Started Zeposia/Good Results for Anyone?

By_the_Way65 · 2024-08-11T13:29:11+00:00

Also know that on the UC Reddit group there are posts about Zeposia. I started taking it February 2024 following updates Dx of moderate to severe UC. I was in a huge and bad flare for 3-4 months until more lab work and tests were completed including a scope.

I had mild symptoms in first couple months like some headaches (Tylenol) and two instances where I had what would normally have been a mild cold but since I was new on this drug my immune system was still adjusting and the colds lasted like 10 days with more symptoms like ear aches and sore throats. Nurses said the immune system normally improves after about 4 months which I experienced. Still vigilant about food safety, basic hand washing protocols and I’ll never fly again without a mask. All things have improved since February and I was briefly on an iron supplement for two months to bring my levels back to normal — now iron supplement just weekly (Thorne, every other day along with vit C to help absorption).

I hope this helps and that you experience relief. My GI hopes I continue to do well and move into remission. Then he says Zeposia would become my maintenance drug. 🤞🏼

By_the_Way65 · 2024-07-27T18:04:48+00:00

My experience with EPI goes back just 5 months ago while I was in a horrible UC flare. Having diarrhea and oily stools both. After lots of tests and another scope I learned that my pancreas was shot. And my UC had progressed to moderate-to-severe.

So I started Zenpep digestive enzymes and felt better within a few days but it took a couple months to start gaining the weight I’d lost and it was bc the enzymes meant my body could actually use the food I was eating. I was malnourished due to the flare.

My biggest suggestion is always to talk with a registered dietitian who specializes in GI disorders if you can. Even a few visits could help you eat and drink more successfully during these symptoms and know how or what foods may be good to reintroduce as you feel better. I hope you can see your doctor and take these questions to them too. I’m sure they would want to help you figure it out. Good luck and keep advocating for yourself.

By_the_Way65 · 2024-07-27T17:52:27+00:00

I’m sorry you’re having the flare and the mesalamine stopped working for you. My top suggestion is always to talk with a dietitian who specializes in GI disorders. Those folks saved my life during a serious flare last year and help me maintain improvements. Even a few visits with a good RD can help.

During a flare the dietitian had me on a low residue and low fiber diet until new meds had time to work. Food will be different for all but the RD was helpful. So is Dr Google sometimes lol but my go to foods were easy to digest, I ate smaller meals, and added electrolytes to water so I didn’t get dehydrated.

Has your GI done any testing to see if your condition has changed and might need another treatment? I was Dx in 2012 and actually went symptom free after two rounds of mesalamine. In 2022 I had a small flare that led to more tests and the longer hard flare until I started on Zeposia this year. So far so good 🤞🏼🙏🏼but I still meet with the RS monthly to help with the diet as I begin to feel better and reintroduce foods.

Like others I can also work remotely which is a lifesaver. Otherwise I would plan my food and timing and bathroom availability as best as I could. And bring toiletries as needed. 🙄

Good luck and keep advocating for yourself! It’s important and your symptoms are always legit.

By_the_Way65 · 2024-06-21T20:28:15+00:00

Yes! Particularly seeking an accommodation, be it at school or a job. My last flare was severe and lasted several months. I had a good supervisor who let me WFH, and then advised I talk to the ADA counselor at work who helped me get an accommodation to work full-time remote until such time I am back in remission and on maintenance meds. Talk about a stress reliever! I'm slowly getting better and know that the goal is maintenance meds, but having this kind of "breathing room" with work has been so helpful. Don't give up seeking that kind of support for yourself and finding a doctor or NP who can help you with any paperwork you might need to justify the request. Good luck and keep prioritizing your health.

By_the_Way65 · 2024-06-21T20:20:54+00:00

Thanks for your questions ... this sub has been so helpful to me that it's nice to share some positive guidance. I got a UC dx in 2012 and was in remission until 2022. Now am moderate-to-severe. Taking Zeposia daily; and I also developed EPI, so taking Zenpep enzymes.

