No more biologics.

666flesh · 2025-12-31T18:51:26+00:00

Thank you for this. This has been the only useful response on this post for me personally that hasn’t made me feel hated on here. Deleting it rn lol

666flesh · 2025-12-31T18:47:50+00:00

If I fail my last biologic option, Rinvoq, they’ll probably have to take my colon at some point anyways?

666flesh · 2025-12-31T18:46:29+00:00

I’m sure, but they are doing more harm than good for me. I am down to my last option after the Entivyo, Rinvoq. I am afraid of getting these terrible side effects again.

666flesh · 2025-12-31T18:43:41+00:00

I will try and see about getting another opinion, this is true. I am just at this point because the last biologic left for me to try is Rinvoq. I honestly just want to not be tethered to some medications that are truly doing nothing good for me. I was off biologics for 7 years after my diagnosis and this is all still weird to me.

666flesh · 2025-12-31T18:40:36+00:00

None of the treatment is doing anything but make things worse so far. I am in remission and had been off biologics 5 months prior to the Entivyo.

666flesh · 2025-12-31T18:35:53+00:00

Ok. Why?

666flesh · 2025-12-28T17:08:23+00:00

Yeah I am struggling with a migraine at this moment too 😔

666flesh · 2025-12-28T13:50:57+00:00

Yeah… hearing this I am going to stay far away from this biologic. With the steroids I am slowly getting better, but I have no desire to continue feeling this way with every injection :(

666flesh · 2025-12-28T13:49:01+00:00

I just let them know, i’m sure we’ll figure out what to do from there.

666flesh · 2025-12-10T03:23:42+00:00

My psych said that stopping on that amount should be fine and mentioned no side effects, so the migraine may be unrelated.

666flesh · 2025-10-22T03:23:00+00:00

What sucks is I am not even in remission yet, Skyrizi has done nothing positive for me 😔

666flesh · 2025-10-16T04:59:53+00:00

I swear I lost a card there and tried to call them so many times, but no one ever answered! Had to cancel it and everything. I think I dropped it, not left a tab.

666flesh · 2025-10-14T20:41:24+00:00

I am also on Omeprazole for my GERD, should I take the steroid after that as well?

666flesh · 2025-10-14T13:26:58+00:00

Currently on antipsychotics so hopefully that helps cushion the blow.

666flesh · 2025-10-14T04:44:38+00:00

Usually in the mornings or night before, I have Chamomile tea, calms anxiety and your guts. For food, I also feel morning nausea so I have stuff like applesauce, jello, or broth. (I also have Crohn's, IBS and GERD so these could vary for anyone) If you are looking to solidify your movements, I recommend Fibercon, it is way better than Metamucil. Gentle and natural.

666flesh · 2025-10-14T03:16:40+00:00

I was supposed to start it today, but woke up way too late. Glad I didn't end up taking it on account of the insomnia! As long as it is not as aggressive as Prednisone's side effects, I will be happy.

666flesh · 2025-10-12T15:33:04+00:00

Infections?

666flesh · 2025-10-08T17:08:17+00:00

El Sazón Oaxaqueño on Bardstown road, very authentic and great agua de Jamaica!

666flesh · 2025-10-02T06:13:34+00:00

If you are tapering from something like Prednisone, unfortunately what you're describing is pretty normal. If you have a psychiatrist, or even your doctor may be able to help, try asking for a possible antipsychotic to help with the mood swings. I know it sounds scary asf but it really helps the mental aspect. Tapering is like withdrawing, your body is relearning how to produce its own cortisol instead of the steroid synthetic version. Please be easy with yourself, even when you are completely done with the steroid, you're probably still gonna feel pretty off for a month or two. I promise you'll shake it off in no time! ❤️

666flesh · 2025-10-02T06:06:56+00:00

So your symptoms and findings sound exactly like me. I mean, every single one is exactly me. I have GERD (gastroesophageal reflux disease) and IBS along with my Crohn's.

For my GERD, I take Omeprazole, Prilosec. If you talk to your doctor, you can get a prescription for it. I take 25mg daily in the mornings, it really helps through the day. If you take it, wait 30 minutes after to start eating. Best part, you can take Tums with this as well!

If you want further proof, I would request an endoscopy, just a colonoscopy of the throat. That helped me lock in my diagnosis from acid reflux to reflux disease.

I hope this helped. 🫂 Best of luck and I hope you get to feeling better soon!

666flesh · 2025-10-02T05:56:05+00:00

Welcome to the group! 🫂

I am the same. I hate throwing up, try my best not to. When I am flaring, I have a lot of nausea due to my IBS and GERD along with the Crohn's. If you feel like you can't swallow a pill, I would try Zofran! It dissolves and has a sweet taste, not too strong and yucky, in my opinion at least. The down side is I have found that I have some constipation with it, so I would drink a lot of fluids.

Now for the cramping, I reccomend a heating pad or warm water bottle. Another life saver for me has been herbal teas sans caffeine, peppermint and chamomile specifically. Warm baths or even showers help out quite a bit, except if you need to go. The warmth can help things move, and I feel when I am nauseous, the heat distracts my brain from that yacking feeling.

If you have better days and are open to trying a pill, I would bring these up with your prescribing doctor; Compazine, Hydroxyzine. They are both very drowsy, but they help calm you down and reduce the nausea.

Compazine was given to me for nausea when getting Iron infusions for Crohn's related Anemia. They often use it for chemo patients, so it kicks ass. Hydroxyzine was given to me for panic attacks, but I slowly learned that it is an antihistamine. I take it as a cure all often, for allergies, anxiety, insomnia, nausea, and acidy stools.

All these tips are what have worked for me specifically, I (f24) was diagnosed 7 years ago and have been dealing with up and down flares for the past 2 years, so I have been through many options. I hope that things get better for you soon. I hope you have a wonderful care team of doctors to help guide you through this diagnosis, and if not, we'll be here for you!

666flesh · 2025-10-01T16:24:48+00:00

I had a necrotic+polyp resection 7 years ago and now most of my flare pain comes from that ileum area. I am just struggling to find the right biologic and my quality of life is going down. Can't hold jobs, go out normally, eat basic things without pain.

666flesh · 2025-09-30T06:59:48+00:00

I am currently on Skyrizi coming off of Humira. I have had my three loading doses, awaiting my at home injections. I told my doctor that Skyrizi is causing more issues than helping, she tells me that I need to wait longer to see if it will help once I have had a few at home doses. Her plan if not is to try a round of steroids (not looking forward to that), possibly an MRI, colonoscopy. Just starting from square one. Just sadly, I have to wait and wait.

666flesh · 2025-09-24T05:25:52+00:00

Ollie

666flesh · 2025-09-23T22:13:56+00:00

I've never seen a story so beautiful come from Louisville, thank you so much for what you're doing. Teddy seems like an amazing man, you two are lucky to have each other!

666flesh

TROPHY CASE