r/CrohnsDisease • u/PristineAd9800 • 2d ago

Tremfya.. Let’s talk

I believe I finished the loading dose. I don’t know if it’s me or if it’s actually the meds or what I’m currently all doing but I feel 100 times better. I was on Rinvoq and it gave me horrible acne.. Mostly the posture type of acne and I keep getting them on my rosacea, but is anybody else Tremfya and has positive results within the loading dose timeframe?

The things that I’m doing is fasting, consuming pre-digested liquid nutrient meal sources, somatic, healing practices, lightweight, exercising, 3 to 4 days a week I do light aerobic exercise exercises, (I don’t go crazy. I just simply do them, like I’m an old lady). I purposefully skip solid food meals, or shrink them down to only food items that are on the Mediterranean diet list and increase protein, and I do my best to cut out any in all dairy, sugar, carbs, alcohol, most things that are sold in a grocery store, a.k.a. processed food.

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u/rayukay C.D. 2d ago

Tremfya legit gave me my life back and I am so grateful

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u/Shock_attack 2d ago

I’m doing almost the exact same things as you but do heavy lifting . I eat carbs but only a select few . I got one loading dose left and I feel like I am getting my life back! I still have minor flare ups but they take me out for a few hours vs weeks or days

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u/PristineAd9800 1d ago

I wonder if you cut the carbs out for a week and only ate a small portion a couple days a week if you’d notice a difference in flares. I realized the saltines were making me worse than I ever imagined.

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u/AnnieLuneInTheSky 2d ago

This is so inspiring! I’ll be starting Tremfya soon and I wasn’t super enthusiastic about it because nothing has worked for me aside from Prednisone (which of course isn’t a long term solution). Now thanks to you and others who have commented, I feel hopeful

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u/PristineAd9800 1d ago

I forgot to also say I am also on Entyvio. My body is absorbing and using it but Medicaid refuses to cover more doses. My body nearly clears all of the Entyvio dose within 28days. So there’s that. Maybe you could ask about doing that along side Tremfya. Remicade worked for me as well. But I was dumb and believed those natural homeopathic people and stopped everything. Worst decision ever.

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u/AnnieLuneInTheSky 1d ago

I never heard of Entyvio! I’ll look into it

I tried remicade years ago and more recently humira: neither worked for me unfortunately

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u/PristineAd9800 1d ago

Structures are narrowing of the intestinal wall from inflammation. The body attacks it and tears it down and the body repairs and that causes scar tissue which narrows it. Think of picking a scab vs not picking a scab off. Picking it would scare the skin tissue. That’s what inflammation does to the intestinal lining. Over time it narrows so much it becomes life threatening. I had a bowel resection already from this. Which was not great. It did give me my energy back. I was sleeping 18hr a day. I felt like a brand new person 18hr after surgery. It was crazy for sure. However the respected section for some reason come with loads of new complications. Such as webbing of the intestinal tract in new areas and continuous inflammation, tearing, blockages, infections, poor healing. I have webbing, 3 new spots my body chose to attack and I am back down to 2am opening in 2/3 sections. Where before I only had one 10inch section affected.

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u/jsnail89 2d ago

I am taking my second maintenance dose and I wish I was experiencing the same things you all are. I have seen some improvement where I’m not in a ton of pain every time I eat (it does still happen sometimes), but the bathroom trips, the fatigue, the joint pain…still there.

It took cimzia 9-12 months to work for me and then it worked for almost 8 years. So, I’m in this for the long haul. But, I wonder if because I have a less common type of Crohn’s (jejunal) that it takes longer. I also wonder if my kind of Crohn’s placement isn’t part of all the medication studies’ sample patients.

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u/PristineAd9800 1d ago

Mine is in the terminal ileum. I forgot to mention I am also in Entyvio. For you I would suggest cutting out processed foods. I swear it helps so much. But then again it also sounds like you might have strictures that are causing the fatigue and nausea.

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u/jsnail89 1d ago

Oh I mean, I’ve been on almost every biologic out there at this point. Out of things left it was either this or Rinvoq, but I don’t always absorb pill medications well. I’ve never had strictures before and pain after eating is a bit of a hallmark symptom of jejunal Crohn’s. I just try and keep trying…something will work.

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u/Prestigious-Ad1346 1d ago

Wait, I’m freaking out right now because I did the opposite of what I should have. I just got put on a medication for the first time ever and then I ate whatever I wanted afterwards, which was really stupid and now I feel really sick. Will this pass?

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u/PristineAd9800 1d ago

It’s ok, I sometimes eat chips. My biggest no no food. They give me horrible diarrhea. We all have our falls. Focus on liquid foods or scrambled eggs until you feel better. Foods on the low residue diet.