, alongside 20mg Methotraxate and all the usual painkillers ( I have RA and OA). I stopped taking the Humira a few months back because although my joints weren't too swollen I started to feel lethargic, had skin problems, weight gain, night pains like nerve pains and generally felt like I was somewhere else! My RA has now flared up quite bad and last week I went to my Rhuemy clinic where the rheumy nurse suggested coming off Humira for good and going onto Ritumixab infusions! I am now confused as to what to do as the infusions look scary, I am not good with hospitals, but its two treatments then thats it for a long while. Should I go back on the Humira as it helped my joints but the side effects scare me or try the new drug? I am due to go back to the clinic to see the rheumatologist dr in two weeks and need to make a decision. I have got up today feeling awful, my joints hurt so much I feel sick - do I use one of my humira injections in the meant time?
    Actually feel like I am rambling on a bit now so will leave it at that.
    Thank you
  • Karen293
    Karen293 Member Posts: 20
    edited 30. Nov -1, 00:00
    Hi Kay

    I found the thought of infusions scary too but the nursing teams are great. You also get to chat with other people in a similar situation to yourself. I would rather have the infusions then inject myself every other week as I have done. The Humira just stopped working for me so I had no choice, but if I was feeling as you are then I would go for the infusions too. But that is only my option.

    I don't look whilst they put the needle for the line in, not that it hurts but I'm not good with needles and I'm fine if I don't no whats going on! They tape it firmly to your hand or arm ( depending if you have a vein they can find, mine are rubbish) and then its just a case of sitting and letting the medication infusion run. It takes about 5 - 6 hours the first time and about 4 - 5 the next but then it's done for at least 6 months. You can eat, go to the toilet and read or do some simple activity. I play on my nintendo ds. You can take someone along with you.

    I'm on prednisolone and when I stopped taking the humira I had to up my pred dose for a while but then it settled down enough to manage.

    I hope this helps. Please ask me any more questions, I'll help if I can. It's not nice being scared, but most of us seem to have been that way at the thought of the infusions but all I have met so far are doing well.

    Take care, thinking of you

    Karen
  • kayoswald
    kayoswald Member Posts: 15
    edited 30. Nov -1, 00:00
    Hi Karen, thank you for your reply. I see you are from Harlow, I am from Braintree, so not too far away!
    Do you have your treatment at PAH, hope you don't mind me asking?
    I'm still a bit up and down today, still have no idea what to do really, not sure whether to have a humira injection today to take me up to the 17th July when I see the consultant, but that almost seems a bit daft as I am sure one won't help that much. Also toying with the idea of going back on the Humira to see if the side effects come back or just try the infusion. Did you have to go through all the tests again like when we went on Humira before you get the infusion? How long does it take to arrange the first one, will it be months? Last question, sorry, are there any side effects that you have heard of with the infusion? I have just lost over a stone in weight since I have been off the Humira and don't really want to put it back on - I hear you get a steriod infusion too?
    Thank you again for your reply, its really does help to hear how other people get on and how they feel.

    Thanks, Kay
  • Karen293
    Karen293 Member Posts: 20
    edited 30. Nov -1, 00:00
    Hi Kay

    Yes I do go to PAH for my consultant appointments. Don't surpose you do? I had my infusions their too, but in the William day unit around the back. I put on loads of weight because of the steroids (predisolone), which I have been on for a few years now to cope with the pain as I don't like the side effects of the high dose co-codamol, as well as the lack of mobility. So I'm calorie counting to to reduce my weight which is very slow, but any loss must be helping my joints.

    When you see your consultant he will be able to tell you from your blood tests whether the humira is working, then it's up to you whether you can put up with the side effects. I didn't have to be retested for the infusions but it took 7 months before the treatment started because they only have a few chairs and they are used for other illnesses too. I think the nurses told me that they were only doing one RA patient a week but when I went they did five of us in one go and were planning on doing this more often as the waiting list was getting so long. Other hospitals are a lot quicker. My daughter also has infusions for a different illness at Adambrooks in Cambridge ( not sure I spelt this right) and she was having treatment within a few weeks. I don't know of anyone with bad side effects from the drugs other than having to stop due to other health problems.

