u/Born_Elephant9728

I’m so frustrated with this Fkn disease man…… I was diagnosed in 2017 and I have been on virtually all the biologics plus azathioprine. In 2022 I had a bowel obstruction and ended up in the hospital where they pumped me full of IV prednisone to get the obstruction to pass. Since that day in 2022, I became a huge advocate for myself. Anytime I start to flare, I call my doc for prednisone. I demand it. Why? Because if I just sit back and don’t do anything, I’ll end up with another bowel obstruction. And when I get to the hospital, what will they do? They will pump me full of prednisone!I have kept myself out of the hospital for 4 years now by advocating for myself and not staying silent.

I have been steroid free for a year now. Recently i started to flare, Tremfya finally failed me after a year of remission. The flare got bad, and I called my GI for some prednisone. Well I have been on the prednisone now for 2 months, and I can’t seem to get below 40mg without flaring. We are going to go back to Humira since it worked for me 8 years ago, and I have had success with every TNF blocker I have taken. Anyways, my GI is like “ we got to get you off the steroids, and I don’t know if I want to give you anymore” Mind you I went an entire year steroid free and have only been on them 2 months. I told him, “ I know steroids are not good for me, but for now until we get going on the Humira and insurance approved it, what is the alternative? Flare so bad I go to the hospital and they pump me full of IV prednisone at much higher doses?

It’s so annoying. Having to deal with the pain from the disease, and battle the doctor and be my own advocate. Yes I know prednisone isn’t good for you, but neither is the alternative. Prednisone is apart of having this disease, and is merely a bridge until you get on a new therapy. Telling patient who literally needs it that, “ I don’t know if I want to give you anymore, it’s not good for you” without offering an alternative is patient abuse. This disease left untreated and flaring HURTS, and can cause more damage then a few months of prednisone can.

I’m so on top of my health too. I keep my weight in check, check my blood pressure daily, and blood sugar. Everything is always great and in normal range. I check all these things daily to make sure the prednisone is not negatively affecting those things.

Hopefully the insurance won’t take long to approve the Humira, and I’ll be back on the road to remission and off the prednisone soon. I don’t like being on it, but I also don’t like having to beg for something that I quite literally can’t go without right now in the short term

Diagnosed with Crohn’s in 2017. I have been through all of the biologics as well as Azathioprine. Humira, Entivyo, Cimzia, Remicade, Stelara, Rinvoq, Tremfya. They all worked for about a year EXCEPT Stelara and Rinvoq, they never worked.

Recently Tremfya stopped working after a year of remission. I’m back on 40mg prednisone daily (it’s the only thing that keeps me out of the hospital). My gastro is saying that for now, the only thing we can do is circle back to some of these biologics that I first tried 8 years ago that initially worked for me. I do still have Omvoh and Skyrizi that I haven’t taken but he thinks because they are in the same drug class as Tremfya that I won’t respond. I want to push back on that notion BECAUSE I was on Humira, it worked then I lost response ( blood test ruled out antibodies, it just stopped working) then I went on both Remicade and Cimzia which are all 3 TNF blockers and all 3 worked for about a year each and gave me steroid free remission, so I feel like just because another drug is in the same class doesn’t mean it won’t work.

Has anyone ever cycled back to a biologic that USED to work, or maybe even one that didn’t work the first time but worked the second time. At this point that’s all I have left.

Been on Tremfya for almost a year along with mercaptopurine. About a month ago entered a nasty flare that needed prednisone. Went to my gastro appointment last week. He gave me an extra Tremfya pen to take home with me. He instructed me to take the dose he gave me, along with the one I just took today. So I just took 2 Tremfya pens today to try and regain remission. Basically a double dose. Will let ya’ll know how it goes.

I have been doing so good lately friends

Been on Tremfya with 6MP for around 10 months now…..

More importantly, steroid free for 10 months

Well now I’m starting to have symptoms. Usually I always have some type of symptoms even in remission, but they go away. This time it’s stuck around for 2 weeks now.

I’m trying hard not to start back on prednisone. I can’t push it to far though because last time I decided I wouldn’t take prednisone and I would just “tuff it out” I ended up with a bowel obstruction and they had to pump me full of IV prednisone to get it to pass.

I’m just down in the dumps about probably staring prednisone back. I have been dieting, I got down to 180lbs from 220lbs, I’m don’t look fat anymore, but I know when I start the prednisone back I’ll be fat again. It’s depressing but I know I’ll have no choice

Also, why do therapies only last me a year. I get about 1 year, and thing everything just falls apart. Sorry ya’ll I’m just venting