#entyvio

[gooddoggirl]

How many drugs from drugs.com's top 100 drugs have you taken?

0

1-5

6-10

11-15

16-20

21-25

26-49

50-100

Voting ended onAug 23, 2025

[colitisconfessions]

Short but kinda long update;

After being in remission with Remicade until 2020, I’ve been on Stelara (we thought was working but then immediately wasn’t), then switched to Humira biosimilar called Amgevita which never worked, but last scope in January of 2022 didn’t show enough inflammation to warrant a medication change. Tuesday I had a flexi-sig that showed significant inflammation so we are now in the process of starting Entyvio. I am really hoping and praying that this is it - I miss what life was like on Remicade, until I broke through. I don’t even know what I’ll do if life is like that again. I’ve just been flaring or on prednisone for the last three years.

I know everyone is so different, but if anyone has any advice, tips, tricks etc regarding Entyvio I would appreciate it - but please be gentle with me I’m not really in a place to accept failure stories right now.

[thepoliticalpatient]

How to get your Humira level tested thru Prometheus

I started taking Humira for my Crohn's in July of last year. Getting onto this medication was a gigantic pain in my ass, but I actually think the part that ended up being the hardest was dealing with getting my levels tested, so I wanted to write a post detailing that process. There is lots of info here that I wish I had known at the start. I actually have been wanting to write this post since last September, which was when I actually had the test done, but the whole situation didn't get fully wrapped up until today, 6 months later, and I didn't want to write it until I had complete information.

I will try very hard to make this an informative post and not just a rant but I'm not sure I have the self-restraint tbh.

OK, to start: what even is this test? With biologics, you need to maintain a high enough concentration of the drug in your system, to prevent your body from producing antibodies against the medication, and for it to be effective. My (now former - more on that soon lol) gastroenterologist is pretty passionate about making sure his patients keep a good level and will have them go on a weekly dose instead of the normal every-other-week dose if their levels aren't to his liking.

Importantly, the timing of this test is vital. You can't get it measured in the days immediately after you inject or your levels will be super high. The goal is to find out what the level is when it's at its lowest, i.e. in the day or two before your injection. My (former) gastroenterologist wanted me to get this test done between my second and third doses. That didn't end up happening because of how much of a clusterfuck this whole thing was.

So this test is only done by one company in the United States, Prometheus Biosciences. The name of the test is Anser ADA. They also have similar tests for measuring the levels of other biologics, like Anser IFX which measures Remicade levels (ADA = adalimumab, which is the generic name for Humira; IFX = infliximab, or Remicade). They have tests for Stelara and Entyvio too. If I had to guess, I'd say that the info in this post is probably pertinent to those tests as well, but I cannot guarantee it. I only know for sure about my own experience with Anser ADA.

Because this test can only be performed by Prometheus, it is likely that you cannot just go to your hospital's lab and have them draw your blood. It's possible they will do this draw for you and mail the blood to Prometheus, but you'll want to be certain to clarify this with your doctor.

My doctor's office gave me a lot of extremely wrong information, so I had no idea about this. I actually showed up at my hospital's phlebotomy lab on the morning before my third Humira dose, handed them a form that my doctor's staff had given me that contained the order for the bloodwork, and they took my blood and I thought I was done with it. Then WEEKS later at my next appointment with my doctor, he was like "did you ever get that Prometheus test done?" and I was like "wait do you not have the results back from the blood I gave weeks ago?" and he was like "you absolute imbecile, we can't do that lab for you, you need to schedule that with Prometheus's phlebotomists" (I'm paraphrasing a little bit here). To this day I have no idea what happened to the blood I gave at the lab! I assume they were like "wait what do we do with this lol" and then threw it in the garbage and didn't bother to inform me????

This was just one of many bad experiences I’ve had with this doctor/hospital, but this was the one that finally pushed me over the edge. I have since changed to a new GI at a different hospital (which was its own fucking saga, omg, it should not be so hard to get your medical records transferred from one hospital to another).

