Hey there, I was wondering if anyone had experience trying this treatment. When speaking to my GI doctor, we were discussing alternative therapies in casual conversation. I often bring up different...
"The medications I use to treat ulcerative colitis are all approved for or naturally found in the colon and are administered together, once daily, for 4-6 weeks. Each component serves a different...
Hey there, I've decided, based solely on my own experience with flares: stress is HIGHLY correlated with flares. Is it the CAUSE of our flares? Is it the CAUSE of IBD? Well, doctors like to tell us...
Hey yeah I think that's what will likely happen. It's frustrating that I already might have to double the dose right in the beginning of trying Stelara. But I mean, I guess we have to do what we have...
Hey Ryan, And where are you now with things? In a flare currently? If you started Stelara in October, seems like you were good until January. Then a flare? What has your doc recommended? How are you...
Hey Susie, Thanks for this. Yeah that's what I figured. I am on other medicines as well including prednisone, Uceris, and Rowasa so I'm doing what I can to stay on top of things. Sometimes the flares...
Was in a severe flare from Nov to Jan. Started Stelara (infusion) in Jan and in three weeks, the flare subsided, for a month. Then end of March the blood started slowly to come back right around the...
I'm currently reading Meghan O'Rourke's book, "The Invisible Kingdom: Reimagining Chronic Illness." It's an absolute must-read for everyone here, especially those who feel unseen, unheard, and...
I've been on Prednisone now for over three months and just starting to taper. But around the third month is when my cheeks start puffing up and I look bloated and swollen in my face. It's a trade-off...
I have since moved on from Inflectra but was on a four-week interval of Inflectra for a couple years. I had the same question about risk of infection. This may be different from person to person but...
Are you taking Budesonide in oral or rectal form? I've been taking it in rectal enemas (Uceris) and if you can manage to do it correctly and successfully, it really can help to lessen the bleeding....
Hey Haley, Weirdly I answered your other question too. I think it's because I had a lot of Inflectra experience. As it happens, I had a LOT of skin issues on the drug. From abscesses, to fungus, to...
Hey Haley, Yes! Your doc will likely order either higher dose or more frequent infusion or maybe even both. You can do it a little bit at a time (e.g. every 6 weeks, 4 weeks, etc) until you find your...
Hey all, I'm in the middle of a pretty bad flare. Proctosigmoiditis with severe inflammation after a scope. It's proving to be one of my worst flares. I'm noticing what I think are blood clots on the...
Hey there, Today I have my first taste of Stelara and was wondering what to expect? I'm anxious about a reaction but know it's unlikely. I tolerated Inflectra well but unfortunately it stopped...
I'm in a similar situation. I have high levels of Inflectra and no antibodies, yet have been in a flare for two months now and have had two infusions in that time as well. I cannot go any higher as...
Hey there, Inflectra recently stopped working for me and we're onto a new biologic. After a lengthy conversation, my GI recommended Stelara for me. He said my body has found a new way to inflame and...
Thank goodness I asked! Looks like VSL#3 and Visbiome has had some major DRAMA. I definitely will go with the Visbiome as he is the original formulator and carried it over to this company after he...
Hey there, I'm finally finding a bit of relief from a flare with steroids and switching biologics in the next few weeks. But I also decided to research supplemental products that may be beneficial in...
Hey there, I'm mid-flare and doctor has me on Uceris rectal foam for relief. I'm a pro at Rowasa so I thought this would be similar but it's just not. You insert a nozzle, hold down a little pump for...
Thanks for all the support. I would say this is mild. I've had low-grade fever the last few days, a light cough, aches and pains, headache, extreme fatigue. And that's about it. It sucks still,...
Hi all, Was hoping someone is in a similar spot and I guess was just looking for some moral support. I've been in a flare for about a month now and came home for the holidays only to get Covid from a...
Hey there, Is there anyone with experience with this? I've been in remission with Inflectra for a couple years now (it's worked wonderfully) and suddenly flaring, yet my levels are high and no...
Thanks everyone. I'm just kind of eating cautiously and smartly for now. I appreciate the tips. For TT, I really started on prednisone in 2016 when I started flaring after a ten-year remission. I've...
