The Lupus Awareness Month Diaries: Day 29

http://www.sickoflupus.co.uk

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.” (Macmillan.org.uk)

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,
X

http://www.sickoflupus.co.uk

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