Humira for UC?
March 8, 2012 11:31 AM   Subscribe

Should my husband take Humira for ulcerative colitis?

I am finally asking a YANMD question:

My husband is having a major acute flare up (first diagnosis) of ulcerative colitis. He is on 40 mg of prednisone; he was on some type of enema for medication delivery that he has since stopped; he is taking canasa; he is taking lialda; he is taking a prescribed probiotic; he has had a colonoscopy. His sharp abdominal pains have stopped but all other symptoms remain and he is in week 6 or so of this: he's losing weight that he can't afford to lose, his personality has shifted, he's unclear and unfocused, I'm not even addressing all of the uglier symptoms... (I'm sure these are all symptoms that are common to acute sufferers but it's very unnerving to watch and seemingly horrible to experience.)

His doc has done TB test to start him on Humira but we are nervous that it's not the best next step. I'm overwhelmed by information or shady "information" about ulcerative colitis on the internet. I trust mefi; I'm looking for advice, experiences, links (other than and ones mentioned in this post) that may help us make this decision and/or guide us to self-advocate for a different next step with his doctor (eg, immunomodulators?). Prior to this flare up, he was overall a very healthy, very active, 37 y o. if that helps with background info.

Thanks in advance.
posted by rabidsegue to Health & Fitness (19 answers total) 3 users marked this as a favorite
I take Humira for ankylosing spondylitis, not UC (although they sometimes go hand in hand, not in my case). I don't know what your particular concerns are about Humira, and obviously can't address UC specific concerns.

But if you are concerned by the dire warnings on the box, please do not be. Taking any of the biologic drugs does lead to a suppressed immune system. For me, that has meant I had a UTI once, which I had never had before, but otherwise in the 3 years I've been on biologics, I haven't even had more colds than I used to. And for me, the near-remission of the disease, which for me means the lifting of disabling pain and fatigue, has been completely worth 1 UTI in 3 years.

Yes, they are serious medicine. But these diseases are serious and the consequences of them not being treated properly can be disastrous.
posted by hydropsyche at 11:41 AM on March 8, 2012

IANAD, but I worked for a year in a firm that dealt with Humira, specifically for Crohn's disease. I would suggest getting another opinion or two - specifically from a gastroenterologist. I have heard that true Crohn's is sometimes difficult to diagnose. Humira has serious risks but can help some people with some bad problems. Not something to consider lightly.

Get in touch with a real gastroenterologist MD immediately. Good luck.
posted by jeff-o-matic at 11:41 AM on March 8, 2012

Re: jeff-o-matic above, I hope that the "doc" you mentioned is a dedicated gastroenterologist. If not, you should absolutely be consulting regularly with one before you make any decision on long-term treatment.

Assuming that you are, having recently gone through a pretty similar process first with Remicade and then Cimzia, the big thing I learned was that biologics all have risks, and you should absolutely be on the lookout for side effects after he starts the treatment, but they can also get very real results. Humira is a reputable drug and I've spoken with a decent number of people that it helped. If your GI specialist is saying to give it a shot, it's worth listening.

The OTHER big thing I learned: Biologics are freaking expensive. Check and see if the company that makes Humira has a financial assistance plan for new customers (I haven't looked into it, but both Remicade and Cimzia do, and it'd be strange for the third part of that trinity not to follow suit) - without it, I guarantee you will be paying a huge amount out of pocket.
posted by Holy Zarquon's Singing Fish at 11:49 AM on March 8, 2012

Response by poster: Yes, just to clarify, he's on his 2nd GI doc, not a primary care physician.
posted by rabidsegue at 11:52 AM on March 8, 2012

Like gilrain, I have PA, and I take Enbrel (but they are similar - my doc and I talked about Humira, I don't remember why we chose Enbrel).

I would basically echo this:

But if you are concerned by the dire warnings on the box, please do not be. Taking any of the biologic drugs does lead to a suppressed immune system. For me, that has meant...