    Well done for losing the weight. I don't think the infusion effects your weight. I hope I've answered your questions. Ask more if you have any. But relax and chat with your consultant. I'm sure you will come up with a decision between you. But I would go for the infusion. Oh I forgot, They give you a steroid in saline before your infusion to help any reactions you may have which I'm told is it can give you a headache. But they give you pain killers too at the beginning to stop this. You have an antisistamin (sorry my spelling is bad!!) too injected into your line which makes you feel very sleepy, so don't panic if you suddenly feel rough. Then at the end of the day I found I was so tired but unable to sleep. I was also told if you are to have any reaction to the drug it usually happens while you are at the hospital.

    Good luck with the consultant.

    Karen
  • [Deleted User]
    [Deleted User] Posts: 0
    edited 30. Nov -1, 00:00
    Hello Karen,
    I have been on rituximab for 2 years now and yesterday finished my fourth treatment. I found that it only started working for me recently and I'm not even sure whether it's real or just in my head. Unlike you or Tilly I feel great after infusions. Not on the same day of course, as I am shattered after sitting for hours. The next day (which is today) I am full of energy thanks to the prednisolone. I also get very red and hot cheeks but it passes after several hours. So far I never had problems with sleeping, on the contrary, after infusion I sleep like a baby. But I also noticed that I started waking up like a baby too :lol: . Today I was awake at 5am!
    I hope the infusions will work for you quickly and that you won't experience many side effects.
    Good luck and all the best,
    Nesia.
  • ratface
    ratface Member Posts: 62
    edited 30. Nov -1, 00:00
    Hi Karen, sneaking in on your post and reading all the other replies with interest as I've just had my second course of rituximab within a year.

    Very interested in Nesia's reply as I have felt no benefit from the rituximab infusion although my blood tests show otherwise.

    (I must admit I have only just thought of looking on here for how others have coped with rituximab - haven't been here in ages - note to myself: must come here more often).

    I really don't know what I was expecting the rituximab to do symptom wise. I am just hoping that this second round gives some improvement which reading Nesia's comment may be possible.

    With regard to not sleeping the first half of infusions - ended up with a migraine as I couldn't sleep. The 2nd half of infusions I was ok and slept.

    Oh well, take care

    Ratface xxxxxxxx
  • Karen293
    Karen293 Member Posts: 20
    edited 30. Nov -1, 00:00
    Hi Ratface

    Sorry to hear you are not feeling any benefit from the rituximab, although the blood tests show otherwise. I was like this with the Humira, until it suddenly stopped working altogether.

    Like you Nesia's reply does still mean there is hope. It's still early days for me, with another blood test booked and an appointment with the consultant in early August. So I'll let you all know how it goes.

    I wish you well, and hope the Rituximab gives you some benefit soon.

    Karen
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hello Karen and Ratface

    Ratface - just wanted to say "don't give up hope" on the Rituximab. When I started it I was told that it is potentially very slow to act at first and I was told not to worry if I saw no benefits until some time after the second lot of infusions which were due to happen after 6 months - but in my case were postponed due to other health probs.

    Really hope you do start to see some benefit soon Ratface. I am fairly sure it has been helping me, although other health issues have masked the benefits somewhat so it's hard to quantify the improvements. But I have met people at the hospital recently who have been really helped by the Ritux so hopefully it will help you too.

    Please do keep posting to let us know how you are doing - there aren't many of us "Rituximabers" on here so it is really good to know how others are getting on.

    Thinking of you.

