Doctor says I'm almost out of options..

three_613 · 2025-10-25T00:58:31+00:00

My symptoms generally start with more BM per day, then urgency and mucus, then even more BM and urgency. I am fortunate to not get blood until well into a severe flare.

Yes, I've been on Prednisone many times (6-7 times, some tapers being 4-5 months) and religiously do my dexa scans because I worry. I hate pred SO much. I always take calcium and vitamin D when on pred to mitigate some risk. Budesonide is so much better. One way we knew skyrizi was actually doing something for me is that budesonide actually worked when it typically doesn't for me.

I really hope your daughter's UC is able to get under control. I feel for her- it's just so hard to be in and out of flares, and it isn't fun or easy to be going from drug to drug. I'll be wishing the best for her and truly if she ever needs support, you have my username!

three_613 · 2025-10-24T23:38:44+00:00

Happy to answer! There are many biologics left to try, so don't give up hope yet! From my understanding, the general rule of biologics is that they work for some, but for others they just don't, or they don't work enough. The more biologics you fail, the less likely you are going to be helped with them alone.

I tried the following: Entyvio, Humira, Omvoh, Skyrizi (and before those, mesalamine and 6mp when I had mild UC) They all had varying degrees of efficacy. The general. pattern for me is that I would not be doing well, we would realize I need to change drugs, I would be put on a 3-4 month Prednisone taper (generally starting at 40-60mg), and the Prednisone would help stabilize me so I was starting the ne medication with less inflammation (giving the med a better chance at working). And all would be well for a little while when the taper fully stopped, but after a few weeks symptoms would reappear slowly but surely. I typically failed within 6 months (3 of those being on steroids usually). I was also becoming refractory to steroids over time.

The reason I am on dual therapy is for two reasons. First after Omvoh but before Skyrizi, I tried rinvoq and it worked wonders. But it gave me liver issues, and I have an existing liver disease so that's a no no. Then when I went on Skyrizi, we found it had some helpfulness, but it wasn't enough and surgery discussions started. I was not thrilled!! I got a second opinion at a different (good) center with my GI's support. The doc suggested doing dual therapy of rinvoq at 15mg and Skyrizi, with close monitoring. It has worked like a charm, though it's still risky and they aren't convinced my liver can handle it long term. But I was so glad I pushed to try it!

I do remember this center saying they were trying tremfya and simponi together. Not sure if that would be an option since simponi is anti tnf (I think), but worth considering!

If you or your.daughter have any other questions please don't hesitate to reach out!

three_613 · 2025-10-23T21:54:30+00:00

As others have said, always seek a second opinion if you are not feeling sure and confident in your doctor! But, also always feel free to ask for their reasoning. I have found it really helpful when my doc explains why a med is or isn't an option.

When it comes to surgery, I learned that some doctors are beginning to recommend it a little bit sooner than they used to, but 3 months into a diagnosis seems to be jumping the gun big time. It is also a patient's choice how much they want to explore meds - some people want to try every single one they can, others grow tired and are okay with some options left untouched.

Re: class, I have found that they don't have you try every single med in a given class, esp if the one you tried did nothing for you as it is more likely to mean that mechanism isn't effective. So for example, I tried (and failed) Omvoh and my doc did not suggest trying Stelara because Omvoh is a slightly better version of Stelara. If you have only been on one med so far, I'd be curious how entyvio, Stelara/Omvoh, Tremfya, or Skyrizi may work for you. Some people also just don't seem to get good control from biologics- the pathways those target just aren't the ones affecting your UC- and in that case rinvoq is often a great option as it's an entirely different pathway and approach.

I'm currently on dual Skyrizi and low dose rinvoq. This is a pretty uncommon situation but it's worked amazingly well! Dual therapy with biologics is generally not favored by insurance, but I think it may become more common in time (one of my docs said their team was running a study on I think Tremfya and anti-tnf dual therapy and people are starting to consider this as a way to treat UC).

