Yesterday I started my new biologic medication. It is called Stelara (Ustekinimab) and we are hoping it will sort out my Arthritis flare and also keep my Crohns Disease under control.
I have had to wait for a few weeks from my rheumatologist deciding this was the next step to take. First she had to apply for the treatment to be funded. It is a very expensive treatment and they have to ensure I meet the criteria for it to be worth prescribing it, Then I had to wait for a spot on the Day Case Unit as you have to take your first dose after being trained to do the injection and then be observed for signs of reaction.
I have decided to do this post in a ‘Day Of The Life’ style so you can see how the day went and what happened with the appointment, as well as seeing how I spend the day around it.
9.30am – Ste comes and wakes me up. I don’t normally stay in bed till this time but with the fatigue I am experiencing at the moment I am often sleeping in. It often doesn’t help, I still feel just as tired when I wake up. I take my medication and then go and grab a cup of tea. I have also been struggling with one of my headaches since yesterday afternoon and am in quite a bit of pain, hoping these painkillers will help.
9.50am – I get dressed, choosing something comfy to wear at the hospital and that isn’t too warm as they are always so hot! I put on a bit of make-up but due to waking up late there isn’t much time for a lot and I just shove my hair up so it is out the way. Brush my teeth and I am ready.
10.20am – I toast a couple of hot cross buns and put some jam on but can’t eat them all. My headaches are caused by my high blood pressure and stress and I think I am definitely nervous now about this new drug. What if I am allergic to it? What if it makes me feel really poorly like Humira did? What if it doesn’t work? These headaches are extremely painful (coming from someone with an exceptionally high pain threshold) and they make me sick.
10.30am Time to set off. Parking can be a nightmare so have to leave in pletny of time. Ste is coming with me even though he isn’t feeling great. It is so good to have him there for support, I know it is helping me feel calmer.
11.30pm Parking was a total nightmare but I have managed to make it just in time. Grab a chocomilk in the waiting room
11.45pm The nurse takes me into a cubicle and I have a bed, yes! Time to fill in endless paperwork, have to list all my diagnosis’s and medication (of which I realise I forgot at least three later on). BP and pulse is done which are a little high but that’s normal for me.
12pm A lovely nurse comes round and I get a sandwich, yoghurt and some biscuits. Ste is already snoozing but gets a sandwich too!
12.15pm My rheumatologist comes in to check the blood results I had done a couple of days ago. My white cells are slightly high but they generally are. You aren’t allowed to take biologics when poorly or suffering an infection so all that has to be checked out. She asks how I’m doing with reducing my steroids and we have a general chat, she really is so lovely!
1pm The doctor is happy and has asked pharmacy to get the injection ready. The nurses call and ask that they take it straight out the fridge as it needs to be out for half an hour before injecting so it can come up to room temperature.
1.40pm It’s here. The nurse gets me to wash my hands and then I sterilise the area I will inject. At home I do my injection after a bath so I don’t need to do this step as the alcohol in the wipe can cause it to sting. She shows me the pen and I inject into my stomach. It doesn’t hurt at all and once I have fully pushed the plunger in it snaps back into itself so the needle can’t poke anyone! Needle goes into the sharps bin and I have to wipe a small amount of blood away and it’s done.
2.20pm I’m issued blood forms (2 weeks time, another 2 weeks after then every month) and an appointment to come back in a month to collect my next injection. The nurse is happy that I’m competent with self injectjng so I will take it home with me and do it there. The site has come up a little red which is totally normal. I also get issued some piriton tablets to take incase if a delayed reaction and I’m free to go.
3.30pm We get home and I put in some washing and plan tea. I have some chicken that needs using so cook myself Chicken Coconut Curry Rice for tonight and also a Chicken & Smoked Sausage Cajun Pasta dish for tomorrow night to take to Ste’s mom’s house. Check out the recipe for the rice dish here
7pm Me and Ste just chill after tea and watch some TV.
7.40pm I sign in ready for The IBD & Ostomy Support Show and have a chat with my co hosts, Rachel, Louise and Steve. Stephie is taking a break at the moment due to her health, I miss her face! Tonight we are talking about how our IBD & ostomies affect our friends and family.
Check out tonight’s show here
9.15pm The show ran over a bit as we were busy chatting but it was really good. There were lots of people on the live chat tonight asking questions and giving their opinions which is fantastic. I love the interactive element of the show. I got a little emotional tonight. Louise was talking about her ex relationship and some of the experiences she had bought some bad memories back for me. I’m so grateful to have met these wonderful people though and to call them friends. Both Steve and Rachel message me after the show to check I am ok.
9.30pm After emptying my bag I get into bed and do my night time meds. Then it’s snuggles with Ste and I read for a bit before switching off and getting to sleep. Night night!
Hope this has helped some of you understand what happens when you start a new drug. I have been on a few biologics now and am happy to answer questions and discuss with anyone the different options and what happens should you want to message me. I am not a medical professional but can offer advice from patient perspective and hopefully give support to others going through the same things.
wow, i am impressed at how well you’re handling this, well in your blog anyway, such a huge thing to be doing, yet just comes across as a normal day. hope the new meds go well and they sort the problems out including the headaches and other side effects #bestbootforward
Thank you! It’s pretty ‘normal’ for me now as I’ve been ill since being a baby so it is all I have ever known. I would rather get on with it than spend all my life moaning about being ill and not living! So far I feel pretty good so I hope it’s going to work well for me xx
Really interesting read. Sounds very daunting starting new medication. I hope it works for you. #fanilyfunlinky
Or #familyfunlinky as I should have put!! Sorry!
No worries, I am always forgetting to do that!! xx
Thankyou. It can be scary but at the end of the day I think of the quality of life I want to be able to enjoy while I am young(ish) xx
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This makes for a really interesting read, it’s something I wouldn’t really know about had I not read this! You seem to be coping amazingly, taking it all in your stride like a pro, and great that you have a supportive partner. Fingers crossed that this new drug will do it’s thing and make things a little easier for you. Thank you for sharing with us at #BestBootForward and we hope to see how you get along as the weeks go by 🙂
Thankyou so much! That is really lovely of you to say. Will definitely be joining in again, thanks for hosting! xx
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You’re handling this so well! I’m really glad you have your partner to support you. X
Thankyou so much. It definitely helps alot x
Honoured to have this post as part of Best Boot Forward. What an inspirational person you are and I learned lots by reading this post. Also was struck by how young you are or look to be dealing with all this. Blogs that raise awareness of real life issues are the most important ones of all in my opinion. Hope to see you back with us next week, in fact tomorrow now with Chloe.
Thank you so much! That’s really lovely to read. I’m 31 but often still get ID’d trying to buy wine. I am starting to appreciate it more now though! I will be there with bells on! Thanks for hosting x
Gosh what a day. That curry looks good, I think I’ll look into that one. I really hope the medication works for you and helps improve things you. Thank you for joining us at #familyfun
It was so delicious and super easy, the recipe is on my FB/Instagram. Thank you, fingers crossed this is the one to get me all sorted! Xx