"Noncompliance" with prescription drugs biggest cause of flares

In the last couple of days/weeks, I have seen this mentioned a lot here in the forum: that noncompliance with your regular meds is the biggest cause of bigger and badder flares.

I was wondering if anyone has any research/article citations backing this claim, or it is mostly from personal and anecdotal experience?

I have been thinking about this statement over the last couple of days and wondering. Thanks!

In my case, it hasn't led to flares. I continue my meds and still suffer from ups and downs. I can't say what would have happened if I stopped them completely. I have tried to cut back with bad results but I've always gotten back on track by going back to the dose that i needed,

For me personally med non-compliance led to severe flaring and advancement of the disease. This was a long time ago, but I was originally diagnosed with UP. We lost our insurance and I was on Asacol at the time. There was no way I could afford my meds. It was feed the kids or pay for my prescriptions (no brainer). I tried Sulfasalizine and found out that I'm extremely allergic to sulfa.

So I went about 6 months with no meds. Not only did I tailspin out of control but it became extremely difficult to control the symptoms and my UP advanced to Left sided.

Yes, people will flare even when they're on meds. But, studies do show that you're much more likely to flare when you're noncompliant with meds. Here are some more snippets from studies:

Long-term mesalamine maintenance in ulcerative colitis: which is more important? Adherence or daily dose.
Conclusions: Our data show that when starting a patient on mesalamine, there is no difference in the long-term flare risk between low versus high average daily dose as long as the patients have a high to moderate level of adherence.

Long-term oral mesalazine adherence and the risk of disease flare in ulcerative colitis: nationwide 10-year retrospective cohort from the veterans affairs healthcare system.
RESULTS:
We included 13 062 patients into the analysis with median follow-up time of 6.1 years. Percentage of patients with high adherence was 47%, 43%, 31% as identified by CSA, MPR and CMG respectively. Low adherers had a significant increase in the risk of flares compared with high adherers (Hazard ratio: 2.8, 1.7 and 1.8, P < 0.001 for CSA, MPR and CMG, respectively). Compared with other adherence indicators, CSA offered the best trend in predicting disease flares.
CONCLUSIONS:
Long-term high-adherence level was lower than previously reported. Adherence was a significant factor in predicting disease flares. Pharmacy adherence indicators may be useful to healthcare providers in identifying patients at high risk of exacerbations.

New keys to maintenance treatment in ulcerative colitis.
Over a 12-month period, patients who are non-adherent to 5-ASA maintenance therapy have a 41% relapse rate, compared to 17% in adherent patients.

Anyway, I think that absolutely, yes, noncompliance with meds is a HUGE reason for flares, and it's supported by lots of research data. The idea that they get worse if you're not compliant with meds is more of something I've seen here. I've seen several people say that they've gone off mesalamine because they were feeling so well, then it didn't work to control a future flare. I don't know of any studies that have been done to compare mesalamine failure rates between those who are compliant vs. noncompliant. However, since the risk of long-term side effects from mesalamine is quite low, if you tolerate it well, I think it's definitely risky to go off of it. Also, your disease is more likely to progress (ie, involve more of the colon) when you're noncompliant with meds, which does make it harder to get back under control.

This is like taking the red pill or blue pill. We can take take the red pill, continue suppressing the symptoms, but for how long? How long can we go through the ups and downs of the disease and continue using medicines as a crutch? All it takes is one stressful episode or one bad food choice for the disease to rear its ugly head again, even for those religiously taking medications. I flared while both on and off medications, so it was a major red flag that something else needed to be done or explored further.

Can we expect them to continue working? The data indicates that gut dysbiosis and various problems still exist when people are in remission, so that made me a little jaded about the whole notion of medicines as worthwhile. This dysbiosis also increases the other spectrum of problems like cancer risk, cardiovascular disease and various autoimmune conditions. If there's one thing I've learned about medications is that there is never a free lunch.

It's very understandable that many people don't have he luxury to get off their meds. Fortunately, I had this chance four years ago, but it was also very inadvertent, and I didn't have the knowledge or data to take on the burden. I did suffer heavily, but in some ways, I'm thankful because it gave me the opportunity to come to my own conclusions in regards to the root cause of the disease. It allowed me to address many other components that I wouldn't have otherwise addressed.

When a teenager (the most at risk population for non-compliance) gets off his medications, I don't see it as noncompliance but rather more as a rebellion. In a way, it's questioning authority and asking "why do I need to be on some pill for the rest of my life?"

I would never recommend my approach to anyone by the way. Just for those who want to think a little outside the box here. ;)

stealthguardian, if I read your post correctly, I think I agree with you.

