That sounds like a relatively decent schedule to me. Some of us go through multi month courses of pred starting with a 40mg dose or even higher. Though if you feel like you have arthritis, and your...
I honestly don’t remember all the details, it was over 10 years ago. It was a ct scan from what I recall, followed by an endoscopy. All the tests always indicated UC, something about the biopsies...
So I've been on rinvoq for about weeks, off steroids for about 1 week...and honestly so far so good! Not QUITE as good as last week, but pretty good - very close to what I've felt like when I was in...
Infusions of what?...
So almost 2 weeks in, I'm feeling very cautiously optimistic. I'm down to 10mg steroids, down to 5mg tomorrow for one week. I don't want to celebrate just yet since I'm still taking pred, and I...
So I’m officially off entyvio and started rinvoq today. I’m gonna keep my progress on this thread while taking this med. I’ve been on pred just over two weeks now, started at 40, tapering by...
That is awesome to hear. I was in remission on entyvio for almost 9 years and started flaring a few month ago. We’re switching to rinvoq, hopefully starting this week. Really hope this one works as...
Yea I’m just going to wait….I’ll see how I do over the next few weeks first then get the vaccine assuming rinvoq is showing promising results. I’m sure (hopefully) I won’t get shingles immediately...
So finally talked to the doctor. Looks like we’re definitely starting rinvoq and just waiting for insurance approval. He said I need to get the shingles vaccine, which kind of freaks me out going by...
Ha yea it really is an under appreciated skill. I feel like air farts are such a major milestone, I feel pretty good about myself when I can do it…while I was in remission I would happily fart and my...
That’s good to hear….I’m really hoping the next med works. I’m really dreading going through an uncontrollable flare or constant cycles of pred....
Wow bacon girl I’m so sorry you’re going through this, it sounds horrible. It’s terrible at any age but you are way too young to be living like this, this disease is so infuriating. I really hope...
Yea I’ve been on the 4 week infusion schedule basically since the beginning, which I think is as aggressive as they get with it. We’ll see, hopefully I hear from him tomorrow...
Right now the only thing I’m on besides entyvio is 40mg of pred, and currently tapering at 30. It’s helped, this last week of 40mg has been a pretty good week overall as far as uc goes…although I was...
Hey guys, has anyone stopped and restarted Entyvio? I’ve been on it for about 9 years with great success, but currently have a pretty bad flare up. The plan is most likely going to be stopping...
I don’t know how long rinovaq will take to work but it was a good 3-6 months for Entyvio to start working for me. It was probably 1-2 years before I was in remission, definitely slow and frustrating....
I remember you as well conquer…so many familiar faces. Pretty sad that we’re all still here or here again. I was on here almost 24/7 while flaring badly and tried to completely avoid coming on while...
Thank you all for the support an encouragement! Wow bacon girl sorry to hear that you're back as well! I remember you as Banana Girl lol. Those are almost 2 exactly opposite things! Or can you do a...
Hello! I was diagnosed sometime around 2012 and went through some terrible times in the beginning, basically spent a solid 1-2 years chained to my home, except the days I spent in the hospital. Went...
This would be awesome.... http://www.news-medical.net/news/20151030/Scientists-one-step-closer-to-developing-new-treatment-for-inflammatory-bowel-disease.aspx...
This happen to anybody else? It seems like certain places trigger an urgency attack. Seems like every single time I walk into target, no matter how I feel, I get an urgency attack. It happened today,...
That happens to me also. I think it's because while I'm out especially I have so much anxiety about getting a sudden urgency attack, it's constantly something I'm thinking about. Trying to hold a...
How did you guys make the trip home? If I have surgery the hospital I'm going to go to is about a 1 hour drive, at 20 times that's pretty risky. Do you just see diapers and worry about it when you...
I'm really bad with this too. I always get hungry at night for no reason. I go to bed late too....usually well pas midnight. I tend to eat chips or whatever I can scrounge up. Horrible habit....but I...
