2nd official G I appointment tomorrow

First off thank you for all the caring advice. Reading it has all ready been a help. Yes, I have taken all my predison today. I now know that was very dangerous. Thinking positive today and try to not let the mood swings happen. This helped because I went to the gym and just walked. It felt so good to do some physical activity. I went from one extreme to another with working out so it has been hard. Often times I find exercise as the best drug. I hoping to do a little more each day as I become stronger.


Tomorrow I have my 2nd GI appointment. At this point I am leaning still toward remicade. Though, they keep mentioning tying to put me in a clinical trial. Has anybody ever done one? If so how did that go?

My doctor likes it when I am direct and not emotional and said come in prepared with questions allready written. I started the list but was seeking help.

Are there any questions you wish you had asked your doctor in the beginning?

I am thankful for any advice or comments you all give me. I especially liked the person who said everything happens for a reason. I am a firm believer in that. Chrons will just make me stronger!

Thanks!

If you haven't already discussed, I would ask your doctor if your disease is mild, moderate or severe.  That may help guide you towards your medication path.  I glanced at your previous post but didn't have time to read everyone's replies and I wanted tgo point out that studies are showing that an anti-TNF like Remicade (infusion)or Humira or Cimzia (injections) given early in diagnosis shows better results than the old step-up therapy (starting with Pentasa or Imuran and ending up at the anti-TNFs).  All that may be confujsing to you if you are new to the disease, but ask your doctor about step-up vs top-down.  My son has had Crohn's since age six and I wish they had known that when he was diagnosed.

The main reason I wanted to post is about clinical trials.  They are not always for experimental drugs and I seriously doubt your GI would recommend an experimental drug when you haven't tried any therapy.  So the clinical trial may be for some of the drugs you would be considering anyway.  My son has been enrolled in 4 clinical trials.  They vary from being observational - putting you in a pool of data- to genetic research to testing the best dosage of drugs.  You get free medication, free tests and help further the study of Crohn's Disease.  You may have to participate in more frequent visits or more frequent testing than you might have if you were put on medication and were doing well. You may have to do some surveys.  Of course ask your doctor and the clinical trial coordinator for full details before you sign up.

 

I was referring to response and remission being better with top down vs step-up.  Jury is still out on avoiding surgery.