What’s Next?

Sorry, sounds like you've been through a lot with your UC.

What meds and doses are you currently on? Is it only Humira and pred or are there more? I ask as I only found a remission by being on a lot of medications simultaneously: pred, remicade, 6MP, lialda, and rowasa at once.

It's possible you need more humira or to switch to something else. Fortunately the blood test results come back quick and help you decide what is next.

Certainly what you describe isn't normal (being in a flare since 2010, and only very brief remissions). Sounds like your case is very aggressive and under-treated (or no treatment truly works for you).

Has surgery been mentioned? You might want to try another biologic 1st, but it's something I would at least begin thinking about if you've been at this for 8-years and have had little success...

Yes I am actually in DFW area andwpuld love new GI
suggestions!

My doc only wanted me on Humira.. I was weaned off of Pred shortly after being hospitalized. While in the hospital I lost my last 15 lbs, they wouldn’t let me eat, gave no pain meds, just IV Pred, and some nauseas Medicine. I was utterly miserable.
I have built up a resistance to all steroids so far... initially Uceris brought me into a short remission but again it was short lived and didn’t work after the 3rd or 4th use..
I’m terrified to try another biologic as I feel like Humira has left me bald and that seems to be a consensus with all biologics..
I don’t think I’m a candidate for surgery yet as whenever they did my last scope I was highly highly inflamed but they didn’t see as much ulcerations as my first diagnosis. That and I really wouldn’t want to do surgery.. it scares the hell out of me.
Half of me wonders if I was Misdiagnosed to begin with since nothing seems to work?

Oh and I’m allergic to any mesalamines so those aren’t an option either.....

I know it sounds “vain” but evenay my sickest I still look okay with this disease. Most people say “oh but you look fine, how are you sick?” Which can be very frustrating at times. But I guess the hair loss is just a crack at my looks.. no matter how sick I was I always looked fine and the hair loss is noticeable where people have been asking. I guess I don’t like others being able to see something is wrong.

I think I’m mostly scared of surgery because it’s so permanent. Medications you can adjust, stop etc. surgery is a done deal. Also I feel like I haven’t have the best of care with my GI docs and that I could be missing something simple or misdiagnosed. I have never ever been prescribed a combination of medications. Usually Prednisone is weaned very quickly after starting whatever new medication I was prescribed .
I feel like I could be missing something so simple.. an allergy, or just needing a prolbiotic, or a bout of antibiotics.. I guess I still have hope it’s something else...

Yes, certainly explore combinations of medications as they can produce results. Having an mesalamine-intolerance it does limit some choices for you. However, biologics (humira) and immunomodulators (MTX/6MP/Imuran) are often combined. And yes, you can try adding a potent probiotic like VSL#3.

Quick weans of prednisone seem like a waste of everyone's time (yours and theirs). Generally expect to be on pred for 2-months minimum as a bridge while you wait for a new medication or dosage change to work. Wait until you're 90%-100% healed on pred before you are taper off of it for best results. It takes a couple months to shutoff the immune attack and cease/reset that process. After which UC can be more tame.

What makes you think you have a misdiagnosis? If you have a copy of your colonoscopy report and biopsy reports then your diagnosis should be pretty rock-solid. It's easy to be in denial and wish it was something else.

Just make sure they check you for infectious causes, like c diff, which we are more prone to as UC patients. C diff mirrors UC flare symptoms, yet responds only to antibiotics and/or FMT (steroids and immuno-suppressants like Humira actaully make c diff worse). I'd get a minimum of two stool tests for c diff, as the test can produce false-negatives.

Yes, a surgery is permanent but provides a way forward without urgency and pain from UC flares. You can "hold it" again, you have predictability and certainly, and go about your day without bathroom worries. All things an unending flare do not give us. Often people fail two biologics and try a number of things 1st, just to make sure there isn't another solution they haven't yet uncovered. Just good to know all of your options and that no matter what there is an out/escape if your UC proves to be uncontrollable through all medicinal means. You can have a good quality of life again, and that's encouraging.

Keep trying, maybe IntestinalWasps can recommend a good gasteroenteroligist team to get a second opinion and try some new thinking, and out of the box ideas. Often research-hospitals (like those found at major universities) are more current with the latest research and techniques, compared to older-school practices.

Post Edited (iPoop) : 4/19/2018 9:30:24 AM (GMT-6)

During my hospital stay I never responded to prendions and I was on 40 mg for over a month then weaned off about a month after being released, so I was off the end of January. I’ve been only on Humira since then. My doc things my slight relief in sysmptoms (almost remission) was solely from the Humira. I just take 1 pen every two weeks.. they said I should get my results next week as to if I’ve built up antibodies or need more.
The hair loss is getting a little less extreme now.. but for awhile I was filling up my bathroom trash can with clumps and clumps of hair and that was extremely disheartening.. I do take vitamin e and a hair skin and nails to counter it..
I know I stopped taking mercaptopurine because I had a some toxic liver count?? I can’t remeber exactly.. it’s been awhile ago and being on so many meds I get them mixed up

I’m not utterly opposed to surgery. But I am able to go about my day mostly normally. I still work everyday, I keep a scope out on the bathroom though, eat very light meals while at work, and usually am always extremely tired. Luckily I haven’t had a terrible amount of bleeding so I’m not anemic yet. I guess since I feel like I can function halfway normally that I don’t need surgery.
I’ve been sick for so long this is my normal. I honestly can’t imagine it any other way sometimes. The thought of vacations are laughable because I could never enjoy myself.