Wow great news! Hopefully she has a quick recovery and can leave this nightmare behind! Keep us updated on progress please. :)...
Thanks Kat. I follow your updates closely also - I really hope your daughter continues to improve quickly - I know that last surgery can't come quick enough. Keep the updates coming when you have...
Aren't steroids also a powerful anti inflammatory? So wouldn't they help reduce inflammation quicker and hopefully entyvio prevents it from coming back?...
Well he said the inflammation ends about 3/4 of the way up my descending colon - so it's completely healed from that point up, where as before I had inflammation almost up to the Ileum. So it is...
Hey guys, been a while since I've posted any updates. ITw been about 8 months since I started entyvio. Things are definetly better but not great still. I just had a sig done last week to see what's...
I get them a lot too....I mentioned this to my doc yesterday actually during my entyvio infusion and told him I was concerned that it might point to crohns. He said as long as its on the inside of...
I have the same problem....sometimes it helps and sometimes it doesn't....when it doesn't it gets real brutal and drives me crazy. I used to take Motrin which almost always worked....but obviously...
Good to hear your daughter is getting better Kat and shes well on her way to being UC free. I'm a bit jealous....I'm in a position with Entyvio where I'm doing much better than before, but still have...
Kat, you may have posted this before and I missed it. But do you mind sharing how your daughter is currently doing? Sounds like she's much better....but how is she handling having a bag (mentally and...
In nyc, it's very common policy to require a purchase to use the bathroom. A lot of places even have signs that say bathroom use for customers only. There is no health code requiring businesses to...
http://www.technologyreview.com/news/531241/cancer-detecting-yogurt-could-replace-colonoscopies/ a professor at MIT, is working to replace costly and uncomfortable colonoscopies and MRIs with a...
From what I was told about why Enytivio takes so long to work, is because it's preventing white blood cells from entering the colon. But you still have to wait for existing cells to die off, AND you...
Kind of interesting...a little scary. But wonder if they could create a pill that delivers some kind of shot directly to the colon......
Maybe that's why they don't have any health problems....:)...
Well I believe in the us vedo will only be approved if one other biologic has already failed (like remi). That's partly because of the overblown (probably none existent) associated risk vedo has with...
What sort of new meds coming from out in a few months? I haven't heard of anything in the pipeline that's right around the corner......
I think he meant 18 weeks. I'm due for my 4th infusion in 2weeks...I was doing really well, but the past two weeks I've degraded pretty significantly. So I'm kind of worried, maybe it'll start...
I don't have a problem with people who use mj to ease their symptoms but also enjoy the high....just because you enjoy the high doesn't make it wrong. Nothing in the rule book about medical mj says...
Drive and poop....ha. Imagine getting pulled over while doing that....is that worse then texting while driving?...
I had my 3rd infusion a little over a month ago...I'm doing much much better than before but not in remission. Big thing is I've been off of steroids for about two months now and I'm leaving the...
We just got back from a week vacation at ocean city, nj. Had a great time there! Waves were rough a few days because of the hurricane but that just made it more fun for the kids....:)...
Thanks Gary! I don't drink right now either...I REALLY miss bear, but it's not worth what it will probably do to me (haven't even tried and I'm not going to anytime soon). I think I've noticed that...
Hey Gary...I ordered DAOSin and should be getting it today. I want to give it a try...how do you take it? Do you take it pretty much every time you eat before or after a meal? And how much do you...
I'm a month out from my 3rd infusion (4th infusion in one month)....not sure what to think right now. I've been doing so much better, no more pred and somewhat formed BMs. I even went on vacation...
Not sure about canada, but here in the US you have to have tried and failed at least one other biologic (like remicade) in order to be approved for entyvio. There is no problem switching for remi to...
I had a really bad stomach infection (from sushi I think, because my wife and I got really sick at the same exact time), a few months later I got UC. So I feel like that was a trigger, because that...