Hey guys, just thought I'd give you an update on how I'm doing with Entyvio....I know a lot of people are curious how people are doing on this new drug.
I had my 3rd infusion two days ago on Thursday. Although I'm not doing 100% I'm doing much, much better than I was just two months ago. My situation 2 months ago was this:
-10-20 BMs per day
-extreme urgency
-have not left the house AT ALL in 4 months
-waking up 3-6 times per night
-almost completely watery BMs
-on/off pred
Here is where I've been the last 3 weeks or so:
-4-6 BMs/day
-moderate urgency (I think the majority of the times I have urgency is from gas - but it's hard to tell right now)
-I leave the house almost at will now (I had dinner at a restaurant tonight and we stopped by an ice cream place on the way home!)
-Sleeping through the night almost every night (this is HUGE!)
-somewhat formed BMs (not SOLID, but kind of formed, and not eery time - although sometimes I go and it's just to release some mucus)
-off pred for 3 weeks now
I used to wake up and have to IMMEDIATELY run to the bathroom, I can get up and chill in bed for a while and not have to until after I eat breakfast (not all the time but sometimes). Now I usually wake up - have a pretty big BM, sometimes two, and then I'm either good until night time or I have to go once or twice during the day. At night I sometimes I have to go and sometimes I end up going to bed without going at all. I am pretty gassy especially at night, but I feel pretty good throughout the day.
I'm not declaring Entyvio my miracle drug yet - I want to get a lot better still and I want it to last for a LONG time, it's only been a few weeks (6 weeks since my first dose and 3 weeks since I've started feeling better).
It's worth noting that I switched from VSL to florastor on my doctors advice last week, not sure if it's making any difference or not. Also two days ago I started 6mp again just to prevent the small chance of developing antibodies - other than that no other meds right now. I took a course of abx last week (for a double ear infection) which actually set me back, but a few days later I was back to my "upward trend".
I have my life back right now, and for that I'm very thankful. I really, really hope it lasts and continues to improve. In the back of my mind I have a constant fear that I'm so fragile and any day now I'll start sliding down hill again - but I'm hoping that won't happen, time will tell I guess.
Sorry this turned out to be a long post...I guess I could have just said "I'm doing better" and saved you all some time. :)
Post Edited (UCHater) : 8/9/2014 6:03:33 PM (GMT-6)