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Starting Entyvio

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Ulcerative Colitis
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Posted 4/25/2019 6:42 AM (GMT -8)
MK11 do you not take premeds? They give me Acetaminophen and Benadryl every time before my dose. I should probably know why but I guess I assumed the Benedaryl was to prevent an allergic reaction but I’m not sure about the acetaminophen. I have no issues with fatigue after my doses so maybe it helps?
Posted 4/25/2019 7:35 AM (GMT -8)
They're both assumed to reduce the odds of infusion reactions. It all started with remciade/infliximab, and similar process is followed with many of the biologics.

www.ncbi.nlm.nih.gov said...
Infusion reactions associated with infliximab range from mild reactions, including fever and chills, dyspnea, pruritus or urticaria (occurring in approximately 10%), to severe reactions including anaphylaxis, convulsions and hypotension (less than 1%).8 Monoclonal antibody therapy can be complicated by the development of antibodies to the medication. Acute infusion reactions – but not delayed hypersensitivity reactions – are more likely to occur in the presence of antibodies to infliximab (ATIs).9,10 Of note, infusion reaction risks increase with the development of ATIs, associated with lower drug trough levels.11,12 Early studies suggested systemic steroid premedication could reduce ATI levels but not eliminate ATI formation and therefore did not prevent infusion reactions.13,14 Evidence also supports a non-immunologic basis for infusion reactions,5,7,15 and experiential data show that the likelihood of acute infusion reactions does increase following a drug hiatus.16

Given this background on reaction risk associated with infliximab, premedications are frequently and routinely used in clinical practice with a heterogeneous list of medication options, including anti-pyretics (acetaminophen), antihistamines (diphenhydramine, cetirizine) and corticosteroids (prednisone, hydrocortisone, and methylprednisone).

Posted 1/28/2020 5:42 PM (GMT -8)
I've so neglected this thread! However, that's a good thing overall as have had little to report on my end, until now smile

I've continued with 325mg of tylenol before my infusion and a 250ml bag of hydration after, which really helps with my fatigue the day of and day after.

While I've felt I'm in total UC remission, my CRP levels have been elevated since August which coincided with a bad back pain flare up and a nasty virus. However, it's been hovering steady since then. I've also been dealing with bleeding gums, mouth sores, more often colds and got the flu in December, a UTI (which I do not get, ever), elevated heart rate, and just a general sense that something is off in my body.

I was dreading my scope today as I was sure something would appear. But I'm totally clear! Of course, the biopsies may show something on the mucosal level but she seemed confident I'm in total remission.

We also ordered a Prometheus Entyvio test to see how effective the medication is at 8 week intervals, but I'm feeling like it's still working well at that interval, and don't expect a surprise there given the scope results.

So while I'm relieved UC is likely not causing the CRP levels and my general sense of inflammation/auto immune response, now I need to do some more exploring on causes there.

My GI did note that some patients have a slightly elevated CRP (we're talking around 1.5 which is where I'm hovering) with no clinical signs of anything. But as someone who wants to get pregnant, I will not start trying until that level is completely normal and I feel confident there isn't some other underlying issue.

I'll be seeking out a periodontist, cardiologist, and maybe a rheumatologist per my GI's rec (though I have no joint issue but wondering if my lower back pain is somehow related) just to get some non-GI eyes on these weird issues.

So that's my update! Will also follow up with results of Prometheus test to give folks a sense of where that is at after 5 years of Entyvio.
Posted 1/29/2020 9:02 AM (GMT -8)
Thanks for the update! I’m going on 3 years now on entyvio and in remission. I recently stopped taking my daily mesalamine too. I was nervous about that but have to admit cost was a factor plus I was curious if it was part of the cause of my migraines— turns out it’s not but I’m glad of a break from it anyway although it will definitely be added back if I start to experience symptoms. I just had my Prometheus test on Monday so we can compare scores!
Posted 1/31/2020 12:11 PM (GMT -8)
Great news, FlowersGal!

I don't have the actual numbers yet, but my GI informed me I have no antibody levels and my Entyvio levels are definitely in the therapeutic range. So great news all around this week!

Now time to figure out this elevated CRP issue....
Posted 3/9/2020 10:57 AM (GMT -8)
My GI suggested I should try one of these next, as mesalamines are no longer working: Entyvio, Stelera, or Xeljanz.

