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When did your doctor test levels on Entyvio?

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Ulcerative Colitis
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Posted 4/25/2018 8:01 PM (GMT 0)
I just had my first maintenance dose of Entyvio. My doctor wants to order the labs from Promethius labs to check my levels next time I go in. My insurance only covers Quest labratories, so I know I will be paying for this completely. My doctors assistant told me that I should be prepared for him to want to either order this test periodically, or to do a colonoscopy. When has your GI ordered these tests?
Posted 4/25/2018 8:23 PM (GMT 0)
Weird.

Your GI should give you a little box from the manufacturer (blood test kit) to give to your infusion clinic nurse when you go in for infusion #4.

Just before the infusion they'll take your blood and send it off. Then your infusion commences. I don't believe it's a test that they can just call into a diagnostic center like Quest. There's an actual kit that needs to be used for it.
Posted 4/25/2018 8:53 PM (GMT 0)
He did say they would draw the labs before the infusion and that they overnight them to the labs. I was just wondering if the timing is typical.
Posted 4/25/2018 8:58 PM (GMT 0)
That's how mine is scheduled! Just before infusion #4...
Posted 4/26/2018 3:32 AM (GMT 0)
Ok, thanks wasps. I hope you continue to get better!
Posted 4/26/2018 12:13 PM (GMT 0)
It looks like labcorp might have a generic version of the test, I would call them, and ask about out of pocket cost.

/www.labcorp.com/test-menu/38826/vedolizumab-and-anti-vedolizumab-antibody#

FYI. Prometheus asks your insurance something ridiculous, like $1,500.00 for the test, and after they do several automatic appeals Prometheus will charge you about $250.00 flat for the test. Second time, I got the test through Labcorp, even though my insurance said they'd only cover QuestDiagnostic tests they still picked up the cost of the Labcorp test as it was a more reasonable number than Prometheuse cost.
Posted 4/26/2018 5:58 PM (GMT 0)
I wondered about Labcorp as well. I know my insurance will haggle it down, so you make a good point about that number being lower in the end with Labcorp. My out of network deductible is 20k, so I will have to pay whatever they land on in the end. I talked to my GI nurse about Labcorp and she said that they won't use them because it doesn't measure the mucosal lining like Prometheus. I really would like to know if that is true, because I thought that sounded a little odd. Labcorp is actually the lab my GI's office uses, so it seems like they would know the difference.
Posted 4/26/2018 6:21 PM (GMT 0)
Yeah this is a part that I'm a little unsure of. I hit my deductible in 2017 and 2018 back to back, literally, from being in emergency care.
Posted 4/26/2018 7:10 PM (GMT 0)
I just spoke to Labcorp, and they send the test to Prometheus labs. Labcorp bills $480 in my state, with a no insurance price of $240. I have a call in to my insurance to find out what the allowed amount is for the Labcorp test. Whew, I am not arguing for a different test, just a cheaper route to send it through.
Posted 4/27/2018 1:51 PM (GMT 0)
A little off topic, but for some reason I owed LabCorp 21$, for some type of test that was ran on my blood and not fully covered. I was in the hospital for two months, so I didn't see the paper bill come through the mail.