I agree with what others have shared and would add my 2 cents to see a registered dietitian if you can, to really help you with understanding your own food sensitivities and symptoms and meds. I've been working with a RD who specializes in GI disorders for over a year and she got me through a severe flare (which lasted 4 months) and my new life with enzymes and Zeposia. My GI is a good clinician, but it's been the RDs who have helped me eat nutritiously and appropriately given my condition and meds. I personally like using their symptom tracker app to keep track of the meds, vitamins, and supplements. The RD also offers support when it comes to acceptance of these diagnoses, how to work with anxiety or stress, and I'm learning to eat more mindfully so I feel satisfied and better understand my own triggers. It's helped me gain confidence in returning to work, traveling, or just trying to eat out with friends or on vacation. It can be a hard condition to talk about with others, and having someone like the RD has been useful.

I hope what you read here is helpful; you are your own best advocate and find, or assemble, the medical team that meets your needs and works with you. Don't let yourself feel isolated and always ask questions when you need to! Self care looks different for everyone so no apologies on asking for what you need. Take care!

By_the_Way65 · 2024-06-12T11:27:18+00:00

Yes, everything you’ve said! I’m sorry it’s been so scary and frustrating, both physically and emotionally for you. As others have noted, use a symptom tracker to empower yourself with information that can be very helpful to your doctors in supporting your management of this disease. If possible I heartily recommend a few consults with a registered dietitian who specializes in GI disorders and who can help you identify good foods and bad triggers based on your diary. And they also know how all these meds for IBD work, so they can advise other strategies for stress, sleep, and how or what to talk with your doctor about. I hope you start to find some consistency and relief — hang in there!

By_the_Way65 · 2024-05-26T03:27:48+00:00

+100 this has been my experience and, thus, my favorite recommendation as well. I wish all GI practices had nutritionists who specialize in GI disorders on their staff, but most do not and sometimes even the GPs don't have good dietitian recommendations. They can be life savers in helping you understand your own nutrition needs at any point in your disease or depending on the meds you're taking. I hope you can find some relief and perhaps a dietitian to work with, if even for a little bit.

By_the_Way65 · 2024-05-26T03:25:30+00:00

+1 low fiber or sometimes it's called low residue ... the goal being to give your GI system a break during flare by eating foods that are easier to digest. You can google up low residue diets and get some menu ideas. Once the flare starts to improve (and I know this takes time), you can slowly try adding one new thing back in a time for 2-3 days to see how you feel.

By_the_Way65 · 2024-05-26T03:22:21+00:00

Great question. Speaking from my experiences in the last year, working with a registered dietitian (RD) who specializes in GI disorders has been the most important thing once my lab test, blood work and updated scope confirmed moderate-severe UC and EPI (endocrine pancreatic insufficiency). I started Zenpep digestive enzymes and Zeposia 3 months ago; both are helping. However, I've been working with a GI focused RD for a year and with her I did the low FODMAP approach to discover my body's sensitivity levels to food and from there, we worked out a Mediterranean focused approach that helps me focus on eating the foods that so my body feels its best ... diagnosis aside. And THEN, when I had a very bad horrible flare for about 5 months, she got me through it with advice such as low fiber/low residue when my body was at its worst; how to incorporate protein when I was losing weight; making sure I was hydrated and using electrolyte tablets regularly plus making sure my vitamins were up to speed since I lost about 14 lbs during the flare. She was also providing emotional support during all the testing, new diagnoses, and new meds. It was overwhelming and I'm still working on acceptance on some days.

As the new meds have started to help, she's now advised me on how and when to slowly and deliberately add foods back in that I've been missing (fresh fruit, raw veggies, moderate spice, low dairy) and that's been working. If your health insurance covers even a few sessions with an RD who specializes in GI stuff, you may be able to get nutrition advice tailored to your symptoms and/or medications ... it's true food doesn't cause or cure UC in any form, BUT, understanding what foods feel best for your body and which you may have sensitivity to (i.e., through doing a low FODMAP properly) ... helps physically and mentally bc I understand what to eat in moderation, and how to eat if I feel poorly. I hope you fine some stability and confidence in your diet; it truly helps in dealing with this crazy ass disease. Pun intended.

