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Stelara or something else

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Ulcerative Colitis
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Posted 2/8/2023 9:52 AM (GMT -8)
Hello All,

I'm fairly new to this board. I'm still trying to decide if I should take the Stelara that has been offered/approved for me. The GI suggested Stelara due to less side effects she said. My hesitation started more so when the rheumatologist questioned Stelara because I've had other issues (uveitis, joint pain, skin issues). So now I'm just so unsure about what to do. I saw a list (on this site) where my GI doctor received a lot of office meals and she received more from Stelara than any other. So, of course, that made me question the suggestion even more. I also have migraines at times and the pain is sometimes only resolved with a few days of predisone (even prior to getting the RX for the joint pain...urgent care would give me an injection or pills). I don't know if that means anything as far as Stelara and potential side effects or not. It's just so confusing for me right now.

Post Edited (RS2022) : 2/8/2023 10:44:03 AM (GMT-8)

Posted 2/8/2023 10:30 AM (GMT -8)
Back years ago some drs got kickbacks in all fields, but now a people can check to see who provides lunches for a drs office & how much each lunch costs. My pcp's office use to get lunches dropped off by pharmaceutical reps, after the big crack down that all ended. Back in the 90's I remember reading about drs losing their licenses. It's all on public record now & it is monitored.

You have said from the beginning you were on the fence about starting Stelara. Since you don't have much trust in this dr why not find yourself another gi? Regardless of what condition a person has they need to have some trust in the dr.

In January you said that you were on your 9th week of prednisone. Getting off of prednisone would be my goal as it comes with it's own negative drawbacks.
Posted 2/8/2023 10:45 AM (GMT -8)
Thanks! Yes I'm weaning down to 5 mg now. I've gained over 13 lbs and I'm thinking my glucose could be higher. So I should be off in a few days. The only my thing is the elbow pain is back. sad

Post Edited (RS2022) : 2/8/2023 10:48:34 AM (GMT-8)

Posted 2/8/2023 3:21 PM (GMT -8)
Has anyone experienced major stomach cramps when weaning down on prednisone? I experienced really bad cramping and nausea today, but I'm not sick. Just major cramping all around the stomach and even my back. I'm on a new job and with that comes a lot of extra stress to learn quickly and I'm wondering if that may be contributing. I've do have excess intestinal gas sometimes that causes cramping. It's just this seemed to coincide with me weaning off of predisone.

As for the Stelara I really was sold on trying it but then I think I let a relative get in my head by saying they knew someone who had a very bad reaction from it and now I have to calm myself. I know that I need something to help with these symptoms to help me to have a more normal life. I just interviewed for a much better job and it's not remote and if I get it, I would have to turn it down with the symptoms I currently have.
Posted 2/9/2023 4:54 AM (GMT -8)
I got the Stelara infusion on 1/17/23. I have seen some improvement.

But I just wanted to chime in to maybe encourage you. I have had zero side effects.
Posted 2/9/2023 5:49 AM (GMT -8)
Thanks for the encouragement. I greatly appreciate it! I'm just going to pray about it and get it, I do believe. I'm scheduled to go to an infusion center instead of a hospital. So, I guess if I have questions I should call them before my scheduled appointment. I sure pray for improvement. This nausea and stomach pain just came on suddenly. Maybe it's because I'm tapering the prednisone or even constipation. I've had both issues before but not normally. I'm going to try Mylanta to see if it helps. We'll, I pray that you continue to improve.
Posted 2/18/2023 12:03 PM (GMT -8)
Have you tried Xeljanz? Stelara did nothing for me (no side effects thought other than a skin rash that was easily treated).
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