ANYWAY, my point is, be very certain to talk with your doctor about whether your hospital can draw this blood for you. If they can't, you have to call Prometheus to set up a draw with them.

Prometheus is located in California but contracts with a network of phlebotomists throughout the country. You can set up an appointment for a phlebotomist to come to your home to draw your blood.

For some goddamn reason, instead of equipping their phlebotomists with the supplies they'll need, Prometheus will mail you a package ahead of your appointment that contains some supplies.

Here's my next pro-tip: Prometheus will use some very scary language to make it sound like you need to be waiting right at the door when this package arrives and to immediately put some of the contents of the package into the freezer or else something terrible will happen. This is not true. What's actually happening here is that the package will contain some shipping supplies, including an insulated container and an ice pack, which the phlebotomist will need in order to store your blood safely. They want you to pre-freeze that ice pack before the phlebotomist arrives so that it will be ready to go as soon as your blood is drawn. That's it. So there's nothing in the package that's gonna, like, go bad or something if you don't get it into the freezer right away.

The whole thing was kind of stressful because I didn't have any tracking info on the package or anything, but it did arrive ahead of my appointment.

Okay so the next big topic here is PAYMENT. This is a $2,500 test, and most insurance doesn't cover it.

Around the same time I scheduled the draw with Prometheus, I sent a message to my insurance carrier to ask whether they would cover the test. The rep who replied to my message needed to know the CPT code for the test and the NPI for Prometheus, which I found on Prometheus's prior authorization form here. The insurance rep then said that this test would require my doctor to complete a prior authorization. If I got the prior auth, then insurance would cover the test at the out-of-network rate, which would require me to pay 35% of the cost. Without the prior authorization, they would deny the claim entirely.

I sent a message to my doctor's office asking them to complete the prior authorization stat, as I had already scheduled the draw with Prometheus and there wasn't much time. I was hesitant to cancel my draw, because that would require me to wait at least another 2 weeks (since you have to time the draw with your Humira doses), and I was already months later on this test than my doctor had originally wanted because of the whole snafu with thinking I could get it drawn at my hospital. My doctor's assistant replied and said she didn't think they'd have time to complete the prior auth, but not to cancel my appointment. She assured me that Prometheus would not charge me more than $75 if my insurance denied the claim.

I was extremely nervous about this. I was mainly concerned because I had found this info about Prometheus's payment assist program, which says that they'll reduce the charge to $75 if your income is below a certain threshold, and mine is not. Based on the info on that page, it looked like I didn’t qualify for any cost reduction, so I was pretty convinced they were gonna charge me the full $2,500.

Looking at the claims on my insurer's website, I see that Prometheus indeed tried to charge my insurance $2,500 for the test, and my insurance denied it. There is an additional $50 claim to my insurance, which insurance did pay, which I think was for the cost of having the phlebotomist visit my home.

Prometheus sent me several mailers about their payment assist program, which I just ignored because my income is too high. And for the next 6 months I sat anxiously waiting to receive a bill in the mail for several thousand dollars.

Well I'm happy to report that today, I finally received the bill from Prometheus, and it is for $75. I don't know why exactly they reduced it to that amount, but I am certainly not going to complain.

Now, I'm not certain of this, but my GUESS would be that the $75 rate is only for people who are doing self-pay. So, hilariously, if I had gotten the prior authorization done on time, my out of network coinsurance would have required me to pay 35% of the total claim, which would be $875. So, I mean....I can't guarantee that your experience will be the same as mine, but it seems to me like it is to your advantage to not go through your insurance for this test.

Oh, and Prometheus will NOT hold your test results hostage while they try to get paid. They sent the results to my doctor soon after the draw. And my levels were good!

ANYWAY, this was long, but I wanted to share everything I wish I had known before going through this. I hope it will help someone else who is trying to navigate this process!!!

[the-chronic-potato]

If there’s one thing I STILL haven’t learned in the years I’ve been fighting my autoimmune disease, it’s when to ask for help. I always say “no, I’m fine,” blah blah blah, when I know it’s time to seek additional medical help. I hate admitting it and I always fear what will happen next.