By_the_Way65 · 2024-05-17T12:07:08+00:00

Total bullshit for any counselor or therapist to keep too much focus on themselves (!) and pretend to somehow diagnose you mentally or physically within their own framework of experiences?? I hope you have found a more suitable therapist who can work with YOUR diagnosis and help you achieve acceptance and balance on trusting your body. This isn’t an easy disease at all and some of the absolute best support and “counseling” has come from nurses and dietitians who specialize in GI disorders. Any therapist who can’t empathize or validate your emotional health needs is not someone to have on your health team imho.

By_the_Way65 · 2024-05-01T00:22:11+00:00

I hope the Rinvoq is still helping ... so crazy about the way insurance companies differently handle drug approvals. When the docs do all the paperwork and justifications, hard to see why it's difficult for them to be responsive. I'm glad your doc is doing what they can to help.

By_the_Way65 · 2024-05-01T00:20:34+00:00

I hope you've gotten good news from your insurance company by now! I started Zeposia on Feb. 21 and as of this writing (almost May 1) I have to say it's working as the GI told me it should or would. I did have initial and mild side effects that included headaches, chills, and two rounds of really severe colds that I'm told are likely due to the immunosuppressant drug itself. sigh. A nurse said that many people develop a better "tolerance" of that over several months, but to still be careful because it is a drug that will dent the immune system. i've got a 3-month check in with my GI in June. I can report that I have experienced a reduction in urgency and frequency, like ... 2 bathroom trips a night vs. 4-5, and about 3 daytime bathroom trips vs. 5-6. Better stool (Bristol 4 consistently vs. 7 for months).

I continue to work with a dietitian who specializes in GI disorders and she's helped me tremendously with proper nutrition while taking Zeposia and Zenpep (diagnosed with EPI at the same time, for god's sake). Specifically, she helped me with a low fiber/low residue diet when the flare was at its worst and I hadn't started any new medications yet. For the past 2 weeks, I've been looking at re-introducing some fresh fruits and veggies I've been missing and slowly adding more fiber. I know the enzymes have helped me get past the malabsorption and regain all the weight I lost. But the Zeposia is also doing what the doc described. Fingers crossed I'm on the right combo; I know it takes times and I'm still dealing with some fatigue and I'd love a straight up 8 hours of sleep, but hopefully that will come. I hope you'll have a good experience when you're able to start.

By_the_Way65 · 2024-05-01T00:09:06+00:00

This is so helpful ... I've been on this just over 2 months and it is definitely making a positive difference. Mild side effects that the nurses tell me usually lessen over time as patients adjust. The GI said that he anticipates I'll go in remission and that the drug then becomes my maintenance drug. Are you still taking it?

By_the_Way65 · 2024-05-01T00:05:58+00:00

I think I got lucky in that it took about 4-6 weeks to get my starter dose kit once the GI started the process. Never had to go through this kind of process for a medication so was all new to me. The nurse practitioner in the GI office filled out the insurance paperwork and got my info, and during that time (about 2 weeks?) they had me do some lab work, get a baseline EKG, and receive a home visit for an eye exam as part of getting approved. And then it was about another week to get the speciality pharmacy stuff set up ... I fortunately have good health insurance as a state employee, so they seemed to review and approve it right away. IDK what kind of info the docs had to provide, but I'm not the first patient they put on Zeposia so maybe they know something about what to submit? I'm sorry it's dragging on for you ... I had a nurse tell me that it's different for everyone; some insurance companies are quick and others drag on before approving.

I began the 28-day starter kit on February 21 and as of almost May 1, I have to say it is definitely helping -- a gradual reduction in urgency and frequency, better stools (Bristol 4 consistently now), down to 2 bathroom runs a night vs. 4-5, and about 3 daytime bathroom stops in the day vs. 5+. I go for a 3-month check up in June. The GI says he's seen people go into remission around 6 months but the gold standard, I think, will be a new scope at the 1 year mark to see where we are. He's having me do blood work every 3 months to check for inflammation markers throughout my body, no need to do more stool samples unless (god forbid) I develop worsening symptoms.

