A relatively new induction and maintenance therapy has been evaluated and approved to treat certain levels of severity of ulcerative colitis.
As this medication is relatively new to the market in some countries, along with the United States, in Europe Zeposia as it is often called was authorized via the European Medicines Agency in May of 2020.
There was a study published with a great graphic display listed below to give some more information about this medication. Perhaps you will find this useful.
The graphic above was part of a study which involved several hundred UC’ers. There were also some familiar names as far as gastroenterologists (people who helped with the study). One in particular has been mentioned many times on the iHaveUC website, Dr. Stephen B Hanauer. He has about 21 comments as of this posting date on that “GI Doctor Review page if you want to learn more about him, his personality, and patient thoughts. He was and still is a very influential GI doctor in the world of IBD, and feel free to make your own opinions on his thinking.
Something that might seem interesting to UC’ers is that this medication is also approved in some parts of the world to also treat a different disease, “Multiple Sclerosis). The EMA (European Medicines Agency) website states this about MS: “Multiple sclerosis is a disease in which the immune system (the body’s defences) attacks and damages the protective insulation around the nerves and the nerves themselves in the brain and spinal cord.”
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Just home from a colonoscopy, where my doctor said my inflammation had improved 90% after 8 months on Zeposia. I have none or very infrequent mild symptoms now. I haven’t had any side effects. (And just at the eye doctor where they checked for macular edema). And since it’s a 1/day pill rather than infusion, I have to say I’m completely thrilled. Stopped wearing any protective underwear which has save me money. Full disclosure- I’ve made other changes too like daily supershake including bovine colostrum and more vigilance about getting proper sleep. Other than the Zeposia, I think getting proper sleep has been the most important because it’s only when I’m sleep deprived and stressed that any symptoms return.
I find this very intersting becasue I have UC and my niece has just been diagnosed with MS this drug is said to be used for both It is important to know the side effects that was not stated in theinformation
I started site shortly after being diagnosed in October of 2008 with severe pancolitis (when my whole colon was inflamed).
For me, it was a very rough start with severe symptoms. Getting bounced from medication to medication was not easy or too helpful. But, I did meet another UC’er, changes several parts of my diet, and of course the rest is history.
Leave a comment, ask a question, take advantage of our past experiences here, use the search boxes, they are your friends to0:)
I’ve written 2 different ulcerative colitis ebooks, you can check them out here.
And, the Free eNewsletter, which has important updates can be joined here.
Let us know how well this works, don’t know much about it
If Zeposia helps to treat UC and Multiple Sclerosis then you wonder what the side effects are from trying to keep a disease like MS which involves nerve cells in the brain and spinal column from affecting your own brain cells if you just have UC. It’s a case of treating your ass and losing your brain in the process. No thank you !!
Thank you for creating a post about this medication! I was recently diagnosed with moderate/severe UC. I see two GI’s at the moment…one who immediately put put me on Zeposia and another who put me on a strict very low carb, no sugar diet. I’m 33 years old and Two weeks after I had my fourth baby, I got very sick with all the UC symptoms. I’d never had stomach issues before this. Constant bathroom runs that quickly turned to nothing but blood in the toilet, severe stomach cramping, lost 20 pounds in 6 days…after two ER visits I finally got a colonoscopy and they discovered I had severe pancolitis and diagnosed me with UC. This was in November 2021. I was initially put on prednisone (which helped but i HATED the way it made me feel) and Zeposia by the first doctor. Then I went to a doctor that a friend with UC referred me to. My friend claimed that this doctor saved his life. He tried every medication out there and nothing was working. He finally tried this very low carb, no sugar diet and it has greatly improved his quality of life. He is no longer on any medication for his UC. My experience with Zeposia so far (about 6 months) has been good. I feel much better, have normal BM’s once maybe twice a day with minimal blood/mucous. I haven’t noticed any negative side effects yet. Overall I feel almost back to normal. My question is though, is it the medication that has helped me? Or the strict diet? The doctor who put me on the diet is about to retire and it worries me because I’d like to get off the medication and just continue with the diet. I feel like I don’t have enough guidance as to how/when to wean off the medication. For those of you who have been in this boat, how did you stop medication? Did you wait for doctor approval or did you just go with your instincts and stop it yourselves? Zeposia overall hasn’t been a bad experience by any means. I’m grateful to feel better and that my symptoms have greatly improved. I also like that I can stop taking Zeposia and if I needed it I could start it again. I know with a lot of the medications for UC, once you stop them you can’t ever take them again. Improvement for me happened more quickly for me than some of the other UC stories I’ve read about which I am also grateful for. Within a few months of first getting diagnosed I started to notice some improvement. Do I feel like the medication has helped? Maybe. Probably. Do I feel like the diet has helped? Definitely Yes. For me, I just don’t like the idea of being on a medication for the rest of my life that effects my immune system. I’m looking forward to seeing what other who are on Zeposia have to say about it!
I am on a very low-carb, very low-sugar diet, and I take two Lialdas per day. That’s it. No blood/mucous and pretty regular. I think the secret is not to mix carbs with proteins. For example, no potatoes with meat/chicken. No pasta with meat sauce. No bread with any proteins. Occasionally, I will cheat and have some French toast with sprouted bread. But that’s it. You can have potatoes, French fries, etc, but you ought to have them alone or with vegetables.
