second round of rituximab infusions: Hi All Hope... - NRAS

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second round of rituximab infusions

phil_54 profile image

Hi All

Hope everyone is well today its been a while since my last post due to other things going on such as a stay in hospital due to portal hypertension and it appears i now have varices veins as a result, Anyway cant wait for weekend to recieve next infusions since the last ones last July/August its been a blessing i have had so many pain free days it has worked really well for me but recently because its slightly overdue i can tell so hopefully by the end of this month things should start to improve again its always a long day but worth it.

Thanks and as i say i hope everyone is ok

15 Replies

Yes, Ritux works for me as well, although they would like me to take MTX along side it.

I just don’t get on with MTX or Hydra at all.

Happy that it’s working for you though.

It is a long day I agree, but those relaxing electric chairs make it so comfortable.

I’m due another round end of this month.

Thanks zimmie hope yours go ok too, MTX did help me but left me with scarred liver so had to cease taking it.

AgedCrone profile image
AgedCrone in reply to phil_54

I’ve been on 6 monthly Rtx without Mtx since 2016......all going well as long as I stick to the 6 months...when I tried to go to 9months I flared..........it all settled OK as soon as I had a duo of infusions.

Do hope your next infusions work their magic for you.

Do you take iPad to help pass the time and is it security safe in hospital ?

phil_54 profile image
phil_54 in reply to weymouth321

Hi weymouth321

Yes i take i pad headphones and a raft of magazines and yes the hospital wifi is secure,

Thanks , are you allowed to walk around with attached to mobile drip stand , or does nurse disconnect until you return to infusion room ?

phil_54 profile image
phil_54 in reply to weymouth321

Yes, you can move around the ward the drip is normally connected to a trolley that you can walk with, I tend to only move around to go to the loo as i do find it quite tiring.

weymouth321 profile image
weymouth321 in reply to phil_54

Hi Phil, first Rituximab infusion went well Friday, no side effects , only low bp which runs in family, nurses were fab , walked around a bit with drip stand, drank lots water , thanks again for info and tips, much appreciated !

Thanks Phil, hoping allowed to sit outside every now and then with drip going

Good to read all the comments about Rituximab had my first two infusions in July.

Had to get a steroid injection to tide me over as had a great deal of knee pain.

Go back to Rheumatology in November was wondering when I would be able to get another course. Hope it’s not too long as I am still struggling to walk.

phil_54 profile image
phil_54 in reply to Matt06

Hi Matmaxo

When i was first introduced to Rituxi i was told that it can work for anywhere between 12-18mths, for me it is a blessing i have had just over a year of fairly pain free days still get a few aches in my joints but nothing i cant deal with, Im not sure they would allow more infusions less than a year apart i think it takes a few weeks to start working like MTX but definatly steroid injection would be the next option.

Thanks

Matt06 profile image
Matt06 in reply to phil_54

Thanks for that phil_54 joints are a lot better it’s my knees that are the problem.

Had a hip operation last year and it’s fine hope I am not heading for knees next. I thought sport was good for you maybe I should have been a couch potato. Haha.

Nanij profile image
Nanij in reply to phil_54

Hi I had inffusion 2 weeks apart in march and then six months later I received another.i am still in pain and was wondering when things got better for you.x

You have been in the wars Phil, hopefully the Rituximab Infusion will start to put you on the right track x

Yes it has been a difficult time but other than all the professional support i have had the biggest thing for me is joining this forum 3 or 4 years ago i have made lots friends and had conversations that i could never really have with other people, you are the guys that really understand how this awful condition can really change your life so to be able to have these conversations is the perfect tonic so thanks to you and all the other posters.

PS Hope your all feeling well today.

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