New to Rituximab and scared....

[Gwen]

hi im 23 and ive been told by my consultant that the next step for me is to have rituximab infusions, i have had RA for 4 years now and have tried numerous treatments such as methotrexate, sulphazalazine, adalimumab, and im on steroids and now n again have steroid injections in my right wrist they help for a while but i tend to over do it sometimes but end up in agony the next day! so now the next step is rituximab but ive read about it and heard that death has occured within 24 hours of infusion i really want to get better and i know that every drug comes with side effects and my consultant would not offer the drug if it wasnt safe, i need reassurance before i go for my first infusion. if anyone has any comments please write back.thanks.

[sylvi]

I would say that death is an extreme resilt. There are a lot of people on here who are on rituximab and they are ok on it. I know you are worried and it is hard for you at the moment,but it will get easier for you. This disease is horrible and you are worried about what will or will not happen,worry about your present circumstances not what could happen. You will get sorted out soon that much i can tell you.

You go and get your infusion and any questions you want ask, ask your consultant and they will answer you. Don't be afraid to repeat any questions if you don't get any answers.

Hope this is of some help.

Sylvi.x

[cathie]

I did a blog about a week ago about ten years of experience on anti tnf. So i wont repeat it if youd like to look it up. Don't worry there are many people living much better lives because of these infusions.

If you want to talk about all this do get in touch. Xxx

[HarleySue]

Hi Gwen - Just got back from Rheumy after my 4 month check up since having first cycle of Rituximab. She can see from my bloods that things are starting to improve. For me this is a milestone as I tried everything including CIMZIA anti-tnf injections. I too was worried but the dangers of PML ( they have to tell you about it) but it only occurs in one in every 22000 people - you are more likely to be killed in a car accident. I can honestly say that the benefits, which do take about 4 months to kick in, outweigh the side effects. The first infusion leaves you tired,sore throat and groggy but once your body is used to it the second infusion is much better. Just take it slowly, drink plenty of fluids and rest for 24 hours.

Please PM me if I can give you any more assurance but the fact I can sit and type this reply is a great improvement for me and hopefully for you also.

Love Suex

[Charlie36]

Hi Gwen,

I started on this drug in November. There are 3 blogs on my progress. All positive thankfully. Please read and feel reassurred! EM me too if you want anymore info.

love

Charlie

[Judi]

Hi Gwen,

I had my 1st course of rituximab tail end of last year. I dont know if anyone has mentioned to you that while you are having the infusions of rituximab they constantly monitor your blood pressure and temperature (believe it was something like every 15 /20 minutes) just in case there is a bit of reaction. The only reaction I personally had was that I suddenly felt hot, my temperature was not up, so they put on the fan until I felt more comfortable. Someone else felt cold so they gave them a blanket.

They supplied us with coffee/tea etc.and also a sandwich at lunch time (and a sweet and cheese and biscuits) so they really looked after us. Obviously I dont know if your hospital will do the same. One problem I had was spending a penny, only because if you are still attached to the drip you only have one hand! (Cant see that the men have the same problem though) Luckily my daughter came to visit me while I was having the first infusion and she helped me. The second infusion I managed better as I wore a pair of elasticated trousers (not the most elegant of trousers but more manageable with one hand) and also was able to time my visits to the loo better.

Hope everyone's messages on here have put you more at ease. I truly found the nurses doing the infusions at my hospital absolutely great, Florence Nightingale would be proud of them !!!

One other thing I've just remembered, they make you sit and wait a further time before going home after coming off the infusions to make sure you are OK.

Best of luck