Vedolizumab #1 & #2 – Do I dare hope..?

October 19th signalled the start of Vedolizumab for me.

Anxious, nervous and some what hesitant. 

As with any new biological treatment, I underwent the safety briefing and pre-sepsis checks – which happen before EVERY infusion at Good Hope – had my blood work back; had that explained to me – all inflammatory marks were raised as expected but my CRP was exceptionally raised at 41 (high for someone one biological treatment and immunosuppressant [MXT]) – and then started the fight for a vein to cannulate. Sometimes this can take a couple tries, usually because I’m abit dehydrated. This time, first try, which is always nice. The cannula will stay in for the duration of my time on the ward today.

With Vedo, one infusion consists of 1 vial of 300ml of medication in a 5mg powder form. This needs to be reconstituted in sterile saline, swirled in the vial for 20 seconds, before being left to sit for 20 minutes. In the twenty minutes, the solution needs to be fully dissolved before being added to a 500ml bag of sterile saline (see ENTYVIO for more details). In this time, I’m usually cannulated. 

Vedolizumab targets the white blood cells in the bowels, reducing the inflammation in the gut. This means the response to the drug is slow. This first infusion, I had a two-hour observation time following my infusion, which I had my blood pressure, temperature and pulse monitored every 20-30 minutes.  I then went home to rest.

The following couple of days I felt not much difference. Then the full force of fatigue hit me and I began to feel the start of a cold. Given the time of year, I was expecting this. But having been so unwell for such a long time with something chronic, a cold can always hit harder and take the wind out of you. That’s what it did, the weekend before Vedo #2.

That happened today. Being the second one, I was prepared for the usual long wait post infusion and allowed plenty of time to then get back to work. This was my first mistake, unbeknown to me at the time. I arrived early, so I wasn’t rushed or panicked.  We had a new location for the infusions at the hospital which makes having them much more private and relaxed. This has helped tremendously.

Everything was going well until about 2/3 of the way through the infusion when I started feeling anxious. With a blocked nose, this meant my breathing was more noticeable and my nurse did my obs again; they were normal. I come off the pump, have my obs done again – probably 15 mins since the last ones – normal – used the bathroom and got the iPad out to carry on with some reading. An hour or so passes, I get up to go to the bathroom again – unusual for me, at this point – and I feel very weird; almost dizzy and sick. I come back and I can feel the cold; something I’m usually not. I put on my jacket and try to just push through it. Nope, a couple of minutes later, my nurse turned around to me; orders me to the bed in the next bay and goes to get a doctor. It’s not a reaction to the medication but I felt faint.

After the doctor checks my obs again, they debate giving me some fluids but I did need to eat and drink to see if it came back up. It does after some tea and sandwich but am forced to stay until I no longer feel dizzy so I can drive home. Abit of a stressful lunchtime, to say the least.

I feel foolish. I was meant to go  back to work after the infusion but had to call in and tell them I wouldn’t make it. I should know better by now that even with a new drug, I need to take a day off. I need to have someone collect me and I need to rest. I can’t expect that on infusion two that I will feel 100% straight away; that I am still getting rid of Infliximab AND Methotrexate from my system. I will have a weakened immune system, even more so now, and need help.

I also feel like a complete newbie again. 

The first day that my infusion nurse has a new location with more nurses and I’ve had to use a bed and have a doctor to come and see me. As I was leaving, my consultant was speaking to her to make sure I was okay. Which is sweet but I feel like such a fool and burden; because I should know better! I’ve been a biological patient since November 2013, for goodness sake!

The positive here, is that we know for next time, to keep an eye on my blood pressure. That I need to take the day off. And driving myself might not be a good idea until the medication is well established in my system. The biggest thing today was how much care and attention  I receive from my IBD team. And I really need to fight to keep that the same; given the NHS Trust’s changes..

My next infusion is on Monday 30th November. And I do have my MRI scan on the 13th too. Perfect timing; just in between infusion two and three, so they can get a definite clear picture of my strictures and disease. A silver lining, if they ever was one.