Lupus #14 Rituximab - my first biological infusion experience

#14 Rituximab – my first biological infusion experience

Hello again, long time no post!

I’m back from hibernation (finally) and have an interesting topic to write about.

Today’s post is going to be about the new treatment I started at the end of November 2018 for my newly diagnosed Lupus Nephritis (LN) (Yay, Selena Gomez and I are twinsies! 👯‍♀️).

*Disclaimer – I am no expert, this is just information I’ve been given from my Doctors and the internet.

Kidneys are an essential part to ensuring your body functions properly as it helps to remove waste and toxic substances, regulates hormones controlling blood pressure and volume, and ensure the proper levels of fluids exist throughout the body. Lupus nephritis is diagnosed when inflammation in the kidneys known as glomerulonephiritis happens. The glomerulus is a network of tiny tubes transporting blood known as capillaries. For accurate diagnosis and information of the specific kidney issue, an invasive procedure known as a kidney biopsy must be performed to know exactly what type of kidney disease is being dealt with. This way the treatment can be targeted especially for the needs of the patient.

Firstly, I’ll explain the two types I have as to my understanding:

  • Type 3 – Known as “Focal glomerulonephritis” and occurs on average in 25% of lupus nephritis cases. It is detected by active lesions existing in less than half of the glomeruli (a tuft of blood vessels within the kidneys). For this type, kidney failure is uncommon, and usually responds well to treatment
  • Type 5 – Known as “Membranous glomerulonephirits” and occurs on average in 10% of lupus nephritis cases. It is detected by extreme swelling (edema) and proteinuria (leaking protein in the urine). This type I have been told is the one with the warning signs that it is more likely to get worse over time without treatment

From blood tests, my kidney function is shown as above 90% at the moment which is a good sign to start off with. However, as I have type 5 nephritis, this is likely to get worse in the future if we don’t act on it now. I am extremely lucky that my amazing consultants have always kept close tabs on me and were able to catch this in its earlier stages. They have been wonderful at both ensuring I know exactly what’s going on, but also working as a team between the different departments to decide the best solution for my case. I am currently under two main teams – rheumatology and nephrology, they communicate with each other, arrange meetings with other relevant specialists and make decisions with my quality of life as the main focus. They may not always agree with each other, but they also consult me of all the options I have and the various opinions of the Drs involved so that I can make an informed decision on how I want to go ahead. I am forever grateful to them.  

There was a bit of a split in opinions between the doctors with regards to what the next best steps are for me, mainly due to the fact that treatment required is powerful and expensive. It would interfere with my body’s natural cells, however the unknown of not treating it now would be the possibility that if we play the wait and see game it could damage my kidneys further (this is not something that would be reversible). As I already know my nephritis is highly likely to get worse in the future, I chose the option to start my treatment now whilst my health and kidneys are still OK. That treatment is called Rituximab and is a biological infusion, it is probably the next step down from dialysis and chemotherapy which is what the option would be if it were to get worse. A biological infusion is a targeted treatment that enters directly into the veins via a drip. Rituximab works by depleting B cells which are a type of white blood cell that fights infections by multiplying rapidly when an invader is detected. With LN, the B-cells go into overdrive, attacking anything, which is what is causing the inflammation in my body – in particular, my kidneys. By depleting the B cells this should slow down my body’s immune system to stop this and prevent any further damage, however this also will make me more susceptible to infections which is why I must be extra cautious when around people who are ill (not helpful when I have a 1 year old in nursery!) 

Due to the strength of the treatment, to help prevent any adverse reactions particularly in the first treatment, the drug is administered very slowly over around 7 hours. I attended a day ward where other patients are receiving various different kinds of treatment. For mine in particular, it is 2 doses within 2 weeks of each other, then a 6 month gap before the next. A strong dose of antihistamines, steroids and paracetamol are given via drip prior to receiving the Rituximab infusion, this is to prevent, or keep at bay any allergic reactions that may otherwise occur.

For my first treatment in November 2018, I was extremely nervous as I didn’t know what to expect, how my body would react. However I’m happy to say it went well with little reaction – I thought great that went better than expected, this isn’t so bad! The only thing to note was that I felt very sleepy/dizzy (I may have even nodded off a bit) at the beginning due to the antihistamines given. 3 weeks later (as I ended up missing the 2 week appointment due to a mix up of dates), I had my second infusion. The second dose is set to be given at a slightly faster pace. I went in fine, not nervous at all as I thought I knew what to expect from my first time. About an hour after the Rituximab began I started feeling pain around my heart, as if someone was crushing my chest. I passed it off at first as nothing but the feeling got stronger so I alerted the nurse on the ward who immediately slowed the pace of the drug. Afterwards the pain wasn’t as strong however I began to feel a bit faint, the nurse alerted the doctor who stopped the treatment and sat me in another room, an electrocardiogram (“ECG” – electrical activity of your heart to show whether or not it is working normally) was taken which showed an arrhythmia in my heartbeat. As all this took a while, I was feeling back to my normal self and agreed to continue with my treatment that day at a slower pace. The rest of the treatment went well, I think the faster pace at the beginning cause my body to react.

Got myself comfy for a day in the ward!

Since the treatment, I have experienced at least 3 noticeable chest pain instances, some lasting over a week, which I believe is connected to this treatment as, apart from having pericarditis a good 4 years ago, I haven’t had any other chest pain in the past. It is difficult to say however, as Lupus itself can affect all parts of the body, and it could just be a part of my lupus journey. I have also had one admission into hospital which I will speak about in my next post. Aside from that, my consultant has said that the treatment has worked in that it has completed it’s job of depleted my B-cells. I feel good in myself, just maybe a slight noticeable increase on picking up illness’ than I usually would have in the past.

My next treatment is due in July 2019, hopefully all goes well then too and I’m sure I will be posting an update afterwards. For now, I hope to post more frequently … fingers crossed 😁

Until next time, much love to all!

xXx

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Emma Hayes

There I was in a hot yoga studio with plenty of bright natural light and bending myself into pretzel like positions for the very first time.

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