ScrabbleNo, this is not a high-scoring Scrabble word. If it were, it’d be worth 20 points… 40 on a Double Word. If I managed to get the X to land on a Triple Letter, it’d go up to 72, plus 50 for using all my letters… a grand total of 122! 🙂

But I’m not playing Scrabble, I’m sitting in Daycase having an infusion of Rituximab.

As I mentioned a few weeks ago, I have oral Graft versus Host Disease [GvHD]. To treat it, I started off taking a mouthwash and gargle of Prednisolone (spitting it out afterwards), which after a few weeks, we realised was ineffective. More recently, I took it at a higher dose as a mouthwash and swallowing. But after two weeks, my consultant agreed with me that this also wasn’t working, so I’m coming off them.

Prednisolone is a steroid, so I have to come off them gradually, so I don’t have a withdrawal ‘crash’. Each week I’ve been dropping down by one tablet. I’m now on my last week – taking only one a day.

When I was just gargling and spitting it out, I didn’t have any of the mad steroid effects I’ve experienced with Dexamethasone, but since I’ve been imbibing it, I have had a bit more energy and more annoyingly, my sleep has been affected… I get tired quite early and often go up to bed around 9 or 10 o’clock. I read for a little while, which, in normal times, is a sure-fire way of making me nod off in no time. Not so now. I carry on reading a bit more, hoping for that delicious, woozy, eyelid-drooping feeling, but to no avail. I’m not all wired and hyper like before, but I am awake and although tired, I’m not sleepy.

Nonetheless, I turn off the light and snuggle down into my pillow and duvet, close my eyes… and the minutes tick by… I turn over… and the minutes tick by… and yup, I’m still awake half an hour, an hour later. Some nights I haven’t been able to sleep until around 1 or 2am. When I finally do sleep, I usually wake a few times during the night, after which I also struggle to resume my slumbers. I often have strange dreams; not nightmares, but definitely not ‘sweet dreams’ either. After several nights like this, I usually get one night when I sleep like I’ve been knocked out cold, the duvet completely straight and unrumpled in the morning and no dreams at all.

So I’m hoping that once I’m completely off the Prednisolone, I will get to sleep as soon as my head touches the pillow.

Now back to the problem at hand… the oral GvHD. My consultant has prescribed Rituximab. According to Wiki, “Rituximab destroys B cells, and is therefore used to treat diseases which are characterized by excessive numbers of B cells, overactive B cells, or dysfunctional B cells. This includes many lymphomas, leukaemias, transplant rejection, and some auto-immune disorders.” For me, it’s being used for transplant rejection, which is what GvHD signifies.

Rituximab is administered by IV infusion, once a week over four weeks. The first dose was last Wednesday. I arrived just after 10 and as usual, had to wait for a chair, then there’s the cannulation, which always takes some time due to my ‘difficult veins’. (I do hate it when occasionally a nurse says “you’re difficult”. She means my veins, but it’s really not nice to hear.)

Once cannulated, they took some blood, as the Rituximab can’t be released from cytopharmacy without a blood test. I think this is because Rituximab can reduce the number of white blood cells, so they need to be sure my counts are okay before we begin. At present all my blood counts are fine, so I wasn’t concerned. While I waited for the drug to arrive, they put me on a saline drip.

By the time they’ve checked the blood and the Rituximab has arrived, it’s already 12:30. They gave me two Paracetamol and an infusion of Piriton to prevent any allergic reactions, like a skin rash or swollen lips/mouth… Ahem, isn’t that the reason I’m taking this medication?

The Piriton made me sleepy/woozy, which was quite nice actually. They also checked my obs before they began the infusion and every half hour along the way, as it can make the blood pressure drop.

The infusion itself was uneventful, no rash, no swelling, no blood pressure plummet, but it still took four hours. Fortunately I had my MacBook, iPhone and a good book, so I could just sit back and relax. To be honest, being in Daycase feels quite a comfortable, safe place to hang out. How sad is that?

As they proceed, the infusions take less time. They hasten the infusion pace once they see you have no bad reactions to the first one and the second one. So this week’s session should have been shorter and it was, eventually… once the Rituximab actually arrived…

My Daycase appointment was after clinic, so I was at the hospital from 10:00, but didn’t get to Daycase till 11:30. About an hour later, a chair became available. One of the nurses prodded my warmed-under-hot-water veins for a while before deciding to allow another nurse to do it. She’s about the only nurse in Daycase who irritates me. She doesn’t work with a sense of assured assertiveness and confidence and she checks things with me that I am really not qualified to comment on, like asking which vein to use. I’m not the nurse, you are!!! So, I really wasn’t upset when she handed over to Sue.

Sue got the cannula in with a bit of a sting, but that happens sometimes, and she proceeded to hook up the IV saline. Within a second though, a big bubble blew up in my wrist as the saline went in… but not into my vein. Oooops! She hastily removed the cannula and got me to press down on a piece of gauze before taping it. The swelling went down quite quickly, although it was bruised for the rest of the day. Apparently, the body just absorbs the saline – it’s what we’re mostly made of, after all.

Fortunately, her next attempt on my other hand went very smoothly and I was all set to go…

In the meantime, Moya had called up to the cytopharmacy to see when the medication would be ready. She came over very apologetically to say that it wouldn’t be down for another hour!!! My appointment had been booked in for 10:30!

I had expected to be there all day, so this extra waiting time was just par for the course. I was in a surrendered, “whatever…” kind of mood, so anything other than pain was okay. Additionally, two of my clinic/social club buddies had turned up, Janette and Sam, so we sat around chatting until Janette was called for her bone marrow biopsy and Sam went off for lunch.

Eventually, the Rituximab arrived in its distinctive yellow plastic cloak (to protect it from sunlight) and we’re off. It’s only 2:00pm. Two and a half hours and several observations later and I’m outta there! Next week, it should only take an hour and a half… once the medication appears, of course.

So far, I’ve not noticed any difference in my mouth, but Dr Jenny Byrne advised that I will probably only start to notice an improvement after the third dose. As I’ve previously said, if it doesn’t work and I only have this slightly sore mouth to live with, it’s bearable.

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4 Responses to Rituximab

  1. Prednisalone experience sounds familiar. Just lying in bed waiting to sleep is very unpleasant, especially in the wee small hours. I hope this new treatment works for you. I’ve had oral thrush for about 3 weeks now so a have a tiny insight into your plight. The worst bit is not being able to taste things properly. I know you like your food so that must be awful. Fingers crossed….and perhaps a few toes!


  2. Lilian Blacck says:

    Poor baby! I hope the stuff works for you very soon. Mum XXXXXX


  3. Morag says:

    Full of admiration for how you’re managing Jet, although also know that one has no choice really!


  4. pauline selston says:

    love you


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