I just sucked it up, however, and called my GI nurse as I am weak, feverish, in pain, can’t eat, etc. I really wanted to “wait it out,” but I know that this is a dangerous game I’m playing, and I must nip it in the bud as fast as I can, even if means having to go back to the Devil’s tic tacs (Prednisone) for awhile.

My biggest fear right now is my GI taking this and confirming I’m failing Entyvio, which is scary to me as E is one of the only options I have left, and I had felt the closest to normal on it than I have felt in YEARS (until now, at least). It was actually working fabulously...

Now I have a lot of fear and doubt. I have a swarm of emotions eating at me. I just want everything to be okay 😞

[kddgetshealthy]

So my GI appointment went...surprisingly well. I talked to the nurse who was helping Dr. Snyder, Tammy (who is amazing), not his regular one who told me to take Tylenol and that my scope was fine and told her all about that call. Apparently they have had a LOT of issues with her pulling this shit, and as I thought, she never even talked to Dr. Snyder. She told me to tell Dr. Snyder, but apparently she’d already told him. He comes in and is visibly aggravated and told me “You should ALWAYS have a pain medicine prescription, especially for situations like you’ve been in” and wrote me an RX no questions asked. It was the first thing he did. I have a feeling the nurse I talked to is in some deep shit because he was not happy with her at all. I told him about the blood clot. I have an upper scope scheduled for Thursday to see what’s going on with the duodenum and why it’s so inflamed and he scheduled a different scan for the gallbladder. We are also switching me back to entyvio but at three week intervals. I told him I was terrified of going back on the xeljanz, and he agreed that wasn’t even an option. I’m looking forward to the good scope sleep Thursday :) I went to drop off my RX and the lady at Publix was like “I don’t know if we’ll be able to fill this whole thing with the new opioid laws but we will fill as much as we can” 🙄 He prescribed 60, so a thirty day supply, I don’t take them every day, I legit will hold out until pain is unbearable l and hoard them. Anyway, mom picked the up on the way to our house, and they filled the whole thing 🤷🏼‍♀️ I don’t think she knew what she was talking about and just had an attitude because I’m young and getting an RX for pain meds, must be a junkie, clearly 🙄 Ugh, hopefully things are looking up though :)

[themisadventuresofaspoonie-blog]

Healthcare Bluebook

http://themisadventuresofaspoonie.com/2018/06/10/healthcare-bluebook/

In the United States, health care and cost of services can vary between both doctors and facilities. The most extreme example of this that I have personally witnessed is the cost for both Entyvio and the nurse to infuse it.  I have received Entyvio infusions from four different locations – two hospital outpatient infusion clinics, a doctor’s office, and at home.  The total costs have ranged from $2,500.00, on the low end, to $22,000.00 – for the same drug, with the same premeds, being infused over the same period of time.  The price difference between the two hospitals was even shocking – a delta of $18,500.00.  Thankfully, many biologics and other drugs offer co-pay assistance plans, which have helped a great deal.  

The good news is that you can compare prices for procedures or medications at different facilities to keep from being surprised.  In my role as the benefit administrator for the company I work for, I learned of Healthcare Bluebook during this year’s open enrollment period.  A rep from one of the carriers I work with brought it to my attention.  It allows you to search in your area by either typing in a specific service or by selecting a category such as hospital, physician, imaging, labs, medications, etc.  

Once you search or select a service, the site will give you the low, fair, and high price for the area – 90210, in my example.  Depending on what your searching for, Healthcare Bluebook also offers prices for facilities in the area.

This post is not endorsed by Healthcare Bluebook in any way, I just wanted to share this helpful resource with my fellow spoonies and warriors!  I hope this helps you navigate the health care system while saving some money in the process! 😊

[goldstarsfortulip]

Gah. Coz Wednesday night was hard I didn’t wear lip balm whilst trying to sleep, so now I can’t drink my tea as I’d like coz it feels like my lips have freezer burn. Thanks, Entyvio.

[feministdogmom]

Chronically ill grad students be like- even sepsis can't stop my productivity 😅🏥📚