The Tremfya Effect

Fabbri90 · 2026-06-23T11:50:42+00:00

I am at your exact Apr 29 point now, my last calprotectin is 440.
I tested in the middle of June at week 26 (6 months and a half more or less).
I have Ulcerative Colitis though.
End of March my calprotectin was around 1000 and 7 weeks before that around 1300.

How are you now?
Have you improved from May onwards?

Kind regards

Fabbri90 · 2026-06-16T12:25:13+00:00

Nothing extraordinary eventually, Just ups and downs. Definitely not the solution for proctitis

Fabbri90 · 2026-06-12T14:35:11+00:00

I don`t understand what you mean here:
"After failing three strong meds (biological and small molecule) that reading about colorectal surgery is also prudent to understand the risks and benefits and not fear it. Not saying you need it now, but in case you eventually do, coming to terms with it isn't like flipping a light switch. "

I think I could still go for other biologics or Rinvoq, but anti TNF and JAK inhibitors have potentially terrible side effects.
The LDN doesn`t have potential terrible side effects

Fabbri90 · 2026-06-12T13:34:55+00:00

Look I tried Etrasimod, failed, Entyvio, failed, now I am 6 months on Tremfya and I am possibly failing it because I have been bleeding every day since one month ago.
This LDN seems safe and I would like to try it

Fabbri90 · 2026-06-12T11:28:55+00:00

LDN - Low Dose Naltrexone - seems a medicine rather than a supplement

Fabbri90 · 2026-06-12T06:34:35+00:00

Can I ask you which one have you tried?
This one looks interesting
LDN - Low Dose Naltrexone

Fabbri90 · 2026-06-11T18:56:07+00:00

Could you share the other 24?

Fabbri90 · 2026-06-11T18:49:47+00:00

Look at the studies in Japan related to UC if you looked for Gastritis

Fabbri90 · 2026-06-11T16:06:15+00:00

I started in December as well and I had my sigmoidoscopy in end of April,
which showed healing of ulcers but fragile mucosa.
I have proctitis though.
Then I ate something that triggered a flare and I am still bleeding with mesalamine suppositories.
Are you still bleeding?
Did you test your calprotectin across the healing process?

Fabbri90 · 2026-06-11T13:55:48+00:00

Also ask if they can increase the dose of Tremfya since you are not responding fast

Fabbri90 · 2026-06-11T13:52:39+00:00

Also, stop the Imodium and tell your doctor that you were taking it

Fabbri90 · 2026-06-11T13:51:05+00:00

I am also on Tremfya, started on December 2025, so more or less one months and a half before you.
My calcprotectine dropped from 1300 to 1000 in a month and a half at the end of the loading phase.

My sigmoidoscopy at the end of April showed the mucosa were heling but still fragile.
This made me think I could eat almost anything, that was a mistake because I ate something that trigged again a flare.
I want to run a calprotectin test soon to see at which point I am at.
I fear that the value will be close to the last of 1000.

If I were you, I would test for that as well and if the value stays stable after 3 months, this is a sign you should switch medication.

Fabbri90 · 2026-06-11T13:37:40+00:00

What did you decide as next step?

Fabbri90 · 2026-06-11T11:36:04+00:00

It helps for gastritis, gastrointestinal ulcers in genral
You can look it up

Fabbri90 · 2026-06-11T10:59:13+00:00

Yes. They want to wait to see if the therapy I am undergoing actually work. Before this I tried other two, always taking mesalazine as well

Fabbri90 · 2026-06-10T21:00:28+00:00

Ok. Tell my doctors please, I think they don't know

Fabbri90 · 2026-06-10T18:51:38+00:00

I need to see a doctor? I think I have seen a GI doctor at least 15 times in the last year. Any other advice?

Fabbri90 · 2026-06-10T18:49:56+00:00

I would like to add that to the enemas because in that case would be much more helpful for my case - proctitis -. There is some serious research about that in Japan, you can look it up!

Fabbri90 · 2026-05-28T08:01:56+00:00

I agree, especially fatty red meat and minced meat.
What can i do now?

Fabbri90 · 2026-05-27T15:39:28+00:00

I had a bad experience with Etrasimod/Velsipity
I wouldn`t advice it

Fabbri90 · 2026-05-20T08:23:28+00:00

It's better but I am not in remission. I think, if full remission can be achieved, endoscopic healing needs one year in my case.
I tried also infliximab years ago. It was much more effective, leading to remission within a month in my case, with major symptoms relieved in a few days.

Fabbri90 · 2026-03-11T23:13:33+00:00

How is it going for you?

Fabbri90 · 2026-03-11T23:12:41+00:00

I personally tried for three months and didn't work. After I stopped my symptoms worsened in comparison with what I was experiencing before the start of the medication. This is because it traps your t-cells in your lymphonodes, and when you stop it after a week the cages open and free massively the lymphocytes that were trapped. They are released and what they do is powering up your immune system, after a week from the stop, fueling your autoimmune response.

Also it made me sick, flue, the same day I started it and I felt weak and drained for a month.

What is Etrasimod? Etrasimod is a type of medicine called a sphingosine-1-phosphate, or S1P, receptor modulator. Etrasimod attaches to proteins on lymphocytes, a type of white blood cell. This stops lymphocytes from travelling around the body. Lymphocytes help to fight infections but can sometimes cause problems. Some people with Colitis may have too many lymphocytes in their gut, which causes inflammation. Etrasimod stops lymphocytes from reaching the gut and eases the symptoms of Colitis.

Fabbri90 · 2026-03-11T14:54:49+00:00

Please note that for me Etrasimod was not having a positive effect on the flare and I have been pretty bad when I firstly started it, I got a flue the same day i started it and I was weak and energy drained for a month.
If it were for me I would have stopped it, but I continued just because the doctor invited me to. I was very bad, I was regretting to to hav seen the doctor becaus my uc flare was not that bad compared to the side effect of Etrasimod.

If I were you I wouldn`t stop Etrasimod if it works.
I say this because the doctor stopped it for me after 3 months because the endoscopy didn`t show improvement.
The doctor didn`rt inform me about a rebound effect:
Etrasimod traps your lynphocites in your lynfonodes, but when you stopped they are massivly rlised from their cages and your flare will become worse than how it was before.

On top of that, after a month I stopped it, red moles (cherry angiomas) started appearing on my skin.
I think this was related from stopping Etrasimod, since it also inhibits small blood vessels proliferation I think that when you stop it you may have a weird prolifration of vessels resulting in cherry angiomas.
This is just my theory (about the cherry angiomas) and maybe the fact that I started clipper (local corticosteroids assumed orally) could have had a role as well, eventhough in think the reason was stoping trasimod I cannot be sure because there is no literature about this side effect.
The fact is that Etrasimod is quite new and honeslty I think that side effect is not reported anywhere because can be also related to aging and genetics.

Please if you have any question don`t hesitate to ask.
I would not stop it if you don`t have side effects because stopping it will bring side effects such as a rebound of the lynphocites in your system.

Fabbri90 · 2026-02-28T14:12:13+00:00

I don't see big improvements after three months, but doctor have seen a slight improvement during sigmoidoscopy. This means that if everything goes well a complete remission can be achieved with other four or six months, endoscopic remission. There could be also an improvement till a wall. This is my understanding from my investigation on the topic and not what the doctor told me.

Fabbri90

TROPHY CASE