How are you?
This is a slightly different blog today. As mentioned previously, I was due to have my first Infusion of Rituximab with hopes of being able to wean myself off steroids (Prednisolone)
To recap, it’s been 11 years of taking steroids on a daily basis with a prescription ranging from 2.5mg to 80+mg daily. Over the past 5 or so years I’ve struggled to get below 20mg without having huge flare ups and relapses.
I’ve spent the entirety of my twenties taking a cocktail of drugs every single day. The steroids however have been the most crucial and yet troublesome. In equal measure.
I’ve touched on weight and body image in the past blogs and have always talked about steroids being one of the main reasons that I’ve grown to detest what I see when I look in the mirror. Steroids really are a necessary evil in the chronic illness world. They can bring you back from the brink in no time atall but the side effects can be brutal.
So back to the diary…
On February 5th 2015 I finally went into hospital for my first round of Rituximab. Nervous, anxious and not wanting a needle in my arm for the day, I wished I was just going in for a standard clinic appointment.
Because I’d had the treatment a few years previously, I thought that I was fairly well prepared and would be able to handle the procedure again, however, this time, things were MILES different.
Last time round, I was in a smallish room with only two other patients. I had a bed and if I wanted to pull a curtain round I could. This time, the room was in the brand new section of the hospital and I was immediately thrown off when I noticed I wouldn’t be in a bed, but a chair. (Oh, and It only took a good hour before I realised it did in fact recline!)
The room this time was huge. I arrived at 8.15am and was seated in chair 9, a lovely state of the art, fetching blue recliner. My prison for the day.
It came time to cannulate, which I knew would be an issue as I have the worst veins ever. After 3 attempts in both arms and the wrist, we tried the left arm again. All seemed fine until it burned like hell when they tried to flush the saline through it. The nurse quickly removed everything and suggested the cannula may have been in the wrong place. Umm….. Ouch!
After about an hour and a half of things going wrong, we were finally able to start. I pretty much treated the whole thing like a long haul flight, I had my snacks, something to read, a blanket and a pillow. And like a flight, sometimes you hit turbulence. Out of nowhere I felt so unwell like I had flu and the most horrendous allergies. This meant that we had to pause the infusion and put antihistamines through a drip to try and treat the reaction. An hour later we finally started the infusion again but the doctor suggested lowering the speed of the infusion until I started to feel better.
During the time that you’re having the infusion, it’s a weird mix of being ‘ok’ as you distract yourself with the gossip magazines, but then suddenly remembering exactly why you’re there. It’s also physically draining because you have such limited mobility and believe it or not, sitting in the same chair for hours really takes it out of you. If you need to use the loo, you have to take the machine with you and do everything with one arm. It’s not a good time!
I found that I was so tired and spent hours drifting in and out of sleep. However, it’s hard to get decent rest because you’re having blood pressure and temperate checks every 30 minutes. It’s also a very bright and busy environment with machines beeping all the live long day!
With all the hurdles and drama, things took longer than expected. We were there for 10 hours (I could have flown to New York in that time!)
I couldn’t be more excited to get the cannula out and go home to bed.
Overall, the experience was a mixed bag of emotions and I’m glad I had my mum to keep me company. The Nurses looking after me were fantastic and did a great job of making me feel at ease. It began slowly and with a bit of discomfort and I could feel myself trying to suppress panic attacks.
I had moments when I didn’t really think about what I was doing but then it would hit me that this was a huge treatment and an aggressive one.
The hardest part of the day was the environment and the open-plan clinic where we could see each other’s treatment. Every single person there was in for a significant treatment and I’d guess the majority that day were in for chemotherapy.
I sat in between two patients that were having fluids drained all day and it was so graphic and upsetting to see. It’s hard not to let those images affect you. I have no idea if anyone else was being treated for Lupus that day but it really put things into perspective. The treatments available to us are far from ideal. They are too aggressive, too expensive and there’s no guarantee that they’ll even work. It really makes you wonder just how much the body can take.
It’ll take a while to see if the treatment has been successful. At the earliest, six weeks. If so, I’ll begin the long and frustrating journey of trying to lower my steroids.
I’ll be having my second course of Rituximab on February 19th and I’ll share that experience with you very soon.
Til next time,