At the end of my last post I had made the decision to start Vedolizumab (Entyvio) and was on the point of contacting the IBD Helpline at Guy’s and St.Thomas’. I dropped them an email, which is how contact is made nowadays.
The next day I had a call from the hospital to arrange my first infusion. “Vedo days” are Wednesdays and Fridays. As luck would have it I already had a haematology appointment arranged for 10:30am on Wednesday 29th May so the infusion was booked for an hour later (on the basis that haemo clinics usually run on time). A new chapter in my “Crohn’s career” was about to be written.
The last infusion I had was at the end of 2009 (Infliximab) and that took several hours to complete so I was intrigued to know if Vedo would be the same. I canvassed the opinion of some other “infusees” and the concensus was that, due to extra monitoring, I should allow about 4 hours for the procedure. Forewarned is forearmed.
Wednesday 29th May 2019 – Guy’s Hospital – IBD Infusion Unit
In the interim the haematology appointment had been cancelled due to the consultant being away. I took advantage of the free time to have a walk along the Thames, one of my favourite pastimes, and then a quick visit into Tate Modern to use their “facilities” (recommended).
I arrived at the Unit with a couple of minutes to spare and handed in my calprotectin sample. I was asked to settle myself down in one of the infusion chairs. A nurse came over to introduce himself and ask me a few questions before starting the infusion. The standard ones : what medications are you on; are you allergic to anything, how are you feeling? etc. He warned me that I might feel more fatigued than usual afterwards.
The nurse explained that he worked for Takeda, the company that manufactures Vedo, but was seconded to the NHS. I asked how long the procedure would take and was surprised when he replied “30 minutes Vedo followed by a 30 minute saline flush. 60 minutes in all”.
Cannula inserted; Vedo connected; and I settled down to read a book about heart surgery (“Fragile Lives” – Prof.Stephen Westaby). I know as Crohn’s patients we all go through some fairly challenging experiences and witness some gory sights when in hospital but even I found myself squirming at some of the Professor’s descriptions. Luckily there are no photographs!
Vedo finished, flush attached, back to the book and what seemed like a few minutes later the whole procedure was over. I was offered coffee and biscuits and then I was on my way home. My next infusion is set for 12th June., immediately after a rebooked haematology appointment.
Wednesday 12th June 2019 – Guy’s Hospital – IBD Infusion Unit
Time for my second infusion, but first there was a Haematology appointment to get out the way and with it a blood test. That meant I already had one hole in my arm and now I needed another! Once I had answered the standard set of questions that you have before any infusion the nurse inserted another cannula and I settled down with a book for the half hour infusion and then a further half hour flush. The only difference with my previous visit is that there were no coffee or biscuits on offer!
I had been hoping that the calprotectin result for the sample I took in on 29th May was available but unfortunately it takes more than 2 weeks for samples to be processed. (I wonder how the home testing kits can give a result so quickly?)
Next infusions booked for 12th July and 9th August.
Never one to waste a visit to London I spent the afternoon at the Royal Academy Summer Exhibition. Not a classic year in my opinion.
Is the Vedolizumab Working?
How do I feel? Maybe a little more fatigued but no great difference. Is it working? It’s far too soon to know after just one dose but how will I know if it is working anyway? A little explanation –
The lead up to being prescribed Vedo is described in previous posts but maybe I should do a brief recap. My calprotectin level started showing an upward trend towards the end of 2015. Subsequent colonoscopies and small bowel MRI scans showed nothing that would account for this so the issue was parked as a “mystery’”. During that period I’ve been feeling fine. In fact I’ve been OK since my reversal, in 2011, and not taking any Crohn’s drugs.
It wasn’t until a gastro appointment in October 2018 that I suggested we should do some further investigation as my calprotectin level had reached 1300. A capsule endoscopy had been mentioned in the past as it would get a good look at the whole of my digestive tract. My consultant agreed it was time to give it a go and one month later I was strapping on the recording unit and swallowing the capsule.
I did not get an official copy of the results until March 2019 but already had an indication, from a conversation with the Head of Department, that it showed mild to moderate inflammation in my small bowel. When I saw my consultant again we discussed starting Vedo . He had already obtained the budget to cover it (approx. £1,000/dose). How would we know if it was working?
If I had been suffering flare-ups then judging its effectiveness would be simple but as I am not feeling any physical symptoms the only monitoring will be regular calprotectin samples. I forgot to ask how often constitutes “regular”. At the end of the first year I will have another capsule endoscopy and an MRI scan.