several failed therapies...is there a light at the end of the tunnel somewhere?

Hi all,

I'm a 28 year old female and was diagnosed with moderate UC about a year ago, and my doctor has taken a very cavalier attitude toward my treatment, assuring me at first that "it's not that bad" and I should be able to take some pills and "live a perfectly normal life." Fast forward several months, and I have been on Lialda, which made my condition worse, Entyvio (eventually bumped up to every 4 weeks instead of 8), which had no impact, Uceris foam and prednisone, both of which had no impact on my most recent flare...if you even want to call it a flare, considering the fact that it never really got better. My last colonoscopy a week ago showed no improvement since I started treatment, so we are back to the drawing board. I'm now taking Imuran and starting Humira this week and am cautiously optimistic, but in the meantime, I continue to deal with debilitating symptoms that are keeping me from being able to function normally each day. My doctor has literally said he's completely baffled because it's so rare that people are as unresponsive as I am. This does not inspire much confidence.

Has anyone had similar experiences? It's incredibly discouraging to hear my doctor say that there's nothing they can do, and I just have to wait the 3-6 months to see if this newest round of drugs works.

Thanks for your input!

Some people who are unresponsive to meds find that diet modification make a bigger impact than they might have thought. If nothing else, it will give your colon the opportunity to better heal while the meds take effect. Roughly what does your diet look like each week?

Thanks for all the responses! I was actually given the option between Humira and Remicade, but I just couldn't continue to take a day off of work every month for an infusion.

I am looking into other GI practices in hopes that they might be a bit more responsive. I feel like my doctor has thrown prescription after prescription at me the past year and just assumed that everything is fine. I've had to be incredibly proactive (not necessarily a bad thing) in my communication with them because if I wasn't giving them updates on symptoms and some effects, they would just assume all was well and I would see them every 6 months for a clinic appointment.

The infusions are not every month and some infusion sites are more accommodating with later hours or Saturday appointments.

After the loading doses it is usually every 8-10 weeks. The infusion takes 4 hours out of the day. Some GIs are writing scripts now for quicker infusions, I think 90-120 minutes.

I personally would do Simponi before Humira if that was an option, because it is more similar to Remicade than Humira is.

Humira is more effective in Crohns than UC.

I second the suggestion for Remicade first (or Simponi) - if you read the medical literature, it's pretty convincing that they are faster working (Remicade) and better success rates in treating UC than Humira. I've just started Remicade and saw an immediate improvement after the first infusion - not perfect, but many people say they see an improvement (if they're going to respond) by their third loading dose.

I'd strongly recommend reconsidering the Remicade - the infusions can usually be scheduled with some flexibility. And then - once you've got some resolution there - would find a GI who is an IBD specialist. It makes a huge difference, coming from someone who has done both!

I'd find a new GI, it seems that you've lost confidence in him. I personally would move on too. I went through a bunch of GIs before I found the one that worked best for me. I've been using him for the last 10+ years.

Both Simponi and Remicade are made by the same company with similar mechanisms that works on the UC. Remicade is the best but Simponi would be a good alternative.

My GI is very negative on Entyvio; he says stuff like "if it ever works" whenever I bring it up.

Entyvio uses a much different mechanism for its treatment of UC than Remicade.

I'd personally hold off on starting Humira until you find a new GI. You might be locked into it for awhile with your insurance company until you demonstrate that Humira fails you.

Simponi is a home injection vs Remicade that is an infusion. I'd try to go with Remicade if you can fit it into your schedule.

I think the option you're going with is a good one. You could also try restricted diets on top of that. There are some who have improvement with antibiotics too, might be something worth inquiring about. I had no luck with anything and had surgery, and it's been a life changer for me. i am pretty much back to normal + some additional toilet trips daily. I no longer take drugs or worry about any of this stuff. It's way early for you to worry about that, but yes, even in the worst of scenarios, there can be a light at the end of the tunnel. Try not to stress. Humira + imuran may very well be the magic bullet. I am surprised they didn't give you prednisone to get your feeling better right now. Or Uceris even. Good luck.

A lot of us on here,like you are non-responders. I remember my first flare and I took mesalmine and went into remission. I foolishly thought I could take this pill the rest of my life and be fine. My doctor tried to warn me that it might fail at some point. I wouldn't lose faith in your doctor. It's just like anything else, what works for one doesn't work for all. The good news is there are still options out there. I personally would try remicade before humira as it does have s slightly better track record. Remicade and imuran combo brought me the most relief. And it worked pretty quickly...like 3 months and I felt myself again. I've had some setbacks since then but have felt 90% better since then.

Kanva, thank you so much for this response! It's just what I needed to hear. I feel I have had a very similar reaponse from myGI. I am going into my next appointment being willing to have a conversation about communication and open to looking into other practices if necessary.

I think the first thing I would do were it me is go for a second opinion with another G.I. specialist; any doctor that tells a UC patient 'it's not that bad' is not equipped to treat the disease in my humble opinion. My initial G.I. doc sounded a bit like yours; although he was a nice guy who I liked he didn't seem that concerned with my situation and failures of what at the time was my current treatment - Mesalimine drugs. So I sought a second opinion with the doc who is my current G.I. guy, and even though he was not able to successfully treat me he listened to my concerns and worked with me and tried really hard to cure me. He was fine with me seeking a third opinion, which I did (with one of the top research doctors in the United States at Mount Sinai/New York, who basically said my current guy was doing what he would do so I stayed with my current guy). If a certain diet such as vegan or vegetarian is not of concern I would definitely try diet modification and high dose probiotics before trying any other drug experimentation. And let's face it, each and everyone of those drugs is an experiment as we all react differently to them. Many people respond well to diet modification; unfortunately I was not one of them. I would never tell anyone that surgery is the best option, that is a very personal and individual decision to make. However if I'm being honest, I will say that I feel I wasted 4 years experimenting with all those different drugs before I did opt for surgery. I wish you the best; reach out to people on these forums as much as you need to; there is a wealth of experience and help to be had here.

why not just share those resources here - that is what this forum is about = empowering others, free of charge -

Just watch it with "email me" business as you look like a total spammer selling a product, which is against forum rules. Share openly as that's truly what this forum us about. If you've got something good that works for you then anyone who reads may benefit. Thanks!