The Rituximab Diaries: Part 2

Hello all!

It’s been around 3 weeks since I completed my Rituximab treatment and I wanted to share my experience with you. Only if you’re interested ofcourse!

I googled the stats and there are approximately 1.5 million Americans living with Lupus. In the UK it’s around 50,000. That said, there’s still no cure.

We’re treated with the most random and bizarre medications. We’re prescribed pills and medicine meant  for other illnesses but because they’re reported to have some benefit, Rheumatologists can justify prescribing them. Once you’ve exhausted these without success, unfortunately, chemotherapy is seen as the only viable option. Especially if the Lupus is very active. 

Onto the diary…

I went into hospital February 19th at 8am, nervous but armed with magazines, snacks and my iPod. The ward was quiet and I was put in chair number 7 (I think!)

The tray next to me was all set for the infusion and I psyched myself up for the horrible game of ‘find the vein’. I don’t fear the needle but I get anxious when I know it’s time to cannulate. I needn’t have worried because it would be a very, very long time before we even got close to starting the treatment. Here’s why:

I had a really bad time after my first infusion. The day after, I had pain in my throat, fever and achey muscles. This developed further into all over pain, tendonitis, migraines, sickness and nausea. When you have any type of chemotherapy, the hospital ask you to monitor all symptoms that occur afterwards. You’re given a Patient Alert Card and must contact the hospital immediately if you have any of the symtoms listed, as they may be a sign of infection. As I felt so unwell, I had to be examined at A&E two days later.

Because this happened, the Nurse told me that she wasn’t able to start my treatment until a Doctor was free. Long story short, we began 5 hours after I arrived! The doctor also set the infusion to a much slower speed to prevent an allergic reaction like last time. 

Once I was all plugged in, the routine was pretty much the same as the first time. You go through phases of being ok and then you have moments where you remember what’s happening. It’s like being on a long haul flight; you gear up for take off, soon you relax into it with a film or a book and now and again you remember where you are and what you’re doing!

Mentally, it’s hard to accept what you’re putting your body through. It’s essentially a cell killer and it’s killing off part of you. The treatment will leave you more susceptible to infections and  like all big treatments, carries an element of risk. It’s a significant treatment but after all this, it’s still not a cure. It may not even work. That said, I couldn’t let these fears get the better of me, I burried my head in celebrity gossip instead.

Due to the delay, I was there the longest. 15 patients must have come and gone! I was excited when the nurse told me that I was almost done – until I looked at my hands…

I noticed that I had a slight rash on my left hand and pointed it out to the nurse. She looked concerned and said she’d check back in a few minutes. Out of nowhere (and with the drip almost empty) I developed a severe rash all over my hands. Within minutes it was on both sides of my arms. I went to the bathroom to look at my body and it was on my chest, stomach and back. 

I was panicked because the Nurse and the Doctor were both visibly worried. To me, It was like the chemo was burning through my skin! The Doctor did a thorough examination and commented that perhaps the treatment just was too much for me. I couldn’t believe that I’d ended up with ANOTHER reaction to the infusion. 

The Doctor asked the Nurses to stay behind for another couple of hours with me to monitor the rash. (I felt extremely guilty about this by the way) Eventually it improved but it got worse before it got better. 

After 12 hours or so, I was allowed to go home. Exhausted and emotional and a bit numb. I was also preparing myself for the same after effects like last time. Why is nothing ever easy?! 

3 weeks later, I’m so tired and it’s a more intense fatigue than I’ve been used to. Not sure if it’s consequence or just coincidence. I’ve also been feeling very sick and have the chest and joint pain like I normally do. My plan now is to just take one day at a time and to really concentrate on doing what’s best for my body. And ofcourse, to start the challenging task of reducing the steroids. I’ll keep you updated on this once I hear what Rheumatology has to say!  

Thanks so much for reading. I hope this was useful/interesting and not too graphic! 

Til next time X

When It All Gets Too Much


How are you? 

Sorry for the lack of blog posts recently but I’ve been really unwell. You know how it goes; you take your meds, you take it easy and you still end up collecting every ailment under the sun. 

I felt compelled to write today. I feel like I’ve used up all my chat allowances with family and friends but I still have so much weighing me down. (Insert steroid weight joke here)

In the previous post I wrote about my first session of Rituximab. I’ve since had my second and final (for now) and so it’s a case of waiting to see if it’s been successful. I’ll write about part 2 soon incase you fancy a read. 

Ok, with that out of the way, let me get into it…

For a really long time, I’ve been feeling like I’ve been watching life go by from the sidelines. At work, with friends and family and even alone, I’ve been feeling absent minded and like I’m in a permanent daze. My cognitive function is horrendous at the moment. I’m forgetting things and struggling to get sentences out without slurring. My mind just feels too tired to function.

I don’t think I’ve ever truly come to terms with my diagnosis and as I’m getting older, I’m struggling more and more with it. I feel numb most days and then out of the blue I’ll remember that this is my life. I’ll panic, spiral into low mood and have episodes of anxiety and then depression.

Since the chemotherapy, I’ve been more fatigued then usual. I’m completely useless within 4-6 hours of being awake. I’m also reminded that I need to rest and although it’s for my own good, it’s beginning to drive me crazy. 

I feel so empty at the moment and I’m genuinely watching the world pass me by. This is the scariest feeling ever and I know that most people with chronic illness feel the same way. It’s genuinely heartbreaking when you have to live within the prison of your illness, when others have the luxury of health and therefore freedom. When I describe it as heartbreaking, it physically aches to scroll through your Facebook or instagram and watch everyone simply ‘live’ and they don’t even know how much of a gift it is to not be held back by your own body. 

It’s extremely hard not to become consumed by negative feelings. I always have a smile on my face because none likes a Debbie downer (sorry to all the Debbie’s out there!) but more so to convince myself that things are ok. This facade is completely exhausting!  

I need to state that I have so much to be grateful for and I have a great deal of happiness in my life but the feelings I have towards my illness are starting to overshaddow the positive. 

Right now, all I can see ahead of me is a life that I never wanted. In my mind, I am still the hardworking, ambitious and motivated girl I was pre-diagnosis. Whereas in reality, there were days last month where I couldn’t feed or dress myself. I couldn’t even push the pain pills out of the blister pack! Isn’t that ironic?! I want so much more for my life and not for nothing, I bloody deserve a life where I exist on my own terms. We all do! 

Right now however, it’s out of my hands. Try as I might to live with optimism and a positive outlook, the Lupus monster is in total control. Im waking in pain which means Lupus (and Fibromyalgia) dictates the fate of my day before it’s even started. Trying not to feel depressed is like not being able to swim and trying not to drown. Almost impossible. 

With chronic illness, you have a lot of time to think. I may be wrong but I’d say you think about the past, present and future more than the average person. You think so much about how you used to be, you’re consumed with the right now and you worry about the future – how you’ll be and who you’ll be. 

Right now I’m desperately trying to get through this fog and find happiness in the things I used to. It’s easy to ruminate and though this solves nothing, there’s little else you can do. 

I’m sorry this post wasn’t an uplifting one but you probably guessed it wouldn’t be from the title! However, I hope that it’s been somewhat insightful whether you have Lupus or you know someone who does. 

Thanks so much for reading.

Til next time, XOXO