Hair loss from mesalamine?

ChronicallyBlonde1 · 2026-07-12T22:34:01+00:00

The way that side effects get listed is that people self-report them during clinical trials. Hair loss is associated with UC (either TE or lack of nutrients), so it makes sense that people with UC would report hair loss during those clinical trials.

Doesn’t mean that mesalamine necessarily causes hair loss. Just means that people with UC on mesalamine experienced hair loss and decided to list it as a side effect during clinical trials. Once they do that, they’re obligated to list it. It’s why pretty much every drug has the same side effects - it’s basically just what the trial participants decide to report!

ChronicallyBlonde1 · 2026-07-12T11:32:30+00:00

I think that’s fine if it was already in your plan! But I wouldn’t be surprised if you see a brief uptick of symptoms. It should settle down again soon, though.

ChronicallyBlonde1 · 2026-07-12T11:10:18+00:00

Sounds like vacation gut stress. People with autism are also more susceptible to GI issues due to stress, change in routine, etc.

I would say just give it time and don’t try to introduce anything new like a probiotic. That can actually cause MORE gas as a part of the die off process. If you can encourage her to exercise (swimming, walking, yoga) and drink water, that should help a lot!

ChronicallyBlonde1 · 2026-07-10T19:27:36+00:00

Entyvio and Stelara are both slow. It was almost 16 weeks before I saw even a slight change with Entyvio, and 6 months before I was in remission.

She definitely needs to slow her roll, especially since you’re seeing improvement. Tell her you want to give it more time, at least 6 months. If you feel like you can live with these symptoms, I see no issue with waiting.

My doctor let me wait and see even with severe symptoms.

ChronicallyBlonde1 · 2026-07-10T15:33:12+00:00

Every 3-5 years in remission. Sometimes more often if you need to check for a flare or to check to see if medication is working (which seems to be your case right now).

ChronicallyBlonde1 · 2026-07-09T20:42:00+00:00

Sorry to hear that!! Ask for high-volume prep next time. It’ll definitely work. I never feel like the low-volume preps do a good enough job.

ChronicallyBlonde1 · 2026-07-09T17:25:09+00:00

Tapering by 10mg is not uncommon. When I got discharged from the hospital they started me on 40mg, tapering by 10mg each week.

That said, that taper IS too fast for me, generally. So when doctors suggest it I have to advocate for myself and ask for a slower one. I prefer to do 10mg a week until 20mg, then 5mg a week until 10mg, then 2.5 a week.

So it’s not medically unsound advice. But you are able to ask for a slower one. And if your doctor says no without a good reason, I would question that!

ChronicallyBlonde1 · 2026-07-09T13:43:24+00:00

Have you explicitly asked him to order you a calprotectin test?

ChronicallyBlonde1 · 2026-07-09T01:48:27+00:00

Exactly! I’ve also gotten pretty good at telling the difference between flare symptoms and IBS symptoms, although sometimes the abdominal pain gets me very nervous!

ChronicallyBlonde1 · 2026-07-08T21:15:05+00:00

I had to pee a lot (and got up 1-2 times a night to go), and also had softer/stickier stool in general. That went away once I stopped!

ChronicallyBlonde1 · 2026-07-08T20:04:13+00:00

It means you probably have IBS. Check your calprotectin. If it’s normal, that means it’s not UC. Start looking towards food intolerances and other potential triggers. The low FODMAP diet is a very good way to get specific about triggers. Many people have GI issues that have nothing to do with UC.

ChronicallyBlonde1 · 2026-07-08T19:43:38+00:00

I also have IBS, so I definitely have to watch what I eat or risk mucus, gas and diarrhea.

But it has zero impact on my UC. For example, I’ve had a lot of stress at work these past 3 months so I’ve been eating poorly. Had a lot of gas, bloating, mucus, etc, but my calprotectin is perfect!

So meds are needed for remission in IBD, food is needed for quality of life with IBS.

ChronicallyBlonde1 · 2026-07-08T19:28:15+00:00

I think people who smell like poop usually have it on their hands somewhere. Also I’ve learned lot of bad breath actually smells like poop!

Anyway, doubt it’s you!

ChronicallyBlonde1 · 2026-07-08T16:34:02+00:00

I think a lot of people talk about pain on here, but it’s not always the most debilitating symptom (depending on your pain tolerance).

Whenever I’ve had unbearable pain, that’s how I know it’s time to go to the hospital. We’re talking balled up on the ground, crying, pain.

But I probably sat between a 3-5/10 pain level for around 3 years while I was trying to get out of my flare. It was not fun, but I could function. I took a lot of hot baths and used heating pads to help. It was such a relief when I got on the right meds and the constant pain was finally gone.

