I'm starting vedolizumab (Entyvio) on the 2nd November

I hope you start to notice something with the Entyvio. I didn't feel like it was doing anything until after the 3rd infusion. I was also on prednisone and tapered off right about the same time as the 3rd infusion. I had so many things happen a month after but I think it was more getting off the pred. I had my 4th infusion last month and I definitely think it has worked. I'm still having a few days here and there with loose stools and cramping, but I'm definitely feeling better.

Now if they could figure out how to alleviate my joint pains I'd be in good shape.

NCOT, It took me a good 4-5 months before I started getting any relief from Entyvio, but according to my scope last Wednesday there is NO active disease in my colon and the first 30 cm of my small intestine. In the beginning I was convinced it was doing nothing then all of a sudden it kicked in. So hang in there it just takes time to take affect. Waiting is always the worst part

NCOT, while I was technically in remission from surgery when I started Entyvio, I was still having perianal disease with two fistulas. After about a year on Entyvio, both fistulas closed and I've been fine down there ever since. I just got scoped every which way last week and there was no disease activity or inflammation seen anywhere. So I'd say the Entyvio is working pretty darn well. Waiting for it to work is the difficult part, especially if you're feeling sick. I was fortunate that I wasn't really too sick when I started it.

Had my 4th vedolizumab infusion today, folks.

I was actually due to have it last Thursday but thanks to the usual unholy bad timing which bedevils my life I had an inquistion, sorry interview with the DWP that day. If you don't know who or what the DWP are, count yourself lucky. They are the modern day equivalent of medieval torturers. They don't actually physically torture you - they aren't allowed to do that, at least not yet. They just mentally do it by threatening to cut off your benefits at any time. Anyway, so yeah, I had been awarded a disability benefit for two years in October 2015 but despite the two year period being nowhere near up yet, I still had to go in for an assessment. Won't know the decision for 4-6 weeks.

In the meantime I had to reschedule my infusion. Couldn't get it for the day before or day after, so I made it for today. I'm hoping it will sort out the symptoms which have been creeping back over the last couple of weeks: the urgency, the (occasional) bleeding, and the godawful tenesmus combined with passing two drops of bile acid diarrhoea. Restless legs at night time have been driving me nuts too. I bought a magnesium supplement today. If that doesn't work, I'm gonna find out what my last ferritin result was, as I know iron deficiency can sometimes be a cause of restless leg syndrome.

The infusion went without a hitch. As usual the nurses were lovely. My only complaint is the tea had sugar in it, when I said no sugar ¬_¬. But you can't have everything.

One thing I've noticed in this place is that my temperature is consistently higher than readings I get at home. The first reading was 37.6C (99.7F) and thereafter ranged from 37.2 to 37.4. When I got the highest reading I hadn't drunk or eaten anything hot beforehand. The nurses use ear thermometers, whereas I have a digital thermometer that you stick under the tongue. Anyway, I rarely get readings over 37.0 with my thermometer, but as soon as I go into hospital it goes up. Bit weird that.

My weight also has gone up :-( I'm clinging to the hope that the 7 in the 57kg was really a 1 and not a 7, but I don't think so. I'll weigh myself at my parents tomorrow just to double check. Probably will have to go on a bit of a diet, which is boring at any time of the year. Gah.

So yeah, that's about it. Next infusion is on the 11th April.