    Tillyxxx
  • kayoswald
    kayoswald Member Posts: 15
    edited 30. Nov -1, 00:00
    Hi there, sorry for the delay in replying, I must admit I have been sticking my head in the sand a bit which isn't good as I am back at hospital on Tuesday and still have no idea what I want to do!!!
    Karen, I go to Broomfield in Chelmsford, my Rheumatologist is retiring this year so not sure whats going to happen then!
    I must admit I do get frustrated with my blood results as when I feel my worse the blood tests say otherwise but I am told that I have zero negative RA so not sure that makes a difference or not. I had my hands and feet xrayed to see if there has been any further damage in last two years as well, so will get those results on Tuesday. I am still scared my the thought of the infusions but equally so unsure I want to go back on Humira, never felt so confused!!!! Anyway whatever the outcome next tuesday, nothing will happen for a while as I am off in search of some much needed sunshine in three weeks so I won't start anything until I am back as I am not keen on tranporting Humira on a plane!
    Also interesting to hear Nesia's, Ratface and Tilly's stories too and like Nesia I find this site really helpful but must make more of an effort to keep up on here! Its nice to hear other peoples opinions who are actually going through the same instead of just listening to what the hospital tell me, so thanks all!
    Hope you all have a lovely weekend xx
  • ratface
    ratface Member Posts: 62
    edited 30. Nov -1, 00:00
    The other health problem I have has been sciatica which has meant besides rituximab I have also been on tramadol and had a couple of steroid injections so any possible improvement could have been masked by these meds. so really not sure if rituximab is doing any good. Steroid injections do definitely help the sciatica for about 6 weeks but then the pain kicks in again.

    Oh well, we shall see

    Ratface xxxxx
  • [Deleted User]
    [Deleted User] Posts: 0
    edited 30. Nov -1, 00:00
    Hi everyone,
    I have been reading these posts with great interest. It looks like many of you are waiting for the rituximab to work. Like you know from my previous post, I just had my 4 treatment which means I'm on it for over 2 years. And only now I'm starting to think that maybe it started working (finally). I'm not sure to be honest, because maybe it's the summer time, maybe the tramadol that I'm recently on or maybe I'm not better at all, only my pain is dulled quite well. It's hard to tell as it's early days. My rheumy nurse told me once, that you can only start feeling the benefits after the second treatment. When it wasn't working after the third, my doctor said to be patient, that it takes time and it still can work. I really hope that that's what is happening now.
  • ratface
    ratface Member Posts: 62
    edited 30. Nov -1, 00:00
    Well, here I am again!

    This is totally stupid but ......... I had a 'blob' on my right shoulder which no one could make up their minds what it was. I was booked in for an op to remove it and while I was waiting for the op, the 'blob' disappeared. The 'blob' disappeared after the 1st complete course of rituximab. It had been on my shoulder for well over a year and was a softish mass and like I say there was some confusion as to what it actually was - obviously RA related. I can only guess that rituximab was instrumental in it's disappearing act ? Either that or perhaps the MRI scan was responsible which I can't imagine.

    Also, my feet seem to be fitting my shoes better ? So perhaps again it's something to do with the ritixumab. Trouble is I still hurt elsewhere, ankles, knees, hips, back.

    I had a steroid injection 6 weeks ago and I was able to stop the tramadol as it worked so well but now the injection is wearing off (as per usual 6 weeks in) so looks like it will be back to the tramadol again. I am trying (hoping) not to take them as I really want to see if the effects of the rituximab are more evident.

    I wish the scientists would hurry up with their experiments into testing the blood with what meds work on each persons RA (so's we dont have to go through the 'trial and error' of trying something new which may or may not work for each of us).

    Have a nice day (there's a strange shiny thing in the sky this morning - hope it stays there).

    Ratfacexxxxxxx
  • Karen293
    Karen293 Member Posts: 20
    edited 30. Nov -1, 00:00
    Hi Ratface

    Glad to hear your blob has gone, like you say must have been RA related!

    I too have not noticed much difference after my first infusion, but early days yet. My feet are also fitting better in my shoes. Don't know if that's from the infusion or losing weight. Lost a grand total of 1/4 pound this week! Would love to reduce my prednisolone. Off to see the consultant in a few weeks after another blood test, so it will be interesting to see what the results are so far if any.

    Keep in touch Ratface. Take care.

    Karen

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