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DavidEA

HealingWell Forum
>
Member Profile
Display Name
DavidEA
Profile Created
8/12/2017 7:51 PM
Last Seen
6/5/2023 10:12 AM
Total Posts
126

Last 50 Posts

Worried about Rinvoq :(

Hey there, In a pretty bad flare. Currently on Stelara but seems to have stopped working. Already tried Humira and Remicade to no avail. GI says Rinvoq is good next step. With Stelara, he always...

5/31/2023 10:09 AM

Ulcerative Colitis
Foamy D

Hey all, I know this might be a little too much info but lately when I go to bathroom there's some thin white foam at the surface of the water. I haven't done any suppositories or enemas. But I'm in...

5/12/2023 12:53 PM

Ulcerative Colitis
How many trips is too many to the bathroom?

Hey all, Been in flare since March 1. On Stelara since last year, did re-induction recently so we're waiting to see how things pan out. I did an iron injection last week and hours after it made my...

5/5/2023 12:53 PM

Ulcerative Colitis
C. diff vs. bad flare

Hey there, A month ago, I saw a flare coming on. I'm definitely in it now. But about a week ago I had some bad belly pain (lower left quadrant) around the time I have to go to the bathroom. So this...

4/9/2023 2:58 PM

Ulcerative Colitis
Streaks of Blood :(

Hey Suttie, yeah that all sounds about right. "What I'm about to lose." That's a big thing for me too. I know what is coming. My quality of life decreases so much. Honestly it's the urgency and...

3/16/2023 8:42 AM

Ulcerative Colitis
Streaks of Blood :(

Hey. Thanks for response. I feel the same way. When I first see blood, I don't believe it's true. And also experience denial. "This can't be a flare. It must be something else." And even when I keep...

3/16/2023 8:35 AM

Ulcerative Colitis
Streaks of Blood :(

Hey there, I've been on Stelara since August and all has been well. It put me into remission. But out of nowhere last week, I noticed streaks of blood in my poop. It's not very much but pretty...

3/16/2023 7:47 AM

Ulcerative Colitis
Silent Colitis

Hey there, I was curious if anyone has heard of silent colitis. It's something my doctor referred to in reference to my specific case. I've been in a flare since November of last year and it went...

8/24/2022 3:23 PM

Ulcerative Colitis
Hyperbaric Oxygen Therapy

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...

6/21/2022 2:44 PM

Ulcerative Colitis
Van Jordan

"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...

Yesterday 8:39 AM

Ulcerative Colitis
Stress & Flares: An Epiphany

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...

4/11/2022 7:31 AM

Ulcerative Colitis
Stelara & How Long It Takes to Work

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...

4/11/2022 6:44 AM

Ulcerative Colitis
Stelara & How Long It Takes to Work

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...

4/11/2022 5:21 AM

Ulcerative Colitis
Stelara & How Long It Takes to Work

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...

4/10/2022 9:19 AM

Ulcerative Colitis
Stelara & How Long It Takes to Work

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...

4/9/2022 7:16 AM

Ulcerative Colitis
I didn't "fail" the drug. The drug "failed" me.

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...

3/10/2022 12:53 PM

Ulcerative Colitis
MoonFace

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...

3/9/2022 3:45 PM

Ulcerative Colitis
Questions about more frequent Inflectra infusions

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...

3/9/2022 3:41 PM

Ulcerative Colitis
Symptoms returning on Inflectra….

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....

2/11/2022 11:39 AM

Ulcerative Colitis
Biologics and skin issues

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...

2/10/2022 12:33 PM

Ulcerative Colitis
Symptoms returning on Inflectra….

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...

2/10/2022 12:28 PM

Ulcerative Colitis
Blood Clots While Flaring?

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...

2/4/2022 10:14 AM

Ulcerative Colitis
Stelara Loading Dose: What to Expect?

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...

1/28/2022 8:26 AM

Ulcerative Colitis
Inflectra trough/antibody test results

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...

1/11/2022 2:11 PM

Ulcerative Colitis
Stelara: Who's Taking It?

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...

1/10/2022 11:11 AM

Ulcerative Colitis
What are the preferred probiotics/bacteria among us?

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...

1/7/2022 3:56 PM

Ulcerative Colitis
What are the preferred probiotics/bacteria among us?

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...

1/6/2022 1:51 PM

Ulcerative Colitis
Uceris Foam is SO difficult to use

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...

12/31/2021 10:14 AM

Ulcerative Colitis
Mid flare / caught covid / on prednisone

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,...

12/30/2021 12:14 PM

Ulcerative Colitis
Mid flare / caught covid / on prednisone

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...

12/30/2021 9:47 AM

Ulcerative Colitis
High Inflectra Levels / No Antibodies / But Flaring

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...

12/11/2021 11:49 AM

Ulcerative Colitis
What DO you eat during a flare?

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...

12/6/2021 8:19 AM

Ulcerative Colitis
What to do when your doctor is not doing their job?

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...

12/6/2021 8:06 AM

Ulcerative Colitis
What DO you eat during a flare?

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...

12/4/2021 7:19 AM

Ulcerative Colitis
Flaring after three years of remission :(

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...

12/1/2021 4:04 PM

Ulcerative Colitis
Flaring after three years of remission :(

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...

11/30/2021 3:17 PM

Ulcerative Colitis
Humira causing abscessd teeth?

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...

11/9/2021 3:52 PM

Ulcerative Colitis
Third Dose OR Booster? Confusing.

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...

11/9/2021 2:20 PM

Ulcerative Colitis
Antibody test after Covid vaccine

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...

8/13/2021 11:48 AM

Ulcerative Colitis
Booster Shots for the Immunosuppressed

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...

8/13/2021 7:40 AM

Ulcerative Colitis
Antibody test after Covid vaccine

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...

8/13/2021 7:29 AM

Ulcerative Colitis
Inflectra Levels & Antibodies

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...

5/13/2021 11:20 AM

Ulcerative Colitis
Inflectra Levels & Antibodies

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...

5/10/2021 11:48 AM

Ulcerative Colitis
Infliximab & Vaccine Antibody Response

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:...

4/15/2021 1:28 PM

Ulcerative Colitis
Remicade/Inflectra Rebate Programs?

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...

3/29/2021 8:20 AM

Ulcerative Colitis
Vaccine, Biologics, & California

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 :)...

3/23/2021 7:25 AM

Ulcerative Colitis
Vaccine, Biologics, & California

Thanks for all these replies. I checked in with my doctor and it's looking good so we'll see. Thanks again :) D...

3/19/2021 1:21 PM

Ulcerative Colitis
Books on Social Anxiety

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...

3/19/2021 1:16 PM

Anxiety & Panic Disorders
Vaccine, Biologics, & California

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...

3/11/2021 8:21 PM

Ulcerative Colitis
Remicade/Inflectra Rebate Programs?

Hey! I use the patient assistance program for Inflectra and have for the last two or so years....

2/16/2021 9:22 AM

Ulcerative Colitis
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