My Vedolizumab / Entyvio 8 month Update! (2018)

[@SethPleasants]

Hello! I am also taking Entyvio and it helped put me into remission with my UC. It's always great to hear from other IBD sufferers and how they manage things with this condition. I went to school for filmmaking and then I got diagnosed right after graduating - so I started vlogging about my journey! Hope you keep making content, stop on by!

[@ItsaHardCrohnsLife]

I do apologise I have only just recieved this message with another notification, best wishes x

[@jennifermeehan5792]

Seth, how many infusions did you do before it stopped the flare?

[@PleasantsProductions]

@@jennifermeehan5792 Well the Prednisone is what stopped my flare but I was able to start tapering off Prednisone after I started Entyvio. After the initial Entyvio ramp up (I think it was about 4-5 infusions) I was able to slowly taper down to about 5mg of prednisone. It seemed like it was tough to come off the last 5mg as I felt like I was sort of teetering on a flare. Then I tried something a little unconventional with my doctor and we double dosed me (back to back) with Entyvio. We did that because I was about to move to Hawaii and we didn't know how long it would take for me to get infusions on the island and my doctor thought that doing a double dose would help extend how long between infusions I could last. That seemed to really help and I was able to come off Prednisone completely.

[@jennifermeehan5792]

@@PleasantsProductions Seth...Thank you so much for taking the time to reply to me. I know everyone is different, but it's nice to know after 4 or 5 infusions things will get better.🌞

[@SethPleasants]

@@jennifermeehan5792 It's worth mentioning that when I was first diagnosed I tried Entyvio(at the time it was a new "revolutionary drug") but it didn't work. I spent 2 years trying various medications and therapies/diets/lifetyle changes which helped and then tried Entyvio again and this time it worked. Still on it (every 8 weeks) and still in remission (clinical and endoscopic) for about 3 years now. You're right everyone is different and there are a lot of variables. I think lifestyle change, exercise, mindset and this one is big - being consistent and systematic with medications.

[@KennyVert]

Thank you so much for sharing with us. We are all in this together! Blessings, -Kenneth

[@plaintuber4036]

Hahaha “my first normal poo” I totally understand 🤣🤣🤣🤣

[@anilnagi7396]

Hi, really encouraged to have watched this video. Thank you for sharing this. I have been a Crohn's sufferer for the past 2 and half years. Been on Pentasa and then they put me on Humira since April this year. Every time i had the injection i have been coming up with abcesses. So now then plan is to put me the infusion. Really encouraged to see your doing well and looking great

[@ItsaHardCrohnsLife]

Dont give up, its about trial amd error and you will end up finding something that works for you. This infusion has been amazing and i keep my fingers crossed it works for you aswell, do keep me updated 🤞

[@anilnagi7396]

@@ItsaHardCrohnsLife I certainly will keep you updated. Thank you so much for taking time out and replying to my message

[@chellie7887]

Thanks hopefully there is something else for me. But I'm glad that you're doing well, and being checked properly xxx

[@anilnagi7396]

Hi Rie, the infusion is in and now they're watching me for an hour x

[@ItsaHardCrohnsLife]

Anil Nagi don’t be nervous it’s natural to be apprehensive about something you haven’t done before but your gonna smash it and be fabulous like you have up until now!!! 💜 I’m proud of you xxx

[@anilnagi7396]

@@ItsaHardCrohnsLife Thank you so much for all of yoir support. Really appreciate it. I'm back home now. I feel no different to how i did when i went in. I feel normal. No side effects and its going to stay that way xx

[@ItsaHardCrohnsLife]

Anil Nagi that’s brilliant news!! Let’s hope it helps your symptoms soon for you 🤞🏼

[@bobbyv879]

May it continue to work for you.

