Lost hope

because of a screw up I was on remicade, it was working so well. I was able to go out and eat with family, had the least amount of pain in 9 years. My insurance didn't cover it, so they took me off it said try this instead. It's not working the pain is still there, not just stomach pain; muscles, joints, just everything hurts. Everything that hurts was doing much better. I can't even get out of bed, scream in pain to just get up to go to the bathroom. I'm only 21, I didn't even get to finish school. I want to be able to make my own meals, take a shower without a chair. But because someone out there wants to save money, my life is literally on hold unless I can persuade the insurance to pay for the remicade. I just don't know what to do, the tests that have been done say no ulcers, but the pain is still there. What do I do to get back on this medicine that let me be able to do everyday things. I've been having to take lorazepam because the pain is bad enough to give me panic attacks. Help.

I agree with Gumby. You need to get back to your GI and be insistant on getting to the bottom of what's causing the pain, and that you're current treatment isn't working.

At 21, I know you're an adult, but could you have a Parent accompany you? It might help to have someone in your corner.

Remicade is the state of the art treatment for Crohns. I really hope you are successful in finding some alternative funding so you can get back on it again. I'm not familiar with the American system, in Canada we have a government funded programme for Remicade and Humira.

Like everyone else stated here Remistart is awesome in that it basically pays for your infusions and leaves you with just the nurse fee at a few hundred dollars. I too have major joint pain and fatigue when I'm in a flare while on Remicade which they labeled fibromyalgia and chronic fatigue syndrome. However Remicade helps bring down the severity of it big time. Bug your gastro to send in the paperwork to get it started. Gluck!