Fusion

[28maggie11]

After five months of no RA meds only a steroid jag to keep me going I am awaiting phone call from nurse to arrange rituximab infusion. Apprehensive as so far I have not tolerated methotrexate or humira. In my system for six months if I have a problem

[Nsmith13]

I'm in the exact same position not as long as you but up to now I'm starting to feel ok after months on these drugs and feeling so ill nearly every day l wondering if it's for me these biologics not for everyone I'm told ???????

[AgedCrone]

Don't worry...I have been on RTX since 2016 having been on Mtx & Lfl, & eventually failing on both.

RTX has suited me very well ....at my first infusion I had a bit of a hiccup...coming out in a rash.....but the infusion was slowed down & I have driven myself to & from infusions ever since.

I did have one infusion speeded up (my fault I asked for quicker time) & I felt a bit off for a few days afterwards ...but with the longer time I'm fine....virtually no aches & pains at all. You will be given plenty of hot & cold drinks & a sandwich lunch. Take plenty to read, & a warm jumper/wrap.........I always feel quite cold during the infusion. ...I find I sleep a lot as you are given an anti histamine in the pre wash out infusion. But I'm OK to drive home.

But make sure if you do feel a bit wobbly at the first infusion you tell your nurse straight away & she will know how to deal with whatever you think is not right.

Good Luck...all I worry about now is having to stop the infusions,

[28maggie11 in reply to AgedCrone]

Thank you so much. I am on my own and a worrier

[AgedCrone]

Me too...I'm on my own & the way I looked at starting on RTX was to not over think it. I put together a list of questions to ask the rheumy nurse & she told me all the pros & cons & assured me the infusions were given by senior nurses who really know what they are doing, & there is always a doctor in the unit if needed.

So take a deep breath & stop worrying ...i'm convinced being really tense & stressed when you start on a new drug can often affect the outcome.

[Stuckslager]

Humira did not help me at all in fact I got worse with joint pain. The only med that has helped me is Enbrel. I was told there's not much difference in Humira and Enbrel but in my case Enbrel works best for me and I've been on Enbrel for over 10 years. When I have a flare up I take 2 shots of 25 units per week but usually only take 1 shot a week for normal activity.

[phil_54]

Hi, I have just been told to stop MTX but this is because my blood markers on my liver have gone to 98 and they think there may be slight damage, I also have to stop pain relief such as anti inflamartrys so at the moment all i am taking is hydrox, LED nurse has suggested RTX infusion so have an appointment with consultant next week. they gave me 120mg Kenalog steroid which hopefully will cover me for next few weeks but have to say i was a little devestated when they stopped my MTX as i must be one of the more fortunate ones as it works really well for me otherwise.

Just like you i dont know that much about RTX so it feels like starting all over again so totally understand your concerns, I am going to ask consultant about maybe reducing the dose of MTX to see if that helps to bring my liver markers back down to an acceptible level rather than just completley changing things maybe thats something for you to think about.

Thanks and good luck hope all works out for you.

[sunnyweek]

hello Maggie

I have had five infusions of rituximab. I can say please do not worry about it.

there will be others there having the infusion. Apart from it being a long day, you should be fine. Once the canula is in just relax, take some food and something to do, read, puzzles etc. You will probably chat to the others as well.

the nurses take your bld pressure pulse etc every half hour and you may feel sleepy after the antihistamine, most people do, you will see them all go quieter! Apart from it being a longish day and feeling tired after the long day, you will be fine.

relax and put your feet up in the recliner chair, that's what they use at Nottingham.

good luck xxx