An ER visit to a hospital with a good GI department might result in a quick turn-around referral. Also trying a biologic that has a patient assist for uninsured patients might be wise. But this could still all take weeks.
But if you are not seeing a GI, who put you up for the trial?
Many biologics can take a while to work. It is possible that this new drug takes weeks or a few months to work. Combined with a 34% chance of not getting the drug, it is all very risky.
As for pred, while some are refractory, c-diff has to be suspected when pred does nothing - even if you test negative for c.diff.
If I understand, you have no meds between flares, or anything other than pred during flares. You have just burned through past flares. This is sad.
A new GI is going to want to scope you, and run blood and stool tests. This will be expensive without insurance. Still, finding a GI, maybe through an ER that does some initial testing (more likely to do MRI than c-scope) and getting meds might be better than rolling the dice on this trial.
Yes the ER is an option. The protocol they use is steroids though and I'm really trying to avoid that.
I was not put up for a trial. I simply called them and then they got all my records from the hospitals I've been in and my last GI doc.
I know biologics can take awhile to work but what else can I do?
How can you have c diff if you tested negative? Is there a better test that is more conclusive?
I have meds that I could take in between flares. I have apriso, sulphasolazine, and a couple other mesalamines. They never have done anything so I just stopped taking them. I was on them for prevention when I had my last flare.
What other meds would you suggest that could be given out quickly and be effective to stop a flare? The GI thats involved in this study is by proxy my new GI because hes giving me the colonoscopy and I'm now his registered patient. If I don't make it to the study or if the study fails, he can prescribe for me as he has all blood, stool tests, past med records and will be doing my colonoscopy.