Are you guys still getting good results on Entyvio?
Posted 3/9/2020 11:18 AM (GMT -8)
Eph -- I've been researching all three of the meds you mentioned because I'm in the same boat. I'm going with Entyvio. It is the safest of the three, the only one without any FDA black box warnings, and its efficacy is very good. It just can take a little longer to work than some of the others. I wonder why your GI isn't starting you off with Remicade? Or have you already tried that?
Posted 3/9/2020 12:01 PM (GMT -8)

Sara14 said...
Eph -- I've been researching all three of the meds you mentioned because I'm in the same boat. I'm going with Entyvio. It is the safest of the three, the only one without any FDA black box warnings, and its efficacy is very good. It just can take a little longer to work than some of the others. I wonder why your GI isn't starting you off with Remicade? Or have you already tried that?

He doesn't like Remicade, probably due to side effects.
Posted 3/9/2020 12:15 PM (GMT -8)
I see, interesting. I don't know why Entyvio is not used more as a first-line medication after all the reading I've been doing about it. I guess the one drawback is it can take longer to work.
Posted 3/9/2020 3:16 PM (GMT -8)
I am still very happily in remission after 3 years of entyvio. No side effects. It wasn’t that slow acting for me. 4-5 months in and I was off steroids and no physical symptoms. Just be prepared to use rectals as needed until you’re fully in remission.
Posted 3/9/2020 4:12 PM (GMT -8)
I just read through this entire thread. I'm feeling super hopeful about starting Entyvio now!
Posted 3/9/2020 4:58 PM (GMT -8)
Entyvio seems like it's better for maintaining remission versus jump-starting remission. Remicade, with, or without prednisone, can get some people into remission with just one single dose. Of course, it's different for everyone, and many people require multiple doses to get to 100%... Entyvio wouldn't work as a rescue med - it almost always requires too much time. I didn't respond to either of them. Nothing works for everyone, unfortunately. I went into Entyvio in a pretty good remission too. I was following a hospital stay where my UC had been solid with prednisone. It hadn't reared its ugly head in quite some time... I started Entyvio at 100% but no luck... I wish it had worked for me, but in the end, surgery was a better option for me. I'd hate to be tied to insurance, drugs and doctors at this point, and the costs associated with those things.
Posted 9/10/2021 6:39 AM (GMT -8)
It's been so long since I posted an update!

I am happy to report that still going very strong on Entyvio for 6 (!) years. In fact I've been tapering off my Colazal with no issues and it's such a relief to cut down on number of pills.

In March, I discovered I had mild hypothyroidism though not antibodies to suggest it's autoimmune (but it does run in my family). I started levothyroxine with intention of getting my TSH levels to optimal for pregnancy levels. It's been a bit of a rollercoaster to optimize--I'm currently now in the hyper- range, but adjusted and hopefully this dose will get me to right place.

Additionally, I haven't had a period since going off birth control and am currently in process of being diagnosed with what's likely PCO. I'm currently doing a hormone (Provera) challenge to induce bleeding and pinpoint if I have an ovulation or estrogen issue. I was really hoping for an easier process, but I'm still hopeful I can try to conceive while I'm in such strong remission.

Hope others are finding success whether on Entyvio or other drugs!
Posted 9/10/2021 6:59 AM (GMT -8)
6 years!!! That’s so nice to hear! I’m currently 4 years on entyvio and no issues. I stopped my Apriso a year or so ago.
Posted 2/8/2023 6:46 AM (GMT -8)
Wanted to pop in for an update as I get my infusion! Going on 7 years with infusions every 8 weeks in complete remission. While they are now offering quick 30 min infusions I’m sticking with my usual pre hydration and post hydration and at a bit slower pace. Not interested in trying the pens either, not going to rock the boat.

Next chapter will hopefully be pregnancy on Entyvio and will try to share some experience there too if and when it happens.

Hope you are still doing well too, FlowersGal!
Posted 2/8/2023 4:35 PM (GMT -8)
Thanks! I am still doing well. 6 years next month! I too hope to be able to stay on infusions, mainly for financial reasons. I don’t mind them at all—they’re so quick and easy.
Posted 5/23/2023 9:33 AM (GMT -8)
I apologize for not providing any update. Clinical Remission for a long while thankfully. This drug has been my silver bullet. I wish everyone on this drug, and starting it, well!
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