One of the (many) downsides of having a rare disease, is that there are limited accounts or experiences from real patients who are going through the same thing as you. That is why #MyositisLife is such a fantastic resource – it can really help put your mind at ease, knowing that someone else out there has gone through / is going through something similar.
So, with that in mind, I wanted to share my experience of going in for my first rituximab infusion. I hope this information helps those of you who are gearing up for an infusion of your own. And remember, we all respond differently to medications so your experience may be different than mine.
Do your research
I’m not a doctor, so I can’t tell you whether rituximab is the right drug for you, and I am not equipped to tell you about all the different warnings and side-effects. You can find information like that from your specialist, or from googling. It can be scary reading through all the different things that can go wrong, but you should always make an informed decision when choosing a treatment plan.
You can’t have any vaccines six months after your treatment, so work with your doctor to make sure you get everything you need before your treatment. I had my COVID booster, and also vaccines for an upcoming holiday to Thailand. Your doctor will be able to advise you what you need to do – you may also need vaccines for other illnesses like Hepatitis but, again, your doctor will be able to work through all of this with you before your first infusion.
The waiting game – be patient
I had to wait a long time for my rituximab approval to come through. It can be really frustrating waiting for a committee to determine whether or not you are eligible. The worst part is not being able to make plans. I had a rough idea of when the infusions would happen, but other than that I had to put things on hold for a while and avoid booking tickets or arranging day-trips and weekends away until I had firm dates for the infusions.
Take it easy
I had already reduced the scope of my role at work following a hospital admission, and I have been lucky enough that work was able to continue my reduced work-load until after the infusions. This has given me the peace of mind that, if I react badly to the infusions, I have the space to rest and recuperate.
Make sure you rest up the day before your infusion, and I recommend taking a couple of days off after if you can. You don’t know how your body will react, and I always find that it is better to be safe than sorry!
I slept the afternoon after my infusion and the day after. I was tired for a good few days and needed some early nights and lie-ins.
It’s not a spa treatment
One of the most frustrating accounts I read from a “professional patient” (whatever that is) was that their infusion day was a chance to be “pampered” and that it is like going for a “spa” day. I don’t know what planet this person is from, but I can tell you this, a hospital infusion centre is no salon. It is full of other sick people; the nurses are there to watch for infusion reactions, not bring you tea and biscuits and fluff your pillow. You are there to receive a medical treatment, not get pictures for your Instagram account. Be respectful, and don’t expect the nurses to wait on you hand and foot.
Don’t bring lots of stuff with you
You have a small chair, with a small table. One side of your chair will have a pillow where you can rest your arm and really you only have room for a drink and a book/iPad/phone. I had almost no space for my bags, and I knocked over my drink three times when fidgeting in the chair. You have your IV pole to one side of you, and will very likely have another patient on either side of you. So, make sure you choose your items wisely!
The same “professional patient” blog I read advised bringing a large stuffed toy with you to “cuddle” (I’m sorry, I am 37 years old and no longer take stuffed animals with me…anywhere), and to bring blankets and pillows. Please don’t do this! They will give you a blanket if you need one. It is just a basic hospital blanket, but it will keep you warm.
But DO bring some water
The infusion centre had tea, coffee, water, sandwiches and biscuits, but the nurses were busy and I felt guilty asking them to get me stuff. I wish I had brought a bottle of water with me – all I brought was a bottle of coke as I remember this was really nice when I had my IVIG infusions a few years ago. The infusion made me feel really thirsty, and the nurses did bring me some ice, but once that was gone, I really regretted not having water to sip on.
Wear comfortable clothes, and short sleeves
I wore a loose black t-shirt, and loose bamboo pants, with my Ugg slippers, a cotton scarf, and a merino poncho. This made it easy to access my arm for the IV line and then I could pull the poncho around me when I got cold. Don’t dress to impress. Just make sure you are going to be warm and comfortable.
The infusion centre is loud. Lots of beeping machines. I brought my big, noise cancelling headphones but they ended up being a bit useless as I couldn’t lie down in the chair. My Apple AirPods worked best as they were less bulky and I was able to lie down and take a nap while I had them in.
You will be there a while
The first infusion took 6 hours. So, eat a good meal before you go, if you feel up for it (but not too big in case you get nauseous). The chair is NOT comfortable, but there’s nothing you can do about that. Try and take your mind off it – listen to a podcast, watch a movie, read a book, or take a nap.
Don’t do anything when you get home
Get the cleaning out of the way, and any chores, housework, food prep, before your infusion. You will have spent a whole day at hospital, and I was exhausted when I got home. All I wanted to do was sleep. I was in bed by 7 pm and slept through til mid-day the following day!
It wasn’t as bad as I thought it would be
For me, the cannula used was a tiny yellow one, so getting the IV was actually one of the least painful sticks I‘ve had to have. I had chills, and some shortness of breath, but no nausea or skin reactions. Aside from feeling tired, I have felt ok. I think I actually feel better than the day after my methotrexate injections – which made me feel like utter rubbish. I took three days off work in total, which was right for me. I did feel tired after the infusion so I have been taking it easy.
Lack of appetite and a dry throat
There are lots of different infusion reactions – everyone is different. I don’t know if this is common, but the one side effect I noticed is a total lack of appetite – I didn’t want to eat anything since they started the drip. I wasn’t nauseous, I just was not hungry. The other side effect I had was a dry throat, like I’d been breathing really hot air. Neither of these side-effects were particularly bothersome. The appetite is coming back slowly.
Stay safe, social distance, wash your hands, and wear a mask
I know, for many people, COVID is becoming less of a worry and we are seeing mask mandates going away and restrictions relaxing. That’s not the case for those of us with a compromised immune system. Rituximab will leave you immune compromised for about six months following treatment and, as such, you need to keep up all the good habits you learned during COVID. Wash your hands regularly, stay away from people when you can, keep wearing a mask in public, and be careful about what you eat and drink. Be sensible, and limit your exposure to infections wherever you can. If possible, get friends and family who visit to do a RAT test before they come to see you, and focus more on outdoor activities rather than things in enclosed spaces. You don’t have to put yourself in a plastic bubble, but you do need to remain cautious.
If you are going in for your first infusion and have any questions, feel free to reach out and I’m happy to tell you more about my experience. Lots of folks in the MSU community have rituximab as their main treatment, so there are lots of us who can help put your mind at ease.