For breakfast, eggs with beans is good or eggs with turkey bacon.
So, your “diet” doc was right!
I have a similar story. I am 36.I begin getting sick while pregnant. Spent two weeks in hospital during pregnancy. They diagnosed me with severe pan-colitis and gave me antibiotics. Baby came at 32 weeks. Then about a week later I got sick again. Had never had stomach problems until third baby. First symptoms begin December 2020 had baby summer 2021. Tried Zeposia but it made me severely sick and caused another flare up February 2022. Now doing Humira. I would love to know more about the diet?
Dayna, it’s been a few months since I’ve been on here. The diet I follow is very similar to the ketogenic diet. I know on the ketogenic diet, it is recommended to have around 50 grams of carbs per day (I may be off on that?) My doctor recommends as low of carbs as possible. Im also eating gluten free. When I first started this diet I was probably eating around 20 grams or less of carbs a day. I still try to stick to that, but since my symptoms have improved a lot I allow myself some wiggle room. So no fruit, no grains, pastas, etc., Some dairy is ok, but no milk or yogurt as it has sugar in it. I snack on cheese sticks or put shredded cheese on my eggs and I seem to handle that ok. There is a brand called Ratio that makes keto friendly yogurt. Most vegetables are good except for the starchy ones, potatoes, beans. Any meat is good It has been very beneficial for me. I would be happy to give you even more details if you’d like to email me. My email is morganabbott525@gmail.com. I’d love to help in any way.
I have been in flare and resistant to multiple meds since 2019. I start Zeposia next week and am very hopeful for a good response. Glad to hear you dietary changes are helping. I was just at Mayo and my GI recommended a whole based plant food diet to aid in healing. I am on Day 12 of whole plant based life and it’s surprisingly easy and I do believe helping. I would strongly recommend that you speak to your GI prior to ever stopping your medications. This is coming from someone who has been on struggle bus for years even on meds. I have heard they usually keep you on therapy for 4-5 years prior to considering discontinuation.
Well you are lucky to have such a smart doctor. Sorry to hear he is retiring. My advice is not to go to a doctor that doesn’t believe in diet. A good gastroenterologist is hard to find.
I got UC in 2009 and was recommended the diet called Breaking the Vicious Cycle. Author is Elaine Gottschall. I’d be really curious how close your diet compares to Breaking the Vicious Cycle. It’s basically no carbs as well. It took me months to get better, but it was well worth it and I was in remission for quite long time. I was back-and-forth for years and then I go back on the diet and get better. I am curious if your doctor says you can have gluten-free pasta and bread? After a while I just needed something different than what was on the diet and went to the gluten-free and I do well on it for a while but then I do go backwards again I have to start over.
In August 2022 I started a flare up but ignored it because I was so tired of dealing with diet. Then the end of November I got so bad that I too started bleeding and then I went back on my strict diet and ate meat only and started introducing vegetables. It is now 1 February 2023 and that’s as far as I got. the doctor put me on the new meds Zeposia and I am getting better after 10 weeks. The medication is so new. I don’t know if anyone knows what happens when you go off of it yet. I too was confused whether it was Zeposia or because I went back on my diet. I have a feeling it was a combination of both but because of the Zeposia I feel that I’m getting better quicker. At one time I would feel I have to go but I wouldn’t go and I think it was the medication because I didn’t feel that before with the diet it just gradually got me better. Unfortunately I go on Medicare in May and may not be able to continue with the drug, so if that’s the case, I’ll let you know what happens as long as I stay on the diet. So happy your doctor recommended you to stay away from carbs because this simple diet could save lives. I like go in the natural route, but if meds are needed I’m all game to go on them as well stay going the natural way.
I have moderate to severe UC and started the Specific Carbohydrate Diet (SCD diet) 10 years ago and feel so much better with a good quality of life. So, it might truly be your diet of no sugar and low carb diet. Remacaide and Entyvio had no effect on me.
Wow! I am impressed, congratulations!!! Not easy to keep it up. Do you eat any GF pasta and bread now that there are new products out there?
The drug sounds promising. It’s not a biologic. And you take it daily orally by taking a capsule. That’s the good news. Bad news /The pharmaceutical company for this drug charges 86,000 a year. I’f you work for a small company and you have insurance this is the type of care that will get your company’s medical insurance cancelled. It’s sad but true. If u work for a big company it’s probably unnoticeable. Regardless my point here, there is a lot of sick UC people out there that could benefit from this drug and other drugs but these drug companies make it extremely difficult for people to benefit. I’m on Entivyo it took a act of congress to get on this drug. It’s also very expensive. I’m on my wife’s medical insurance policy, it’s now getting cancelled due medical payouts outweigh paid in employee premiums. Yes Me and my UC meds etc is part of that problem. Sorry to ramble but i am very passionate about the flawed health care system. It could be worse, I could not have medical insurance. A lot of us wait for the next new drug but there is always a catch.
