Nervous

[Ellieellie]

Starting Biological treatment this month on the 29th. Been told to expect to be there for quite a few hours as drug will be given intravenously. Followed by another session two weeks later. I am being given Rituximab. Don't know what to expect after first round. How long does it take to notice a difference? Any advice gratefully received. Thanks.

[rawillbebeaten]

Hi Ellie,

I started Rituximab in Jan. I was advised 8-12 weeks before I would notice any difference. The infusion takes about 6 hours so take books, magazines, I-pad or whatever you like to pass the time with. You start with a steroid and antihistamine to damp down any adverse reaction, this is why you are advised not to drive yourself in, you may feel drowsy. They start of with a low flow of Rituximab and increase it if you are OK, (half hourly then hourly blood pressure/pulse and temperature checks) that's why the time it takes can not be exact. Make sure you have your blood test on Day 10 after the first one. They check there is no sign of infection. Last time one man hadn't so he had to wait while they processed it before the process could start. He had only just started when I was finished.

I think it's a good drug for me. Unfortunately my RA was out of control before they started me on it, so I had some strange things happening that were nothing to do with the Rituximab.

I only had one dose the first time while they checked things out. I had a course of two in September 2nd &16th and around middle of November I definitely felt a boost of something good. Feel almost back to normal, apart from the nerve pains in my feet, but they are improving.

Wishing you the best of luck, the nurses where I go in Bournemouth are lovely and reassuring.

Michele

[Scorer in reply to rawillbebeaten]

Hello Ellie,

I have been on Rituximab for eight years and it has improved the quality of my life enormously. The effects of the first two infusions lasted 15 months, I now require them more frequently but the effects are still as good. I started treatment in Leeds under Prof Emery and since our move to Cambridge have treatment at Addenbrooke's Hospital.

Same procedure. Steroid, Piriton and Paracetamol as a Pre-med followed by the infusion of Rituximab. Takes 5-6 hours as they gradually increase the rate. Never had any adverse reaction. Ask questions if you are unsure of anything as staff are usually well informed. Take a good book or download a movie to watch to pass the time. The infusion unit I attend has comfortable reclining chairs so I tend to doze as the Piriton makes you sleepy.

I have had RD for 43 years so have severe deformities and have had numerous surgeries to replace joints. Fortunately those who develop this disease now have these treatment options to prevent the extensive damage to joints. Are you also on methotrexate? Rituximab is usually given in conjunction with it.

Hope the treatment works well for you. Just one word of warning. Do make sure you monitor your immunoglobulin levels. I have had major problems with my immune system this past couple of years due to drug induced hypogammaglobulaemia, i.e. my immune system was severely depleted and got numerous infections. OK now after immunoglobulin infusions, but long -term steroid use, methotrexate (30 years) and Rituximab can have this side effect. Don't want to worry you but we need to be aware of all possible side effects. These are very powerful drugs.

Best wishes Pam