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Entyvio infusion in 2 weeks and COVID-19

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Ulcerative Colitis
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Makemesmile
New Member
Joined : Mar 2020
Posts : 6
Posted 3/18/2020 6:11 PM (GMT -8)
I have an entyvio infusion in 2 weeks and I'm really worried.  I called the infusion center and confirmed that it's still on schedule. I'm surprised because I thought I'm considered immunocompromised and should continue to stay away from people. I haven't left my apartment in 10 days. The nurse I talked to on the phone said yes it's definitely still on schedule because its important that I stay on schedule with the entyvio treatment. 

I'm scared that I'm gonna get infected with covid19 being around people and the medical staff there.  But I know it's important that I get the infusion. I don't wanna flare. I've been in remission for 5 months. But, covid-19.

Needless to say my anxiety level has been through the roof thinking about my upcoming appointment and possibly exposing myself to covid-19.  Am I overreacting? What would you do?
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C_G_K
Veteran Member
Joined : Dec 2006
Posts : 1421
Posted 3/18/2020 7:29 PM (GMT -8)
I would just go get the infusion and not worry too much. Just take reasonable precautions. Entyvio is gut specific, so I wouldn't say you are immunocompromised unless you have some other issue(s) going on besides U.C.
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countess18
Regular Member
Joined : May 2016
Posts : 460
Posted 3/18/2020 7:56 PM (GMT -8)
I have Remicade infusion at the hospital on Monday and I am going . It’s scary but we have no choice . Entyvio is safer than Remicade
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Makemesmile
New Member
Joined : Mar 2020
Posts : 6
Posted 3/18/2020 7:58 PM (GMT -8)

C_G_K said...
I would just go get the infusion and not worry too much. Just take reasonable precautions. Entyvio is gut specific, so I wouldn't say you are immunocompromised unless you have some other issue(s) going on besides U.C.

Ok I feel better with you mentioning that because entyvio is gut specific I'm not really considered immunocompromised. I failed to mention though that for the past 2 months I've had a cough. Not a dry cough but a little phlegm sometimes. No other symptoms, no fever or shortness of breath, just annoying lingering cough. I mentioned it to my GI doc at my appt last month and asked him if I should get tested for coronavirus or maybe it's just a cold etc. He said not to worry and to let my PCP know.

So I called my PCP and told the receptionist about my cough and should I get tested for covid19 and that my GI recommended that I ask my PCP etc. She said she would tell my doctor and call me back. No call back yet. I guess my cough has added to the mounting anxiety and thoughts of what if I already have covid-19 and what if I infect others at the infusion center etc. Gonna call back the PCP office tomorrow to see if my PCP wants to see me.

At any rate, thanks for responding. I'm a worry worth anyway and just needed to vent about my worries. Lol. I do feel better with your response. I will post again with updates. Thanks so much C_G_K!
🙂
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Makemesmile
New Member
Joined : Mar 2020
Posts : 6
Posted 3/18/2020 8:02 PM (GMT -8)

countess18 said...
I have Remicade infusion at the hospital on Monday and I am going . It’s scary but we have no choice . Entyvio is safer than Remicade

I'm glad I'm not alone in feeling scared. Good luck with your infusion on Monday countess18.
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greenuc
Regular Member
Joined : Sep 2011
Posts : 287
Posted 3/19/2020 3:14 AM (GMT -8)
I have Entyvio infusion today, not worried at all.
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2458
Posted 3/19/2020 3:58 AM (GMT -8)
If the cough isn't getting any worse I wouldn't be concerned. Coughs can come from all kinds of things ... some meds/supplements can cause coughs, dust, allergies, as well as lingering mild colds.

I started with a cough a week ago and have been somewhat concerned about it, but no fever or any other symptoms and it has not gotten worse so I am starting to relax about it. I can take some cough medicine and that calms the cough when I need it.

My next remicade infusion is April 18. I'll start worrying about it when I get closer, I'm sure. I am stressing enough about all of this and don't need to add that to the list right now.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7543
Posted 3/19/2020 7:33 AM (GMT -8)
My doctor said starting Entyvio right now "should be safe but we have no data." I called the small infusion center I would be going to and she said she's trying to limit it to one patient at a time and she's wearing a mask for precautions and wiping down doorknobs, etc. after every single patient leaves. You probably don't have as small of an infusion center though.
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1591
Posted 3/19/2020 2:23 PM (GMT -8)
I have my entyvio infusion on Tuesday and plan on going. I’ve seen them be sure to wipe the chairs in between patients just during regular times so I’m sure they’ll be taking extra special care now since they do deal with a lot of immune suppressed patients.

Take hand sanitizer if you have it and ask them to wipe everything again before you sit down.

