Humira worked like a charm 1.5 years...now what?

Sorry to hear you are flaring. We all flare eventually, regardless of treatment and even when we follow our treatment with a religious-like-zeal. You might just be having a flare that you will easily bounce back from, and those do not mean anything has failed. It's just UC, we go through periods of flares and remissions.

I would contact your gasteroenteroligist. I would get a stool test for possible infectious explanation of your current symptoms (things like c diff can sneak up on us, and we are more prone to it). I would ask for a test to determine your current inflammation levels endoscopy (a colonoscopy or flex-sig), a FCP stool test, and/or a CRP blood test would give you some data to work with. I would have him/her review your medications and dosages, and see if additional can be added to help you recover from this flare.

I suggest getting your Humira levels checked to see if you have developed and antibodies. If not you may benefit from going to weekly shots. Are you using any rectal meds?

I second what poopydoop said -- use your hard earned money with your GI

Hi, Thanks for the 3 responses...having computer problems so cannot reply individually -

ipoop - Thank you for your advice, and your empathy is well received. What a sucky disease. I wrote every bit of information down and have left a message at my gastroenterologists office, awaiting a call back.

CCinPa - ditto...forgot I used to take enemas....that might help - is there one is particular thats worked for you?

Sara14 - curious...shows your a Veteran member...is it really ok sto just jump to another biologic? I've been (with no education) looking at Remicade as a last stop if/when Humira stops working.

My gastro. did say at beginning of taking Humira he would want me to start another med at some point because the antibodies would build up. I hate this. I hate the disease worse (sorry to be so negative - just being up front and its been too much for too long) But I don't want more meds unless I have to and told him so...knowing at the time we had months before discussing. I feel like I'm killing my body in a way by managing this disease. I've been so lucky for 1 1/2 year - zero side effects - perhaps - because a couple molnths ago developed a rash on my face, now its on my neck. Finally seeing a dermatologist Monday.

In general - curious about the attitudes about integrative doctors. They are doctors right? I have no doubt many over test - I would do a pretty vigilent search - why do some of you think they would be a waste?

Thanks for your feedback.

I harp on about it but bupropion is another option - lots of people with UC see improvements when they use it. It's off-label use though so don't expect your doctor to know too much about it.

" We all flare eventually"

please don't include me in that ridiculous statement -

Ive not had to go on biologics yet so I am not the most knowledgable person about that class of meds, but I feel like others here have switched from Humira to Remicade. I know people have gone on to other meds like Entyvio after Remicade or Humira failed them. IPoop would be a better source of knowledge regarding biologics.

I have had great success with Rowasa enemas for 12 years now. I don't believe holistic "doctors" are helpful or know what they are doing...waste of your money. Plus, "natural" treatments aren't regulated by the FDA. I understand not liking taking medication, but unfortunately, our bodies are destroying themselves with untreated UC, so we have to accept that. I agree, this disease totally sucks, but all we can do is try to keep the inflammation at bay the best we know how to reduce our risks of cancer and improve our quality of life.

TroubledTurds said...
" We all flare eventually"

please don't include me in that ridiculous statement -

UC is disease characterized by periods of flares and periods of remissions. If you haven't flared over multiple decades then you do not have UC, rather you have a misdiagnosis.

Ok, I'm blown away and so incredibly grateful for all of your support...it helps so much...this is such a dismal disease that no one really understands unless they have it. As to actual advice am again lump summiing my response...
First I'll state up front that I am close to terrified of being taken off the Humira. Even though am having a small (so far) flare. I was living a living hell before and this gave me my first freedom - coincided with my daughter moving out/no more responsibility there...traveled some, go out and take the long hikes I've wanted to without worrying at all. It sounds like some GI's take folks off these biologics IF say the dermatologist declares this is a Humira induced rash, AND my flipping flare - and of course GI didn't call back yesterday so I need to wait to even get the necessary lab work done....Scared- ipoops comment that can sometimes stay on the biologic while taking intermediary drug gives me hope..on to facts

Yes, took mesalamine enemas before and may still have some- will go searching.
Yes, I agree about integrative docs I suppose those thoughts were more for my hormones, thyroid issues...and with the hope of finding one very experienced with GI issues - but yes, guess I'll pass for now. Yes - in past I tried macrobiotics, anthroposophical medicine (talk about complicated and expensive), alllergy elimination (may have helped), gluten free diet.
What DID help was with a pretty severe flare around 2010 or 2011 I did the GAPS diet as if my life depended on it...lost 30 lbs...didn't help for months and then my flare went away. A colonoscopy at that point showed the least active inflammation I've had since 30 years. So I believe there's something to it. Unfortunately I went off diet and then flared - badly ever since ; one point I started GAPS again but it didn't put me in remission again i- until a year and half ago when started the Humira. Until now.
I am currently trying to get back into GAPS diet - bone broth, the whole thing. I didn't go too far off so shouldn't be too hard.

I'm taking Mercola complete probiotics. Basically I have the urgency (taking immodium regularly as refuse to stop my life again), and this liquid gross brownish stuff comes out - don't even know what to call it - some form of diarheah.(sp), plus farting sounds...just the whole uncontrolled stuff. First time I've lived with a man (n a small home) and had a flare up. Should be interesting.

Is buprophren same as wellbutrin? I'm actually taking that to help me quit smoking.

A couple things wonder if triggering is 1. winter (read on some forum lot of people stopped flaring when moved to warm dry places), 2. the lessening smoking - there is a scientific correlation. Doesn't really matter though what causes it...3. Cheating significantly with food (eating reg wheat bread/going out to eat....def. a trigger for me - my GI once said I might have IBS with UC)

Are Rowasa enmeas the same as mesalamine?

Thanks again folks...hope my GI doesn't take me off. And hope this goes away. Hope my icky rash on my face goes away. Hope all of you are well and doing ok with your protocols...Happy Day

"Are Rowasa enmeas the same as mesalamine? " Yes, Rowasa = mesalamine. Rowasa is the common name in the usa for a mesalamine enema.

We're more prone to getting rashes as uc patients. We can get psoriasis, eczema, and contact-dermatitis. Search google for images of each of those and see if the image matches what you have. These rashes can be unrelated to our UC and unrelated to our medications.

Is the face-rash butterfly shaped? Lupus gives butterfly shaped rashes (on nose and each cheek).

I've had contact-dermatitis before.

Make sure your doctors consider lupus.

"Lupus Symptom: Butterfly Rash. A tell-tale sign of lupus is a butterfly-shaped rash across the cheeks and bridge of the nose. Other common skin problems include sensitivity to the sun with flaky, red spots or a scaly, purple rash on various parts of the body, including the face, neck, and arms."