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Posted 8/8/2016 2:51 PM (GMT 0)
I'm starting Entyvio tomorrow, late afternoon. The nurse said plan on being there for 3 hours. My dad wants to come with me bc he would feel better. I told him it's not like I'm getting chemotherapy or anything. I'm more embarrassed if he goes and I'd rather just sit there and read or whatever. It will make me feel less of a big deal. But I'm letting him come along bc I know it's just a parent thing...

I'm wondering if I shouldn't make plans for the next few days? Compared to the other infusions, I feel like this might have less side effects. Is that me just trying to be optimistic? I kind of feel like it's going to be a breeze. Has anyone had that experience or do most experience side effects?
Posted 8/8/2016 3:07 PM (GMT 0)
There are often a spouse or parent sitting next to a patient at my infusion center (I'm on Remicade). Odds maybe 1/3 of the time?

Yes, make plans. I wouldn't worry about a reaction during the infusion or slightly delayed (up to 48 hours afterwards).

Good luck, I hope entyvio is your solution for the "big r", remission.
Posted 8/8/2016 3:22 PM (GMT 0)

Doggiedo said...
I'm starting Entyvio tomorrow, late afternoon. The nurse said plan on being there for 3 hours. My dad wants to come with me bc he would feel better. I told him it's not like I'm getting chemotherapy or anything. I'm more embarrassed if he goes and I'd rather just sit there and read or whatever. It will make me feel less of a big deal. But I'm letting him come along bc I know it's just a parent thing...

I'm wondering if I shouldn't make plans for the next few days? Compared to the other infusions, I feel like this might have less side effects. Is that me just trying to be optimistic? I kind of feel like it's going to be a breeze. Has anyone had that experience or do most experience side effects?

I didn't have any side effects really. For me, Entyvio was easy. The first few infusions, it took longer. They made me stay a bit after to ensure I had no reactions. After the first few, they let me leave sooner. Though, before the infusion, they did blood draws which took some time. Getting seated and hooked up take a few minutes and waiting for the medication takes some time. It always took longer than I expected. Even on the "quick" times, I'd bet I was there 2 hours. I think having your dad there will be nice. I never had anyone go with me and it felt a little weird/depressing, but such is life. You will do great! tongue
Posted 8/8/2016 4:19 PM (GMT 0)
Sometimes there are other people with the patients. I just go by myself and read. The infusion itself is only 30 minutes, but it takes about 45 minutes after I arrive before the infusion starts because they have to mix the med for the IV. I asked if they could mix it if I called ahead and they won't do it until I am actually there. During that 45 minutes they get my IV put in so as soon as the med is ready it can start. I didn't have any blood tests before the infusion and they let me go as soon as the infusion was complete.

I haven't had any side effects at all. Went shopping right after my last infusion.

Good luck!!
Posted 8/9/2016 11:20 PM (GMT 0)
So I finished my infusion and it went well. They couldn't find a vein so it took them 3 tried. I have the start of some nasty bruises, but if that's all I have, I'm good with that! It didn't take long at all. I was in and out within 2 hours total. The nurses were all really nice. My dad was cool, but I decided to go home directly after bc I was feeling really tired. By the time I got home I crashed and took a 2 hour nap. Didn't even remember my head hitting the pillow. I'll prob make sure I don't have to go to work directly after the next one in case I'm super tired again. All-in-all, not a bad experience! Thanks for the support everyone. Fingers crossed this helps!
Posted 8/9/2016 11:58 PM (GMT 0)

Doggiedo said...
I'm starting Entyvio tomorrow, late afternoon. The nurse said plan on being there for 3 hours. My dad wants to come with me bc he would feel better. I told him it's not like I'm getting chemotherapy or anything. I'm more embarrassed if he goes and I'd rather just sit there and read or whatever. It will make me feel less of a big deal. But I'm letting him come along bc I know it's just a parent thing...

