I'd like to hear from anyone taking Rituximab. I've just been offered it but am feeling concerned and nervous.

[Grymalkyn]

I've been on Humira for 3+ years; it helped but then I spent last winter in and out of surgery for my feet so only took just over half the injections, kept stopping and starting. By March I was not so well. Am better now after 3 months of steady injections but am being "agressively marketed" to change to Rituximab. I would really like to hear from others who are taking it, am very worried about the infusion process.

[Ozzy]

I was on Humria and now I am on Rituximab. The infusions are nothing to worry about as the nurses are excellent and monitor you all the time. In between that you are offered tea or coffeee and lunch, whilst either reading or watching tv! There were other people having infusions at the same time as me and we all had a nice chat. In fact apart from being attached to a drip it was a relaxing day off work. I had a bit of a headache after the first one, fine with the second, and I felt a bit tired afterwards but it is a long time to be sitting there so I dont know whether it was the drug or just sitting around for 8 hours.

[Grymalkyn in reply to Ozzy]

Thanks for that. The headache and tired feeling are recorded as potential side effects. I'm very worried about problems at the infusion site, heard how others have had terrible pain in their arms, felt sick, had inflamations and been right out of it the next day. I don't want that!

[Ozzy in reply to Grymalkyn]

I had no problems at all where the needle went into my hand, in fact I had more problems with bruising and soreness from having a blood test done. No pain at all in my arm other than a little bit stiff as I did not want to more it around to more. The next day I was a little bit more tired. As for inflamations in my hands etc I had them before I went and are still waiting for them to go. I have had no real side effects from this apart from a sore neck for a couple of weeks which I mentioned to the biologics nurse who is studying side effects from these drugs and she has heard others with this problem but only from the first set. I felt more looked after when having this drug than the previous ones like Hurmia and MXT injections were I felt that you are more or less left to get on with it, I had bad reactions to the MXT injections which put me in bed for 3 days after each jab.

[Grymalkyn in reply to Ozzy]

Ta again, that's very reassuring - although I could do without the neck pain for a couple of weeks! So glad it's working for you, the MTX sounds dire. Hugs x

[badar]

I found that humira did not work for me. I am now on my 6th course of rituximab. For me this has been the best medication ever. It enabled me to get out of my wheelchair. Has Ozzy said the infusions are not too bad. It is a case of knowing what can go wrong. The nurses have everything ready just incase. First of all I was given an infusion of steroids. The first infusion of rituximab is started very slowly, just to be on the safe side. Your blood pressure and temperature is taken every 15 minutes. Has you progress though the day, the infusion rate is increased slowly. It does take about 8 hours. I found that I had to keep going to the loo. Take things to read or listen to, has it can get very boring. If you are lucky you will have other people also on the infusion. After the first infusion I also have a headache and feel tired. You then have to wait 14 days until the final infusion. Again they start slowly. I have found that the second one does not take so long, has they increase the rate sooner. Again I have a headache and feel tired. Sometimes towards the end of both infusions I have found that I get very hot. This has not happened every time. With all the infusions I have had, I have not had any problem with the infusion site. I understand that it can take up to 3 months for it to work. Also you have to remember that your B cells will return. This varies between people. Remember that after the second infusion you are immune suppressed. So make sure that you have the flu injections. Also make sure that your gp is aware, so that if you have a cold, flu, chest infection etc that you are seen straight away. I hope that this is of some help for you.

David

[Grymalkyn in reply to badar]

Oh hey, I'm so glad you can get out of the wheelchair now, that's so good. I'm on a wait and see with the Humira now until Oct, discover what the bloods and the feel is like then. It worked for me before so maybe it will do so again, given the chance.

[beachbabe]

Hi Grymalkin

I am into my third lot of infusions and have found them to be fine.

