Crohns and Colitis: 1 Year update on Entyvio / Vedolizumab (True Story)
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- Опубліковано 8 вер 2024
- wow I cannot believe it has been a whole year on entyvio/Vedolizumab.
in this video I will be updating you on the progress of this treatment and how I am getting on.
I have had many questions about this particular treatment so I thought I would include a little Q&A of the most frequently asked questions.
if there is anything that you are concerned about please don't hesitate to leave me a message in the comments below or message me on
Instagram-- @itsahardcrohnslife
Email --itsahardcrohnslife@gmail.com
hope you enjoy, sending all well wishes
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This treatment sounds like a life saver! Think I might push for this one xxxx
Thank you so much for this ! Starting my first entyvio treatment next week ! This has giving me so much hope ! After trying remicade and humuria and those did not work for me at all. My crohns this past year has gotten to its worst and iv lost so much hope but seeing this brings that hope back ! Thank you ! Praying for the same results
I’m so pleased you found this video and it has helped you feel better!. I am keeping my fingers crossed for you aswell . Do keep me updated on here or Instagram please , would love to no how you get on with it x
Entyvio is the BRAND name (the E is capitalized) given to it by the manufacturing company, vedolizumab is its GENERIC name (all lower case)
Very helpful and encouraging video from someone facing this unknown
Thank you, sending all well wishes x
My first infusion for this drug is tomorrow morning! After failing everything else I’m still hopeful (and nervous) This video is so so helpful! Thank you for posting 🙏 💕
aww im so pleased that it has helped you, i hope it has put your mind at rest, before you no it ,you will be out and on your way home. im keeping my fingers crossed that it works for you aswell. let me no how it goes! keep me updated xxxx
It's a Hard Crohn's Life Hi! It all went really well, although that 2 hour waiting period dragged on forever 🤣 home now though :) thank you again xx
Yianna Lazaris I’m so glad it all went well, haha I no what you mean , once the next one is over , they will let you go straight home after which is good, your in n out so quick xx
Hi Yianna, was curious to know how are you making out on Entyvio and how long now? I'm about to go on this within a month and quite anxious but praying for a good outcome..
Thank you so much for making this ❤️ Hope you’re still doing so well. My husband is soon to try this and hearing your story has been so positive xx
Hello there!, oh you are very welcome. I really hope that it works for your husband like it has for me , I will keep my fingers crossed for him and you all!. Do let me no how he gets on 🤞🤞💜
It's a Hard Crohn's Life Hi 😊 Thank you so much and thank you so much for replying! Really appreciate that loads 🤗 I will 😊 xx
Thank you I will ask about that to. I'll give anything a shot to have a normal life again, as normal as I can be. Hope you feel better soon and good luck with everything ❤️
You are a wonderful person how you explained Entyvio... I am so blessed in my life to have a drug like this. I have my life back YIPPEE...I don't know how long it will last but I pray that the rest of my life, I feel like I do today. . To everyone.... I pray you have the opportunity to get this where ever you are in this world and to feel on cloud nine with your life.This is horrible disease but I am proof you can get through it and smile again. God Bless you all
I'm at about 9 months to a year on Entyvio as well! After failing on so many other options, I was happy that this treatment worked! And it's a lot easier for me, because I have crap veins so I have a Portacath, so it's so easy for me! I'm in remission, and hope I stay there for years to come!
Oh yay!! This is amazing!, im so pleased!!!.. yes most definitely, fingers crossed all the way for long term remission 😘💜 xxx
How are things now? How soon did you know it was working?
I’ve been on this drug for about 3/4 months now and it has worked so well! Although I’ve had colitis for 1 and a half years now, this was the last attempt to get something to work before considering surgery. Hopefully it continues to work for me!
Breamo 999 I really hope so to, that’s the exact situation I was in. Massive fingers crossed it continues for both of us🤞🏼🤞🏼🤞🏼
Thank you - you really help to relieve the anxiety and fear and stress of this drug. I"m about to start within a month or so.... never been on any biologic so I"m praying as every drug has failed and miserable side effects. I hope this Entyvio isn't too good to be true. I am worried about chest infections or more frequent colds/flu's etc.... Have you not had ANY of this at all??