[@kevinclavijo6954]

This made me feel better but the side effects of this infusion scares me. I have UC been struggling with it for 3 years. I’ve done all the medicines from A-Z hoping not to get to this part but it came to it since the steroids and anti-inflammatory drugs weren’t working. Like you said I’d taper down from steroids and the flare ups would begin again. What scares me is that my Gastroenterologist said I have to be on this infusion every 8 weeks for the rest of my life if I go this route and that’s something that no one wants to hear. He encouraged me to seek a second opinion from an IBD before making up my mind but he strongly believes this is the next best thing for me. It sucks to have to constantly be thinking where the nearest bathroom is 😕 I laughed when you said how happy you got when you had your first normal poop in so long cuz I can totally relate 😂 You mentioned going off and back on treatment if I hear correctly, is yours not long term? I asked my Gastro if for any reason I want to stop in the future would I be able to he said no 🙅🏻‍♂️ it’s long term.

[@ItsaHardCrohnsLife]

Remember this is a gut specific treatment as apose to it working all around your body like most treatments which is why the side effects are unlikely ,Little if none. If this works for you like it has me you will be living a normal life again which is definitely what you want rite? 😊. The treatment only take half an hour so your in n out in no time. If you was on it for a few years and decide to come off of it that will be your decision but you never no what the future holds so dont worry about being on ot long term yet just think about your healing now xxx please try not to worry if I can do it you definitely can 💪💪💜

[@kevinclavijo6954]

It's a Hard Crohn's Life gotcha I see what you are saying. Yeah that was scary because like what if important events fall on the days I haven treatment 🤷🏻‍♂️. Anyway thank you for responding and I’m taking it into consideration. Seeking a second opinion soon from another Gastroenterologist. Yes I want my “normal” life back not worrying about where the bathroom is or thinking about when the these random sharp pains will come and finally get a good night sleep.

[@ItsaHardCrohnsLife]

@@kevinclavijo6954 yes definitely, you can have it up to a week late , on my last one I was on holiday so just had it when I got back ,its very flexible which is good ,keep me updated xx

[@kevinclavijo6954]

It's a Hard Crohn's Life ah gotcha that’s good to know kinda eases the mind a bit. Stuff like that tent to stress me out. I will, thank you!

[@ItsaHardCrohnsLife]

@@kevinclavijo6954 no worries at all, xx

[@jayeshpatel9034]

Thank you for sharing your story, I am about to start my Entyvio treatment in a couple ofweeks, after a flare that can no longer be controlled by the usual meds. Have been really worried about the side effects of Entyvio.

[@ItsaHardCrohnsLife]

I think its natural to be worried about side effects . After your first one you will relax more knowing you will be fine xxx

[@Gefjon37]

I have been freaking out on the side effects, and I am glad you have had no reactions!!! Again my mind is at ease!! 💕💕💕

[@ItsaHardCrohnsLife]

I can totally sympathise, i was exactly the same, at my hospital there hasn't been 1 person that has reacted which i found very assuring xx

[@tobythomas3413]

The side effects are what I am worried about too.

[@ItsaHardCrohnsLife]

@@tobythomas3413 its completely normal to worry x

[@rondarenee8428]

Thank you so much for your videos! I was wondering if you are still taking Entyvio and if you have had Covid while on it.

[@chellie7887]

Hi Glad you're doing well, on entivo. I am not so good, I had my 3rd and had a bad skin reaction. So there going to stop the drug, and put me on something else, so I'm gutted. I would still be careful as there is a lot of side affects and one is a serious brain disease, they told me. So I hope you don't get anything. Xxxx

[@ItsaHardCrohnsLife]

Michelle Chase oh im gutted it didnt work for you, oh dont worry i don't intend in being on it for ever, they review you after a year, and also carry out crucial bloods 2 weeks before every infusion otherwise they dont go ahead with it for you , as long as there keeping a close eye on me and im feeling well im sure all is good 😘 xx

[@tyramotar]

Michelle, they give me pre-meds (Benadryl and Tylenol) 30 min before my infusion to counter reactions. Did you do something similar? Or are pre-meds not an option? While Crohns and Colitis are almost identical, vedolizumab seems to take longer for colitis (i have colitis). In either case, this is a very, very slow performing drug. I wish you the best and hope you find what works for you. I know what it’s like to be tired of being sick.

