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Posted 2/5/2022 9:18 AM (GMT 0)
I've recently been switched to Entyvio. 3 weeks in and have had 2 infusions. I'm still dealing with symptoms but these have worsened. Significant joint issues with no swelling, severe left sided pain and chronic upper GI bloating and distension. These are now the reult of Entyvio as I had milder forms of these symptoms over the last 2 months. But it seems as I have come off the pred these symptoms have worsened.

Should I keep going with the Entyvio or push my GI to maybe do some more scans and tests.

Thanks
Posted 2/5/2022 9:28 AM (GMT 0)

Simon1729 said...
I've recently been switched to Entyvio. 3 weeks in and have had 2 infusions. I'm still dealing with symptoms but these have worsened. Significant joint issues with no swelling, severe left sided pain and chronic upper GI bloating and distension. These are now the reult of Entyvio as I had milder forms of these symptoms over the last 2 months. But it seems as I have come off the pred these symptoms have worsened.

Should I keep going with the Entyvio or push my GI to maybe do some more scans and tests.

Thanks

I think with Entyvio it's probably best that you hang in there and give it a few months, because Entyvio can take longer to work than other meds. According to the internet it can take 6 weeks to 3 months, or longer.

It doesn't tend to be fast acting like Xeljanz can be (when it works).

I haven't taken Entyvio (yet) but hopefully the people who are on it or have tried it will be able to give you advice, based on their experience, on how long it generally takes to work.

Regarding the abdominal pain I'd say trust your instincts and if in doubt get checked out. I have in the past had abdominal pain when healing, that turned out to be 'faecal loading' in the ascending colon.

With the joint pain I'd personally probably 'wait and see' a few weeks longer as there's a lot going on with switching meds, unless of course it was unbearably painful.

Post Edited (UCyousee) : 2/5/2022 2:36:43 AM (GMT-7)

Posted 2/5/2022 1:13 PM (GMT 0)
Entyvio is much slower than other drugs. Can take up to 14 weeks to see results. Because it's so slow my doc had me on Pred for several weeks at the beginning. The first 3 doses are the loading doses. I was off pred right around the same time as my 3rd loading dose and I could tell it was working. I wasn't completely symptom free, but so much better than when I started. Are you using rectal meds too? If not, they can really help. Have your BMs frequency & form also gotten worse?

I know we all want these meds to work immediately, but most don't work all that fast. Is this your first biologic? While there are more medication options for us than there used to be, it's best to try to be patient and give the med a good chance at working. For me even Uceris takes about 3 weeks to do anything. Talk to your doc, maybe you need a longer bridge with pred or Uceris to give Entyvio the best chance to work.

If Entyvio does kick in for you, you will love it, but if it doesn't then start researching other options. You don't have to wait for Entyvio to get out of your system to start something else since it's not systemic. My motto in all things is always have a Plan B and hope you never need it.
Posted 2/5/2022 2:05 PM (GMT 0)
CC is right about Entyvio being slow to kick in, the symptoms you are describing can also be from coming off the prednisone too. You want to give the drug a fair chance to work, thinking you need to switch after 2 infusions is not realistic with Entyvio or any biologic. They all take time, everyone reacts differently to the drugs & much depends on the severity of the disease. No one likes not feeling well, but we have to be patient at the same time.

Take care.
Posted 2/5/2022 6:53 PM (GMT 0)
It takes forever to even see if Entyvio will work. You might need to be on steroids longer if you can't tolerate the symptoms you're experiencing. Maybe ask about Uceris/budesonide instead of pred as a bridge if you are having symptoms.
Posted 2/6/2022 12:08 AM (GMT 0)
Sounds like the prednisone from what I’ve read
Posted 2/6/2022 3:22 AM (GMT 0)
I haven't taken Entyvio. I am on Remicade so I can't really help you with that. The ladies in my UBD support group that are on Entyvio have all said it took months to see results. For One lady--it was 6 months-BUT she went into remission and has stayed in remission with no issues since 2015. She's only on Entyvio now and she does not have any of the "extra intestional" manifestations that she used to suffer from. (Itchy skin, heat intolerance, mouth ulcers)

I agree with Sara. And please remember steroids can make you even more impatient..

Clo
Posted 2/6/2022 9:20 PM (GMT 0)
I’m still hanging in there waiting after starting Entyvio last July. Initially I felt I had some response then about four weeks in I started to flare again. Dr put me on 9mg Budesonide capsules and hey presto that worked in two days and stopped symptoms for eight weeks. Dr shortened infusion time from eight weeks to four weeks in December but started flaring again one week after finishing Budesonide in late Dec. Three weeks of hell, didn’t leave the house, all the yucky symptoms, Now back on prednisone 50mg and tapering. It’s giving me some relief but still going 4-6 times in the early morning hours (no blood).
I’m seeing my specialist on Wednesday as we haven’t been face to face for a while. The reason I’m telling you the whole shebang is that even with all of this he is hopeful the Entyvio might actually be doing something, albeit very slowly. Last colonoscopy in November showed mild to moderate disease (was severe Pancolitis Jan 21) and my blood test results over the last two months have been normal. All inflammatory markers normal even with symptoms. He wants us to keep hanging in there until July and then we’ll make a decision if we need to change. It’s tough but I’m trying to stay hopeful. I’d give it a better chance if I were you.
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