Once he's seen it run once or a few times he might not be so interested. But just make the most of the fact that, I assume anyway, he cares about you, loves you and wants to see the treatment... He's probably been feeling concerned and hoping you'll be feeling better. Make the most of it - he won't be around forever.... I can relate though of course and these things - and the way other people see things and do things - can be quite amusing ( / annoying) at times.
Posted 8/10/2016 5:34 PM (GMT 0)
I thought I would chime into this thread about Entyvio, considering I have been on it longer than anyone else on this planet.

I have been on for nearly 7 years, I was the first person to go onto the clinical trials of the drug.

It was a lifesaver for me. I has been flaring with UC for many years and was totally steroid dependent. After 6 months, I started to see a big improvement. Other patients on the trial at my hospital, also took several months before seeing any major improvement in symptoms.

I agree with some other comments made here, that it is not a bad idea to start Entyvio once you have gotten into remission with steroids. That is what I did.

I had a 5 and 1/2 year remission, still had urgency but thats always been the case with me.

Suddenly, last year I flared. It was very disappointing. Had to go back onto steroids. And now I am flaring again. So, it appears after several years, the drug has stopped working for me. I am still on it, as my GI thinks it may start working again. But, I am not too hopeful.

So, that is my story. I am hoping to be able to go onto a new trial next year, if possible. Just need to manage my symptoms until then. I cannot go back onto steroids, I only just came off them a week ago and this time they hardly had any effect. And in the past, they always worked wonders. Very scary....

Hope it works well for you guys. Just give it time.
Posted 8/10/2016 6:38 PM (GMT 0)

barnsbury said...


So, that is my story. I am hoping to be able to go onto a new trial next year, if possible. Just need to manage my symptoms until then. I cannot go back onto steroids, I only just came off them a week ago and this time they hardly had any effect. And in the past, they always worked wonders. Very scary....

Hope it works well for you guys. Just give it time.

I decided steroids weren't for me as well. Entyvio also didn't work. I wasn't very sick when I started it, but unfortunately, my symptoms progressed as I remained steroids free, even while using entyvio. Eventually I decided surgery was better than waiting for trials and dependence on drugs/steroids. Though steroids were always a 100% turnaround within days in my case. Surgery was the best decision I've made. Awful living with unpredictability looming over the future. We do have another member here, who is in the xeljanz trial and doing very well. Perhaps that's an option you can explore. I opted not to bother. For me, this is a much better lifestyle. I never spend money on health related stuff anymore. Used my FSA for designer glasses this year - first time since diagnosed with UC that I"ve used it for something "fun". Usually it's for scopes, copayments, and drugs. turn
Posted 8/11/2016 12:54 AM (GMT 0)
Barnsbury, I read that you can increase the frequency of the Entyvio infusions to every 4 weeks. Have you tried that?

Good to hear that it worked so well for you. Hopefully it will start working for you again.
Posted 8/11/2016 8:10 AM (GMT 0)
CCinPA - Thank you. I am already having 4 weekly infusions. Actually, even during the 6 years I was on the trial, I was randomised into the 4 weekly infusion group and they kept me on the 4 weekly ever since.

Actually, I dont think it makes much difference 4 weekly or 8 weekly but I could be wrong.
Posted 9/2/2016 1:15 AM (GMT 0)
First of all, thank you Barnsbury for sharing! I had asked my GI (who also participated in trials) the longest she'd seen someone on it successfully and she said 5 years, so that's interesting to hear how long you made it.

I'm two weeks out from my next infusion but wanted to post an update for transparency:

I've been having D on and off for a few weeks. It started with a salad I ate--I shared it with someone who did not get sick, but that gave me some bad gas, nausea, and D for a couple days. Figured I picked a little bug. It got better until I get my period, and the D started up again (also not unusual, but very severe this time--my period was more heavy than usual so hoping it was correlated).