Hi Rie, just to update you on my progress. Had my second infusion yesterday which went well. Had to give a blood sample 2 days before which came back as my inflammation marker is coming down. I feel good in myself xxx
Anil Nagi wow this is amazing news!!!, I had a good feeling about it for you, the fact your inflammation markers are already coming down it sounds like your definitely responding well to it!!.. so pleased for you 😀, when is your next one?
@@ItsaHardCrohnsLife my next one is on the 21st Feb. Looking forward to it. Can't believe how well i feel. Full of energy xxx
Anil Nagi absolutely amazing!! I’m so happy for you, and so glad your looking forward to it aswell,
Anil Nagi hiya!, just wanted to check in on you and see how you are feeling now?, I hope your infusion has carried on getting better and better?? 🤞🏼
@@ItsaHardCrohnsLife hi, how are you. My treatment is going well. I got my third infusion on the 21st. I'm not bleeding anymore. My loo visits aren't as bad as they used to be (depending on what i eat). Its really good. Lookimg forward to my next infusion. Can't wait to find out my infection markers. Got and an appointment to see my gastro team in March some time as well. Really excited xxx
Just found your channel ! I was very excited by this drug a few years ago when it first came out flaring a bit these days. Problem is Vedolizumab is very expensive and the gastro always try to put you on the cheaper stuff like azathioprine etc I am trying hard to get this treatment wish me luck.
Ah I really I can completely relate to this, it's like they have a tick off list from cheapest to most expensive and the only way to get to it is go through them all first, I really hope you can get funding for it . I am keeping my fingers crossed for you 🤞. Thanks for watching ,I hope you found it helpful
What foods are you able to eat on Entyvio? What foods do you avoid. Much thsnks.
Aww thank you. I feel so assured after seeing this. I'm UC sufferer and have just switched from Infliximab to Vedolizumab. After 6 days in Hospital back in March, Infliximab worked initially and got me in a good place. But unfortunately after about 4 months I started to flare again so just had my first loading dose. Yet to see any results but wasn't expecting anything until at least dose no.2 which is next week...
My question is.. how long did it take for you to start feeling better when you started with the Vedolizumab?
Anthony Tsoflias it’s a slower working medication as a pose to other meds so don’t worry if you don’t notice any change straight away but it took me about 5 before I noticed. X
@@ItsaHardCrohnsLife thank you ❤
I am taking Entyvio and it is working wonders for me
I have my first infusion tomorrow. I was on Humria for 2 years but this year it stopped working. My CT scan shows severe inflammation in the illeum, it hurts so bad, the cramping and inflammation. They want me to start methotrexate with the Entyvio.
If you could get away with just having the entyvio on it's own try and have that as mine was also very severe and it has healed me , it shows that it is capable of working on it's own with out to many meds xxx ask them and see what they say xxx
thanks for the update...started my Entyvio (brand name) in Jul 22...not without its side effects, eh?
Hi there, I have Crohn's disease and noticed your video was posted 1/19. Are you still using Entivyo, and how is it working for you now? Also, was your Crohn's in the small intestine (if you don't feel comfortable sharing the location of the Crohn's that's fine, just wanted to know whether the Entivyo is still working---I understand small intestinal Crohn's is harder to treat which is what I have)?
Hi can you please let me know how long before you started to feel the drug working . And is it still working well for you?
nk g hiya. It took about 5 infusions before I noticed a real difference. I made the decision to come off of it while I was having a baby so I have just last week gone back on it . I have already noticed an improvement so I think my body has recognised it this time around.
Does Entyvio cause you sleep problems or insomnia?
Was there no improvement during the first 3 injections? Did it help right after the 4th injection or only a few days/weeke later and how did the improvement go, i mean was everything directly normal? Sorry for the many questions, but i’m also on Entyvio and for me it doesn’t help at the moment.
amandine destruels oh don’t worry you can ask as many questions as you need 😀, so I was still on steroids when I started so I went by the amount of blood and the blood had stopped by my 5th infusion but I was seeing an improvement a month in to the 4th infusion. This drug is known for taking longer to work so I’m still hopeful that it will start working soon for you 🤞🏼🤞🏼💜 xx
I've got my second infusion this Thursday :)
Hey I'm on Entyvio as well for the last 10 mouths or so, during my body has been twitching very bad such as feet, hands and more out. Has anyone been have the same side effects too?
