I just did an awful thing

the only person that can answer that question is you - pretty sure you did that already -

That is a very poorly constructed trial if it relies on patient feedback for whether the drug is effective. You may be beating yourself over the head for nothing. It may just be to measure drug v placibo effect or something. Every drug trial I have read uses a grading score based on colonoscopy to rate effectiveness

Also yes the trial is very disorganised, mainly I think because they KNOW simponi works because it's prescribed in other countries so this trial is just like a formality. They rely solely on my feedback and don't even scope me.

It is what it is. I respect your decision. Don't beat yourself up over it. We have all had weak moments.

I really appreciate you saying that. Thank you. The system is so flawed. I have high hopes that I'll keep improving on this treatment and it will all be okay.

I probably would have done the same thing if I were in your shoes. This doesn't sound like a very good trial though. One month....really?

Not your best moment, but let it go.

I think most drug trials that rely on patient self reporting adjust for inaccurate reporting of symptoms.

I've been thinking about it a lot and talking it through with people and I no longer feel guilty. The drug HAS improved me, just not in the criteria they care about, and I just need to give it more time. They're rushing through this disorganised trial because they desperately want biologics to be legalised, and I'm helping to do that and get people the treatment they need. I don't think it was a weak or evil moment, I think I needed strength to do what was right for my health. It wasn't fair to make me respond within four weeks if I wanted more, it takes the majority of people longer than that.

It was a miracle that I found this trial and got to go on biologics instead of chemo, and to have thrown away the opportunity would have been frivolous, especially when I actually have improved a bit and I think I will continue to. It was a necessary evil I think.

Sorry but what do mean Simponi trial? It has been out of trials and is regularly subscribed.

It should be noted that anything you say and what you have during a trial are recorded. For good or bad. So if it is a trial and you get the flu that is recorded. Or say you get migraines during the trial. They might not be related but if you mention them they are recorded.

Thanks guys :)

By chemo I mean methotrexate. I'm aware that it's a lower dose than a cancer patient but it was still a scary prospect for me.

In England where I'm from biologics are not yet approved for UC maintenance. I fought hard for infliximab but the only way I was able to get any kind of anti-TNF was by going on a clinical trial. I know it's regularly prescribed in other countries, which is why I think this trial is quite lax.

My bloods have never been an accurate judge of how sick I am. In fact they're pretty much normal at the moment except for high platelets. Plus they seriously don't care about my bloods, they're literally just asking me if I'm better.

Well, since this trial wont really have any bearing on global usage of simponi (i.e. its not one of the first phase II or III trials of the drug), I wouldnt sweat it.