What biologics treat Crohn’s and what if they fail?

Hi.

She has already tried the heavy hitters. Everyone is different, but I had very little luck with any of them to tell you the truth.

I did have a short run of luck with Humira. Did a great job clearing up my skin issues too.

It may be different for Crohn's, but for UC the biologics are normally the last drugs used, and I've never heard of anyone trying one a second time. That is most likely more about cost than their effectiveness.

What's next after those? Well, for me it was surgery. I had UC though so it's a bit easier since my disease was primarily in my large intestine and rectum. She would have more variables to her decision.

It's a tough decision, but for me it worked out well.

How old is she? How long has she been dealing with this?

I wish her luck with the next med. Hopefully that will be the one.

I've had Chron's for over 30 years and have been in remission for many years. Because of recurring polyps at the Ileocecal junction and narrowing of the junction over the past two years, my doctor wants me to start Stelara to avoid a risk for future bowel blockage. In past, doctors encouraged biologics but I resisted and have been stable on mesalamine for a very long time. I'm really anxious about starting a biologic, especially since I am in remission, and after reading about the risks; especially for skin cancer. I have a history of basal cell skin cancer (2013-2015). Anyone in remission who started on Stelara, or have a history of skin cancer?

Hi @dg0797, thank you for your post. You will see that I moved it to a discussion about biologics and Crohn's so you can connect with other members that have similar questions.
Is the risk of skin cancer only if you are overly exposed to the sun while on it or just from taking the medication?

Thank you for letting me know about the biologics group. I am not sure if the increased risk is with over exposure while on Stelara or just an increased risk overall. A good question for me to ask the doctor. Thank you!

It’s been a year and a half since you posted, but if it still helps I’ve been on Humira for 5 years for three HLA-B27 diseases: Ankylosing Spondylitis (AS), Crohn’s Disease (CD), and Uveitis.

It has been very effective against AS & CD. No idea if has affected uveitis as that wasn’t an ongoing thing - only ever had one flare - but I haven’t had any repeats. I’ve had 4 colonoscopies in those 5 years and my Crohn’s had improved each time. The last one a year ago my gastro said there was no sign of the CD.

When I started on Humira my then gastro warned me that biologics often eventually stop working and patients have to switch to another biologic. He also said that he had never had any patients have side effects to Humira.

That sounds great. Entyvio has stopped working 3 years ago for my UC but no one will switch me. Colon looks good. Feeling very confused and scared. No one will listen to me and can't get to Mayo. Maria.

It's a risk with Entyvio. I've had 2 skin cancers. Basil cell. Maria.

Note that all of the heavy duty drugs have potential serious risks, including Humira.

I developed neuropathy in my feet and lower legs 2 or 3 weeks after I started Humira. The neurologist told me that this is a common side effect of TNF blockers (including Humira). Then I had a stroke 3 or 4 months later. The doctors were split on whether it was caused by Humira or severe ulcerative colitis inflammation.

Humira also did not do me any good. So I next tried Entyvio, then Stelara and finally Rinvoq. Rinvoq was the only one that worked for my UC.

Fortunately I personally did not experience any significant adverse effects with these drugs other than Humira. But in each case my GI doctor advised that the potential risks were real, though after evaluating my situation we agreed the potential benefits justified taking the potential risks. If my UC inflammation had not been so severe, we might have reached different conclusions.

Everyone is different, so it is very difficult to figure out what to do. There are also a lot of continuing developments - both in terms of new drugs and what is known about existing drugs. Hopefully you can find someone with IBD experience who can recommend another drug or otherwise how to best manage your UC.

Thanks. I've decided to refuse Entyvio and all other biologics. Let nature take it's course. My entire colon is affected and I have no quality of life. I'm basically crippled after failed foot surgeries. I'm sorry for all you have been thru. How do you know if Rinvoq is working? Do you feel good again? Maria.

Basically throughout the failed treatments I had serious diarrhea/incontinence, so that I also had no life. The really bad part started in 2020. At first the Covid lockdown was a main issue. But after things opened up I still couldn't go anywhere because my UC was so out of control.

Things got complicated because this interfered with taking care of other issues (including a delay in resolving a broken hip with a hip replacement).

But after I got some improvement on Stelara I was able to get out at least a little. By improvement I mean 6-8 watery BMs per day and the ability to get to a restroom before I had an accident most of the time.

That was still considered severe, and a colonoscopy in Aug 2022 still showed severe inflammation. So we decided to try Rinvoq. I was considered at high risk due to my age and stroke history, but the studies suggested Rinvoq was doing better than most alternatives for people who already failed with other drugs.So I decided it was worth a try.

I could tell it was working because within a month or so I went down to about 2 BMs a day and was pretty much under control. A colonoscopy in Jan 2023 confirmed substantial improvement so that the UC/inflammation was reclassified from severe to mild. At that point I felt I finally had my life back.

Unfortunately the Aug and Jan colonoscopies also indicated I started developing precancerous conditions that were not helped by the Rinvoq. In April 2023 a procedure to remove a precancerous area revealed that it had started converting to colon cancer.

At that point I chose the surgery that i had fought against for so many years and had a total colectomy with end ileostomy. The good news is that they got all of the cancer in April and the June surgery was clean. The sad part is that I felt I had finally found something that worked for the UC and then had to abandon it. But I have no second thoughts about doing what was necessary to deal with the cancer, and am thankful I can now get on with my life.

I don't know your situation, but if your colon is shot you need to consider how to avoid colon cancer as well as the importance of having quality of life. As I said, it can be very tough to figure out what to do. Things that work for some people don't work for others, and usually there doesn't seem to be any way to know ahead of time which group you are in.

The other elephant in the room besides cancer is the high cost of these drugs. Stelara made the top ten list of drugs that are the first group subject to Medicare price negotiation. Insurance coverage and financial hardship can impact your options (although there may be programs that will help).

I sympathize with your situation and hope you are able figure out what is best for you.