...nothing that I noticed. Maybe a longer cold once I get it. And this:

And for me, the near-remission of the disease, which for me means the lifting of disabling pain and fatigue, has been completely worth [it].
posted by Pax at 11:56 AM on March 8, 2012

I will say that Enbrel costs me $300+ per month ($1000, partly covered by insurance), which I pay for through my FSA for now (FSAs will be limited to $2500 starting in 2013).
posted by Pax at 11:57 AM on March 8, 2012

It's worth noting that many other drugs for UC will also suppress the immune system, and that some of them also carry similar risks in terms of cancer. While the risks of biologics are non-trivial, the traditional drugs also carry significant risks.

You and your husband should discuss the advantages and disadvantages of these therapies with his doctor. But at this stage the main goals will be inducing remission and moving to a steroid-sparing therapy, and as I understand it, biologics are now considered the first line therapy for inducing remission.
posted by jedicus at 12:14 PM on March 8, 2012

Oh hey, that was my post you linked to.

So, I have Crohn's, but I now take Humira. In that last post, it said that I was taking prednisone and 6MP. I taped off the prednisone and that was fine, but I had bad reactions to the 6MP (mercaptopurine - an immunomodulator). My GI said that since I reacted poorly to that (it was pretty much like having flu/food poisoning), I also probably wouldn't do well on Imuran, which is very similar. Certainly, taking a pill is easier than injection, so it may be worth discussing.

They recommended Humira - others have already mentioned how it and other biologics are rapidly becoming the go-to treatment for IBD. It was also mentioned that Humira is easier for you to deal with on your own as compared to Remicade infusions, in terms of being able to inject at home after the initial introduction phase.

I have not had any issues with Humira that I can discern over the past few months. I'm no longer losing weight and the arthritis/mouth sore issues haven't returned. The other fun "issues" of IBD haven't disappeared completely, but they have been greatly lessened. My love of hot sauce probably doesn't help there. I should also mention that my mom takes Humira for RA and it seems to work well for her too.

The only problem with Humira is that it hurts like a mofo to inject, but I just pretend that I'm Starbuck or something, stranded on a planet, having to inject anti-radiation meds. I have the pen, so even an anti-needle person like myself can do it pretty easily.
posted by stefnet at 12:27 PM on March 8, 2012

Jedicus, that's what I saw with my fiancee's Crohn's as well. The treatment for a flare-up as we experienced it goes something like this:

1)Steroids to stop an attack right now.
2)Diet/lifestyle adjustments to minimize damage and further pain.
3)Biologics to induce remission.
4)If biologics fail, surgery.
5)Long-term diet/lifestyle adjustments to prevent further flares.

There are non-biologic treatments to alleviate a flare-up (we tried Asacol), but they are not considered particularly effective, and surgery shouldn't be anyone's first option if they can help it.
posted by Holy Zarquon's Singing Fish at 12:28 PM on March 8, 2012

Gilrain - yes, I should clarify: it stings when I inject into my leg, but is no big deal in my abdomen. So it's totally a personal thing that may even change on parts of your own body and that point shouldn't stop anyone from taking something that could vastly improve quality of life.
posted by stefnet at 12:57 PM on March 8, 2012

Well, I can't speak to Humira or ulcerative colitis specifically, but I take infliximab (Remicade), azathioprine (Imuran) and Pentasa (Asacol) for Crohn's disease, and it's definitely infliximab (the biologic) which was the 3rd line of attack, and the one which got my Crohn's into full remission. Without any noticeable side effects (unlike the azathioprine, which does proper biochemical (for want of a better word) stuff). My thoughts are that a biologic's going to be a whole lot better than normal pharmaceuticals in terms of side effect profile.

