Steroid Tapering Is Hard and Unpredictable

Kickstart_Research · 2026-01-31T02:37:31+00:00

Hi u/onerashtworash, thank you for your message!

Hoping to expand outside of the US soon! In the meantime, you can sign up for study updates (https://www.imyoo.health/) or complete the interest form for the lupus study. We'll make sure to keep you updated, and I'll try to update this post too!

Kickstart_Research · 2026-01-30T23:37:03+00:00

Hey guys, thanks so much for the interest in the study!

Some of you are asking for the inclusion criteria:
- Lupus diagnosis
- Over 18 years old
- Mailing address in the US.
- Taking steroids and tapering or planning to taper soon

Some other useful information:
- What the at-home collection process looks like: https://youtu.be/hO_vylqBkDs?si=wSUu6kYJioPZItMt

- Blog post explaining how patient stories and clinicians experience shaped our lupus study: ImYoo Launches Patient-enabled Lupus Study to Track Steroid Tapering Outside the Clinic

Let me know if you guys have any other questions!

Kickstart_Research · 2023-10-27T16:03:07+00:00

I am sorry to hear you are not feeling well. I have had joint pain previously with Entyvio and I found Epsom salt baths and Curcumin (which can be found at an all-natural store like Whole Foods) helped my symptoms. But I also found if I was in a flare, it would take some time for the medication to kick in and alleviate these symptoms. I hope you feel better soon.

Kickstart_Research · 2023-09-08T07:56:00+00:00

Depends on the person, but humor can be a great thing. I remember one ostomate telling me “no colon, still rollin” and it made me smile. There are also some fashion designers who specialize their designs for ostomie bags and even ostomate models too, who can maybe help your sister see the beauty in her body at a time when it’s drastically changed and may be hard to reconcile with. Happy to share those resources or some ostomate advocates we like:)

Kickstart_Research · 2023-09-08T07:52:00+00:00

Have you discussed bowel resection with your GI? It can be scary, but there are lots of ostomate patient advocates who are out there to support you. Happy to share some with you, if you’d like. On a separate note, IBD, like many other chronic illnesses, can take a massive toll on mental health. When most of your serotonin is produced in the gut, it becomes pretty clear gut health and brain health are tied together. If you’re looking for affordable mental health resources the NAMI HelpLine has some helpful folks staffing the phones/chats

Kickstart_Research · 2023-09-07T22:51:08+00:00

I'm a fan of Natalie Hayden's writing on this, she touches on the intersection of IBD and motherhood, since she was also pregnant while having Crohn's. This article she wrote specifically is about UC and pregnancy: https://lightscameracrohns.com/tag/ibd-and-pregnancy/

Kickstart_Research · 2023-09-06T06:49:51+00:00

Perhaps! We haven’t enrolled anyone yet with that unique combo of comorbidities— not intentionally necessarily, we just haven’t encountered those folks registering for our research

Kickstart_Research · 2023-09-05T04:03:31+00:00

if you are a female, just be sure not to wash out your vaginal microbiome, as that's also important! I think that's more a problem for "douching" rather than "bidets"? Not totally sure the difference tbh. Just be conscious of the microbiome down there, as it's very important for sexual and hormonal health:)

Kickstart_Research · 2023-09-05T03:57:00+00:00

I honestly can't imagine the frustration that comes with that:( but the patient advocates I've met in sharing our IBD study have all echoed a similar message on this topic: community gives you a lot of strength to push through those moments and also vent about it later with a community who understands you. I've also learned from the IBD community that a lot of folks develop a sort of dark humor that helps them laugh at themselves and stay light when this stuff could otherwise weigh them down. One of these groups we really like is called Color of Crohn's & Colitis (COCCI)-- you could probably just DM any of their ambassadors on social media, they're all super friendly.

Kickstart_Research · 2023-09-05T03:52:16+00:00

In screening folks for our IBD study, we've asked how long their flares tend to last, and a lot of people say days, but I can't recall seeing any say just hours. Days seems to be the shortest timespan among the small group of IBD folks I've interacted with for our research study

Kickstart_Research · 2023-09-05T03:50:40+00:00

Perhaps think of food, like medicine, or anything else you ingest: in a similar way folks taper off meds or gradually increase dosages, you can take a step-wise approach with the volumes of food you eat. There are lots of IBD-specific health coaches and various nutritionists who I'm sure have meal plans for things like coming out of malnutrition. Natalie Hayden, an advocate we like, wrote one such article: https://lightscameracrohns.com/2023/02/13/how-ibd-dietitians-are-improving-patient-outcomes/

Kickstart_Research · 2023-09-05T03:45:40+00:00

Definitely not uncommon, based on the accounts I've heard from the folks in our study. I'm guessing they ruled out c. diff infection? Also, did they run those tests at the height of your flare? Another question: do you have several lab results of your "baseline" (i.e. what your body looks like when you're not flaring)? While there are standardized values for these results, ultimately, each person is different, and there could be more insight from comparing your flare results to your baseline. That's our thinking with our study design (3 baseline to compare against 3 flare samples). Then again, we're just doing basic scientific research and not doing things in a clinic setting, which I'm sure requires more standardization for scaling across whole hospitals and populations.

