Update on Crohn's drug!!

Hi Thanks for the info. lol gail

I bet the press release did not explain that Tysabri was pulled from the market, and clinical trials of Crohn's diseases and rheumatoid arthritis were suspended because during the trials two patients (that's people like you and me) developed progressive multifocal leukoencephalopathy. This is a deadly disease of the brain that progressively and fataly demyelinates the central nervous system. It is typically seen in immunosuppressed individuals. How does tysarbi work? By suppressing the immune system. There might be some of us out there so desperately ill that the decision to use tysarbi is warranted, but ...

The problem with all these new drugs is that they all have their proponents -- drug companies with huge investments -- who are sometimes less willing to give consumers the straight story. Crohn's patients live with the knowledge that they will have to play dodge the bullet with medications over the lifetime of their illness. We can only make the decisions that are best for us if we have all the facts.

For my money, rather than jump on the bandwagon and push to get to the front of the line to get every new drug that comes on the market, my plan is to stick -- as much as possible -- with the older classes of medications whose track records have been established.

But that is always the decision facing us w/every drug for our illness, whatever that illness is. We have to weigh the risks vs our quality of life - or even w/some illnesses w/our life itself.

I thank God each and every day that my Crohn's has remained mild enough that Imuran has kept me fairly comfortable and in and out of symptomatic remission. I hope to never have to consider the options of the biologics such as Remicade, Humira, etc. despite the wonders they have done for some crohnies.

On the other hand, I am grateful that they are an option for those who need more than Imuran or 6MP can provide.