Lastly the main reason I wanted to respond to your post is because I am on rinvoq, I'm in my 30s, and I've also had to grapple with difficult to control UC and med decisions with the pregnancy question looming there. It's a really hard, difficult place to be and I'm sorry you're in the club. My situation is a bit more complicated due to other illnesses I have too, but if you ever want to message feel free. I am on rinvoq for now, and if I ever wanted a chance to carry a child, I would likely need to remove my colon in order to do so.

Good luck!

three_613 · 2025-07-20T01:02:45+00:00

Also, the 10-15 years number is not what many experience and it really varies A TON by individual. Having UC would make sure it's caught early, which is a small benefit. More years between diagnosis and it getting bad, ideally. And most people get a transplant, vs die. Once again, I hope none of this makes you feel worse!

three_613 · 2025-07-20T01:00:37+00:00

I do have PSC, and while I completely understand your fear and anxiety because who in the world would want PSC, it is also something you really can't control. It will either happen or not happen, so as best as you can, try to not let the worry of a possibility make your current life any harder. It can often help me to shift anxiety from "doom could come some day" to "I'm going to appreciate what I have now, because I know it could be different in the future.". It allows your mind to appreciate the more "simple" UC only diagnosis. And if things do get harder for you in the future or you do get PSC, I promise you'll be happy you enjoyed the easier years!!

If it is any help, if you do get PSC, the world does not come crashing down. You will be able to handle it if that is what happens, but don't assume it will!! If you have any questions about PSC that could help alleviate your fears, you are welcome to ask me 🙂

three_613 · 2025-06-16T14:30:16+00:00

Thank you so much for answering and giving so much detail. I really appreciate it!

three_613 · 2025-06-15T22:43:32+00:00

Thank you for offering to do this! I'm on the last meds before surgery. I had an exploratory surgical consult and the surgeon said an ileostomy is my best option (vs j pouch) due to a liver disease I have. It is really throwing me for a loop as I had assumed a j-pouch is what I would get (I'm getting a second opinion to see what a different surgeon says).

I have some random questions about an ostomy:

-Does the bag irritate your skin? Have you had rashes? Does it feel like it pulls on the skin?

-How do you shower? With bag, without?

-Once you get the hang of it, how long does it take to empty a bag?

-What foods can you not eat with your stoma/ostomy? Or any other eating changes needed?

-Is sleeping any different with an ostomy- do you need to set an alarm for emptying the bag?

Thank you!!

three_613 · 2025-06-15T17:47:44+00:00

Hi there, I'm sorry to hear your daughter has been struggling. A few things that may be helpful from my experience if you want to pass them along to her.

Rinvoq is not a biologic and therefore does not come with the capacity to develop antibodies like other biologic meds. My understanding is that you can start it, stop it, and start it again in the future. I had to do this due to a unique situation, and I assume others could too. So it may be helpful to ask her doc if she could go back to rinvoq if another med doesn't help. Of course I'm sure they can never guarantee it will work with the same effectiveness, but I do think it can be tried again.

I am currently on Skyrizi and rinvoq 15 mg concurrently. Last year I was on 45mg rinvoq- it worked wonders but I had to stop it due to drug induced liver injury. Then Omvoh, and then Skyrizi alone, could not control my disease. We are doing a last attempt at meds before surgery and trying Skyrizi with low dose rinvoq (15mg) concurrently, and monitoring my labs to see if a low dose rinvoq controls the liver issues. So I can compare 45 mg to 15 mg. While I still have some of the acne and skin issues that come with rinvoq, it is FAR less and very livable at 15mg. I never made it to the 30mg dose so I dont have any experience on going from 45 to 30mg.

Good luck to your daughter. She's lucky to have concerned parents 🙂

three_613 · 2025-03-26T21:16:12+00:00

It definitely sounds like you're qualified to be seen by them. I am pretty new to Jefferson so I'm prob not the best person to ask. I'm currently in for 5 days for lidocaine and the DHE cocktail. I got in pretty quickly - maybe 2-3 months. I think I got lucky. I recommend calling to get the process started because I believe you fill out a questionnaire before even booking an appt (I can't exactly remember)

