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Was told I shouldn't take Xeljanz bc of high cholesterol

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Posted 6/10/2021 4:04 PM (GMT -6)
Xeljanz can raise your cholesterol so they get a baseline before you start. I found out mine is sky high, which shocks me. I'm a pretty healthy vegan, and I exercise a lot when I'm not flaring. Anyway, I saw an IBD specialist today from UChicago Med and he said I shouldn't take the Xeljanz because of this. He said I can try the brand new Zeposia that scares the crap out of me.... My local GI said I could still take Xeljanz but he has messed up so many times that I trust nothing he says really.

Anyone else run into this issue?
Posted 6/10/2021 4:34 PM (GMT -6)
Cholesterol readings can be tricky. You can have a high total cholesterol with your "bad" cholesterol in normal ranges and your "good" cholesterol high. People who exercise a lot can have this issue. Had a discussion with my PCP about this one time and he said that as long as the bad cholesterol wasn't high he didn't worry about it.

Do you know what your readings are?
Posted 6/10/2021 5:26 PM (GMT -6)
I was wondering about this and Googled it some earlier today. I saw something about the HDL ratio? I'm meeting with my family doctor tomorrow for another issue and plan to discuss this with her. My HDL was good at 74; LDL is 147; triglycerides are 520; and cholesterol is 319. I don't exercise as much as I used to because I've been sick a lot and just struggled to get back into it, but I got a treadmill (which comes in handy when you need to be close to the bathroom!) and was finally getting back into walking 3-6 miles most days of the week, with a 9 mile hike on the weekends at times until my foot starting hurting again a couple weeks ago (I'm hoping it's not another stress fracture but resting just in case). Maybe I just need to eat less vegan junk food, lol. I read that they now think saturated fat can raise cholesterol levels. I eat pretty healthy but do eat some junk.

Thanks for the response. I hope I am freaked out over nothing.
Posted 6/10/2021 8:56 PM (GMT -6)
I can't remember the ranges but I think your HDL & LDL look ok. Triglycerides look high I think. That's related to sugar. Are your glucose levels high? Not unusual to have high sugar levels when on steroids, but they will return to normal when you stop taking it.
Posted 6/10/2021 9:19 PM (GMT -6)
Thanks. I think my glucose was actually normal. I was only on 10 mg when I got this blood drawn. I did eat a ton of desserts the week though. Lol. I don't know if that would matter? I don't know much about this.
Posted 6/11/2021 6:03 AM (GMT -6)
Pred can raise both your LDL and your glucose/triglycerides. We’re you taking it when you had your cholesterol checked? My PCP is wanted me to wait until I was off pred for 6 months before my last cholesterol screening.
Posted 6/11/2021 7:31 AM (GMT -6)
I was on 10 mg. I asked the Chicago IBD specialist about that and he said pred can raise it a little, but he didn't think that high of numbers would be from pred. I had to cancel my appointment this morning with my PCP because I was too sick to drive 40 minutes there, so I sent her a message asking if she could review my results and give me her thoughts. Thanks for the info. I've been on some form of steroid for years (Uceris for a long time), so that would be great if it was just that.
Posted 6/11/2021 10:05 AM (GMT -6)
High cholesterol can be genetic and sometimes unrelated to your diet I’ve found. I was alway slim and ate a much healthier diet and exercised more than my husband but yet my numbers where much higher than his. I tried to not take medication for it but couldn’t get the numbers down any other way.
Posted 6/11/2021 10:25 AM (GMT -6)
Thank you. Yeah, that could be the case. Both my mom and dad take meds for it, but they don't eat very well or exercise much, so I always blamed it on that, ha. Just an extra bummer I found out right before I was about to start Xeljanz.
Posted 6/11/2021 11:01 AM (GMT -6)
Update: My family doctor just reviewed my results. She wants me to repeat the test fasting. She said carbs can raise triglycerides, and I do eat a lot of carbs, I guess. She said we could also talk about me going on statins... I hope my body decelerates falling apart sometime soon...
Posted 6/12/2021 8:58 AM (GMT -6)
Did my fasting lipids test this morning. My triglycerides were WAY lower fasting. The LDL was worse but HDL slightly better. Triglycerides went down from 520 to 76! LDL went up to 195, HDL up from 74 to 90. Total 297. Oh, and I'm on 40 mg pred this time. I was only on 10 last time. Not sure if that makes a big difference. I want to be able to take Xeljanz and not this brand new Zeposia.
Posted 6/13/2021 9:07 AM (GMT -6)
I would agree that Xeljanz is preferable to Zeposia. Just way more real time knowledge on Xeljanz compared to Zeposia. Also I think it is a better drug for people that are refractive to most therapies. Did the Chicago doctor have any experience with Zeposia with his patients yet?
Posted 6/13/2021 9:24 AM (GMT -6)
No, I don't think he does. I sent him a bunch of questions on Friday but he probably has to research them since it's so new, lol.

