Rinvoq to Zeposia?

Oh guys. I need your thoughts. I saw my actual GI yesterday and he feels that I need to switch to Zeposia due to my lipid panel being so high on 15 mg of Rinvoq. He said it is supposed to normalize being on the small dose and mine is still too high for what he is comfortable with seeing. He said I have two months to research Zeposia and decide what to do but he is checking my lipids again in April. He said adding Repatha injections is an option but he would prefer to not go that route since we have “so many more options now for treating UC.” If you were me, what would you do? I honestly didn’t think he cared about the cholesterol stuff since the Rinvoq manufacturer does not care at all. He just said I am too young to have such high numbers and he does not want to regret prescribing it to me 10 years down the line. I have never cared about the future since I have already almost died so many times so I am fine living in the present and living with the risks. Granted, my remission isn’t great at all on Rinvoq and my family and partner all think I should switch while I am in clinical remission. The thought of switching drugs while not flaring terrifies me though. Need your help guys!!

What about a dietitian consult RE lipids? I remember your mentioning difficulties with food choices because you're already limited in items that your gut tolerates-- so my thought would be to reduce dietary cholesterol (if possible) from your tolerable food choices. I can understand your anxiety over GI's recommendation to switch UC med now. He's at least giving you a couple months to mull things over while still on Rinvoq so you may have a chance to investigate/test diet modification. Hang in there and try not to panic. Reducing lipids is considered a worthy goal for most adults these days, whether ailing or healthy. That's why we keep getting bombarded with physicians' public praise for the so-called "mediterranean diet". / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)

Did you try taking a statin drug to lower your cholesterol?

FG not yet. My GI wants to wait on that. He doesn’t seem like he is leaning that way. That’s why I was on here. I don’t think I have seen anyone on Zeposia.

SG thanks for looking that up! So do you think prednisone is added or would I just switch over? I have never switched drugs in remission. Triglycerides were high at the one month mark on Rinvoq (186) but they are 46 now. I was also on prednisone though back when they were taken so my glucose levels were high, too.

Nothing to add,but good luck Bananagirl.

oldmike

Oh no BG... I am so sorry to read this. I have no practical advice, but am sending virtual hugs. Hope your partner's surgery goes smoothly. Please don't beat yourself up for not being able to go with him. It's not your fault.

Thanks Serenity! I teared up reading that. I just hate feeling so useless. I keep trying to think what changed. My two pets passed away last month and my mom got a scary ultrasound finding- 6 cm mass on her bladder. I cried most of February. My uncle just died last week and more emotions from that came flooding in. Can prolonged grief cause flaring? Ive honestly always been a stressed out person and have never correlated that to flaring. I never know what induces my flares.

Quincy- Sean’s parents are more than happy to do anything for him! He is the baby of the family. We are lucky to both have helpful parents. I am allergic to mesalamine sadly and my current GI will not prescribe me rectal steroids. I think because my disease has never responded to oral steroids either. I know I took cortifoam in the early days but dont remember it working. I begged him last year for rectal steroids while on entocort and he said no. Ended up on iv steroids. I tend to snowball fast and there isnt much time for oral pills to work. I dont think any of my flares have been treated outside of the hospital honestly but not without trying on my end. Hoping to just get zeposia started on the loading dose soon. I see my GI wed at 10 so will update after what is decided. They might just order a bunch of labs and more stool tests for now. I always hate the weeks of insurance approval/denial!

Bacon!! I hate reading that you aren't doing well. I can honestly tell you that stress has always caused me to flare. My UC began when I lost both parents within 3 months of each other. I know you feel terrible about not being able to be with your partner; nothing like having a bit of guilt thrown in with the other stress. Just know, and I'm quite sure your partner knows as well...this isn't a CHOICE we make. Just be there for him when he comes home. Best only to you!!

BG...my deepest condolences...so sad to hear you've had such tremendous losses in such a short time. Yes, I do believe prolonged deep emotions and grief will definitely tip a delicate autoimmune condition into and exacerbate flaring. There's no ability for mental, emotional or physical recovery, in my perspective. It's frustrating to hear your GI put you on Entocort but wont OK steroid rectals. Hopefully, your appt tomorrow will be in your favour for Zeposia.

Let us know how Sean is doing...
Hugs,
q

BACONG....how goes it???? I do hope things have 'leveled out' a bit. Let us know!! Hope you are feeling better.

Hey guys. Hope everyone had a good Easter! Belly is still not great but not horrible either. I’ve had worse. The 30 mg increase made no difference after several weeks so I am back on the 15 mg since there was no point in going up if it wasn’t decreasing symptoms. Still no idea what the diarrhea and nonstop gurgling is from! I may try a strict elimination diet (for the 1000th time) since stool tests are fine and inflammation markers are so low. This is a never-ending game!! So weird how this disease continues to change year after year and same with food intolerances/allergies.

Hang in there, Bacon Girl. You just had additional stress over Sean's condition so that could affect your colon. It sounds good if your inflammation markers test low. Do try the elimination diet on known irritants and add a plain brown rice cake (such as Lundberg organic) with your main meal to gauge whether that would firm up bm. If you haven't tried Lundberg brand yet, it requires thorough chewing, which I find beneficial to the gut. Drink 8 oz. plain water afterward, within an hour of your meal-- take your time. You could also dissolve a Lundberg in chicken broth if that's a calming liquid for you. Some large groceries will stock Lundberg brand, otherwise you may find them in a health-only food shop. They are supposed to be made from pesticide-free rice. Good that you're updating us! / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)

Bacon Girl said...
Mom2, I am only switching if the heart doctor thinks I should. I see him April 15. If it is working well for my UC inflammation, I will stay on it since low inflammation is always my UC goal. My fecal calprotectin is 8 and last year at this time it was over 1000.

OH, I actually decided to play around with this supplement and think it has helped. I was googling diarrhea help from unknown infection/source and found black cumin seed oil. I just started it but already my diarrhea has lessened like 90%. Just 1000 mg a day. I read studies that it helps diarrhea and sibo and figured I would order a bottle. I do enjoy Lundberg rice cakes on occasion but usually get the Aldi’s brand since they are so cheap. They are definitely fluffier and less hearty though. I love them with peanut butter! I also stopped drinking kefir a few days ago and that may have been a trigger. I started adding it in February and think I just don’t tolerate it anymore. I used to drink it for many years and just assumed it was ok again. It’s hard to know. The SIBO is out of control right now and that may also be a contributor.

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SIBO is really easy to test for if you have a couple of hours of breath into a bag.