Entivyo … my last option

A couple of weeks ago, I noticed that I have a lot of bruises. Also, my hemoglobin level dropped from 11.4 to 10.7 in 16 days. Saw my GI and he referred me to a hematologist and had to stop Rinvoq until I had seen her. She confirmed the idea that Rinvoq as a JAK inhibitor causes bruising and bleeding. She found that I have a lot of anemias. So, she told me that she would give Rinvoq the kiss of life to prolong using it and prescribed 3 meds to stop bleeding and put me on SC EPO injections for anemia twice per week and B12 injections weekly. However, she warned me that if I get any kind of gum or nose bleeding, we would stop Rinvoq.
Saw my GI yesterday as I had severe pain in the TI. Informed him of what she has said and he reduced the bleeding meds to 2 and decided to switch me to my last option Entivyo but after giving Rinvoq the last chance. It’s really hard to fail 2 biologics and 1 JAK inhibitor in less than 2 years. My GI told me that he is skeptical about Entivyo but I have no other option left. Praying that Entivyo turns out to be effective. I’ve already struggled a lot with Crohn’s for 17 years.

Minnie,

I was just going to mention what @straydog had said, that Entyvio is reputed to take time to get to a therapeutic level. I've heard up to 6 months. Really hoping this option is a good one for you.

Minnie,
Ditto on above.

Entyvio is my next drug if Remicade should fail. My GI said that it will take at least 6 months to start feeling better. Hopefully you will find that you start to get better now or that the Entyvio works.

Saying lots of prayers for you.
Clo

Post Edited (clo2014) : 8/11/2024 4:06:29 AM (GMT-8)

@Clo, haven’t started Entivyo yet. Still struggling with Rinvoq though I’m flaring up now. My GI has other calculations. When I told him that other fellows had mentioned that Stelara is a slow burner and that I stopped it after only 6 months and should have given it more time, he objected to the idea and said that it doesn’t take that long to work and I did not respond to it. So, may be these are his convictions for Entivyo.
@Randy. My GI refused to let me try it given that I had an allergic reaction to Remicade. He mentioned that the possibility of having an allergic reaction is 50% but he won’t take this risk. Had I stopped Remicade because of antibodies or any other reason other than an allergic reaction, he would have put me on it.

Thanks Randy for sharing this. Glad that you could take Humira. My GI refuses totally the idea that I might get an allergic reaction from Humira as has happened with Remicade.

@Clo. On a second thought, I decided to listen to my doctor. He convinced me that Entivyo is not successful with fistulas. So, I have no other option left other than staying on Rinvoq. He even lowered the dose to 15 mg as I’ve developed a lot of side effects lately. I have reached a resolution that until they develop a new biologic, I have to cope with Rinvoq’s side effects.