The Lupus Awareness Month Diaries: Day 29

Good eve,
This morning I went to rheumatology to discuss my medication. We’ve decided that very soon I’ll begin new treatment with a drug called Rituximab.

“Rituximab belongs to a group of cancer drugs known as monoclonal antibodies. Monoclonal antibodies are sometimes called targeted therapies because they work by ‘targeting’ specific proteins (receptors) on the surface of cells.” (

I’ll have Rituximab intravenously over 2 sessions and each session is around 6 hours minimum.

I had Rituximab around 2 years ago but it wasn’t a big success. As you’ll be aware, the options for medication are pretty bleak. In my case, the other options carry high risk of cancer and infertility. Not fun options for a young girl who definitely wants children in the future.

Although I’ve had Rituximab before, I’d forgotten that it was a cancer drug. I feel really grateful that I have this option available to me, but I feel really uneasy knowing that this powerful therapy will end up in my body.

The main reason I have to begin new treatment is because I’ve been taking steroids for such a long time. 10/11 years is quite a long time to be taking steroids and I’m personally sick and tired of taking them. I hate the body I’ve been left with.

As I’ve mentioned before, I suffer with severe bouts of depression and anxiety but I don’t think I’ve spoken to you about the hallucinations I get. I’d say 5 out of 7 nights, I have the most vivid hallucinations (visual not sound) and it’s really traumatic. It’s one of the main reasons that I never get a good nights sleep. My doctor thinks that’s it’s caused by Lupus more than a side effect of medication. I’m hoping the Rituximab will help treat all of these symptoms.

Today was super informative and I had a lot of tests including bloods and a chest X-ray. I have a great team of people looking after me so I know I’m in great hands. However, it’s typical for me to worry and feel anxious.
I’m going to try really hard not to over think all that’s happening. Fortunately, I won’t have to wait too long for my appointment, I’ve been told I should expect an appointment any day now!

Til tomorrow,

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