Unfortunately, it seems we're all stuck in a vicious cycle. And there's no blueprint that's clear and easy to read that says "hey, you! Do this: XYZ, and your UC will go away forever!" Everyone is so different. Everyone reacts to meds differently, everyone's UC is different at different times, we comply or we don't, we choose the red pill or the blue pill, we have great insurance or no insurance, we try to make good decisions based on our own place and time.

My Apriso is blue.....
;)

I really think this issue is also a reflection of Doctor/Patient communication. I had a hard time taking medicine when I was first diagnosed with proctitis. I was young, had very young children, and had never been sick before. Heck, I was reluctant to take medicine fore a cold. Not only was I not properly prepared for the mental aspect of medication, I was't really informed about my condition. I am thinking something like, " It is really important that you give this medicine time to work, and stick with it long enough so that we can get a hold on your situation. right now you only have minor symptoms, but this is a cronic condition that in incurable at the moment. You should look into things and even though you might read that only 20% of cases will progress or not go into remission you should assume that could be you, and the seriousness of this. The side affects you read about will probably scare you, and the mind is a powerful thing. Even if you start to think you are having side affects try to relax. I believe you that your hair is falling out from the Canasa, even though it is an extremely rare side affect, but lets stick With it for at least a couple of months to see if the bleeding stops. If you have trouble remembering to take it, here is the number of someone who can council you.......etc."

I have thought that for a long time, always wondering if I coused my situation to get worse...... just realized I didn't take my meds yet......

I've been lucky lately in getting GI's that credit me with having some sense. They're more than willing to let me keep a small supply of rectal meds on hand to use at the slightest hint of a flare (even if it's just IBS.) My first GI wouldn't prescribe them, even after I insisted. I changed doctors.

That said, as a former healthcare worker I know how many people are "non-compliant." (Lordy, how I hate that term.) Reading here we can see how many people are anxious to try anything other than medications. Somehow it makes us feel less "sick", I guess. Denial is a powerful adaptive tool that often serves us well, but sometimes trips us up.

Allswell's post sums it up best for me.

When I was first diagnosed, I was in denial. No, I don't think it was even that: I just didn't know any better. I felt fully well and had no symptoms beyond diarrhoea 1-2x a day. All I was told was I had Crohn's disease. Nobody explained a single thing to me beyond that. I was just handed Pentasa and left to get on with it. And when I couldn't take the Pentasa (because of intolerable side-effects which mimicked a bad flare-up), the doctor showed no concern and prescribed me another form of mesalazine, which I also could not tolerate: this scenario must have played itself out at least 3-4x more times over the next few years.

Nobody explained to me I had a chronic condition; that it could get worse if I left it untreated; the importance of controlling the inflammation; and so on. The internet didn't help; to be fair, I wasn't looking into it too deeply. But the medical sites I looked at weren't really any help either: they all had the same generic list of symptoms of Crohn's, most of which didn't apply to me. I honestly felt for years that I might have been misdiagnosed.

I don't know about anybody else, but I felt like my original doctors treated my Crohn's as though it were of no more significance than the common cold. I wasn't compliant with meds because of intolerable side-effects and I didn't know that Crohn's could silently progress. It was as simple as that. Of course, a doctor could have given me an hour-long lecture on the importance of taking your meds and I still might not have done it: I do appreciate that possibility. But I was never exactly given the chance to find out.

That's what I never liked about the terms "compliance" and "non-compliance." People living with health issues are not children who need to be "compliant" with what the health professionals tell them. We are adults, capable and competent to make our own judgements and decisions and to enjoy the successes or consequences of those decisions. I was know as the nurse who would say "(Name) declines (name of medication) because ___"

Writing this both as the patient and the former provider.

I was not compliant for the first year or so that I had "this." I didn't have a diagnosis, so I didn't even have a chance to self-educate. Nobody told me the Lialda/Apriso they gave me was to be taken for life. I didn't know why I was given an Ulcerative Colitis medication, when I was told that I did not have UC.

Since diagnosis, I've been very compliant. Granted, Remicade is a little harder to forget, and my GI will call me if I ever have to move an infusion.

I wonder what other factors could be involved that would effect the study's outcome? It's possible that people who are "non-compliant" with meds could also have let their diet go to hell, since the symptoms aren't there to remind them of the importance of eating well.

I don't dispute that there could very well be a relationship between non-compliance and higher incidence of relapse (hate that word as it reminds me of alcoholics going off the wagon), but certainly there could be other factors involved.

This actually reminds me of a question I've meant to ask here: are there people who were originally diagnosed with UP, say 20 years ago, who remained med-compliant, and whose disease didn't spread?

Post Edited (artvark) : 2/19/2014 10:13:48 AM (GMT-7)