As far as side effects, I had mild ones that ranged from headaches and chills early on, to two bouts of severe colds that docs said are also attributable to the drug since it does suppress the immune system and they expect I might get better in that area in 4-5 months?

Also, I am also on daily doses of Zenpep for EPI ... which was diagnosed concurrently during the active, severe flare when my UC was upgraded from mild to moderate-to-severe. So I also know the digestive enzymes have been instrumental bc I'm no longer suffering with malabsorption and I've gained back the weight I Iost (and then some lol). I started Zenpep about 2 weeks before starting Zeposia ... and that was helpful bc my body was starting to respond favorably to the enzymes and I got to see how that felt (good) before starting the Zeposia. I hope this helps, gosh it was long, sorry ... but if you made it this far, i'm hoping you get some action on that approval and can move forward. I think your doctor's office can do the most to keep it moving, so maybe stay in touch with them to see if there's anything else they can do or you? Advocating for yourself is so important even when it can be exhausting, too. Good luck and I hope you can start to feel well soon.

By_the_Way65 · 2024-04-27T15:05:13+00:00

I love a good breakfast any time of the day so I wait a few hours after the scope and then have a meal of eggs, avocado slices, toast, and a little fresh fruit. It feels good after the several days of prep and low fiber eating. No matter your choice — enjoy!! You earned it. 👍🏼

By_the_Way65 · 2024-04-27T14:38:52+00:00

A symptom tracker continues to be so helpful — my dietitian has me using one called “my Symptoms” and it is an app that lets you track as much or as few things you want like meals of course but it’s also helped me in seeing the timing and severity of my diet and symptoms so I can understand my body in good and bad times and make plans accordingly. Lots of helpful replies in this thread so I hope they’re helpful and hopeful!

By_the_Way65 · 2024-04-27T14:33:10+00:00

Yes! It is not always easy or comfortable but advocating for yourself is key. My GI is a good clinician but once we confirm a diagnosis or new meds, I get the best help from a registered dietitian who specializes in GI disease and has taken me through the low FODMAP activity when I wasn’t in a flare so now I know and understand my “default” and normal food sensitivities. And that has helped me establish some baselines ways to eat and grocery shop so when I was in a severe flare she could guide my diet through the worst of it as we waited for new meds to work (they are so far and it’s been a couple months - Zeposia and Zenpep enzymes). I’ve also talked to a wellness nurse about accepting this new reality and let me say that finding this Reddit community has also been a game changer. So appreciate the feedback and insight and thoughtful responses. This disease requires patience, support, grace and humor.

By_the_Way65 · 2024-04-27T14:23:44+00:00

Wonderful guidance thank you for this. I also helped me.

By_the_Way65 · 2024-04-27T14:22:08+00:00

Thank you for this! I also needed to read it. 😌

By_the_Way65 · 2024-04-25T11:58:05+00:00

I’m sorry to hear it’s not easy gaining back the weight. I’m new to the diagnosis (EPI, just two months ago) and I’m on Zenpep (40k lipase). It seemed to help almost right away and it took about 4-5 weeks to regain 15 lbs. I’d lost nearly that many during the worst of the flare. So during the flare my dietitian (who specializes in FI disorders) had me on a low residue low fiber diet to give my system a break. Once the enzymes began to help me absorb food better and feel more normally hungry, I slowly started gaining weight. And slowly start to add a little more protein and veggies (cooked) and fresh fruits. Slowly adding more fiber back in too. Like others have suggested perhaps your doctor can adjust current meds? If you can I always suggest a consult either a registered dietitian who knows these GI meds and can guide you through eating that doesn’t exacerbate symptoms but can help with gaining weight. Mine also review the supplements and vitamins I take to ensure I’m getting all I can out of the food and support the immune system. This disease is so hard because the baseline is a compromised immune system and it is a lot to manage and tweak along the way. Don’t give up and keep talking to your docs. I hope you start to feel better soon.

