Need reassuring re: Entyvio

[stephie82]

Hello, I am new to this board and have had crohn's for many years. I've exhausted most of my options outside of the biologics. The only med that worked for years was prednisone, saved me more than once. I weaned of it, went out of a 13 year remission, and have had 3 surgeries since, and an ileostomy which has been reversed now, but feel sickly ever since. Had high antibodies to Remicade, and now I will be starting Entyvio next week? Doctors won't treat me with more prednisone as they favor biologics.
Since it's new to me, I am a little scared. Presently I have a stricture, at the small/large joint of the intestine and was told no more surgeries so I am scared of the unknown. I also notice the posts are decreasing, is the drug falling out of favor?

 

[BigL]

Hi. My daughter is 20 and has been diagnosed with Crohn’s last August. The doctor put her on Entyvio as a 1st choice and nothing else. First month, she had symptoms still and then her symptoms got a little better but now shes having a full blown flare up. She gets another Entyvio infusion next week. The doctor has ordered more tests to see whats going on. I need to find her another doctor, he doesnt answer all the questions we have and we feel more lost when we leave. She is under alot if stress, so that could contribute to flare up. For 2 weeks after infusion, I know you have to be careful of getting sick. Dont be around anyone who is sick or has had a live vaccine recently. I’m sorry you have to go thru all of this.

 

[stephie82]

Sorry to hear, hopefully she will still improve. I haven't had my first round yet, but the one thing I can tell you with crohn's, while not a cause, stress is a big trigger at any time? Entyvio sounds like one of those drugs that work wonderfully for some, and doesn't do a thing for others? Hopefully it will still help her. Wish me the same.

 

[crohnsinct]

Hey there, I think people tend not to post much on the subforums. My 20 year old daughter is on Entyvio after losing response to Remicade. It is known to work better for colonic Crohn's than small bowel. Small bowel disease tends to respond better to Stelara. I guess your disease being right at the junction makes either one a choice.

Entyvio doesn't have as good a success rate as the anti tbf's but as there is more experience with the drug they are able to tweak dosing and interval to get a better success rate.

IDK if your GI told you but it is a very slow drug in terms of getting you into remission so you have to be very patient and not give up on it too soon. Estimates are 12-16 weeks. My daughter tool almost 11 months.

@BigL has your daughter's GI tweaked the dosing and/or schedule. Standard dosing is 300mg every 8 weeks but you could dose more frequently. My daughter started at 300mg Q4 and is now on 600mg Q4 and finally having some response.

 

[stephie82]

Well tomorrow morning is the day. I want to thank you BigL, crohnsinct and my little penguin, your responses really helped me not to feel so alone and afraid. I am grateful for that. Hugs

 

[BigL]

Hey there, I think people tend not to post much on the subforums. My 20 year old daughter is on Entyvio after losing response to Remicade. It is known to work better for colonic Crohn's than small bowel. Small bowel disease tends to respond better to Stelara. I guess your disease being right at the junction makes either one a choice.

Entyvio doesn't have as good a success rate as the anti tbf's but as there is more experience with the drug they are able to tweak dosing and interval to get a better success rate.

IDK if your GI told you but it is a very slow drug in terms of getting you into remission so you have to be very patient and not give up on it too soon. Estimates are 12-16 weeks. My daughter tool almost 11 months.

@BigL has your daughter's GI tweaked the dosing and/or schedule. Standard dosing is 400mg every 8 weeks but you could dose more frequently. My daughter started at 300mg Q4 and is now on 600mg Q4 and finally having some response.

Hi. So sorry I took so long to respond. Im new to these forums and Im just figuring out how it works. Thank you for replying. My daughter is getting more tests done this week like a fecal calprotectin, Entyvio though level, mri, and endoscopy. And shes having another infusion in 2 days. Shes been in Entyvio for about 8mos. Shes on 400 every 8 weeks now. But doc said they may have to do it every 4 weeks or maybe something else, depending on test results. She is so tired all the time and now has a soar in mouth, which is new. She is going to college and is so involved with her studies, she def puts her health 2nd Im afraid. I wanted to ask and I know its personal but do you see food in stool? She says she sees like everything she eats. Im so worried about her. Id like to get her a 2nd opinion but its so difficult with her low income state health ins.

 

[BigL]

Hi. So sorry I took so long to respond. Im new to these forums and Im just figuring out how it works. Thank you for replying. My daughter is getting more tests done this week like a fecal calprotectin, Entyvio though level, mri, and endoscopy. And shes having another infusion in 2 days. Shes been in Entyvio for about 8mos. Shes on 400 every 8 weeks now. But doc said they may have to do it every 4 weeks or maybe something else, depending on test results. She is so tired all the time and now has a soar in mouth, which is new. She is going to college and is so involved with her studies, she def puts her health 2nd Im afraid. I wanted to ask and I know its personal but do you see food in stool? She says she sees like everything she eats. Im so worried about her. Id like to get her a 2nd opinion but its so difficult with her low income state health ins.

And does your daughter still take it every 8 weeks?

 

[BigL]

Well tomorrow morning is the day. I want to thank you BigL, crohnsinct and my little penguin, your responses really helped me not to feel so alone and afraid. I am grateful for that. Hugs

How did it go for you? Thank you, also, for responding. My daughter was doing ok but last time she was 2 weeks late for Entyvio infusion and shes having a bad flare up. So idk if thats the reason or stress from school and everything else. Doc said if you cant do it a certain time, do it a week early, dont wait.

