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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16483
Posted 12/23/2017 12:24 PM (GMT 0)
Everyone hates pred. However, my recommendation is don't begin a taper until you've gotten a noticable response from entyvio.
Spring
Veteran Member
Joined : Jan 2017
Posts : 547
Posted 12/23/2017 2:17 PM (GMT 0)
Ipoop, is that because I don't know how long it will be before I start it, or that it is slow acting, or both? Is Entyvio slower acting than Humira?
iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16483
Posted 12/23/2017 5:41 PM (GMT 0)
Both. Entyvio takes longer than humira to work. Also, you want to 1st make sure entyvio is working before reducing the only thing that's helping in a big way: pred.
Spring
Veteran Member
Joined : Jan 2017
Posts : 547
Posted 12/23/2017 10:39 PM (GMT 0)
Ok, thank you
FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1877
Posted 12/24/2017 4:53 AM (GMT 0)
From my Entyvio experience, I was able to stop my prednisone by the time I was done with my loading doses, and saw significant improvement in my symptoms. I continued with Uceris rectal foam and Canasa suppositories for the next couple months.
Spring
Veteran Member
Joined : Jan 2017
Posts : 547
Posted 12/24/2017 5:42 PM (GMT 0)
I really hope that is the case. Feeling kind of depressed about
being stuck on Prednisone.
notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17890
Posted 12/24/2017 8:48 PM (GMT 0)
I am happy you've seen some improvement and I hope you continue to feel better. It stinks that you're stuck waiting again, but perhaps entyvio will be a great option for you.
Spring
Veteran Member
Joined : Jan 2017
Posts : 547
Posted 12/28/2017 12:14 AM (GMT 0)
I finally talked to the coordinator at the GI's office this morning. I first left a message last Thursday, but she was on vacation until today. There is no way we can get the Entyvio started this week. I told her that I had been hoping to get it done this week so that there wasn't such a long waiting period once my new insurance starts the first. She said that my new insurance will be slow to approve it if we go through the in office pharmacy benefit route that they do usually. She said she will try to get in contact with my GI who is also on vacation to have me go to the hospital for my loading doses. I don't think in the long run it will make any difference financially for me unless the insurance were not to to cover it and stick me with the bill. I will meet my out of pocket hands down rather quickly. On the other hand, I sometimes question whether I am taking things too seriously. I am currently having one to two bm's a day on the 40 mg. I started physically feeling better Christmas day and have been increasing in strength. I have started to gain weight back too. I did try going down 5 mg to 35 for two days, and started having more pain right away, so I know where I am at is due to the prednisone. My question is, should I just wait to do the Entyvio through the office? My second dose of Humira was supposed to be December 30th. The prednisone side effects have leveled back off a little from where they were last week. She thought we might be able to do the first infusion January 4 or 5 at the hospital or the first part of the next week. I guess I am just doubting myself wondering if they would set things up differently if they knew I was doing better now. Thanks.
countess18
Regular Member
Joined : May 2016
Posts : 469
Posted 12/28/2017 2:50 AM (GMT 0)
Spring
Being stuck at 40mg of prednisone is not "doing better" as far as I am concerned. If it doesn't make a difference financially, I would go with the fastest way to start Entyvio. It takes awhile to work and you will be stuck on prednisone even longer. How long is it going to take to get the pharmacy benefit approved? I just weaned off of prednisone finally and now feel nauseous with reflux. I hope that is a temporary issue, but I swear I never want to go on prednisone again. I would do anything to shorten the time on steroids. Take it for what its worth as it is just my opinion. I am so sorry you were allergic to Humira and hope that Entyvio works well for you.
T
Spring
Veteran Member
Joined : Jan 2017
Posts : 547
Posted 12/28/2017 1:40 PM (GMT 0)
Thanks Countess. I find it hard to keep perspective sometimes. When I go from not being able to to walk through a store to being able too, it sure is exciting, and I try to stay positive. On the other hand, with chronic illness there is an awful lot of normal not being normal.
Spring
Veteran Member
Joined : Jan 2017
Posts : 547
Posted 1/14/2018 2:55 AM (GMT 0)
Just thought I would update. I made it down to 20 mg. I am going 3 to 4 x at that level, and don't seem to be getting worse, which is always a fear when I drop and initially get worse. It settled down from 5 to 6. I had my first infusion yesterday. I was really nervous, but I just had a very small non raised rash around the port and across my wrist. It came on about
10 to 15 minutes before my infusion was done. My nurse said she had never seen anyone have a reaction to Entyvio before. They kept me a few extra minutes. Thankfully it was gone in about
an hour, and all has been well since then.
iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16483
Posted 1/14/2018 2:03 PM (GMT 0)
Glad you're doing well. Try premedicating with an antihistamine (claritin/benadryl) and tylenol before your next infusion. Works for remicade to reduce infusion site reactions, makes sense it would with entyvio as well.
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