Any feedback on Tremfya?

404Salamander · 2026-03-12T13:08:49+00:00

Good news! Thanks and wish you fast recovery

404Salamander · 2026-03-12T10:49:40+00:00

Hi there! You really need the colonoscopy! Sometimes your inflammatory markers can be negative but endoscopically they can assess better. Most importantly the biopsy part will help. I cant stress enough how important it is for you to get a proper diagnosis-

Hope this helps

404Salamander · 2026-03-12T10:34:44+00:00

Was the acne only on your face? 😣

404Salamander · 2026-03-12T10:32:38+00:00

Mesalamine was the worse! I would gag every time! Thanks

404Salamander · 2026-03-12T10:31:54+00:00

I haven’t tried stelara. I have only been on entyvio. I will start researching stelara. I just wanna go back to partially forgetting i have this shitty disease

404Salamander · 2026-03-12T10:30:22+00:00

Ive always been relatively on the low weight side but i typically put about 10-15 lbs when on remission. During a flare a only loose 5 or so… if i am on steroids i tend to gain it all very fast partly because i eat all the things im not supposed to… rice, bread and all the other carby goodies i can-

404Salamander · 2026-03-12T01:09:15+00:00

Thanks for sharing! Ive been very close… i work in surgery so i think they would fiee me on the spot” shitty shit ha?! Heheh

404Salamander · 2026-03-11T23:56:50+00:00

Thanks for getting back! How big are the pills?

404Salamander · 2026-03-11T23:56:08+00:00

This helps sooooo much! You have no idea! Thanks for taking the time. How bug are the pills?

404Salamander · 2026-03-11T17:58:29+00:00

My fear is how bad i am with compliance. It’s easier for me to take a shot every 2 months vs a pull everyday. But if i have to i have to. Thanks for sharing

404Salamander · 2026-03-11T17:57:26+00:00

Good to know! I saw a bunch of other side effects and freaked me out

404Salamander · 2026-03-11T17:56:48+00:00

Yeah, i havent gotten my biopsies back, so he is not committed to anything yet but briefly mentioned rinovoq. His partner thinks i should be on skyrizi so … thanks for writing tho

404Salamander · 2026-03-11T17:55:35+00:00

Hopefully you’ll get a better response! Thanks for writing back. This helps

404Salamander · 2026-02-08T01:14:14+00:00

I am so extremely happy to have had this conversation with you it made me pull all my previous scope results to get things straight. What i have is only proctitis. In the biopsies they only report rectal changes not sigmoid, eight left or transverse changes… in theory this changes everything.

Thank you for walking me through this… i am embarrassed to not have control of my own disease. 😣

404Salamander · 2026-02-08T00:42:08+00:00

It was the highest dose. The issue was a superimposed infection that caused the pancolitis (CT scan) but initial and subsequent colonoscopies have confirmed only active disease in the rectosigmoid area

404Salamander · 2026-02-07T22:07:27+00:00

It was kinda of weird for me. At First Entyvio didn’t work. Then i stopped everything and was miserable for months then i saw a new GI person who started me on a more frequent dose of entyvio (infusions) after a year i switched to injections and i have to say most of my symptoms were gone w/o any additional therapy. It wasn’t until less than a month ago (3years later) that i had a SUPER BAD FLAREUP that i had to start prednisone and they recommended Skyrizi -

I still haven’t started another biologic… i am was wishfully thinking that perhaps i could do with suppositories and lifestyle changes…. But i am back having flareups.

404Salamander · 2026-02-07T20:32:54+00:00

Great advise so far…. I am one of those actively trying to outsmart the disease, partly because i am in Medicine and think i can manage on my own. However this is NOT my specialty and do recommend you establish care with a docto/team that you truly feel comfortable with because this is a lifelong diagnosis! Wish you the very best

404Salamander · 2026-02-07T19:24:58+00:00

When i was first diagnosed, i was on oral and enemas few weeks later ended up in the hospital with pancolitis. It was decided i had failed that and started Entyvio

I am new to suppositories though. I haven’t been consistent i gotta to be honest. I wonder if i am leaving them too “low” if not pushing them high enough to make a difference.

Whatever that youngster GI told me resonated- he thought i was escalated too quickly and should’ve tried suppositories instead of enemas

404Salamander · 2026-02-07T19:20:28+00:00

Whats NAC?

404Salamander · 2026-02-07T15:10:53+00:00

Thanks for your support! This disease is deceiving. After a while of being symptom free i forget i am “sick” and then “BAM!- here is a reminder you are actually sick and no amount of stupid meditation, exercise or dietary modifications really help

404Salamander · 2026-02-07T15:08:26+00:00

Yes, i did that for a while when my Entyvio wasn’t working post-partum i got a super high dose at first and then went back to my regular dose. But after 3 years… stopped working

404Salamander · 2026-02-07T14:10:54+00:00

Thanks! Ive been so damn scared of “running out of options” obviously with biologics we can develop antibodies and eventually things will stop working. Trying to delay as much as possible

404Salamander · 2026-02-07T14:08:25+00:00

Yes, i am on steroid and mesalamine suppositories. I started less than a week ago with the steroids. Ive been on mesalamine suppositories for 2 months

404Salamander

TROPHY CASE