MabThera - a patient’s diary
03/12/2008: Kate Oakes-Dennis
Sunday 27th April 2008 8pm I’ve been quite nervy this afternoon and evening and I’ve got a bit of a stomach ache. Everyone is being great and keeping my mind off tomorrow as much as possible. I’m trying to be as positive as possible for the morning because I think that will help me, as well as Sean and mom. I am worried about getting stiff though and my hands are terrible so I’m hoping the drip won’t go in there.
Mom took me out for a lovely meal to cheer me up and although I’ve had a little cry I know that I’m so fortunate to have such a great family and to get on this new treatment. I’m much better off than a lot of people.
Monday 28th April (the day) Got to the hospital for 8.30 am and even got a close parking space, the area for treatment is very small and Sean and mom have to wait in a different room it upsets me a little.
10am I start a steroid infusion after some trouble getting the canular in, this lasts for 30 mins then it’s flushed through with a saline solution.
11am I start the actual MabThera and I’m very nervous as the drip keeps making alarm noises.
11.30am am mom and Sean fetch me a sandwich, some crisps and sweets, eeh by gum my arm is hurting I just want to get up and have a walk around but it is too awkward with the drip.
1pm my arm is really painful now and although I don’t like to admit it my head is throbbing weird little spots suddenly appear in front of my eyes and I feel very hot, the nurse takes my temperature it is high, she also takes my blood pressure which has fallen somewhat, moms says I’ve gone very pale so everyone starts fanning me. Marcia (the nurse) gets me a drink and I’m ordered to move and stand by the fan.
I start to feel better as the fan cools me down and I can’t fault the attention from all the staff.
3pm Itchy skin and arms are stiff the drip will finish in about 20 minutes then it will be a saline solution through the canular for 1 hour. Ann and Margaret (two other ladies also having same treatment) are going to be finished sooner than me as each consecutive treatment gets quicker, they will both come back in about 6 months for their next treatment.
3.05pm really feel like I need to get the canular out now but persevering I’m sure will be worth it!
3.30pm Been on saline drip for 10 mins feels quite cold should expect any side effects within the next 2 weeks, I’ve been feeling really guilty that mom and Sean have had to sit here all day but I am so glad they're here and I know they wanted to be.
3.55pm taken off the drip at last, bit of saline left but its okay I just really need to move my arm. So relieved to be out at last but hopefully this is the first step in a new chapter of my disease and things will only get better from now on.
5.20pm we get home and I’m shattered even though I’ve only been sat all day. My arm is very sore and I keep thinking the drip is still in there! I have some tea and plenty to drink; everyone is keeping an eye on me as I'm a little queasy and feel sick.
7.30pm I’m off to bed as I’m really tired but I think it’ll do me good to get a good rest (fingers crossed I can get comfy enough to drop off pretty quickly).
Next Day
Sean stays at home to look after me, I still feel sick but not terrible. I’m mostly achy and tired, but what’s new, he he! I’ve noticed my tongue is very sore and the skin peels off part of it in the evening which isn’t exactly pleasant, but I am feeling generally positive because I think I was expecting worse.
Over the next two weeks I feel a little bit low in general, just like having a nasty cold, however I’m trepidaciously looking forward to getting the next infusion over (which has to happen a fortnight after the first) so that not only am I free for 6 months from anti-tnfs, but also I can feel that this stuff is getting the best opportunity it can to get working on my raging RA!
2 Weeks Later
I’m back at Selly Oak for round 2 (ding ding ding!) Sean’s come with me again and we’ve brought magazines, papers, food, etc to keep us supplied through the long day.
9.30am Start drip, it's just me being treated today so I have Marcia’s full attention. I'm told I should be finished an hour earlier today as the second infusion can be administered quicker.
11.30am I send Sean off for a coffee and sarny while I get my observations done, my blood pressure is low as usual and I have to get moving so I walk to the window to get some fresh air. Things definitely are moving quicker today which is nice.
1.30pm I’m getting through Mabthera drip now after having steroid and saline beforehand. My arm is stiff and sore again but at least I know it’ll be over in a few hours. Everyone is so nice and it keeps my spirits high laughing with the nurses and Sean, who is so supportive and understanding when I keep asking him for drinks and lifts up and down, and the obligatory toilet visits he has to accompany me and the drip on!
3.30pm I’m done, yey! Had a few hot flushes, waves of sickness and a stiff arm but I’m glad to be going home to rest (you guessed it I’m tired out again) and appreciate how lucky I am to have got the opportunity to try this drug, and have such a great family to take care of me until I can do it for myself…and that’s something I’m determined to do!!!!
PS MabThera can take up to 6 months from the second infusion to get going in the body so I promise to update you all in the autumn. Fingers Crossed!!!