If you have no time to read... The issue and question: I'm mid-flare and the GI is not providing me with the BASIC time, attention, and care that I need. But I don't think I have the time to waste to...
Hey there, So I've recently begun flaring after three years of remission and I've already forgotten the basics of what to eat while flaring. The internet is pretty crazy with info so I thought I'd...
Hey there, Thanks for this. It feels reassuring. I've done the calpro test and had to be the one to ask for C.diff / stool panel. I just switched docs and my old one would always do C diff when I...
Hey there, I've been on Inflectra for three years and it has worked wonderfully. Two weeks ago I noticed a small amount of blood, then more, and then more. Now I'm recognizing and accepting I'm...
Hey there, Those of us on immunosuppressives don't really know what to expect except, well, that our immune systems are lowered. When I started Inflectra, I had a lot of skin issues, one of them...
Hey there, I've asked my docs this question and just waiting on answers. It's even hard to articulate. I have UC and am on Inflectra and low-dose Imuran, so I'm taking two immunosuppressives. I've...
Who knows?! I'm going to wait until I meet with my GI doctor for guidance. It seems like she will be most informed as she's the one who knows these medicines best, can review my antibody levels, and...
I woke today to news of FDA-authorized booster shots for the immunosuppressed. https://www.nytimes.com/2021/08/12/us/covid-vaccine-booster-pfizer-moderna.html This news obviously affects those of us...
I agree. This is all very confusing. I am in the Cedars Sinai study in LA and they send results with virtually no interpretation. Oh, also they measure in AU/mL, which is hilarious because I haven't...
Thanks for all these responses. I have had inflix levels tested before, and they were only once in non-therapeutic so we upped the dosage. As for Imuran levels, they have always been below...
Hi all, I recently had my infliximab levels tested and they were below range and I'm on the low (albeit very low) range in antibody level as well. I'm on max dose every 8 weeks. I just stopped Imuran...
Hey there, Not sure if the BMJ study from last March was discussed here but looks like there's a follow up study referenced in the NYTimes today: BMJ: https://gut.bmj.com/content/70/5/865 NYTimes:...
Hey there, I'm pretty sure YES it does count toward my deductible but that may be different depending on each individual's plan. I do not think that showing income is a requirement for the patient...
That's great! I was able to schedule my appointments w/my doctor and just received my first dose. Sore arm! Haha. But good otherwise :)...
Thanks for all these replies. I checked in with my doctor and it's looking good so we'll see. Thanks again :) D...
Hey there, I've always been a big-time social anxiety sufferer. The worst part is that no one knows because I come off as congenial and upbeat but most of the time, I'm quite terrified of social...
Hey there, Looking for any Californians out there. I know March 15 (this upcoming Monday) there will be a new group eligible to get the vaccine. It's kind of confusing who is eligible. Basically, I'm...
Hey! I use the patient assistance program for Inflectra and have for the last two or so years....
Hey there, I have UC and have been in remission for about a year and a half. Every so often, I get diarrhea (like right now) and it resolves in a few days. But I can't help but think, every time,...
This is all very helpful. Thanks for responding. I'll have to research Psyllium Seed Powder. I literally just saw it in Whole Foods and was tempted but thought I should research first. I wonder if...
This is all very helpful. Thanks for taking time to do research and suggesting the Facebook groups. I'll have to join them and perhaps someone there will have had a similar experience or even just...
Hey there, Long story short: Last May my mouth erupted in sores and lips swelled up for about a week. Concurrently, I developed all different types of sores on my hands: some in the form of blisters,...
Hey there, I'm looking to up my supplement game, especially during this pandemic. I have UC that's been in remission for almost two years now with Inflectra (just for the record). In terms of...
Hey there, I'm going on three years on Imuran at a relatively high dosage (175mg). It's currently paired with my Inflectra infusion. When we checked therapeutic levels of Imuran, it was below range....
As an addendum, my doc says Imuran you can just come off. I'm of course going to take that into consideration but also curious how others (those who took Imuran) came off it. She wants me on...
Thanks everyone. Yes I was on Imuran before Inflectra and it did nothing. I was in a flare when I started it and not until I tried Humira did my flare stop. And they've just kept me on Imuran this...