When I saw Dr. M last Monday we ended up talking about medications. I had mentioned to him what I’ve had bad reactions to in the past(Lialda and Imuran) and he mentioned that there were a lot of new medications coming out for IBD. The only one that I was aware of that recently came out was Vedolizumab(Entyvio). He said that he felt that medication was unacceptable because it can cause Progressive Multifocal Leukoencephalopathy(PML) which is a potentially fatal brain infection.
I don’t necessarily trust the FDA to always be able to draw these lines. So we’re going to have to be able to determine this ourselves or our doctors will. So, where do we draw the line? When do we say that these side effects are too dangerous?
From my experience, before taking anything I now ALWAYS research first before taking anything. It is scary how dangerous these meds actually are and so many drs just recommend them like it’s no big deal! You can’t trust anyone, drs or FDA. Of course every medication has it’s risks but there is definitely something that needs to be done for these seriously harmful/fatal meds.
It also sucks that there aren’t a whole lot of drugs that treat these chronic illnesses. I’ve already failed 2/5 classes of drug that I can have. And I can’t live on steroids and antibiotics for the rest of my life.
The FDA need to take a closer look at it’s regulations. There was a new pain med that got approved a few months ago that a lot of doctors said shouldn’t be approved and they approved it anyway.
I’m pretty sure that Humira has the same risk of brain infection…
I’m curious what other medications have come out/are coming out.
Interesting. I’ve only been able to find that Humira is associated with nerve disorders, cancer and Chronic Heart Failure. Not that I want any of those either 🙁
I am too. I’ll have to do some research and see if I can find anything.