My blood pressure does go low when i having the infusion but the nurse keeps a keen eye on it so if it goes too

low i get dizzy and feel odd (or at least odder than normal !!) they slow down the infusion till things settle.

i would just say dont read too much about the side effects as they always scare me but i think i would rather be able to move around than not have much mobility and lead a much worse lifestyle.

after the infusion, give yourself some calm days so you can see how you feel - these things affect us all differently.

i would recommend you have it as it isnt always offered as it is soooo expensive - so take it and run _ literally ! x

[Grymalkyn in reply to beachbabe]

I like the take it and run bit :-). They phoned just now to say they want to keep me under observation a bit longer, another 3 months, to see if the Humira starts working for me again, so we'll see how it goes but it sounds as if they want me to have it unless there's a drastic turn for the better (unlikely!). thanks for all your support, it really does help

[zaggill]

I'm on my 3rd set of Rituximab infusions with no side effects whatever. Before I was Cimza and blew up like a puffa fish lol......as if steroid bloat wasn't enough . Everybody is different but the nurses are fab and all patients are monitored really well. It's nervous trying out new drugs or treatments.....but Rituximab is great. Good luck and pain free hugs x

[Grymalkyn in reply to zaggill]

Ta muchley, that's reassuring. x

[elrose]

I have only had Rituximab (in the biologics sense) so have little to compare it to, have never had issues with the infusion itself and you are monitored throughout for adverse reaction (of which I have had none). That said I have yet to 'feel' any better though my blood results do show marked improvement, have had 2 goes and due a 3rd in November - here's hoping 3s the charm. Good Luck whatever you choose/have x Linda

[Grymalkyn in reply to elrose]

Hope it works for you with the feeling-better this time around, Linda. It looks like they're going to wait and see with regard to the Humira until Oct so no changes for me at the present.

[Tillytop]

Hello,

Sorry the Humira doesn't seem to be helping you and I do understand your worry about Ritixumab. I felt just the same.

Like you and some of the others, I was on Humira then moved onto Rituximab and, though it was by no means quick to work, it has been working well for me and I have been going a year between infusion cycles which is a great bonus, compared with regular Humira injections! Ozzy said exactly what I feel - in that I am actually happier with the infusions because I feel less alone than I did with the Humira. I have always been very well looked after during the infusions and very closely monitored so that any potential problems can be dealt with straight away. In terms of infusion after effects - I was warned that I would feel rough after the infusions and actually, for the first two, I didn't feel anything like as bad as I expected - "steamrollered" for a few days afterwards but nothing more. I really didn't feel well after each of the second set of infusions - like flu is the best way I can describe it - and it took me a couple of weeks each time to get over the infusions. But to me that seems a small price to pay if I can feel so much better for a year at a time. I also had very swollen feet and ankles due to fluid retention and it took a good week to go down but the next time round I was given a footstool to use during the infusion and the swelling was much less. The only other potentially negative thing from my point of view is that I don't do well (head-wise) on the high doses of steroids which go with each infusion - I can't sleep and I get very depressed for a good few weeks. But, again, that's a price I'm willing to pay for being able to go a year between infusion cycles - and the steroids do wonders for my joints which is a bonus. If you do move onto Rituximab, really hope it works as well for you as it has done for me.

Tillyx

[Grymalkyn in reply to Tillytop]

Tilly, thank you. Actually I think Humira will be working for me again given the chance but the docs were jumping the gun a bit :-). I'm really glad Rituximab is working for you, it's so good when the symtoms get some relief.

Your comments are really helpful and, along with the others, giving me a much better idea of what is involved. What you say about feeling "steamrollered" and taking a couple of weeks to get over the infusions is exactly what I fear. I've never had a porblem with feeling alone with the Humira, but then I'm very much a loner anyway and loathe going into hospital, in a crowd etc. I'm not a "good patient" either and have ripped the blood pressure thing off my arm when it goes too high and hurts too much, and screamed too. Goodness knows what I'd do if the infusion was hurting in a similar way! The extremely high doses of steroids that go with the infusions are very unnerving and will definitiely set my diabetes off badly, at present it's well under control. Do not want keytone problems! I don't at present suffer from fluid retention and don't want to go there either.