Posted , 3 users are following.
My mum has been on Infliximab for nearly 2 years, sadly it has failed. She is now due to start Entyvio next week. As this is still so new we’re slightly worried. Has anybody got any experience of this?
Thank you in advance
Kimberley
0 likes, 6 replies
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IndieHannah kimberley_22143
Posted
Hi Kimberly
I'm not surprised your mums worried as it is a fairly new treatment. I started it 15 weeks ago after the Humira failed. I have been very concerned that I haven't been given an alert card and that the med check is very brief........although, with Humira you don't get any of that, you have to do it yourself!
On a positive note, your mum will be used to the blood checks, health check and infusion. The Vedolizumab only takes 30 minutes compared to the 2 hours Infliximab.
There is one particular possible side effect that is very scary which no one seems to make much of but it terrifies me!! But the drug is Crohn's and UC specific unlike Humira or Infliximab.
I'm just waiting for test results but it's looking like it's got me back into remission. Yay 😊
Haven't had any nasty side effects from it so far and some of the Humira pains have gone.
Good luck to your mum.....I really hope it helps her like it has me.
Hannah
kimberley_22143 IndieHannah
Posted
The big thing that scares us is the brain disease possibility. An incurable problem at that!
She’s had crohns for about 7 years now so us completely used to it.
Glad your in remission
IndieHannah kimberley_22143
Posted
Incurable and fatal.....tell me about it!!!!
It is terrifying and the only thing that really concerns me about the drug. However, all the research I've looked into revealed that this has not happened to anyone as yet. Some comfort I suppose.
My only advice, if your mum goes for it, get checked just before the 14 week infusion. It is strongly recommended that you stop the treatment at 14 weeks if there is no improvement.
I requested a Calprotectin test to check inflammation (as CRP is totally unreliable in me).
About 3 weeks ago I also started a LOFFLEX diet through the dietitian. It is specific to Crohn's and has been really beneficial, it really has calmed symptoms and is helping to find trigger foods.
I've had aggressive Crohn's for 28 years.......at this point I'll try anything, LOL
Hannah
craig84609 kimberley_22143
Posted
You are in luck
I am on my fourth infusion of it. So far it is taking a while to work, but it is working. I noticed that the bleeding has stopped in me. However, my flare is classified as severe. So depending on how bad your mother is and if she is on any other medications for it, she may see improvement quicker than me. So many factors can change the speed at which the drug works. I can tell you it is one of the safer choices as it is only supposed to reduce the immune system in the digestive organs. Other medications will reduce ones immune response through out their body making them vulnerable to infection. If it was my mother I would like her to be on it over the other medications. So, side effects that I had and remember everyone is different when it comes to this. I had unusual side effects that had not been reported before. The day after infusion #1 I felt like I was getting the flu. I was hurting all over and I felt like I was going to get sick for two to three days. After that it got better. The effects for me lessened after each infusion, so now I get a little sick feeling for 1 day, but again everyone is different. Your mother may not have any side effects. If you have any other questions about this medicine, please feel free to ask me. I am always trying to help. I think she and her doctor chose a great medication, so don't worry. Good luck to you both and I hope she feels better soon
kimberley_22143 craig84609
Posted
She is terrified at the new infusion but I think she’ll do it. Sounds like she may feel pretty rough with it to start. As you say though everybody is different.
Fingers crossed for you all Xx
craig84609 kimberley_22143
Posted
The disease is tough to control sometimes. Every person has a different body chemistry and responds different to medications. I guess what I am getting at, is one person may respond well to Humera, while the next person isn't helped by it at all. It is a matter of finding what her body will respond to and once they find a medicine that works she will get better. I went through several medications that didn't help me and one put me in the hospital. So we have to just keep trying. There are new medications that are being tested in the USA and Canada. So there will be more options available in the near future I think. I know it is tough, but she will feel better and it could very well be Entyvio that does it for her. Also, before I went on Entyvio I asked a lot of questions about it and in my opinion it seemed like the safe choice. All these medicines can be scary, due to bad side effects. I think she is on a good medicine and time will tell if it will help. The side effects that I have with it are unusual, so there is a good chance she will have no issues with it. Take care.