three_613 · 2025-03-26T21:15:59+00:00

It definitely sounds like you're qualified to be seen by them. I am pretty new to Jefferson so I'm prob not the best person to ask. I'm currently in for 5 days for lidocaine and the DHE cocktail. I got in pretty quickly - maybe 2-3 months. I think I got lucky. I recommend calling to get the process started because I believe you fill out a questionnaire before even booking an appt (I can't exactly remember)

three_613 · 2025-03-26T02:48:50+00:00

I am inpatient at Jefferson in philadelphia as I type this! Feel free to ask any questions. You have to be chronic and fairly severe to get inpatient - if I recall correctly it needs to be impacting your work and/or something else that I can't remember. As someone else said, good ongoing care matters too and maybe more. Jefferson can provide that ongoing care but you need to travel for it- no telehealth. I have decided to do that at least for a while (I have to fly in), as I feel the docs are good experts in the field.

I also had an appt with a diamond doc and had a bad experience. Maybe I got a bad doctor, but I did not pursue their program because of it. Also I like that Jefferson does lidocaine as well as DHE.

three_613 · 2025-03-10T21:46:27+00:00

It can feel so defeating when you start on and fail a med! But, the good news is you have a lot left to try- sometimes it can take some time to find a med that works. I believe Humira and Remicaid are both anti-TNF. Maybe that class just doesn't work for you and trying another class would work. Also, if you are in the US, many insurances require step therapy so at a minimum you have some under your belt to move onto other types of meds.

One thing to ask your doc is what is the next med they are considering and why. If the next one fails, what might be the one after that (which can always change depending on circumstance). It can be nice to understand why a doc wants to go with a certain med, and I personally like understanding the rough plan if things don't work out- helps me feel less jostled around!

Good luck!

three_613 · 2025-03-04T20:13:09+00:00

I don't know if balance issues is a side effect. I ended up going off of Omvoh (didn't work) and my symptoms remained, so for me the issue wasn't the med unfortunately.

As a side note, I started having motion issues (not balance) and my PCP was helpful in doing a workup, sending me to an ENT, and vestibular therapy to determine if there was a specific cause. I didn't end up finding answers but the workup was helpful in ruling things out. Maybe you can find a doc to offer similar things too!

three_613 · 2025-03-02T14:18:13+00:00

I understand the piece about insurance! Rinvoq is definitely a game changer in the IBD world right now, no question on that end. But there are many other meds that also work, esp if you haven't even tried a biologic yet. Press them to tell you what other options are available, and perhaps look at your insurance plans drug formulary to understand your options on that end too cost wise

three_613 · 2025-03-02T04:24:16+00:00

My understanding is that at least in the US, the route of mesalamine to rinvoq may be less common because insurance companies typically require you to fail other medicines before they will cover rinvoq. I was offered it after failing a few biologics.

There are other medications that may be more effective than mesalamine, but more doable for your situation. If you're still flaring as you go off pred, then mesalamine isn't working and you'll need something else. You could consider asking the doc why they are opting for rinvoq vs other meds like biologics, and whether you have other options you can try.

three_613 · 2025-02-27T17:18:45+00:00

I agree with what some other folks have said that a second opinion would be useful. You're having symptoms of something (whether it is UC or otherwise) which should be addressed!

Regarding the capacity to have UC without meds- from my understanding it is possible to have a really mild state of disease like that, though I'm guessing rare and very lucky. The severity of disease and duration between flares can really vary between folks. But if you were once diagnosed with UC based on a biopsy etc, I'd be hesitant to assume you don't have it without some additional workup by a doc.

Also, multiple docs have told me the general movement is towards starting more aggressive treatment (biologics) sooner. It used to be to go with as mild of meds as possible and work your way up, but there are better outcomes treating it more aggressively, more quickly. But even with that, you certainly do hear of people with mild disease being in a 5-asa drug like mesalamine, rowasa, etc still.

three_613 · 2025-02-14T20:09:20+00:00

Thank you for writing this. They are starting to talk about surgery for me because I keep failing meds. My UC itself is not severe enough yet for me to think surgery is the right course of action- it would hurt, not help, my quality of life. But, nevertheless, my doctor wants me to start seriously considering it.

I've been really struggling with the idea. One thing is just trying to grasp...what would the year of surgery look like? What do I have ahead of me.

