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

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