[@chellie7887]

Hi Ty. Thank you for your comment. I will try anything at this point. I will definitely look into fasting and the pre- meds, I didn't know that you can do that. I have a procedure in a couple of weeks to look at my small bowel with a x . ray, so I'll see how that goes. Thanks again Michelle xx

[@UToobin75]

Michelle, mind if I ask what sort of skin reaction you had, and how long it took to resolve itself? I've read that the half-life of Entyvio is 25 days, though it can take up to 6 months to be completely eliminated from the body. My gastroenterologist had me try Entyvio a little over two weeks ago now. A week after my initial infusion, I began to itch -- BADLY. A rash began to develop along many spots on my body, and has now progressed to the point where I'm affected head-to-toe (eyelids, belly button, behind the ears -- the whole kit and caboodle). It is easily the most intense and persistent itching I've EVER experienced. Prescription and OTC topical creams have accomplished very little. I've also had days of chills, fever, and headaches, which I can only assume is interrelated. Saw two doctors, one a dermatologist, and they both thought that it looked like a drug reaction based on appearance, and seemed to dismiss the possibility of any type of parasitic skin infection. The dermatologist took a biopsy from an affected area, and from that, they'll be able to determine if it is indeed a drug reaction. I get the results back in a few days.

[@kammranhussain]

Thank you so much for the information and regular updates. Is this treatment available through nhs? Or is it something you have to go private for? What i am struggling to understand is why do doctors not offer this treatment first prior to the all the other medicine?

[@ItsaHardCrohnsLife]

It's such a shame to say but it all comes down to money. I have it through the NHS but seemed to have to go through the tick off list of other cheaper meds before finally getting to this one. Which is a feal shame because in the mean time my disease got progressively worse and took longer to heal. I would definitely mention it to your consultant xx

[@kammranhussain]

Thank you so much for your reply, my next appointment is tuesday so i shall let you know what they say! Also thank you for sharing and spreading positivity about this illness, its easy to get caught up and give up when you suffer from it, but your videos give us all hope that one say we CAN be better! ❤️

[@Vee333mase]

Amazing video again, nice t-shirt

[@ItsaHardCrohnsLife]

Thankyou! 😉

[@chellie7887]

Hi Ty . Thank you for your comments it's nice to know there's others like me, just wish it wasn't in a bad way. I am actually due my 8week entivo infusion in 2 weeks, I've been fine lately, the skin problem only lasted a day, but I had the same situation with inflimib, so there sending me to a dermatologist too. I have never been given any pre medication before my infusions ever, which seems to be a common procedure Inn different countries, so I don't know why when don't here 😕 I wish they did because it would make me feel calmer before having it done. They did switch me to 8week to 6week then to 4week on the inflimib but they haven't said anything about this one except it can take a long time to work. But they want me to do a self injection one if this doesn't go well . Which I'm not very excited about i don't know if I can do it myself. Thank you for reaching out to me. I hope you are doing OK too. I'm feeling better than I have been just waiting for a check up. Thanks again Michelle xx

[@tyramotar]

Michelle, I'm managing. Over the last few years I've tried many types of diets, vegetarian, vegan, low carb, etc. what has made me feel better is 16 hr fasting. I eat an early dinner (5p-ish), then have only water until lunch time the next day. I found giving my digestion a break helps. I do take in about 1800 calories during by 8 hr eating window. There's a lot of information on the Internet about intermittent fasting if it's something you think you might try. About the pre-meds, maybe they'll let you bring your own, it's just Benadryl and Tylenol. I wish you all the best.