 

[crohnsinct]

@BigL My daughter was never at every 8 weeks for Entyvio. Her metabolism burs though meds super fast. We earned that with Remicade. So when she started Entyvio we started at 300mg every 4 weeks. She was on that dose for about 7 months and it never really worked. At that point we increased her dose to 600mg every 4 weeks and we are just now (5 months later) seeing some positive results. There is a lot more room for changing your daughter's frequency and possibly even dose although anything above 300 is more difficult to get approved through insurance .

If she was already at 8 weeks and she delays another 2 weeks and she wasn't in a good, deep remission that would absolutely explain the increase in symptoms. They don'y know as much about antibody formation with Entyvio as they do with the Anti tif's but with the anti tnf meds if you let the trough level fall to zero too often or if it stays there for too long the body will develop antibodies. If Entyvio works the same then you really want to make sure she adheres to her dosing schedule. Especially when you are at the every 8 week mark. That is the longest interval so any delay puts you really beyond how the drug was designed and proven to work.

I have a 20 year old college girl also so I totally understand the frustration with getting them to prioritize their health. Even with a summer spent in the hospital and threats of having to have a proctocolectomy my daughter still does not prioritize her healthehe way I would like her to. Unfortunately, all we can do as parents is guide them, let them make their mistakes and provide a soft landing for when they fall. If you have a good relationship with your daughter's GI (which I don't think you do yet) you could whisper in their ear and they will present the necessary information or ask the right questions. Our old GI had no issues with being the "bad guy". Our new GI will listen to me and sometimes be the bad guy but will sometimes let her get away with things. The way I see it, he is the medical professional so if he decides certain things can slide then I am good with it.

IDK how useful a trough level test will be at the 10 week mark. It is almost certainly going to be zero but it doesn't tell you much of whether it would have been zero at the 8 week mark or 7 or even 6. Of course if it is high that does help a bit.

Yes, when my daughter is in a bad flare and having lots of diarrhea she does see bits of undigested food.

Is your daughter maintaining her weight?

 

[stephie82]

Thanks for asking, today went surprisingly well. Just have a little headache and hope nothing more shows up. Found out,they gave me a one size fits all dose, the nurse said the dose isn't weight related. Everybody gets the same. I do have one concern still, and that is the deductible. in relation to the drug treatment.? Our Provincial plan covers the cost of the drug once the deductible is met, but we have insurance as well, so don't know what will happen and if we will be responsible for paying for the deductible which is quite a bit.?

 

[crohnsinct]

@stephie82 Are you in Canada? IDK how it works in Canada but her Takeda (the makers of Entyvio) have an assistance program. It does not depend on income. They will help you pay your cost after the claim has been processed by insurance. Your total out of pocket is $5. But IDK if it is offered in your country. I would definitely go online and see. Here is a link that might be helpful. Even if it is just the US link perhaps they can point you in the right direction. https://www.entyviohcp.com/access-s...ND6LEd3mGkHqlr-QZeVQ0Pv7eFxTzeDBoCHcIQAvD_BwE

 

[crohnsinct]

Did some digging for you. Try this:

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www.takeda.com

 

[stephie82]

Thank you so much. I did contact them and they still haven't gotten back to me with an answer, in fact they are so slow with other questions I've had as welL? Ok thank you for the above explanation if that be the case I am relieved cause I thought we would have to pay the Provincial deductible first which is a lot. I got a letter in the mail from Pharmacare saying the Province will cover the Entyvio once the deductible is met. M insurance is involved as welL, so hopefully they will work it out between them. This may seem like a lame question but if they aren't explaining it, how am I to know?

 

[stephie82]

I was given a booklet which has the 1-800 numbers but I have premature hearing loss, so I've been communicating with them by email but there seems to be more than one person asking the questions they want to know about me, but are slow when I am asking questions about them?

 

[crohnsinct]

Our IBD clinic and specialty pharmacy had all the paperwork and information I needed and helped with the processing.

 

[stephie82]

Sure sounds like they are more together than the ones here? It was only mi first treatment and it seemed like everything was happening so fast, so maybe it will come together when everyone is on the same page with this (including me) I'm finding different people contacting me, so maybe that is some of the problem, too many cooks in the kitchen LoL Thanks again.

 

[stephie82]

I had my 3rd infusion on April 21st. So far, no improvement. It was pretty neutral for the first 2 infusions but with the 3rd one I've been feeling pretty rough with my bowel symptoms feeling worse. One problem that seems pronounced since beginning Entyvio is constant nasal draining. I get up and I start dripping. Most often it goes on all day. Sometimes the only thing that does help is lying down with my head back, then it drains down my throat. Allergy tablets do help but really, I don't want to be dependant on allergy pills for the rest of my life. So far I am a little disappointed and worried whether it will work and if this nasal condition is worth it, if it is caused by Entyvio?

 

[crohnsinct]

It may not be caused by Entyvio....tis the season.

I forget the loading dose schedule but assuming you waited longer between the 2nd and third than you did from 1st to second. This might explain why you were feeling rougher this interval.

What is your maintenance interval? You might need to shorten it.

Entyvio takes a really long time to kick in. Our doc quoted 12-26 weeks. Hang I there and keep your GI informed. They can pull a levels test to see if maybe you are just burning through the drug too quickly.

 

[stephie82]

Thanks, I have an appt with my GI in a couple of weeks or so. Now, I go for my next infusion in 2 months time from my last infusion, or somewhere around mid June. When I think of it, it isn't even 2 months yet since my first infusion I believe was in March 11th? Being isolated makes everything seem so long ago? Does the blah feeling and side effects ease up any?. I've been getting a low grade fever the second day after the infusion, and I've been very tired as well.

I'm not so sure about being the season in my case, I hope you are right though, and hopefully it will pass, it started when there was still snow on the ground so we really had no environmental pollen's or mold's that were active at the time?