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Rinvoq causing very high lipid numbers

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Ulcerative Colitis
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Posted 8/25/2023 8:20 PM (GMT -5)
Bacon Girl,

Yes, Rinvoq does raise your lipids. My GI warned me of this before starting. However, my general doctor put me in 5 mg. of Crestor (that's the lowest possible dose) and my lipids went back to normal. So, there is hope. Again, this was discovered in the Rinvoq trials, and the suggestion was to put the patients on a statin if cholesterol did not normalize after a period of taking Rinvoq.

Given the remission that I have with this medicine, there is no way I would stop taking Rinvoq. Your PCP saying you should stop it immediately gave you terrible advise. Consult with your GI and see if you can get on a very small dose of statin (likely the best meds for cholesterol), maybe start with 5 mg., and then see.

Hope this is helpful.
Posted 8/26/2023 9:24 AM (GMT -5)
Barnsbury- wow your situation is similar to mine! I am sorry about the pain you have dealt with. Were you in drug trial for rinvoq? I didnt know it was out so long ago. Changing drugs when you feel well is an impossible decision, especially if your UC is destroying your entire life. Let me know what happens if you need to go on Stelara. My doctor called and said are dropping me to 15 to see what happens. I hope it is enough to control my UC. He did the same assessment with risk factors for me.

Clo, there is no way I am doing that haha I would be miserable and already hate just the regular fast. Your doctor is hardcore!
Posted 8/26/2023 9:28 AM (GMT -5)
Tonito, yeah it did happen in the trials. The rinvoq manufacturers came to the hospital this week to discuss a few cases of this with the GI team. They said my case isn’t too bad and to just monitor my levels. I am going down to 15 when those pills arrive. I agree that my PCP was just overreacting and doesn't realize you cant just stop a UC med without a plan. I think I need a better PCP honestly. She is sweet but has zero knowledge of my disease at all.
Posted 10/11/2023 9:20 AM (GMT -5)

Bacon Girl said...
Barnsbury- wow your situation is similar to mine! I am sorry about the pain you have dealt with. Were you in drug trial for rinvoq? I didnt know it was out so long ago. Changing drugs when you feel well is an impossible decision, especially if your UC is destroying your entire life. Let me know what happens if you need to go on Stelara. My doctor called and said are dropping me to 15 to see what happens. I hope it is enough to control my UC. He did the same assessment with risk factors for me.

Clo, there is no way I am doing that haha I would be miserable and already hate just the regular fast. Your doctor is hardcore!

Hi, sorry for the late reply. I dont get emails notifying me of replies, even though I should be!

Yes, I was on the Rinvoq clinical trial. I was the first patient in the UK to be enrolled. Which is why I have been on it for such a long time. I had my surgery and fingers crossed the lesions are healing. However, I have had enough and I made the decision myself to come off Rinvoq. In around 10 days I will stop taking it. And on 27 October I will start on Stelara. It is very scary but I think it is the right decision for me.
Posted 10/12/2023 1:21 PM (GMT -5)
Barnsbury

I hope the change to Stelara is a good one and your HPV heals. When the drug is causing such issues then it’s worth trying something else. I have been doing 30/15 mg alternating every day for a month (so Mon 30, Tues 15…) and my yeast infection down below had cleared up and my cholesterol has dropped 45 points already. I am supposed to drop to 15 mg now but am scared so now I am doing 15, 15, 30. My inflammation markers are still normal but I am doing this with a lot of caution. I am just so scared to be on 15 only since my UC is so bad. I figure lowering gradually is safer since I am so sensitive to dose changes.
Posted 10/26/2023 12:34 PM (GMT -5)
Hi Bacongirl - How are things? Are you now settled at 15mg? Hope all is ok.

I have been off Rinboq for 3 days now. All thats happened so far, is itchy skin on my face and my back. I had to take antihistamine to allow me to sleep.

I am in hospital tmw for the initial infusion of Stelera. I really hope I stay in remission.
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