First Rituxumab Infusion - Advice, please!

[Jjoy]

Hi, I am having my first ever RTX infusion at Guy's Hospital this Monday. They haven't told me anything. Any suggestions that you have to make it easier I would appreciate - feeling nervous/worried. Thank You!

[Nadine99]

It's been a wonder drug for my husband. He had no problems with it, just a long and tiring day. Take reading material or something that will occupy you. No need to be worried or nervous, be very happy that you've got it.

[Essex-jill]

Hi I've been having RTX for the past 6 years or more. It's my 'wonder drug'

Just take an iPad/kindle or a book to keep you occupied as it's a long boring day.

Also plenty of fluids and wear something warm as you may feel chilly and comfortable clothes.

Try not to be worried as I'm sure the staff will put you at ease and talk you through it all.

Try to rest up in the days after the treatment. I usually feel very tired and sometimes flu like. I take some paracetamol before going to bed to try to avoid waking with headache.

Good luck

[BronteM]

Having a rituximab infusion is boring and tiring.....definitely not painful, and definitely worth every minute. As the others have said, take a book or kindle or something as you will need to keep yourself occupied. I also take an iPod as I get quite sleepy after the antihistamine and enjoy having some music or a podcast when I can't keep my eyes open. Extra layers are also good, though I usually end up asking for a blanket too.

I kept a diary for the a week or ten days after my first infusion and it has been invaluable. The infusions are six months apart and I forget what it was like last time, so it's very reassuring to look back and see that I felt the same last time!

You will feel tired and a bit 'fluey' after it...and it's not an instant miracle cure. You'll just realise that you are gradually doing more, less exhausted and life looks a lot better.

[Jjoy in reply to BronteM]

Thank you for this - all of you. I have read too much about the reactions,etc, and need to focus on the upside. I have got my IPAD charged and loaded with music and audible books, and will def keep a diary - good idea!

[StephanieDiane]

Hi, I had my first rtx on 7 Dec and the second on the 21 Dec, all went well, hope everything goes as well for you.

[Jjoy in reply to StephanieDiane]

Thanks - I'm wondering if you've been reducing prednisone & MTX since the infusions? - My second infusion is scheduled for 6 Feb, with follow- up on 10 March, but no one has said if I should change my meds before seeing my consultant. Be so good to reduce steroids, maybe get my face back?? LOL.

[DevonLottie in reply to Jjoy]

The doctors will advise you on when you can reduce your other medication. When I was on prednisolone I didn't take the dose on the day of the infusion as they give you iv pred as part of the infusion. If your infusion is on the same day you take mtx I'd ask for advice as you may need to delay the mtx to another day. On a positive note since having rituximab I've managed to wean myself off both pred and mtx (under consultant's instructions). Hope it is as successful for you. Charlotte

[Jjoy in reply to DevonLottie]

Thank you. They did say not to take MTX the week of the infusion, but nothing about my daily pred.

[Llinos]

I've had 10 infusions after a flare up of my WG, (currently on 3 yr regime so nearly finished) this infusion is bloody brilliant, After having oral medication for my initial diagnosis and 1 other flare up , I was really worried but it has been like Nadine says a wonder drug, I do tend to get some palpitations after the infusion and feel and look a bit flushed the next day , but these are small things. Like the others stated, a long day so keep yourself dosed up with books etc. Good luck x

[bobc]

Dear joy,

When I have a retuximab infusion I allow a whole day. Have had several and the process seems to be benign. I have not had any unpleasant side effects. My consultant tells me he believes this to be my most active treatment.

Best wishes.

Robert

[gibson100]

RItuximab is a very effective medicine.Well worth it.

I would suggest taking a little picnic bag along with the reading/listening material.You will be there for a while and whilst the staff are usually great NHS food isn't. THis may seem a trivial point but I found myself getting a bit peckish.It is a bit like going on a plane trip so it also helps to pass the time.

[Balderick in reply to gibson100]

Personally, I feel blessed the NHS food is offered. I don’t eat well in anycase, not since this disease visited itself upon me.

I am hoping to have my 1st lot of this in December as I go in, to talk about the drug and what they call bio similar ? I would hasten a guess a generic Rituximab?.

[Keithtim10]

Hi I had my two infusions just before Xmas and understand the apprehension but for me I was tired for a day or two but OK after and I have seen my blood results get better and as each day goes by I seem to feel better but its a slow process hope this helps

[Jjoy]

Update- thank you all again! It went pretty well, I started o have a reaction so they stopped and shot me up with more piriton, then restarted and all ok. No other side effects and I got a lot of reading done! Here's hoping to get off prednisone after 10 years...

[Balderick in reply to Jjoy]

Here here

[nirja]

I have had 3 Rituximab infusions, the 3rd in November, 2016. Improvement takes time, but my recent blood test showed ESR and CRP within in the normal range, for the first time in several months. During my first infusion, my pulse shot up after a few hours. The doctor stopped infusion for a while and restarted. After 4 month, I feel generallyuch better. I am still continuing on 10,mg presnisone . Wish you good luck and good health.