The good news with entyvio is the infusion is only 30 minutes do you won’t be there very long. Wash your hands before you leave and don’t touch your skin or face until after you get home and you wash them again!

Maybe they’ll even have a mask for you if you ask? Or gloves?
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Spring
Veteran Member
Joined : Jan 2017
Posts : 536
Posted 3/22/2020 9:03 AM (GMT -8)
MakemeSmile, I have had a dry and then sometimes wet cough for months. I have a hiatal hernia, and take a ppi. My GI wants me on it twice a day, but I choose to take it once a day as I already have osteoporosis from steroids and the ppi twice a day increases risk of osteoporosis. I trade off some errosion in my esophagus, most likely. I also feel run down because I was trying to go down on my steroids. I don't feel anxious about being on Entyvio, but I hear you on just generally wondering if our bodies can handle anything extra.
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naturalcurl
Regular Member
Joined : Nov 2010
Posts : 261
Posted 3/22/2020 6:55 PM (GMT -8)
I felt safe at the infusion center for my 4th Entyvio dose. The facility was calm and uncrowded. The staff was constantly cleaning with disinfectant wipes. I am from the Land of Shelter-in-Place so I feel more secure at home but this was better than, say, a grocery store. I wore exam gloves that I discarded before getting back in my car and an ill-fitting likely ineffective mask left over from a trip during an influenza epidemic years ago.
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C_G_K
Veteran Member
Joined : Dec 2006
Posts : 1421
Posted 3/23/2020 7:55 AM (GMT -8)
Glad it went well. I just wish I could get on Entyvio! I have to wait until my valley fever clears up. Who knows when that will be.
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1591
Posted 3/23/2020 11:53 AM (GMT -8)
They just called to change the time of my infusion appt. tomorrow. They’re spacing appts out so they can see fewer patients at one time. Plus I have to call from the parking lot before I go in to make sure they have an open chair for me.

There’s about 8 chairs there. The first year of my infusions there was usually only 1 or 2 patients at a time. The last year every chair has been filled.
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geezernow
Regular Member
Joined : Nov 2017
Posts : 309
Posted 3/23/2020 5:00 PM (GMT -8)
Make me.... I'm in the same 'boat' as you. Next Entyviois scheduled for April 3rd. Hopefully, they'll have it set up so I don't have to make a tour of the dang hospital to get to the infusion suite. Rest assured, I'll be wearing long sleeves, long pants, carrying hand sanitizer, and have bleach wipes in my car for when I get out of the hospital. I, like many people, am really dreading having to even go TO the hospital at all...especially now that I'm feeling so good. But, I'm going if they will let me. Entyvio seems to be helping me quite a bit finally. Best of luck to you...just wash your hand really good and don't touch your face at all. I'm gonna try to hold my breath for my half hour....plus the other half hour it takes the pharmacy to mix the stuff. ROFL Stay safe all; we'll make it through this plague 'cause we are surviving with UC!!!
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countess18
Regular Member
Joined : May 2016
Posts : 460
Posted 3/23/2020 5:25 PM (GMT -8)
I had my Remicade infusion today at the hospital . We were stopped before I went in and told only patients allowed in/no visitors . Then in the lobby I was stopped again and they took my temp and made me use purell. I wore a mask and went up to the infusion unit and they put me in a private room. I felt safe and it was nice having no traffic in the city . Philly is shut down basically. Now I’m back in quarantine . They are talking about sending people back to work soon which is scary for us. I don’t work but am concerned about others spreading this.
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1591
Posted 3/23/2020 5:36 PM (GMT -8)
I should have mentioned my infusion site is separate from the hospital so that does make me feel better. It’s owned and operated by the hospital but off site about a block away. They call it the chronic disease center and they do a lot with diabetics there and then there’s the infusion room which is separate from the other offices (except for check in desk)
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texasmax
Regular Member
Joined : Oct 2010
Posts : 150
Posted 3/27/2020 6:30 AM (GMT -8)
Going in for Remicade next week. April Fool's Day! Just got off tele-visit with my doc (infusion center called yesterday to say my insurance changed this year and now needs a visit every 6 months instead of every year). I asked the question about Remicade, got the same answer as above- "should be safe but there's not a lot of data."

I'm a germophobe to begin with, even before UC; was wiping down grocery carts long before it was cool smile So I'm worried about my infusion next week. 4 chairs in a smallish room but enough room that they should be bale to have the chairs 6ft apart. I'm telling myself this- I have an N95 I've been saving for a rainy day that I'll wear to protect against anything airborne, and I just won't touch anything neck or above. I would normally change clothes as soon as I got home- I might bring a change of clothes and a bunch of wipes and change in the bathroom out in the hall so nothing gets in the car (because who knows what's in those seats). And shower when I get home. The office is in a hospital professional building, connected to the main hospital.

