CGK - I hope you can hang onto your colon. I know how you feel. I have had all the Dr's telling me for years to get myself into the operating room, but I always said I want to wait one more year, just incase a new drug came out. It is difficult.
SLR - Yes, this drug is very slow to start working. I did improve things for me initially (which is why I am in the blinded group and not open label) and then after around 4 months I started to see a gradual improvement every month. I can understand why you dont want to improve until after the 6 weeks in order to avoid placebo, but I think you can go onto open label if your symptoms return when you are randomised, but I am not sure on this.
There is another lady on the same trial at my hospital and it took her 4 months to see an improvement but she is also blinded, which is strange.
30mg of pred to keep you stable is bad. I really hope this works for you. It is a shame you cant take Imuran as that is the only reason I was able to get by on 10mg in the past.
You almost certainly have secondary addisons disease and you will need to be referred to an endocrinologist when it comes to lowering your steroids, it was them who got me off the pred. My adrenals were dead after 7 years of pred. But, now they are back to life! It is SO nice to see my normal face in the mirror again after all these years, LOL. I forgot what it was like!
I gave a junior Dr a little pep talk last week. I told her GI's must start routinely testing our adrenal function before weaning us off the pred. It was the reason I flared up so many times in the past!...wont go into that one again, too long a story.
aguywithuc: I got onto the trial when my GI asked me if I would like to enrol, and I was screened for HIV, TB, Hepatitis and a flexi sig, and that was it. Because I was one of the first people to go onto the trial I was randomised immediately (ie a chance of placebo) but that no longer happens, as that quoto has been filled now. Everyone now gets active drug in the first 2 months and then you are randomised into real drug or placebo. Hospitals are still recruiting. The company is called Millenium. As its a trial, availability is down to individual hospitals agreeing to take part, so that in sense, it is a postcode lottery.
wimofthree: I do remember now about PML. It was mentioned in the trial information pack i was given. However, the literature made it very clear that vedolizumab does not carry the same risk that tysabri did, as it doesnt fight infection in the brain - unlike tysabri. You are closely monitored for symptoms of PML. The literature also states that in phase 1 and phase 2 of the trials there has not been any reported cases of PML. But, like every drug, there are theoretical risks. You are correct MLN002 only goes to the gut.
I have a scope in early January and that will show exactly how much my colon has healed. Will report back with the results!
Best wishes