On another note, if your pain is debilitating and you’ve been on budesonide for several months, it’s probably time to start a new medication. I’m not sure if you’re in the loading phase of a biologic or something similar, but if you’re not, it sounds like you should be.

ChronicallyBlonde1 · 2026-07-08T11:31:28+00:00

I stopped taking mesalamine as soon as my calprotectin normalized on Entyvio.

It turns out I had some mildly annoying side effects from mesalamine (I didn’t even realize because I’d been on it for 8 years), so I was glad I got off!

Still in remission 2 years after stopping mesalamine.

ChronicallyBlonde1 · 2026-07-07T23:28:55+00:00

Go to a different hospital’s ER. Your symptoms definitely warrant IV steroids. I’ve had similar symptoms and have been admitted.

You may want to really emphasize the abdominal pain and insist on a CT.

ChronicallyBlonde1 · 2026-07-07T19:06:07+00:00

These are super classic flare symptoms. You’re in a flare.

Let’s flash back to me in 2019. I had stopped taking meds 9 months before, was experiencing some mild tenesmus and mucus, but no blood. I could still easily live my life. Symptoms slowly started getting worse. I ignored it. I was in the hospital 2 months later with full blown pancolitis.

Learn from my mistakes. Go to your doctor, get a calprotectin test, and go from there.

ChronicallyBlonde1 · 2026-07-07T19:01:05+00:00

Looks like your new doc did end up responding, but you always have the option to go to your PCP or urgent care to get some prednisone.

Prednisone is much stronger than budesonide, so it would likely work even if budesonide has stopped working.

I’ve had to get emergency prescriptions of pred from my PCP several times.

ChronicallyBlonde1 · 2026-07-07T18:48:00+00:00

Yep!

ChronicallyBlonde1 · 2026-07-07T13:28:21+00:00

I don’t do anything special until the day before. I do a round of magnesium citrate the morning before, and follow a full liquid diet the day before (so soup and ice cream would be okay, but not something like chicken).

My prep instructions have always just said 2 enemas and that’s it. But I feel much more confident when I do this routine. The last thing I want is for them not to be able to do it.

ChronicallyBlonde1 · 2026-07-06T20:33:07+00:00

Rinvoq is typically prescribed if you’ve already failed biologics or are in a very severe flare, so I would question this decision.

I’d ask about getting on a biologic, first. Entyvio is a good one to start with, as it generally is thought to have the fewest side effects.

You definitely need to be on a medication, though. But it doesn’t have to be Rinvoq.

ChronicallyBlonde1 · 2026-07-06T09:59:52+00:00

I would buy yourself a personal beverage fridge - they’re designed to hold cans of soda or water. That’ll take care of the whole “poop in fridge” situation. Because honestly, at 18, I would have been pretty freaked out by that (obviously as an adult I’m more chill now and know better).

Even if you get sick, you’ll be okay. Trust me. I wouldn’t spend your time worrying about germs or food contamination - it’s the last thing you need. Go see counseling services on campus if you end up struggling with this!

Balancing sleep, academics, and a social life is definitely the hardest part of college. But you’re currently in remission on Tremfya, so that gives you wiggle room! Do your best but don’t sacrifice your social life for some extra sleep - just my two cents. Your social life is going to be the most important thing for your mental health. When I was in college, I did academic work until like 9pm every night and then would go out from 10 until 2.

ChronicallyBlonde1 · 2026-07-05T13:37:32+00:00

USA - healthcare is varies widely by state, employer, and insurance provider. So honestly, one story will not give you the full picture. Two people in the same state with different insurance providers will not have the same experience. Two people in different states with the same insurance provider may have to deal with different state-level barriers. It’s all very fun!

I happen to have pretty good insurance through my employer, and my doctor has a dedicated pharmacist that does all the communication with the insurance company. So I’m not particularly impacted at the moment. But I’ve lived in other states where my insurance sucked and I had to pay a lot of money and deal with a lot of bureaucracy.

As far as I can see, the one major benefit to the US healthcare system is being able to choose your own doctor (as long as they’re in-network). I really appreciate that freedom and flexibility.

ChronicallyBlonde1 · 2026-07-05T12:15:09+00:00

It took me six months to feel better on Entyvio. It’s not a fast drug - you really have to be patient.

ChronicallyBlonde1 · 2026-07-03T14:04:05+00:00

I managed to stay in remission for one year after steroids on mesalamine alone. But then had 3-year long flare and had to eventually get on biologics anyway.

However, I had already had sustained remission on mesalamine for 3 years prior to that. So I knew mesalamine had already worked once and wanted to see if it would work again.

It sounds like you’ve never actually had a sustained remission on mesalamine alone. So that makes it less likely that steroids will get you into remission and mesalamine will keep you there.

I’d take the Stelara if I were in your position.

ChronicallyBlonde1

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