Not stressing about it but building the plan so I don't!
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1591
Posted 3/27/2020 7:57 AM (GMT -8)
Sounds like a good plan! I had my infusion on Tuesday. I called them from the parking lot to let them know I was there and they said they were ready for me so I went in. They had moved all the chairs so they were much further apart and were scheduling so there were fewer patients at one time but there were 4 others there with me. Entyvio is only 30 minutes so I wasn’t there long. The nurses (this is a stand alone hospital owned infusion center separate from hospital) were spraying down chairs between patients and using Purell on their hands every time they touched something. I did shower and change my clothes once I got home. All in all I felt good about it.
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2458
Posted 3/27/2020 2:58 PM (GMT -8)
The county I live in has more cases every day and I expect a huge increase next week, They had set up drive through testing last weekend that was supposed to give results in 5 days. That has now been delayed to 7-10 days!

I have my next remi infusion on 4/18 and am already stressing about it. It's in the hospital infusion room so I have to walk a pretty long way and go up 5 floors to get there. I am going to start calling on Monday to see if they have any alternatives to the hospital. If not, I am going to cover my car seat, have wipes to wipe it down and have a change of clothes in my garage so I can change before I even get in the house and then change again after I shower. I have some of those paper surgical masks I can wear and I ALWAYS have hand sanitizer. Since you can't buy it anymore I got lucky and found some rubbing alcohol and aloe vera gel on Amazon so I can make my own if I need to.

I cancelled all my other dr appts but I need remi so I just gotta get through it and hope for the best!

Hope everyone stays safe!!!
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jujub
Elite Member
Joined : Mar 2003
Posts : 10424
Posted 3/27/2020 6:47 PM (GMT -8)
I just received a letter from my infusion center today, outlining the extra measures they are taking to prevent infections. I'm a little worried, but I do know they'll protect me in every way possible. I'm also worried for their staff, because I know their chance of being infected by a patient is greater than the chance that they will transmit the virus to a patient.
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16404
Posted 3/28/2020 4:04 AM (GMT -8)
I have a remicade infusion on April 15th and a little worried for sure. It's on the 4th floor, and like walking through a rat-maze to get there (lots of hallways, elevators, etc.).
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1591
Posted 3/28/2020 7:06 AM (GMT -8)
I would be worried for sure about walking down hospital corridors! Our local hospital is not allowing any visitors at all so hopefully your is too and that must help a lot in keeping random germs from entering.

Hopefully you have some hand sanitizer to take with you to use each time after touching anything. I know you’ll be fine once you get in there because the nurses themselves really are being proactive with sterilizing. And the infusion nurses have different clientele that are most likely all being extra careful themselves since they have health conditions.

Just be as safe as you can. It’s probably still safer than grocery stores right now (she says, hopefully! 🤪)
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Jared101
New Member
Joined : Aug 2013
Posts : 5
Posted 4/3/2020 11:33 AM (GMT -8)
I am on remicade 10mg every 4 weeks. Max dose. I had my infusion in Boston on Wednesday. was terrified. It went fine, but of course, I had to use the bathroom twice and that completely freaked me out. I was spraying bleach solution everywhere. I did wear a cloth facemask and changed in the parking lot before I got in my car. Definitely, change your shoes. I have been challenging my doctor about continuing and he is adamant about it. I chatted with the infusion nurses(such great people) and she said there isn't any data. China won't share and Italy is a mess. My question is how do these biologics compare with chemo in terms of suppressing the immune system? How risky is it to continue? Anyone heard anything? At what point does the COVID 19 risk outway the reward of remicade?
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2458
Posted 4/3/2020 1:27 PM (GMT -8)
Hi Jared ... here's a link that doesn't have a lot of data, but makes me feel a bit better

https://covidibd.org/current-data/

So far they are showing 129 people on anti TNFs got Covd 19, 102 (79%) of them did not need hospitalized and 4 died. I don't think we are doomed, but I sure an being careful. I even wipe down the mail before I bring it in the house AND leave it sit for a couple days before I open it.

Stay on your meds. The risk of a flare right now is far worse. Prednisone seems to be the biggest risk factor for us
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2458
Posted 4/3/2020 1:34 PM (GMT -8)
I got approval from my insurance today so that I can have my next infusion 1 day early at the stand alone infusion center instead of the hospital. They are both affiliated with each other so I didn't have to get a whole pre authorization. The only reason I go to the hospital for them is because they have evening and Sat hours and the stand alone center is only weekdays.

Now I have to wait for the doc to change the order for the infusion center and I can get my appt rescheduled. Should have that taken care of Monday.

I'll still be careful, but I won't be as terrified as going to the hospital. Cases are climbing in this area daily.
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