Your story is so similar to mine. I start entyvio this Monday! 🤞
taylor corcoran oh really! This could be a good thing in that hopefully it works the same as it has on me! 🤞🏼 let me no how it goes! X
How are you getting on now on Entyvio?
It's a Hard Crohn's Life Going good so far! I’ve had 2 infusions so far. I’m also on Euceres once a day. Progress is slow but I’ll take it. Hopefully after a few more infusions I will be feeling even better. Thank you for checking up! Your story keeps me from giving up.
I’m on methotrexate, pentasa, prednisone and just started entyvio. Going for my second infusion next week so I hope it works for me.
I am off prednisone from last week and now have Entyvio every 8 weeks. I have my life back and you will too. A miracle drug that will work for you like it has me...
Update?
@@robscorner4741 Entyvio was working well until I recently developed a rectal abscess and fistula. Now it’s on to remicade
I dont have any symptoms but inflammation is bad according to doctor and he recommends entyvio, what do u think?
Hello ma'am.. am for how long will you be on Entyvio? Im going to have my 4th dose next week.
Im on entyvio for 6 months now. My question is are you still on entyvio now?
I used Entyvio 10 months ago due to my UC , but it only worked for two months and then stopped working. Then my doctor told me to change the infusion frequency to monthly from Bi-monthly, but is still doesn’t work after changes three months ago, maybe I should try Humira? Any advices?
Humira was a living hell for me. After about 2 1/2 months on it out of nowhere I started experiencing severe panic attacks. GI doc said it can't be from Humira, and my Humira person assigned to me said that symptom wasn't on her list. I decided to stop it anyway. Within a few days I noticed the panic attacks subsiding. When I went to my MD he looked it up and indeed Panic Attacks was listed as a symptom and said I wasn't crazy. Thankfully, I found this channel and got my GI doc to put me on Entyvio instead. Be careful with Humira if you do start it! Good luck! BTW, there are numerous others including It's a Hard Crohn's Life who experienced Panic Attacks coming out of nowhere with Humira!
what are your dietary restrictions while on Entyvio... are you following fodmab CDED or some other diet... and have you had flares being on one kind of diet more than others .. anyone feel free to comment...my son is on EEN currently ... thanks to the crohn s community for feedback...
This is the only treatment that I have been able love a normal life with the only things I NEVER eat are fizzy drinks cordial drinks ( if I do then very very weak) cheese no dairy .or things with pips or skin on. These are all triggers. The best thing to do is make food diary it helps each individual find out what there triggers are xxx
My insurance keeps dragging their feet, so cross fingers I start soon, my flair up is bad!!!
Holly Miller I’m so sorry to hear your having a horrible flare, the wait feels like forever doesn’t it , I’m keeping my fingers crossed aswell that they hurry up and get you sorted ASAP 😘
I have been on this medicine for 3 months now and I still don't notice any changes, 4 doses in total, in a few days I should have dose number 5, otherwise I will quickly take them up to 4, is it possible to be completely cured by this medicine after a few years and stay only on some basic medicine? otherwise I have pancolitis, the strongest form of uc
Entyvio is meant for life.
I am in the same situation now, 4 infusions and still hoping that entyvío starts working.😢 @antrax0191, How are you now? It's working for you now?
Did this treatment helped from bloating ?
Yes it helped with everything, but obviously even people with healthy guts get bloating with certain foods so make sure you try to determine what they are and try to avoid them if necessary 🤗
I’ve only had 2 infusions and am still flaring pretty badly. How long did it take until you saw results?
katie s it took me about 4 infusions before I started to notice an improvement but I was also weaning off of steroids at the the same time so I think I had a bit of a head start. it works by stopping the bad cells entering your gut so it takes a while for your old bad blood cells to leave your gut, once this happens you should start to see an improvement, I think the average is the 5th or 6th so please don’t worry 😘 it has a lot of healing to do , fingers crossed you start to see an improvement in the next few infusions . Keep me updated 💜💜
katie s 3 months i saw a great change. Early statistics showed improvement at 10 weeks. Severe situations may require Humira.