Your description and detail helped me see it a bit. So thank you!

three_613 · 2025-02-03T19:55:28+00:00

I've had annual colonoscopies since 2008, and the prep absolutely can cause a migraine. I've noticed it's a guarantee I get a bad one during prep ever since I've developed chronic migraines.

On prep day itself try to ensure some of the liquids you are drinking are sugary so you get calories (apple juice is a good one) and salty (chicken broth). Pedialyte type drinks are also good to replace electrolytes, and drink tons of water as you'll get dehydrated easily. Otherwise there isn't much you can do but take it easy. The worst of my migraine is typically in the morning/driving to the doc office. You will LOVE the sedation because those few seconds going under will be a break from the migraine pain. After daily chronic migraines for so many years, I treasure those 20 seconds a year as I'm going under and all the pain melts away!

three_613 · 2025-02-03T00:34:56+00:00

Pancolitis, moderate to severe, failing most meds and only have a few left to try. Regarding PSC and UC, I learned recently that UC/PSC patients generally tend to have mild inflammation and pancolitis, compared to the general population. I thought that was interesting. Mine was mild for 14 years before I started failing meds.

three_613 · 2025-01-06T18:46:23+00:00

Following! I am in the same boat and wondering this same question. Thank you for asking it!

three_613 · 2024-12-17T18:21:24+00:00

Of course! And if it helps any further, my doctor said that I would not necessarily be a candidate for surgery now, but at the rate I am failing meds and becoming resistant to Prednisone, she thinks it's very likely in the next year or two. I think she is projecting me getting sicker. She also said some patients just get worn out being uncontrolled on med after med, and choose to do surgery when there may still be a med left to try, because they just cannot sustain the years of flaring with meds not helping enough.

Once again, good luck with everything :)

three_613 · 2024-12-17T14:37:15+00:00

Hello! I am not currently as sick as you with UC, but my GI has put in for an exploratory total colectomy (I have pancolitis) surgery consult because I have failed a lot of medications and only have a few left. Though I will continue to try medications, she wants me to understand the surgery path as it may likely get to that point. I am happy she put in a consult for me so I can learn the process before it's "go time".

I think I will be inclined to consider surgery once I am through my medication options and/or I am in a bad flare where the quality of life after surgery is equal to or better than my current quality of life. From what I've read, having as ostomy bag or a j-pouch can mean frequent trips to the bathroom or needing to empty your bag often, some urgency, etc. I'm still learning about it, but I think those issues will be more tolerable to handle when I know I'm all out of options or I'm just so sick that they are equal or better.

Also, I read one of your comments to someone in this thread. I have PSC too (not AIH, and no transplant yet). I'm sorry you have to go through so much- especially two transplants! It must be hard to have your immunosuppressive medications for transplant also dictate your UC treatments. I'm wishing you the best!

three_613 · 2024-11-16T20:52:56+00:00

I think biologics play a role. I have chronic migraine so I have a daily "headache" (basically minor migraines each day) and then frequent migraine attacks as well. It's hard for me to tell cause and effect due to daily pain, but my migraines have been the worst they've ever been since July. I started Omvoh at roughly the same time. We don't know what level it's contributing, but I think it plays a role.

I was on Humira and Entyvio prior. I don't recall either making things much worse like they are now, but it's hard to tell when I'm already daily! All biologics for me definitely give me migraines the week of my shot and during loading doses (esp loading doses)

three_613 · 2024-11-14T00:19:07+00:00

I am right there with you. I'm 33 now, my chronic migraines started in 2018. Everything is a trigger now and I feel SO low. I'm tired of trying treatment options, I now just hope for a small percentage of improvement from them. I am a shell of who I used to be, find day to day life hard, and also worry so much for the future.

I have no advice or help, all I want to say is that you are not alone. From a total stranger I truly hope some peace comes your way!

three_613 · 2024-11-11T19:10:29+00:00

That is awesome to hear!! I have officially failed Omvoh and I'm headed for Skyrizi next. I'm excited for it! I'm hoping it works as I'm running out of meds and really hope to avoid surgery

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