Friday, 16 April 2010

hospital food...yum

About a month ago after the decision had been made to stop the anti tnf treatment because it wasnt working, I had the choice of where to go next, along with my docs of course. I was told about this relatively new "miracle" treatment called Rituximab. Only very few people have been prescribed this, in the worst cases I imagine. It sounded bloomin scary thats for sure. It involves an infusion given over a number of hours of a treatment that depletes the B cells in your body along with your immune systems to try and wipe out the disease. It obviously means im more prone to infections (as I was before on anti tnf) and also means if i ever want to have any mini kerrie's i will have to come off the treatment a year before conception, not that im planning on that anytime soon (will come on to this later!). So it was a tough decision to make, I would have to have around 2-4 infusions a year given in hospital and stay over on the first course. Ultimately, my goal is to feel better and get rid of the bloody stiffness, pain and fatigue as much as possible so I can go on living a normal life so anything that I can try, I sure as hell will!
The wheels were put in motion so that I could start the treatment. I was given a date in 4 weeks where I would have to come in and have my first treatment and stay over to be monitored for any reactions. To say I was pretty terrified is an understatement. I didnt sleep for weeks, obviously my pain was increasing with not having adequate treatment and I felt increasingly alone and emotional because I was tired.
I kept focussing on the goal of getting back to "normal" and that seemed to pull me through. You start to reflect on your life and overthink things way too much before a hospital visit i think (well I do anyway). I kept wishing I didnt have to do this, why cant I just be ok (for starters I hate bloody hospital food!) but reminding myself that this is what it is, there is nothing you can do but be positive and hope for the best. Being positive is so damn exhausting at times! But it does help improve my mood.
So here I am in the present, having just returned this afternoon from my first Rituximab sesh. I went into hospital yesterday morning. The usual faffing around occurred, I spoke with a lovely doctor who explained fully what was going to happen and asked if I had any concerns (typically, of course, i had loads but didnt say anything!) and once they took some blood to check I had no infections or nastys going on they were happy to go ahead. A couple of hours later I was comfy in my bed when I was given my pre meds, a steroid infusion and a piriton injection to prevent any reactions and help with the pain. I immediately felt woozy and wanted to sleep but then was strapped up to an obs machine which went off every 15 mins checking my blood pressure and pulse etc. Great, not gunna be sleeping much now! The blood pressure strap squeezed my arm to an inch within its life (ive only got skinny arms anyway so it was pretty much down to the bone!)
A bit frightened, my pulse was high but they said that can be normal so I tried to relax. Then the infusion was started, I was told the amount of fluid that would go into my body would be increased every 30 mins to slowly introduce the medication to my system. I barely felt anything to be honest in the first hour. I tried to relax, read a magazine, chat to the nurses to keep my mind off it. I then started to feel very tired and like I was having (what I call) Granny sweats (this generally means hot flushes and a bit of a to do!). My face was having its own disco, going red and white and red, I didnt feel too peachy but the meds were increasing so i understood why it was happening. All I wanted to do was sleep!
About 5 hours passed and the bag was finally empty. I could be detatched yey! In the mean time one of my best friends had turned up with some goodies (bless) to cheer me up and I was feeling much happier I wasnt alone. Some of my other best friends turned up and we all had a good chat and a laugh as I munched on a creme egg (yum), I always feel better when my friends are around, they make me feel normal!
After a long day and lots of observations done on me, I finally settled off to sleep after a little cry (I think I was too tired and emotional to cope with the situation of being alone!) But I drifted off quite quickly and before I knew it i was being booted out in the morning told to go home and rest ready for my next infusion in 2 weeks time. Today I have literally never been so exhausted, I could barely keep my eyes open writing this but wanted to let you know whats been going on in the land of rheuma girl! I feel a bit sick, my arm is killing but nothing a hot bath and some rest cant cure. Oh and the hospital food wasnt so bad after all...


  1. I am sorry to hear that your RA is this extreme and that you had to go in for the strongest treatment possible. It is not really fair at age 23, but hang in there. It is clear you have a great support system of people and that is really all it takes to keep going. I hope the treatments work for you. I have read case studies (watched some case studies on youtube if you can locate those)on Rituximab infusions and most people who have not been helped by other treatments show improvement with Rituximab. I wish you well and I feel you feel better soon.

  2. Kerrie, your story is an inspiration. You've worked hard to overcome the troubles RA causes with courage and a great sense of humor. I think you're pretty darned tough. I hope the new treatment gives you long-term relief from your RA and that you'll soon be up and around, ready to party and live your life just as you wish. Best of luck!

  3. A creme egg! Yum! OK, I know it's not enough to make up for all the RA crap, but they are good! I hope, hope, hope that the Rituximab helps you feel better soon.

    As Wren says, you are tough and what an inspiration! Hang in there and keep us up to date with how you're doing.

    :) Laurie