I can certainly send my sympathy to you dealing with a loved one suffering from an IBD. It's unpleasant stuff. I'd have no qualms in recommending wholeheartedly the Humira, because life with IBD in remission beats the crap out of life with your IBD active.
posted by ambrosen at 1:00 PM on March 8, 2012 [1 favorite]

I can't comment too much on the Humira that you're asking about except to say that while the pathways the biologics interfere with are no joke in terms of seriousness, the clinicians I've encountered seem relatively unconcerned with their side effects, so my take is that they don't see a lot of longterm problems from them. But once you have good information on that side, it must absolutely be weighed against the effects 40 mg of prednisone daily. The side effects of it, especially long term at high doses, are not trivial either. While I was taking that dose, I was soooo thankful that it existed and could relieve my symptoms -- I don't mean to say anyone should avoid it if they need it. However, as soon as I could stop taking it, I vowed never to take it again. I wouldn't be surprised if part of your husband's mood and awful feeling are partially side effects of the prednisone. If biologics were the only way I could get off longterm prednisone, I would totally take them.
posted by Tandem Affinity at 1:01 PM on March 8, 2012

Oh, and wait, I mentioned the trio of drugs I'm currently treated with: I left out prednisolone (the normal prescribed form in the UK). I very much decided that I really didn't need to have any more of that after I found that, to put it mildly, the psychological side effects were making the costs outweigh the benefits. Mood swings and, well, manic enough to make me feel an unsafe driver.

So I'd be even more wholeheartedly behind the Humira being the 2nd least side-effect prone option (and it should probably be used in conjunction with the Asacol anyway).
posted by ambrosen at 1:17 PM on March 8, 2012

My husband's been on Hunira for a couple of years now to manage Crohn's, and hasn't noticed any side effects. He did have a recent nasty flare up and ended up on 13 titrated weeks of prednisone-now THAT was a special kind of hell for everyone in our house, especially him.

He never complains about the pain of the injection.
posted by purenitrous at 1:19 PM on March 8, 2012

My sister is a nurse and has been on Humira for UC for about a year. It has been honestly pretty amazing and has completely changed her quality of life for the better. Because she has constant contact with unusual germs (including TB) at work, she was pretty nervous about the biologic's side effects, but has not found herself sick more often at all. The meds sound scary, but honestly, life with uncontrolled UC is pretty awful and she thought the relief was was worth the risks. Taking Remicade first and then Humira was a big decision for my sister, but now she would recommend it in your husband's situation for sure.
posted by mjcon at 2:18 PM on March 8, 2012 [2 favorites]

I had uc twenty years ago. I had one acute phase where I required hospitalization and intense steroid treatment. I have had no symptoms in twenty years. Here are some tips that worked for me:

--tobacco (indicated in the literature) (I no longer take tobacco)
--high fiber diet
--stress management
posted by No Robots at 3:01 PM on March 8, 2012

People vary a lot especially around the immune system. I took pentasa for Crohn's disease and it never did jack for me, 6 mercaptopurine worked great until it started destroying my liver. I'm on Humira presently and it works, but I don't like the injections. Hurts like a mofo for me. I read an interesting paper about a correlation between Naltrexone and Crohn's flares. A friend of mine who is a doctor in a walk-in clinic has seen it first hand in patients that were addicted to pain-killers (usually from being over-prescribed to treat Crohn's flares when other medications weren't working or they couldn't afford them) and were using Naltrexone to wean them off the opiates. Oddly enough, Naltrexone is dirt cheap compared with Humira.
posted by plinth at 8:53 PM on March 8, 2012

IANAD. I have UC. I have never taken a biologic. I take azathioprine and Lialda and cyclosporine. The cyclo is for a different autoimmune disease.

I think your GI is favoring biologics because they are fast and effective at inducing remission. Azathioprine and 6MP take a while to start working. Most GIs I've talked to have said they don't really use cyclosporine for IBD. In my experience, the cyclo only helps a little for my UC.

Six weeks with the symptoms you describe is pretty rough. What is it you are most concerned about? These medications aren't benign but neither is the disease.

In any case, you should definitely talk to the doc about it.

By the way, I've always found the Healing Well UC Forum to be full of helpful people.
posted by aloysius on the mixing boards at 9:00 AM on March 9, 2012

Response by poster: I just wanted to follow up and say my husband is starting Humira tonight. His pain is unbearable at this point and he needs something that will work ASAP. We couldn't have made this decision with such ease if we did not receive the truly insightful and thoughtful comments from all of you here (as usual). Thank you for making this decision easier for us and for helping us to feel at peace with it. I can't mark a best answer, you all deserve it.
posted by rabidsegue at 4:58 PM on March 16, 2012 [2 favorites]

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