It's been on and off since, though I'll say it doesn't feel very UC-like. It feels more in like something going on in my stomach, than my lower GI tract. Also, I've been eating kale salads and other redface foods, SO not the best diet choices :) I also don't have the fatigue or aches or pain associated with a flare.

I'm traveling for the next two weeks which generally makes me a bit more constipated so we'll see how it goes. I will update after my next infusion (and will be asking for bloodwork to check inflammation) to see if there's a noticeable change post infusion.
Posted 9/5/2016 2:53 PM (GMT 0)
I had my 3rd infusion on Friday 9/2. Still doing well. I am still tapering prednisone (10 mg today, drop to 5 tomorrow for 7 days and then off). No UC symptoms at all now. BMs 1-2x/day (sometimes 3) which is completely normal for me, always formed, no blood, mucus etc. I can freely fart lol

That infusion was at 6 weeks and the last of the loading doses. My next infusion will be on my maintenance schedule of every 8 weeks. Hope things continue to go well!!

Barnsbury -- hope that you get back to remission soon!

mk11 -- hope that this blip will disappear quickly. It's entirely possible you did pick up a bug so you might want to get a stool test if the D continues. Sadly, salads are something that give me problems if I eat them too frequently. I love them but apparently I have problems digesting them properly so I limit how often I eat them.
Posted 9/25/2016 1:29 AM (GMT 0)
Been a bit of time since I've posted an update, my apologies, I've been out enjoying life :-)
So it's been over a year since the start of treatment and I've been in clinical remission for some time now. Maybe I'm just lucky but Entyvio has worked wonderfully! I wish you all nothing but the best and I'll certainly check in, hope everyone on Vedo is doing well!
Posted 9/25/2016 9:30 AM (GMT 0)
Awesome, glad to hear you achieved remission with entyvio. Definitely get out there and enjoy life now that you not restricted by uc's limitations.
Posted 9/26/2016 1:30 AM (GMT 0)
Update time! My previous post detailed a little blip I had--I do think it was just that, a blip brought up on something I ate plus the hormones of a bad period. I bounced back while traveling to normal BMs and had my infusion a week ago. Since I was doing better, I didn't ask for extra bloodwork. We'll see where things are in November but for now still solidly in remission.

Also I've been doing much better with my infusions energy wise lately, plus no headaches. I still get an extra 250ml of hydration after the infusion (instead of the smaller saline bag) and that has helped--I recommend asking for that if you're feeling especially drained after.
Posted 9/28/2016 11:51 PM (GMT 0)
I have been off prednisone for about 2 weeks and am 4 weeks from my last infusion (4 weeks until my next one). Last week I thought I had caught a stomach bug -- very nauseous, fever (fever only lasted about 12 hours) but now I think it's severe acid reflux. It's worse in the morning. I contacted my dr today and they told me to take another 40 mg of omeprazole at night and see if that helps. I'm also going to have an upper endoscopy when I have a colonoscopy in December.

Not sure what made this get so bad. I've been on 40 mg of omeprazole for about a year and was feeling really good. It may be a combination of just coming off the prednisone and for about a week before this started I was taking a lot of vitamin C due to being around people who had colds. Maybe that triggered an over production of acid that just won't shut off (stopped taking the extra C last week).

No increase in BMs, but not as well formed as they were before. Hoping I get back on track soon!
Posted 9/28/2016 11:53 PM (GMT 0)
Happy to hear of others' continued success with Entyvio!!! Hope is lasts for many years to come!!
Posted 9/29/2016 3:36 PM (GMT 0)
MY STORY - THEN A QUESTION

I don't have a GI doctor, I live in Ontario, CANADA. I have not had a colonoscopy for about 8 years due to it being like being tortured in hell the first time. I tried pentasa and prednisolone soon after having it and being diagnosed with UC and they both almost killed me and I think I got diabetes from pred plus eye damage so I never want to take them again.