Do you know anyone on Xeljanz who had high cholesterol when they started? Thanks.
Posted 6/13/2021 10:03 AM (GMT -6)
No I don’t but honestly Xeljanz is so effective for refractive UC I honestly can’t believe he would recommend Zeposia first. Was it Rubin? I would ask him directly if he has utilized Zeposia with any patients yet.
Posted 6/13/2021 10:58 AM (GMT -6)
No. Rubin had a little longer wait time, so I went with whomever could see me first. It's one of his colleagues. Another IBD specialist there. I'll ask. Thank you.
Posted 6/14/2021 6:03 AM (GMT -6)
He said he has 5 patients on it for 6 months in the trial. That's it. He said he personally believes it's safer than Xeljanz. How? He said I can take Xeljanz if I want to take statins. What will happen? Will I get a stroke? I dont want to die. The decision is paralyzing me. I do not have a clue what to do...one of these drugs or surgery.

Post Edited (Sara14) : 6/15/2021 7:26:56 AM (GMT-6)

Posted 6/14/2021 7:44 AM (GMT -6)
Did he say how his patients did on the Zeposia? Always interesting to see how it is working in real world versus trials. My view is for sure go with Xeljanz. It has a really good profile with people that have prior biologic experience. Zeposia is just too new and you can always save it for your last resort. Monitor your cholesterol for now.
Posted 6/14/2021 7:46 AM (GMT -6)
No, he didn't say. I don't want to take any of this poison. This is a miserable existence, jumping from one horrible medication to another, spending YEARS now just seeing if one of these biologics will work, and meanwhile, steroids destroying my bones while I wait. The GI said Xeljanz typically raises cholesterol by 30 points. I'm already in the "very high" category. I can't die because no one would be able to take care of my cat (she attacks everyone but me)...I am being serious.
Posted 6/14/2021 1:40 PM (GMT -6)
Is there a reason you don’t want to take statins for the high cholesterol?
Posted 6/14/2021 2:17 PM (GMT -6)
I don't know. The GI just said he recommended Zeposia, so I guess I thought maybe that wasn't the best option but I have no idea. I take so many pills already. My family doctor just said if Xeljanz is my last option, then we can talk about statins so she didn't seem eager for me to take them either? Do people in their 30s generally take statins?

Are statins not bad? I am a little overwhelmed and depressed and don't know how to make these decisions at this point.
Posted 6/14/2021 4:37 PM (GMT -6)
Sara14 I get how depressing it is. I know that it feels very lonely. I think that your best chance for remission is xeljanz. It works amazingly well and fast. Statins aren’t that bad and you could stop them down the road. Remission is really good. Believe me now that I am flaring I remember how good it was 90 days ago.
Posted 6/14/2021 6:54 PM (GMT -6)
Thanks. Btw, I asked him how his Zeposia patients did and he said they did well but that he doesn't know who got the drug and who got placebo. He told me he thought it would have about a 50% chance of working but that obviously the data is still very limited. I hope the Stelara works for you.
Posted 6/14/2021 9:01 PM (GMT -6)
50% sounds good to me. I still say stick with xeljanz and you can have a medication in your back pocket if you need it. I guess you could start with the Zeposia. You would be the first on this site to try it with FDA approval!!
Posted 6/14/2021 10:11 PM (GMT -6)
I decided to try the Xeljanz. I already have the pre-approval and the script filled. Just waiting to hear back from PCP about if she is going to have me take statins.

Thanks for your help with my decision. I really appreciate it. I was freaking out trying to decide.

As exciting as that sounds, I don't know that I want to be the very first for Zeposia!!! Lol. I agree that 50 percent sounds good.
Posted 6/15/2021 1:40 PM (GMT -6)
I'm having major anxiety about Xeljanz. I just took a breath in and had left-side chest pain. I've only taken one pill so far, about 6 hours ago. Is this just anxiety? I hate to keep bothering my new GI. I've been messaging him a lot of questions the past few days.
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