Crohns Colitis and new FDA approved IV drug Entyvio?

Has anyone ever heard of someone being diagnosed with "Crohns Colitis"? (not Crohns OR colitis) My son had Ulcerative colitis so I am far too familiar with UC, and my 30 yr old niece was recently diagnosed with Crohns Disease. But she just went to a new GI who told her that her prior GI had misdiagnosed her with Crohns disease and that she actually has "Crohns Colitis" and told her that it is a rare form of Crohns affecting only 10-20%. He also does not want her to start Humira injections, which the former GI had her scheduled her to start, and told her that Humira causes cancer and instead wants her to go for infusions for a new drug recently approved FDA this past May called Entyvio. My son had Remicade infusions, but I never heard of this new drug and was wondering if anyone else had.

Thanks for any feedback!!

Pam

There are a few people on this forum with Crohn's colitis. Im pretty sure it is just crohns disease that affects the colon (hence the word colitis).

There are about 5 or 6 threads on here about Entyvio so you should check them out. In short, according to the available data, its the safest biologic approved for UC. It was supposed to be approved for Crohns in June but I dont follow Crohns Disease stuff at all so I didnt see the publication for the approval if it exists

Keep in mind that in order for most insurance companies to cover Entyvio, you must have failed one of the anti-TNF drugs first

We have a few members on Entyvio. I think that GI was harsh saying Humira causes cancer. There is a low risk.

I agree it was harsh to ID the Humeria as the culprit for future cancers. The evidence points to the immumodulators that are used either solo or with the biologics, not the biologics themselves. I would get a. Copy of the pathology report to see the description of the colon. They can also send the actual slides to another pathologist if you need a confirming opinion.

Colitis means inflamation of colon. So she was never misdiagnosed. It means she has crohns limited to colon. It is still crohns. There is not much difference in treatment of UC or Crohns. Only when she needs surgery, options will be different.

from humira's website safety info: "Cancer. For children and adults taking TNF blockers, including HUMIRA, the chance of getting lymphoma or other cancers may increase. There have been cases of unusual cancers in children, teenagers, and young adults using TNF blockers. Some people have developed a rare type of cancer called hepatosplenic T-cell lymphoma. This type of cancer often results in death."

I know someone with Crohn's that developed this type of lymphoma last year taking humira alone. It is now considered terminal, as it has spread to his brain and spine. He is 26 and they don't know how much longer he has. I would never dismiss the risks of drugs just because they are low risk. They are all real or they wouldn't report them. (it does sound as though the risk is higher in younger people.)

It is a very personal choice to use or not use a drug. Everyone feels differently about the weight of risks. That being said, it's important to remember the risks of any drug you take so you know to look for the symptoms and get help as soon as possible. I'm sure new risks will come out with this new drug over time like most drugs. I personally chose not to take Humira, and needed to have Jpouch surgery. I know others who have been on Humira for years and feel great. Personal preference, there is no right or wrong, just be informed.

@bania- Couldn't have said it better myself!

@betsaronie- Way to scare the crap out of people on Humira! Geesh.