I have not had any contact with the GI (and never will) who did my first colonoscopy because he would not help me out at all with anything I wanted to get after doing pred and pentasa such as ldn or other things which I have had to get out of country due to Canadian laws about prescriptions.

I tried all the various diets and I found that it is humanly impossible for me to stay on them for any long period of time before I become literally possessed to go eat something I want again. LDN helps me a tiny bit but nothing more.

So now it is like 8-9 years since that trip to Mexico where I first got UC, and now I feel I want to try Entyvio as the research I have read seems it may be safer then other options with similar results or better but I don't even know if doctors in Canada will allow me to get it without going on remicade or pred again for some period of time first which I refuse to do.

I have written many GIs asking if they prescribe entyvio giving my long story and NONE of them even cared to respond to me at all.

The last 5 months or so I feel like I may now have cancer and am trying to get a colonoscopy, but because my anal skin is so damaged and torturing me in pain to the point I am 90% insane I don't think I can get it done unless I can figure out something to temp heal it, anasol, prep h and prescription creams did not help me.

I am wondering if anyone knows if there are rules for getting prescriptions for entyvio infusions and if someone like me who has not been on any medications for years except LDN occasionally could get on it without having to be first go on remicade or pred or something else?

Thank you
Posted 9/29/2016 9:47 PM (GMT 0)

Tortured said...
MY STORY - THEN A QUESTION

I don't have a GI doctor, I live in Ontario, CANADA. I have not had a colonoscopy for about 8 years due to it being like being tortured in hell the first time. I tried pentasa and prednisolone soon after having it and being diagnosed with UC and they both almost killed me and I think I got diabetes from pred plus eye damage so I never want to take them again.

I have not had any contact with the GI (and never will) who did my first colonoscopy because he would not help me out at all with anything I wanted to get after doing pred and pentasa such as ldn or other things which I have had to get out of country due to Canadian laws about prescriptions.

I tried all the various diets and I found that it is humanly impossible for me to stay on them for any long period of time before I become literally possessed to go eat something I want again. LDN helps me a tiny bit but nothing more.

So now it is like 8-9 years since that trip to Mexico where I first got UC, and now I feel I want to try Entyvio as the research I have read seems it may be safer then other options with similar results or better but I don't even know if doctors in Canada will allow me to get it without going on remicade or pred again for some period of time first which I refuse to do.

I have written many GIs asking if they prescribe entyvio giving my long story and NONE of them even cared to respond to me at all.

The last 5 months or so I feel like I may now have cancer and am trying to get a colonoscopy, but because my anal skin is so damaged and torturing me in pain to the point I am 90% insane I don't think I can get it done unless I can figure out something to temp heal it, anasol, prep h and prescription creams did not help me.

I am wondering if anyone knows if there are rules for getting prescriptions for entyvio infusions and if someone like me who has not been on any medications for years except LDN occasionally could get on it without having to be first go on remicade or pred or something else?

Thank you

You should start your own topic. I had no trouble getting entyvio. I had tried remicade, but I could have opted for Entyvio first. The problem with Entyvio is that the response rate is lower than Remicade, that's why I tried Remicade first. In the US, it depends mostly on your insurance plan. Some require failing other meds, some do not. You probably want to direct your new topic to people in Canada, as they know a lot more about the healthcare there.