My stuff that’s amazing!,.
When you start to see an improvement it gives you hope xxx
It's a Hard Crohn's Life thought I’d update you! I’m at 12 weeks now and my GI saw no improvement on entyvio :( He’s switching me over to Humira so I’m super nervous about that now but hoping it’s effective 🤞🏻
katie s aww I’m sorry that it hasn’t started to work for you, humira seems to work so well for so many people I have many friends on it, I hope it works for you hun 😘 xx
How are you doing on it now in 2020? Any changes? Hope you are OK xx
Hiya, I am not on it at the moment because I decided to come off while having my second baby, currently 22 weeks pregnant and have been unwell and CANNOT wait to give birth so I can get back on it. I miss feeling well and how normal it made me feel . Currently on steroids to treat it but it's not doing the best job. How are you? Xx
@@ItsaHardCrohnsLife
Hi congratulations, that's great news, sorry to hear that you are unwell, I'm on steroids to because I had to come off vedolixamab for a while because my blood pressure went high so to be safe I had to wait and see, all good now though, they want me to get back on it after the steroids because it actually helped me with my crohns diease but not sure if my blood pressure will go back up again? So abit nervous about it, waiting to see my doctor first, they said I can have blood pressure tablets if necessary but still alot to discuss I only got up to the 8th infusion as well, hopefully I'll get sorted soon, maybe I might end up on Something else we'll see. All the best and good luck xx
@@chellie7887 ahh that's a shame, yeah you can only try again ,there is another one called stelara also that people seem to tolerate well also xx
Hello, I have ulcerative colitis since 2011. I’m already using 150 mg azathioprine. Did u notice any side effect ? What kind of steroid did you use ? Thank you ! Hope u best !
Hiya, I'm really sorry do you mean side effects to azathioprine or the entyvio?? Xx the steroid I had was prednisolone 😘
Sorry i mean entyvio. Im going to use entyvio. Did you have any advice?Thank you for response❤️
@@hannaarslanlar6500 I have never had any side effects on it which is amazing because my body just reacted to every other medications out there, but one thing I will say is dont worry if you dont notice an improvement straight away ,it takes a few months to kick in and do its job so persevere of you can, xxx
I hope it gonna work. I’m from Turkey and thaaannkk youu for every details u gave me !! Thank you and love u !
@@hannaarslanlar6500 you are vey welcome, keep me updated when you start entyvio to let me no how you are getting on xxx
Starting tomorrow hope it works.
Aww I really hope so!!. I will keep my fingers crossed for you. Give it time and do t worry if you don’t notice any change after the first few . It takes a while x
@@ItsaHardCrohnsLife Is it still working well for you?
@@ozoneva4796 yes it’s been amazing!!. X
Hi, how long did it take for it to start working I’m on my 3rd infusion and I’m starting to lose hope nothing ever works😞
Oh please dont worry at this point it took me about 5 , remember the way it works is completely different than other drugs it needs to heal and get rid of all them bad cells built up , at this point I hadnt noticed an improvement, keep positive 🤞💪
It's a Hard Crohn's Life Thanks a lot for your reply I appreciate that. I will let you know how I get on after my fifth 🙏🏻
I will start entyvio treatment for UC soon. Before I took mesalamine for several years. Recent years, I have some flare up which I guess maybe due to the pressure from work. So my doctor advise to use entyvio. I am not sure if that will be helpful to me. But I would suggest you also keep a good life style. Do not worry much and be optimistic. Also care your eating habits, away from acohol , cigarette, less rich food such as BBQ. Also avoid too much fresh vegetables. If need, cook them before eating. Hope that will be the additional helpful tips for you.
Did u try Azathioprine ? ❤️
Courtney manktelow Deals with Crohn’s disease I did yes!, my body reacted bad to that one instantly x
Courtney manktelow Deals with Crohn’s disease however I no so many people that are doing great on it. I suppose that goes to show just how different peoples body’s are x
It's a Hard Crohn's Life that’s literally what I need to keep reminding myself “not everyone’s body is the same “ lol but thank you x