[@verameladze9152]

Hello, thank you for those videos. Starting same medication and I’m terrified 😞 I see those videos are 3 years old, can you please tell me if you still taking Entivyo and how do you feel? Do you stop and then restart or how it’s going for you. Thank you 🌸

[@mwa11000]

Wow 7 years, I have only had UC for 1 year and was ready to die hopefully this drug will work for me

[@anilnagi7396]

Hi, hope you're having a brill Christmas. Just to let you know that i start my Vedo on the 10th January. Yaaaaaay. Looking forward to it x

[@ItsaHardCrohnsLife]

Anil Nagi aww thankyou, and to you to. So you won’t believe this, I actually started my vedo also on 10th January omg this has to be a good sign right?! Lol xxx

[@anilnagi7396]

@@ItsaHardCrohnsLife No way!!! Lol. Absolutely, I'm going to take this as a good sign. I'm running with it. I'll keep you posted x

[@ItsaHardCrohnsLife]

Anil Nagi ...yes totally!, please do!, I will message you before then anyway to make sure your feeling okay xxx

[@anilnagi7396]

@@ItsaHardCrohnsLife Ok, speak to you soon. Hope you have great start to the new year and hope 2019 brings you good health x

[@ItsaHardCrohnsLife]

Anil Nagi right back at you!, I will be keeping my fingers and toes crossed for you for the 10th 🤞🏼🤞🏼 (there’s no toes crossed emoji) 😂😂 xxx

[@tyramotar]

Thank you for sharing your experience. My history is convoluted but it’s lead me to start Entyvio last Oct; went through the loading period then the 8 week cycle. I’m also on 6MP and steroids. In Apr, there was no change to my situation, the Dr did a blood concentration test to check the level of vedolizumab in my system. It cam back as 8.4 ug/mL, they are looking for 40ug/mL to be in remission so they’ve increased my frequency of infusion to every 4 weeks. Have you done a blood test to see what the drug level is in your system? I’m glad it’s working for you...is there such a thing as pooping vicariously?

[@ItsaHardCrohnsLife]

Ty Ramotar I do apologise I have only just seen this as it didn’t come through as a notification, how are you getting on at the moment with your infusions? C

[@adanartan3425]

Thanks for sharing your experience with public. I am currently on my third entyvio infusion for my ulcerative condition. Did you encountered breathing problems as a side effect. I just took a flue shot and not sure if that is the problem.

[@ItsaHardCrohnsLife]

Hey there, no I havnt experienced any side effects on this touch wood. Sometimes it could be a mixture of things if you are run down etc but it could quite possibly be the flu shot for sure x

[@missfabiable]

Hi, im from Brazil! Thank you so much for sharing you experience! Would like to know if you are taking any other medication than entyvio? Thank you again!

[@ItsaHardCrohnsLife]

Fabiana Ribeiro hello there, thankyou for watching!. Entyvio is the only medication intake now 💜

[@missfabiable]

@@ItsaHardCrohnsLife

[@jeffreyaguilar8028]

I just got my first infusion for UC a week ago. Is it normal to have a strange headache. I don’t know if it’s a side effect or I’m dehydrated. The thing I’m spooked about is getting PML. Even though it says it’s 6.75/100,000 but hate being a statistic especially how I would prefer how it was with Humira where there was a 1% chance of maybe lymphoma cancer which can be cured as oppose to a fear of PML where it will kill you.

[@allan210015]

Has anybody ever gotten the flu or covid while on Entyvio? Was your body able to fight it like normal? That's my biggest fear about this medication for my UC.

[@ItsaHardCrohnsLife]

Yes I’ve had covid twice I fault it off the same as anyone else , to be honest I think I was better than a lot of people when I had it because remember your immune system is all ready active . I don’t think this particular drug is much of an immune suppressant like some of the others as it’s gut specific x

[@allan210015]

@@ItsaHardCrohnsLife ok cool! Thank you! I feel better about getting it now.

[@renatabell4039]

Thank you.