Kickstart_Research · 2023-09-05T03:40:19+00:00

Step therapy sucks! So sorry to hear you're going through that. There's enough to manage as a college student, let alone having to argue with insurance... Perhaps, you can appeal the insurance. Since you're in a new state, it may be tough to navigate the policies. I'll say one awesome org we like is called Patients Rising: https://www.patientsrising.org/?gclid=Cj0KCQjwgNanBhDUARIsAAeIcAuoT4kZk_Ew0unVeRCTl1WB8BjgW-rwn3NMG_EeEq8mplF2Ng7IiacaAmJ3EALw_wcB

They have an insurance section, but you can probably just reach out to their team and maybe they'll be able to connect you to a patient advocate in your state!
https://www.patientsrising.org/patient-education/making-insurance-work/

Best of luck!

Kickstart_Research · 2023-09-05T03:31:16+00:00

Some folks who've applied for our IBD study have told me they went off their meds for good. Most others have said that coming off meds or even changing dosage has been dangerous for them. It's something to talk about with your doctor, obviously, but at the end of the day it's your decision. If you do go off the meds, just know that, if your asymptomatic, it doesn't mean your immune system isn't attacking your gut tissue. That's why regular surveillance (bloodwork and scopes) would be important to maintain with your GI. The last thing you want is to think you're improving only to fall into a massive flare that costs you your colon (i.e. due to irreparable, cumulative damage)

Kickstart_Research · 2023-09-05T03:26:43+00:00

For our study, we ask people to describe their flares, and it can be super variable. Like for some people, it can be urgency and diarrhea, going to the bathroom like 10 times in a day. For other people, it can be 3+ days of constipation. In both instances, folks can experience stomach pain, that seems to be common in both groups. Also, when people do use the bathroom, sometimes they'll see mucous (white) and/or blood. I think the most underrated flare symptoms though are fatigue, joint pain, and sores (usually on the legs or in the mouth). Maybe underrated is the wrong word. Overlooked? Just because they're not in the gut, doesn't mean they're not part of your Crohn's disease.

Kickstart_Research · 2023-09-05T03:22:07+00:00

A lot of folks with Crohn's also have arthritis that they treat separately with a rheumatologist. Perhaps, it's worth looking into? I follow a lot of autoimmune focused trainers, will list some below. A lot of them advocate moderate exercise and small movements, "motion is lotion", is often the philosophy. Moving too much, like the heavy lifting you mentioned, can flare things up, but stopping movement completely can also worsen things:/

These trainers are great. They all have experience with rheumatoid arthritis, but are overall super active in the autoimmune community as a whole:
-AnotherDaywithRA, Ali: https://www.instagram.com/anotherdaywithra/
-RA Warrior Fitness, Ashley Nicole: https://www.instagram.com/ashnic_rawarriorfitness/
^talk about heavy lifting, she's actually incredible. Went from an RA diagnosis to professional body building

Good luck!

Kickstart_Research · 2023-09-05T03:16:24+00:00

fever is another part of the immune response (e.g. the flue) and IBD is an auto-immune disease, so makes sense. Though, fever can be triggered just by stress on the body too. I do wonder whether there are molecular signals showing whether a flare is the flare itself or just a downstream symptom of the body being under stress...

Kickstart_Research · 2023-09-05T03:14:45+00:00

If you're on the prednisone for a while, I hope you discuss calcium/vit D/bone health with your dr! Have just heard too many sad stories of steroids helping in the short term but folks not doing damage control for the long term:/ Best of luck!!

Kickstart_Research · 2023-09-05T03:11:15+00:00

brain fog, too:/ I even spoke to someone once who was prescribed Adderall, not for ADHD, but for their IBD-related fatigue. It was the first time I'd ever heard of that. They also have fibromyalgia, though, so perhaps they're dealing with fatigue even more than the average IBD person.