Paul, thank you for this insight, I think far too often the reality side of access I’d definitely not mentioned (I am to blame for sure in this) and this should be a much bigger part of the convo. Thx again for adding your thoughts !, Adam
Reach out to the maker of the drug. Sometimes they offer it at a reduced price or free.
I agree. The system is very flawed. However, I am getting this medication for free for two years…some sort of program through the drug company. I did have to submit things through my insurance and prove that my insurance denied it. But I get this medication shipped to my house monthly now. “Zeposia 360” is what the program is called..nurses call monthly and ask questions regarding my symptoms. My doctors office got all of this set up after prescribing it to me.
Hi Morgan,
Thank you for sharing this info. For sure there are many others who would be interested in a program such as this. Any more info you can share on the Zeposia 360 program? Do you have any regular contact with anyone from the drug company? Or is the program pretty much setup initially and then you are all set? Any details would be helpful for others! and thx, Adam
The phone number for Zeposia 360 program is 1-833-937-6742. They call me monthly to send my prescription. My doctor’s office got it all set up for me. You could try calling the Zeposia 360 number directly, or ask your doctor about getting it set up. Either way, the Zeposia program will need some form of contact with your doctor to get it set up through the free 2 year trial program. Hopefully this is helpful!
It is called the bridge program for Zeposia and you can get the medication for two years free. Because I am going on Medicare, I no longer qualify. Hope this information helps others. I am unsure if this med is worth the money, although it got me to remission. I will be on it until my meds run out. I haven’t been great on the SCD diet. I do stay completely off of gluten but enjoy GF products just to mix it up which could be my problem. I am good for a while, then I have a surprise that doesn’t end well. With the expense of this med I was hoping I could cheat a bit more on diet, it doesn’t seem to be the case.
I work for a big healthcare company and would think I have good healthcare coverage. I have now failed Entyvio and Zeposia was declined by my insurance, now in appeals. Healthcare and BigPharma have siginifvxnf problems but I will say after two weeks of trying to get Zeposia approved for the medication Bristol-Myers Squibb actually does have a program that covers the cost of the medication for up to 24 months while waiting on insurance authorization. I found out I qualify on Friday and my meds arrive Tuesday.
Great information. Yes my Zeposia journey is similar with some difficulty getting set up. They need to do some specialized testing before they will start you including some eye testing to make sure you won’t develop macular edema. A nurse came to my house with a big box for the eye test and took blood. I started with Zeposia 360 and then transferred to an online pharmacy – Accredo, who has been great about refills including reminders and rushing delivery if necessary. So far on BC/BS no charge but I think that may end after 12 months. It’s very expensive without insurance.
It worked pretty quickly for me with regular movements within a month and symptom free for the most part now at 8 months.
I have had UC since 2009 and I am 64 years old. I also, contribute stress as a factor, but not sure now. I sold my business and the last year that I had to work for this company was the most stressful and I had no flare ups. I was taking VSL#3 probiotic medical food, on the SCD diet but I did add GF pasta, bread and crackers. I was also on mesalaime and taking supplements. My doctor was amazed and so was I.
Weirdly, I just retired (should be less stressful, right?) and I am have a flare up like I did in 2009 and I can’t stop going to the bathroom. It was just in the mornings at first now all day long since July 1st and it is now almost Dec.
I just started taking Zeposia a few days ago. My doctor has subscribed it to his patients since it came out two years ago. He says he has had good results with little side effects. I am on the two year program. I will keep you posted how I do and would love to hear how everyone else is doing on this medication. Yes, it is expensive — I asked the nurse, ha ha. No one can afford this, I feel. But willing to try it on the free program for two years. If it works then what? All I can say is I just want to feel better and just take it day by day.
Hope everyone feels better soon!
Jamie
Good luck! I’m 1 year into Zeposia and in total remission! Confirmed by colonoscopy. I’m still doing morning green juice, daily super shakes including bovine colostrum and Align pro-biotic and avoid bad foods like Diet Coke that I used to consume a long time ago but otherwise feel I have a more normal diet including diary. I am afraid of the cost a year from now because I don’t want to go back.
Hi Eric,
Thank you for responding :) Boy am I glad you are in remission!!!
I feel diet and stress are a big part of this, but sometimes it seems to come out of nowhere. I have changed my diet years ago to the SCD and that worked really well. Then, I started adding potatoes, rice, corn tortilla’s, gluten free bread and gluten free pasta (but no wheat) and doing great! Then bam, I start getting sick and I just can’t stand going back to eating just cooked meat and over cooked vegetables :( Guess I was lucky for a longtime. I didn’t want to deal with my illness, but now it is dealing with me.
I wonder what the plan is with this drug? No one can afford $7,000 a month. Keep my posted.
Hi all,
Currently doing the Zeposia 360 and waiting for them to send me the starter pack. My dr told me this is a biologic drug. It’s just not an infusion like the others.
Also – it’s my understanding that in order to quAlify for the program from Bristol Meyers Squib, you do need to have insurance. It triggers the program once your insurance denies the drug and makes it completely free. They also sign you up for a $18k copay card. That sounded surprising to me and I’m hesitant to believe it… but I’ll update again once I’ve started the program.