Rituximab infusion

bubbsie

I am due to have my first Infusion on 1st December. Has anyone one else started this treatment? and I would like to know how it went and what to expect
Thanks Guys
Bubbsie xx

skezier

hi Bubbsie,

sorry i have only just seen this :oops:

i haven't had that as i am still on the 3 tries and fail thing at the mo....

i so hope someone will come and say abut it what i do know is infusions leave you abit wiped out the day after... well mine leave me wiped out for a good 10 days but i have a different one and its a 5 day course.

we do half decent pocket duties so will be with you on the 1st to just offer a bit of support if you need. fingers crossed for you. Cris x

bevman

hi Bubbsie
my husband has just had his second infusion of rituxamab today he had his first one two weeks ago.When he had his first one they had to slow it down due to a headache and a sore throat but he was ok after a while he was in a day ward for about six and half hours although he was given a bed for the first one he was still very tired the next day.Todays infusion was not as long although they started it off slowley he was still in for about five hours they also gave him some paracetomol and anti hystamine and steroid.
my husband has severe RA we hope that this will be the one to work as he has been on a number of drug's including embrel.
i hope you will be ok and good luck you will be fine anything i can help with let me no.
Alison

bubbsie

Thank You cris

I am a little scared but a little excited at the thought of getting my life

Alison Thank You very much for taking the time to reply I too have severe RA and tried many many drugs including anti tnfs, This is my last resort and I am praying it works for me x Hope it works for ur hubby too , can I ask was he sick or anything? tireness I can cope with Methotrexate and humira made me very wiped out

Thanks again
Bubbsie x

skezier

hi Bubbsie,

shall book a corner of your pocket for the 1st!

i so hope it will work for you and i think if it works it works very well. leaving you a [] and a hope that you know this lot will be with you. haven't bumped into you before.... i have eye trouble so don't always see things but nice to meet you . Cris x

julie47

Hi bubbsie

Good luck with the infusion on the 1st

Hope you start to fel the benefits.

I am not o that medication just wanted to wish you well

Juliepf x

bubbsie

Thank You julie

Cris been on here about 3 yrs but you know what it's like we come and go . It's great to talk to other suffers of this nasty condition . It's taken my life away my partner left also it was too much for him and now I want it all back please xx

janie68

Hi Bubbsie

I started Rituximab in August last year. When having 1st infusion, I started to have a reaction, sweating, sore throat, raised BP but it soon settled after slowing down the infusion. Prepare for a long day for the 1st one, took for me 8 hours, the second one 5 hours.

I felt completely wiped out for about 3 days after each infusion, I also found the 2nd steriod infusion you have helped me for around 3 weeks. Felt better, less pain but it soon came back. There have been a lot of success with Rituximab. However, it has not worked for me so I'm moving onto the next treatment. There are 4 more treatments to try after if Rituximab doesn't work so it won't be the last resort for you.

I also have severe RA and my consultant is confident that he can treat me. One thing I will say though for Rituximab- you have to be very patient, it can take at least 12 weeks for it to work. I know 2 people on it and they had to wait that long for it to do it's thing!

Hope this helps and good luck for next week

Janie

frogmorton

Hi Bubs
#
just calling in to wish you luck - can also hop into pockets as needed - 1st you said?



I hope it works for you and you start to take control of your life too

Love

toni xx

dorcas

Hi bubsie

I've no experience of Rituximab but wanted to wish you good luck with your first infusion next week.

I hope that it keeps the RA and pain at bay and gives you back some mobility and movement.

Remember to take in a good book or ipod! as it's gonna be a long day. :!:

Iris xxx

ps.... let us know how you get on please. x

bevman

bubbsie wrote:

Thank You cris

I am a little scared but a little excited at the thought of getting my life

Alison Thank You very much for taking the time to reply I too have severe RA and tried many many drugs including anti tnfs, This is my last resort and I am praying it works for me x Hope it works for ur hubby too , can I ask was he sick or anything? tireness I can cope with Methotrexate and humira made me very wiped out

Thanks again
Bubbsie x

Hi Bubbsie
just to let you no my husband has been feeling a little sick today and looking back he did on the first one too but it is not as bad as when he was on methatrixate and he does feel absolutly washed out.
good luck for your infusion can i just add that there were a number of people on rituxamab in the ward and it was there second go at it it has lasted up to 18 months they were all pleased at the results.

Alison

bubbsie

feeling much better about it now kind of knowing what to expect the nausea and tirenes is nothing new get that all the time with RA

has anyone else had problems with raised B cells? I think thats why they opted for this treament as in the last 18months had to see a b cell specialist who explained why they were raised and how it's connected to RA ??/


Thanks Bubbsie

mp1952

Hi Bubbsie

Can I ask how you discovered you had a problem with your b cells?? (I know nothing about them).

I do hope the Rituximab works for you.. I am starting my first anti-tnf shortly and am rather nervous!

Take care

Marion

bubbsie

From my blood test they discovered that my b cells lymphocytes were raised for 18months and rheumatology were concerned it may be something else so sent me to b cell professor who explained that b cell mulitply and multiply when u have leukemia but in my case they were raising and dieing off and this is all to do with RA and the immune system they think it's my b cells which is causing me problems and rituximab is a chemo also used for non hodkin and lukeimia and very sucessful in severe RA
so fingers crossed

bubbsie

infusion postponed till wednesday 8th due to eye infection gggrrrrr got already for it to

dreamdaisy

How frustrating for you. I have had infliximab via infusion and I loved it. It didn't work, but the procedure was so easy, far preferable to injections! I wish you well. DD

tillytop

Hi Bubbse

So sorry to hear that your first infusion has been postponed.

Really hope it goes well for you though when you do get to have it. Will be thinking of you and I really hope it gives you the relief you are hoping for.

Love Tilly xxx