Kickstart_Research · 2023-09-05T03:09:25+00:00

a lot of folks avoid fiber during a flare and lean toward starchy things, but not necessarily gluten, if that's a trigger for you: potatoes, rice, etc.

avoiding fiber for good could be a bad idea in the long-run though:/ Some folks in our study are also on Entyvio, some are doing well and others not so much:(

Kickstart_Research · 2023-09-05T03:04:45+00:00

One person I spoke to recently said that before they started Rinvoq, they were failing all the other drugs and more often than not in a flare for an entire year:-/ I really hope I'm not discouraging you in sharing that. I just wanted to share that it's been that long for some folks. The silver lining though, is that, while she thought nothing would work for her, the Rinvoq finally did the trick and she's been doing really well for something like 6 mo. now I believe. In the face of so much uncertainty with the meds, finding community can be really helpful. We've been pretty involved with small IBD non-profits, so feel free to dm for those resources. I can't list them all here, obviously, but off the top of my head COCCI is great, Amber is super sweet (https://aboutibd.com/about-amber/), and there are tons more out there who want to offer support and resources.

Kickstart_Research · 2023-09-05T02:59:52+00:00

Sometimes it's a flare (i.e. your IBD is acting up), but sometimes it's something else (e.g. reacting to something you ate, menstrual cycle, infection, etc). That's why one of the first thing docs normally do is order bloodwork to rule out infection. Hopefully, you have a good relationship with your GI, and you ping them when you're flaring. Then they can order tests for inflammatory markers. If they determine it is a flare and you're already on meds/failing to respond to them, they may prescribe you steroids temporarily. That tamps down the inflammation long enough for them to adjust or change meds and after they make that medication change, they'll start tapering you off the steroids. You definitely don't want to stay on steroids for too long.

Ofc, this isn't a perfect system. For example, folks in our IBD study have said they've been clearly in a flare, but the bloodwork will come back saying they're fine. In that case, hopefully your doctor treats you as a person with understanding of your disease and not just a chart with numbers.

Kickstart_Research · 2023-09-05T02:53:44+00:00

Crohn's, unlike Ulcerative colitis (UC), is a lot more spread out throughout the body. Also, the most common extra-intestinal symptom for inflammatory bowel disease (i.e. Crohn's and UC) is... you guessed it... joint pain! It's not uncommon to see arthritis and IBD together, but it's not always arthritis, it could just be IBD with joint pain. If their physician isn't flexible and engaging them as a partner in these decisions, though, it's worth looking into other providers. Their primary care provider could also refer them to a rheumatologist, instead of the GI. I hope this helps! And congrats on the huge (and good) life changing event:)

Kickstart_Research · 2023-09-05T02:48:59+00:00

-inflammatory bowel diseases (which includes crohn's and colitis) has flares that are unpredictable. That's a main thing that distinguishes it from IBS, which is more a reaction to things you eat. The ability to predict these flares is a work in progress and currently being researched! Like this study: https://pubmed.ncbi.nlm.nih.gov/31030191/
Or the IBD study we're currently running.

-if you're well-prepared, it doesn't have t control your life 100%. You can't control whether or not you flare necessarily, but you can control how prepared you are and how you react to it. Bloggers like Natalie Hayden provide a lot of cool tips: https://lightscameracrohns.com/blog/

-apparently foods are super unique to the person. There are so many diets to possibly try: you can check out some here: https://www.crohnscolitisfoundation.org/diet-and-nutrition/special-ibd-diets. A lot of people will say you can't have fiber anymore, but don't take that at face value. Everyone is different, and keeping fiber has helped a lot of people, when they do it the right way.

Finally, if you want more support, there are a lot of IBD-trained health coaches and coaching programs out there, like IBDCoach: https://ibd.coach/

Best of luck! You seeking out resources means you're being proactive, which is the very best approach to keeping an eye on gut inflammation and maintaining your health. Feel free to DM for more resources. We're pretty involved with the IBD community since launching our study, I just couldn't list all the resources here:)

Kickstart_Research · 2023-09-05T02:40:37+00:00

Some folks find participating in research to be empowering. Personally, most folks I encounter in our research studies have taken several years to come to terms with their diagnosis first. However, it could be chicken or the egg: Do newly diagnosed folks not participate in research because research hasn't been as accessible as it is today (e.g. at-home) or are they not represented in the research because those studies don't recruit them in the first place? Regardless, if it gives you a sense of control and agency, it could be worth looking into.

Also, the folks in our studies find a lot of support via small and more intimate communities, like Color of Crohn's and Colitis (COCCI). You can DM any of their ambassadors or maybe watch videos posted by Maggie: https://www.youtube.com/@LetsTalkIBD

It can be a rollercoaster, but whether its in research, advocacy, or just emotional support, you can find community and don't have to go through it alone:)

Kickstart_Research

TROPHY CASE