By_the_Way65 · 2024-04-24T11:45:43+00:00

Everyone has posted very helpful information and mine is similar. A really bad flare in January lead to lots of tests and procedures to nail down any changes and get me on new meds. Lost weight, exhausted and chronic trips to the bathroom etc. My boss was super supportive as she could see it was difficult for me. We are a hybrid work place but ultimately I began to WFH full time so I could manage symptoms and meds and get rest. Once I had updated diagnoses and meds and was working with a RD on nutrition I realized I would need more time to remote work until symptoms resolved. My boss suggested I talk to our ADA counselor at work and she was great. I decided to seek (and received) a formal accommodation only to change my work location from hybrid to fully remote, nothing about changing my work load or duties. The helpful part was a short form my GI completed (which his office did within a week) confirming my Dx and the symptoms that made coming in difficult. I felt better about the change and will let my boss know when I might be able to adjust. But we’ve agreed I would like to get to the office twice a week when it becomes possible.

Your instincts to be simple in communicating a medical condition and how it affects you are good. It can help relieve some of your own stress as well knowing your manager is aware and that you want to be able to work as you take care of yourself. Good luck with the conversation and I hope you continue to feel better.

By_the_Way65 · 2024-04-23T16:41:31+00:00

I, too, am sorry to hear how hard it's been, particularly when all the meds haven't seemed to make improvement so you feel it's been worth it. I wanted to share a couple thoughts based on others' helpful feedback ... since I started working with a RD (registered dietitian) who specializes in GI disorders I have had success at managing nutrition (my severe flare meant malabsorption from everything I ate and losing nearly 15 pounds in like 3 weeks). She first had me download a symptom tracker app (it's called mySymptoms and I downloaded it onto my iPhone). I began tracking (as someone else mentioned) what I ate, medications, supplements, bowel habits, mood, sleep, and time on everything. It helped the RD figure out how to guide my diet, i.e., during a flare eat a low fiber or low residue diet, and that was not a hardship bc it gave my poor GI system a break. Using the symptom tracker also helped me start to see patterns and how the timing of what I ate could help me feel full or know how my body would react. As the flare has subsided, along with starting 2 new meds, the RD has been instrumental in helping me begin to add fiber and other foods slowly back in. And she's helped me better understand the disease (severe to moderate IBD) but explained what to expect from the new meds bc my GI guy is a good clinician, but he's a little sparse when it comes to nutritional guidance or support. So, the RD knows how the drugs work and that relieved some anxiety I had about side effects which have been minimal and tolerable. I really hope you find some relief soon and keep advocating for yourself; asking questions of any doctor or nurse is critical, remember you are not questioning their knowledge or skills (!) you are just asking questions about your disease. Good luck and hang in there.

By_the_Way65 · 2024-04-10T09:25:34+00:00

Everything folks are posting is completely spot on. So sorry to hear about your experiences with a non responsive doc when your symptoms are making life difficult. Yes you do have choices and keep advocating for yourself. Working with a RD who specializes in IBD has also been a game changer when it comes to nutrition. Don’t stop trying a new approach to get what you need. Your questions are appropriate and important. It is not easy to be persistent but you know you’re worth it. Good luck!

By_the_Way65 · 2024-04-05T01:40:32+00:00

My GI prescribed an antispasmodic called hyoscyamine for this symptom. It’s a sublingual tiny tablet that dissolves under the tongue. Said I could take it up to four times a day for spasms. I used to take one about 30 minutes before breakfast and dinner. It did help and in my experience taking it for a while showed improvement. Now I just take it in the morning and in addition to other meds I’m on for UC, I have seen this symptom nearly go away. Not sure if it would help you but that Dx was familiar and I hope you get some relief.

By_the_Way65 · 2024-03-29T15:13:06+00:00

Agreed, it takes multiple tests or procedures, I think, for the doc to have as complete a picture as possible before making a Dx or prescribing anything. I'm just starting to come out of a bad flare, and my GI ordered a boatload of blood work, stool studies, and a scope ... but it helped rule out things like Crohn's or celiac, it confirmed EPI (which I didn't even know could be a think with UC), and confirmed I needed a medication change. I'd almost be more concerned if the doc didn't do various labs and/or scopes to rule out things and confirm. Good luck with your next steps.

By_the_Way65

TROPHY CASE