I’m definitely going to be in contact with that GI team! I’ve never had a second opinion and I don’t think it ever hurts. It sounds like combination therapy is what has helped everyone else and my doctor has not been helpful in giving any other ideas than just one medication at a time. She’s very by the books and won’t stray far from it. Not saying that’s not the way to go, but clearly one medication at a time isn’t cutting it..

That makes me feel a little better. A few people had suggested the hair loss was due to the extreme flare and weight loss in December. I’d say the hair loss started around March so that would be about right. My doctor said she didn’t see many patients with those issues and didn’t give any advice how to counter it. I also got ezcema from it but managed to find a cream to help keep that under wraps.
The hair loss has lessened a teeny bit, but it’s still pretty consistent. I have to use those tiny rubber bands to put my hair in a pony tail now.. when I braid it the bottom is only a few hairs thick and it puts me in tears. I know it may be silly to be upset over but it really does get to you!

I loved Uceris. I felt awesome on it with no side effects.. however I tried that in November before I got really bad and literally saw no results after a month and usually it took only 2 days to see some improvement.
What is Bentyl? I don’t believe I’ve heard of it. I’m happy to try any other options.. even if it’s a crazy diet. Everyone who doesn’t have the disease seems to suggest a diet but they don’t quite understand that even a glass of water can set me off.

I may just set up a consult to get a second opinion. I’m not really in any severe pain at this point. Just very uncomfortable with 10-15 extremely watery BMs a day. I have urgency but I can mostly control it.. I have been waking up a lot at night and that’s also a sign I’m going downhill.I just want to nip it in the bud before I get like I was in December. I just kept telling myself oh it’s not that bad and well.. look what happened.

I was on a liquid diet after coming out of the hospital and that did help some. I may try it again to see if it’ll curb some symptoms.
Now that you describe Bentyl I believe I may have been on it in the hospital as well, along with some nausea med and tramadol for pain.

I’ve never been on any rectal enemas/steroids before. I have pancolitis so they’ve always said it wouldn’t reach where I was having the most inflammation. I’m not sure if it could at leas help some of it though. They did a sigmoid scope in the hospital (I was too weak for a colonoscopy) and they said I had extreme inflammation but didn’t have as much ulcers as they thought. My intestines were so swollen they thought I had an intestinal blockage but it was essentially my colon just swollen shut.

Do most people have to double up their Humira dose? Is that common? I’m 5’5” and currently 125lbs so I’m not very large to need a big dose.
If my doctor wants to go with another medication should I try Remicade or Entyvio first? Things to consider for each?

Most of your answers will come from the humira blood test.

1.) If you have zero (or few) antibodies and low concentrations of humira then consider a dosage increase of Humira. Increasing the dosage can bring you back into a response, as you were before. You're essentially using up the humira more quickly than was expected and some of us need higher dosages.

2.) If you have zero antibodies, yet high concentrations of humira within your blood then increasing Humira dosing is pointless (you've got sufficient humira and it isn't doing what is needed). That essentially means you've likely failed Humira (and possibly all tnf-alpha-blocking biologics) and I would go to entyvio. As entyvio is a different biologic with a different mechanism of action. There's hope that using a different method of action would be better for you, and produce a sustained result.

3.) If you have high antibodies, and zero concentration of humira within your blood then consider Remicade or Simponi which are all within the same class of tnf-alpha-blocking biologics. You did get a response from humira, another medication in the same class is similar enough to get a similar response, yet different enough at a molecular level that entirely new antibodies would have to be developed for remicade/simponi and there's no guarantee that'd ever happen.

Y’all have all been so helpful.. sounds like UT southwestern will be my next go to!

I will still keep on with my current GI and hopefully get some good news next week. I’m open to keeping up with Humira as I like the independence of the self injections. I don’t think I’d like infusions as much. But if i have to do it have to do it.
I feel like the hair loss also isnt the worst side effect possible, and that’s really all I’ve gotten other than mild ezcema.
My doc mentioned avoiding the sun as well while on it, which seems impossible in Texas but hopefully I don’t have any adverse effects from that either.


It’s nice just to hear every else’s experiences. I was very very hesitant to try and biologics until this year so this is opening up a whole new chapter for me.

I received my test results from Prometheus. I do not have an antibody built up and I do have normal amounts of Humira in my system.
My current doctor said she isn’t sure why I would lose my response. She suggested doing a flex sigmoid scope to get biopsies to test for a virus called CMV (cytomegalovirus) ?
Have y’all ever heard of anything like that before?
Is it a common test?
Also what do I expect from a flex sig scope? Is it just like a colonoscopy ??

Is it painful? This may be TMI but after being in flares for so long and progressive diarrhea I have hemorrhoids pretty bad as well and it’s pretty sensitive down there
I’m kinda nervous about it being more painful for that reason..

Especially since the rectum will be involved no matter how high the extent....
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