[@anilnagi7396]

Hi Rie, how are you. How's your health. I know i'm always telling you how i'm coping. Thought i'd ask how your coping xx

[@ItsaHardCrohnsLife]

Anil Nagi haha no worries at all, I’m all good thankyou at the moment, hope your feeling okay after your entyvio,

[@camthegamerburgess8482]

Hi there just wondering when you’re feacal calprtectin levels went down? I know you can feel better with this drug on this and you can still have active information?? Thanks

[@anilnagi7396]

Hi Rei, how are you. Where you been. How you getting on. I'm still on Vedo and found that when i got to about week 6 my symptoms would flare up. So now i'm going to be having it every 6 weeks instead x

[@ItsaHardCrohnsLife]

Hiya, well that's strange I was only wondering how you was just yesterday!. I'm doing good thankyou, a few days of blood here n there which worried me a little bit other than that all good in myself. Ohh that's good that they have bought it forward for you a few weeks. I'm so pleased it's working for you still though , I think if needed they can do it every 4 weeks also so that's always there for a back up of you ever needed xxx

[@anilnagi7396]

@@ItsaHardCrohnsLife Awww bless you. I thought about you a couppe of time but didn't get round to messaging you. Apart from that i'm ok. I've had a couple of blood issues too but not as what it used to be. I mentioned to the nurses at my last infusion that i found i was getting to 6 weeks and they said keep an eye on it. So this time round i was at work and saw my GI consultant walking up the corridor so thought i'd have a word. He did say that they can put me on every 4 weeks as well so i'll see how it goes x

[@ItsaHardCrohnsLife]

@@anilnagi7396 yeah it sounds like you will be just fine every 6 weeks , it sounds like you've cracked it. I hope you have been enjoying life again 😀💜 x

[@anilnagi7396]

@@ItsaHardCrohnsLife Hi Rie, how are you. My CRP level is down to 6 now and my infusions have to moved to 6 weeks xx

[@ItsaHardCrohnsLife]

@@anilnagi7396 hiya, oh that's good news!!!, I think you've definitely found what works for you now!, I'm all good thankyou x enjoying our summer 😀

[@n.r.s5534]

You said you wouldn't order a burger full of chilies, why is that are you following a special diet for your chrons with this treatment, and sorry to disturb you do you still take pentasa or other chrons medications, hope you will answer my questions thanks a lot for your videos very helpful

[@ItsaHardCrohnsLife]

Hiya Noora!, anything spicy can upset a normal healthy gut let alone someone with Crohn's so chillis would be like the worst thing so i definitely avoid that but i dont follow a diet however i dont have milk and certain things that would aggravate. I dont take anything else on this treatment. When i first started it i was still on steroids but i managed to wean off of them and now i just have the entyvio every 8 weeks xxx i have also done a video on things to avoid, you may find this heloful also. Sending you all well wishes 😘💜

[@mystuff1405]

Same here at 4 months. Only side effect is tiredness but that may be just me. It seemed to start at the same time.

[@jameswu5376]

I had my Entyvio 6 months ago, it worked fine at the beginning, but now it suddenly stop working, I am thinking maybe some sea food or spicy food triggered the symptoms. My doctor suggested to change the infusion frequency to 4 weeks from 8 weeks, I am now waiting for my 3rd infusion in early July, hopefully it will work, but now still very bad, 20 times in bathroom everyday. I am a little concerned about the more frequency may cause more side effects, but what else can I do? Anyway thanks for sharing your information!

[@ItsaHardCrohnsLife]

James I’m so sorry by our suffering at the moment. Have they suggested maybe a course of steroids to get this flare up under control and maybe staying on the 8 weekly infusions because even though it may have seemed like it was working well at first it is a slow working treatment and would usually take longer than 3 to start doing it’s full job?. x

[@jameswu5376]

It's a Hard Crohn's Life I am thinking of reducing to 6 weeks gradually if 4 weeks works well to me, definitely I will tell my doctor about steroids (which I never used before), But one thing I need to figure out is why Entyvio suddenly stopped working? I recalled I drank a couple of bottles of beer, a little spicy food, and some sea food, is this the reason? I don’t know and my doctor doesn’t know either. I did a blood work one month ago to test the Entyvio concentration level and anti body, still waiting for the testing results now.

