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Crohn's Disease
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Posted 12/28/2023 7:57 PM (GMT 0)
Hey guys,

Just wanted to vent. Feeling a bit hopeless. Been on every Crohn’s medication. Did Remicade in 2003. Worked amazingly then lost response to it. Gave humira a try, didn’t work. Stelara worked amazingly like I didn’t even have Crohn’s anymore. Then I had the Covid vaccine and went into a massive flare and then lost response to that as well. Tried Skyrizi for six months no improvement. Now I’m on Rinvoq, which seems to be working decently, but at 45 MG it was making my liver numbers very high. Once I cut down to the 30 mg the response wasn’t as good and now my cholesterol jumped by 50 points in two weeks. I’m active, run a 8 miles a week, and lift six times a week. I suppose I’m afraid why my next steps are I have to stop the Rinvoq.

Sorry guys, just wanted to vent. Hope everyone is having an amazing holiday season and a wonderful 2024. May you and your families have a year filled with happiness, health, and success.
Posted 12/28/2023 8:44 PM (GMT 0)
Vent away! Think most of us have at one time or another. When you were on the humira, how many were you injecting? I did one a week for years, then my blood levels were starting to be just below the target level so I went to two per week. Did that for a couple years. I'm now back at one and my serum levels are staying in the range its supposed to..
Posted 12/29/2023 4:07 AM (GMT 0)
I'm so sorry that you are going through this. It's difficult when your meds don't work the way you want them to.

Vent away. There have been many times when I've done the same.
Posted 12/29/2023 5:15 PM (GMT 0)
Vent as you wish. We all can relate and understand. I too failed in a year Remicade and Stelara and started Rinvoq 5 months ago. Though I do have this persistent pain in the terminal ileum that increases an hour after I eat, I had a colonoscopy yesterday and my GI was very happy and told me my colon looks good. I told him but this nasty pain really interferes with my daily activities and he had no explanation and all he could do was to add an antispasmodic to the ones I already take. We have to wait for more than 2 weeks until the pathology results are out.
My cholesterol levels also got elevated on Rinvoq but I couldn’t tolerate the statin I was taking. Was advised to wait until I go down to 30 mg and test my cholesterol levels again. I intend to do this soon.
I was also Ok but not didn’t feel any improvement on Rinvoq 45 mg. When I went down to 30 mg, I asked my GI to up the dose again to 45 mg but he mentioned that the approved dose was 30 mg for maintenance and that no insurance company would grant me the 45 mg again.
Posted 1/14/2024 9:07 PM (GMT 0)
My cholesterol was fine on the Rinvoq, but now it jumped up by 50 points to 230 and LDL to 150ish. In two weeks! That was after I lowered the dose as well. It's so frustrating. I really hate this disease.
Posted 1/16/2024 11:17 AM (GMT 0)

isaachadzovic said...
My cholesterol was fine on the Rinvoq, but now it jumped up by 50 points to 230 and LDL to 150ish. In two weeks! That was after I lowered the dose as well. It's so frustrating. I really hate this disease.

Has your Dr. suggested statins at this point? Most of us don't want to just add medications, but statins are pretty well tolerated.
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