When I finally did they sent me a super nasty letter that was phrased like an angry kid wrote it 'APPARENTLY YOU HAVE ISSUES PAYING YOUR BILLS' - LOL. Don't pay them off immediately. Try to receive that letter. It's hilarious.
Posted 4/27/2018 2:02 PM (GMT 0)
Nice. I am not surprised as the bills from them always come strongly worded and due immediately. Glad you could laugh about a not to funny situation.
Posted 4/27/2018 2:09 PM (GMT 0)
Humor is the only thing keeping me going with this dreadful disease.
Posted 4/27/2018 2:21 PM (GMT 0)
"Humor is the only thing keeping me going with this dreadful disease."
TRUTH!
Posted 4/27/2018 3:27 PM (GMT 0)
I wonder what the purpose of checking the levels is? Would your dose be adjusted based on the results? Otherwise, what is the point, and how does it benefit you? I never had the test. I am not sure i ever had a maintenance dose. I was not improving and I decided surgery was a better long-term solution for me.
Posted 4/27/2018 3:50 PM (GMT 0)
The test is so they can gauge how well the loading doses are "sticking" in your system. Depending on the results, they can potentially move the maintenance doses closer together or further apart.
Posted 4/27/2018 6:22 PM (GMT 0)
Been on Entyvio for a year and as far as I know, have never had a test. I figured that if I lose response, they would look into it then, but what's the point of doing it every month if you're responding?
Posted 4/27/2018 6:49 PM (GMT 0)
GI's need more than "I feel great" from their patients. If your Entyvio levels aren't where they should be (too low), you may be at risk for going into a flare or regaining symptoms. They check to adjust prior to putting you into risk.

It's also possible that you're responding very well and that your treatments don't need to be so close together. It's all dependent on the patient, but it should be monitored. I'm a patient/case study with one of the best hospitals in the world, and they wouldn't dare let me walk around with my levels being a mystery.

My GI told me that she's had patients tell her that they feel okay/great, but that their scopes showed significant ulcerations and inflammation. The more they know, the more they can help you and adjust your treatment to what your body needs. I can't see a decent GI team not interested in knowing about their patients infusion levels....
Posted 4/27/2018 6:51 PM (GMT 0)
I must add, it's not every month. It's prior to every maintenance infusion. So, essentially every 8 weeks, or whatever your GI has your adjustment set to, if any.
Posted 4/27/2018 6:52 PM (GMT 0)
The serum concentration tests are an aid in initial dosing (I'd expect one test after the initial loading doses), and an aid during loss of response (run once during a flare). Serial monitoring is a bit overkill, that is having the test done on a regular frequency.

Those tests aren't 100% necessary as UC symptoms are often pretty clear if a drug is/isn't working. Doctor can simply go on his/her gut feeling, and try an experimental dosage increase for one-infusion-only to see if there's noted change in UC symptoms as a result (continue at that increased dose/frequency if noticeable results, otherwise try something else).

The one criticism of tests is they're not good at what is you/my best concentration level? Over 3 is good on a remicade test, but my doctors have said that some of his patients respond best at 8, others respond best at 11. There's variation. Certainly, the test is helpful in spotting antibodies, and in spotting crazy low concentrations.
Posted 4/27/2018 7:25 PM (GMT 0)
I thought the same as FlowersGal, seems excessive to do it repeatedly... If you're responding, and you're doing well, I would think they could put this off, or at least do it less infrequently, especially if it's not covered by insurance. Hopefully you can do it, get the info you need, and not need to have it again for a while. Just keep up your basic blood work to check your overall well-being of course.
Posted 4/28/2018 2:27 AM (GMT 0)
My GI said he was concerned I might need the infusions closer together. At this point he thinks I should be having a lot less symptoms. The nurse is the one that said something about repeat tests-in lieu of a colonoscopy. I don't know how often he would actually ask to do it.
Posted 4/28/2018 7:18 PM (GMT 0)
I just had my first Entyvio Infusion yesterday. Neither my GI or the infusion nurse said anything about having a blood test kit after the induction doses. I’ll ask my infusion nurse when I go for my next infusion in 2 weeks and see what she says. I mean I assumed I’d have blood work eventually, but I didn’t think it be anything different than going to LabCorp or Quest.

Update: I had my second infusion today and the infusion nurse took blood. She said she would do labs every other infusion. CBC, Chem tests, and I assume Entyvio levels or whatever. It works for me because now I don’t have to worry about going to LabCorp or Quest. Even if my GI gives me an order, if it’s close to my infusion date, she said she can do it when I come in.

Post Edited (UChick) : 5/10/2018 3:04:53 PM (GMT-6)

Posted 5/24/2018 12:53 AM (GMT 0)
Never had levels check, even with a dosage increase.
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