As for having a scope with a sore bottom, I would recommend trying a protective barrier, calmoseptine is good. I would think some type of cortisone on the area would help to get it managed. When you're scoped, you're under anesthetic, you shouldn't feel anything. You also may consider seeing a colorectal surgeon to have your anus examined. My surgeon was mr anus, seriously. He made me feel at ease and he was understanding and gentle. I never found that my GI was great with the external butt stuff. I am not recommending surgery, just saying that colorectal surgeons can probably help you get to the root of the problem and provide cream or a prescription that can help. I had yeast once and my butt was in dire shape. I was able to get it fixed up nearly over night with a simple script from him.
Posted 9/30/2016 7:49 PM (GMT 0)
Tortured, I'm also in Ontario. Scarborough. I've been on a few medications before I was finally given Entyvio. I'm going for my 3rd infusion on Monday. Where in Ontario are you? You will need your family doctor to first refer you. Mine works out of Scarborough General. I didn't go on Remicade at all. I've tried the pills but just wasn't working. I don't think you're going to get any doctor to prescribe anything without seeing you first, too many people out there looking to sue over anything at all. You really have to have good insurance to cover this. It's not a matter of just getting a prescription, they have a "health worker" go over your case and will do all the grunt work with your insurance company and if they don't pay it all will help you apply for help to cover the rest of the cost. It's a bit of a process before you actually get it. They set you up in a clinic near you to give it to you. For me it's been well worth it as it seems to be helping. Good luck, but see a doctor, it's not really that hard to get here.
Posted 10/1/2016 7:35 PM (GMT 0)
I had my second infusion of Entyvio on September 12 and will have my third on October 10th. The First infusion on August 29th left me weak with a dull headache and took about 3 days to start feeling better. The second infusion was a little better and hopefully the third will not effect me at all. Since I am in the last 6 weeks of marathon training I don't need to be taking time off. I ran 5 miles the morning after the first infusion and that was a mistake. But the good news is it is working so far with my trips to the BR reduced to 2-4 times a day. I also have days where I don't go in the evening or at night at all. My doctor hooked me up with Entyvio Connect and when my deductible starts over in July I only Pay $50.00 once a year. I just hope the success continues and the side effects are less. I am blaming Entyvio on the fact that my running pace has dropped way off. I just hope once my body adjust to the drug I regain speed and stamina. Hopefully in time for the Vegas Marathon on November 13th.
Posted 10/29/2016 12:02 PM (GMT 0)
Had my 4th infusion last night. It was my first 8 week infusion and I will continue to be having them every 8 weeks. Everything went well. I don't get any effects from the infusions. Last night it was a bit chaotic at the infusion center because they had a cancer patient there who had dementia and was refusing the blood transfusion that she needed. They ended up having to admit her to the hospital. Poor thing.

A month ago I was having stomach issues and dr said to take more omeprazole. I did that for s few days and the issue resolved and I stopped taking 2/day and dropped back to my usual just one. I'm thinking it must have been a stomach bug. I feel fine. Really fine (well except for my achy knees -- have had issues from taekwondo days long before UC). The only time I think about UC is when my phone alarm goes off to remind me to take my Asacol.

I am a bit clumsy sometimes and am always getting cuts and bruises and recently I noticed that they seem to be healing faster than usual. Maybe that's because my body can concentrate on the little injuries better now that it doesn't have to work so hard in my colon. Sounds like a good theory to me at least.

I have scopes (upper & lower) scheduled for December about 2 weeks before my next infusion. Guess I will find out then whether this is just symptomatic remission or the real thing!
Posted 11/4/2016 2:47 PM (GMT 0)
Hey guys, I've joined the Starting Entyvio club >_>.

Had my first infusion yesterday. Should've had it on the 2nd November, but well... [long story] pharmacy didn't mix it up in time [/long story], so I came back the next day at 8:30am to get it.

There was initially a mild hitch, as the vein in my left arm didn't take kindly to having 300ml of Entyvio pumped into it at a fairly rapid rate. My left arm started hurting really badly and there was some swelling at the injection site. So the nurse moved the cannula to my right arm and lowered the infusion rate; it was all good after that.

Zero side-effects thus far. No headaches, fatigue (other than from sleep deprivation...), or whatever. It's obviously way too soon to tell what effect it will have on my bowels yet, but so far nothing seems better or worse on the bowel front.
Posted 11/4/2016 6:28 PM (GMT 0)
Good luck NCOT. I am really hoping Entyvio gets you feeling 100% functional :)
Posted 11/4/2016 10:34 PM (GMT 0)
Thanks nssg :p
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