[@ItsaHardCrohnsLife]

James it’s most definitely a possibility that the spicy food or the culprit. Have you seen my video of foods to avoid? I hope that you find it helpful. Because even though you may be on a treatment that works you still have to make sure you avoid certain foods that could make you flare or aggravate. X

[@jeffreyadams8345]

I am discussing this with my doctor

[@bobbyv879]

Did you get an entyvio welcome pack once you first started on entyvio.?

[@ItsaHardCrohnsLife]

No i think i only got a little booklet, but i had already done research so it kind of just repeated whagi already new x

[@bobbyv879]

@@ItsaHardCrohnsLife Yes you are definitely right do your own research. I now know a lot about Entyvio by looking on the Internet etc.

[@bobbyv879]

Are you still free from any side effects? Will you be on this drug longterm? I am really happy for you that this drug is working for you. May that continue all the very best to you. XX.

[@ItsaHardCrohnsLife]

@@bobbyv879 ah thankyou.i still have no side effects coming up to a year, i don't plan to be on it forever but im trying not to think about that for now and just enjoy being well, as you no this disease can be so unpredictable xx

[@despatrick5602]

Have you tried Uztekinumab? It's working for my Crohn's but it's giving me a very itchy rash

[@ItsaHardCrohnsLife]

Des Patrick no I’m not familiar with this one. Does it have a brand name? X

[@bobbyv879]

Are you taking any other drug in combination with the entyvio? Sorry how long have you been on this drug now?

[@ItsaHardCrohnsLife]

Hiya , no nothing else, i was on staroids at the start but weaned off of them once id had my 3rd infusion. I have been on it since January x

[@jasonelliott9762]

How long after you started Entyvio was your stool normal? I had my second infusion a few days ago and im still having diarrhea and still losing weight.

[@ItsaHardCrohnsLife]

I would say that after 5 I had my first normal stool in ages. Remember It’s a slow working medication so try and hold in and in the meantime cut our dairy will help x

[@jasonelliott9762]

@@ItsaHardCrohnsLife Oh gosh. Looks like i have a while . Will do. Thanks for the advice!!

[@praisedalord58]

How are you doing now? Still on Enytivio?

[@ItsaHardCrohnsLife]

Hello there, still doing very well thankyou xx😊

[@praisedalord58]

It's a Hard Crohn's Life ❤️🙌🏻🙌🏻🙌🏻🙌🏻❤️

[@scott-j6u]

Hi, hope you are well. Are you still on vedo? I started my loading doses last week

[@ItsaHardCrohnsLife]

Scott Dodds I made the decision to come off of it for 9 months while I was having a baby but I also re started it last week with my loading dose!. How are you feeling?

[@scott-j6u]

It's a Hard Crohn's Life I’m very well thank you, I think that’s down to the steroids I am on. Just like you I tried pretty much all of the available meds, infliximab, humira etc without any joy. I hope you don’t mind me asking but because your journey seems to be similar to mine. How were you when you came off it?

[@ItsaHardCrohnsLife]

Scott Dodds to be honest as soon as it was out of my system I flared up straight away and spend the last 8 months in a flare and on steroids. I’m also still on steroids , I’m down to 20 Mg now . I do think that the steroids help give it a kick start so that’s a good thing. I really hope it works for you like it did me

[@scott-j6u]

It's a Hard Crohn's Life thanks, I hope you get into remission again too. :)

[@ItsaHardCrohnsLife]

Scott Dodds and you to. Keep me updated on your treatment will you be reducing steroids soon?

[@ninjatlsss]

Bit more than half an hour out of your life! I go every 4 weeks. Each time takes 3 hrs on average...

[@ItsaHardCrohnsLife]

Thankyou for your experience feed back . My nurses must have it down as mine still only takes 30 mins and in there 45 mins tops . Not sure why it would take 3 hours . Hopefully they start doing it quicker for you soon 🤞🏼🤞🏼😀