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Crohn's Disease Forum » Treatment » Humira/Adalimumab » To Humira or not to Humira, that is the question.


10-18-2014, 08:18 AM   #1
TeacherMama
 
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To Humira or not to Humira, that is the question.

I'm looking for advice and your experiences. I'll try to make this quick:

Diagnosed with very mild CD in 03. Was fine and drug free for years. Had my first official flare 2 years ago that ended in removal of 13 inches of bowel, appendix, and part of my colon. No drugs after that because I refused them. Felt amazing and even had a baby after that! I'm now 5 months postpartum and my latest colonoscopy reveals microscopic inflammation. I mostly feel fine except I now have psoriasis on my hands and scalp. It's not horrible, but it can itch like crazy at times.

I"ve mostly kept my CD under control with supplements and diet. My new GI says it's time for Humira to keep things stable and to avoid a future flare. I'm not wild about this at all. (Who is?) I honestly don't feel so terrible enough to warrant this heavy drug, yet I totally get that CD can sneak up on you and a flare can happen.

I prefer natural therapies, overall. I'm 39 with two lovely children and I don't want to get on the Humira train, to be honest. But maybe it IS time?? How long do people typically go on it? For life? My GI wants me to couple it with 6 MP but I seem to remember that one in my flare and it made me feel super sick.

Thoughts? Experiences? I'm thankful for this site and for others who do share. I know CD is a little like a sky of snowflakes- our disease presents differently, but I still like to know what others have experienced.

Thank you in advance,
TM
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Diagnosed with CD 2003
Very mild symptoms 2003-2011
Flared from October 2011 - March 2012 resulting in ileocecectomy in March 2012
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10-18-2014, 10:40 AM   #2
alex_chris
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Hi there,

Many people initially reject the conventional long-term treatment for Crohn's, that is biologics and/or 6mp/aza, but at least in my experience the majority of people who got problems or had surgery eventually use the standard long-term drugs because their life is impacted moderately or severely by Crohn's symptoms (be it diarrhea, fatigue, bloating, pain or required surgery that they do not want to repeat).

As you have said, your colonoscopy showed inflammation, that might be subdued because you have little or no symptoms, but it's there. That's unfortunately the nature of Crohn's, for most people, even if diet, supplements, sport, stress relief and lots of other stuff helps them and has helped them, some inflammation is present... which leads to scaring, which leads to strictures, which eventually leads to surgery. Not for everyone, but for some.

I was diagnosed in 1999, it was also called "mild" and was prescribed pentasa (which doesn't do anything for Crohn's) and generally tried to cope with diet. As you had, I had about 60cm of small bowel removed back in 2003. At that point, the decision for long-term meds wasn't biologics vs. 6mp/aza or a combination, but the standard was 6mp/azathioprine as humira wasn't around and remicade was only used for really severe cases. So I was on aza for several years, and in combination with sport and diet, it generally worked ok (although my dosage was too low, which I only realised years later).

The wisdom back then was that you stay on aza max for 4-5 years and try to get off it if you can stay in remission long-term with it. So in 2008, I stopped aza and was off drugs (just supplements) for 2 years, but got into big troubles again in 2010, which was partially caused by severe iron deficiency and malabsorption of protein. The reason why at that point I did not change to a biologic like humira or remicade was, because my GI at the time said if aza worked for years, then let's try it again. I got Crohn's somewhat under control, but had some more problems until the beginning of 2012 when I finally got iron deficiency and protein deficiency under control via supplements, iron infusions and liquid supplemental nutrition and have been on aza since then.

Because I felt very good the last 2 1/2 years, I tried to phase out aza again this March and stayed off it until about June, but had some problems again and started aza again. since then, no problems.

Long story short, in answering your questions, a. you stay on drugs like humira or aza/6mp long-term if they work for you, but b. you can definitely get off them again, but I suggest you keep in mind that you might get in trouble again if you do that and c. I personally prefer to be on a drug like aza, have blood tests every 4 weeks and be in good long term remission without risk of potential surgery (all knowing that aza can have side effects) than have constant inflammation and go all natural - but I will still try to get off aza again next year and will see if it works this time around. That might be a weird contradiction (arguing for using biologics or 6mp and at the same time saying I will phase out aza myself), but I don't see it that way - I believe you and your body sort of learns how to deal with Crohn's long term even if you are supported by long-term drugs and that eventually if you have managed without any symptoms or inflammation for years, you can then get off the drugs again and can potential still manage Crohn's long-term.

Lastly, on humira vs. 6mp/aza or the combination thereof, there are various studies on the subject and there is still debate what of these three options makes sense for what type of patient. The American Gastrointeriologic Association Guidelines on Crohn's that have been recently updated would probably put you in the high risk group, as you have had surgery and complications and have been diagnosed before age 30 and would start with humira mono therapy with 6mp to be added if humira does not work to put you into remission. http://campaigns.gastro.org/algorith...orithm_web.pdf
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Crohn's diagnosed in 1999
On Aza from 2003 to 2008 and from 2010 again until Today
60cm of smaller intestine removed in 2003
Vitamin therapy with D3, B6, B12, magnesium, zinc, folic acid for years
Iron therapy with Tardyferron 80mgx2 and Loesferron 80mg for years
Yoga, running, freeletics on the sport side!
10-18-2014, 10:45 AM   #3
DJW
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Hi TeacherMama.

Fro my experience: I had a very long remission without drugs (wouldn't advise that). Two years ago I had a blockage and perforation. I'd had that from scare tissue in the past. This time the surgeon found crohns had returned. I had no intestinal issues. Felt fine. In retrospect I did have some EMTs but nothing stood out. I'm now on remicade.

I learned first hand inflammation can silently cause serious complications.
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Dave
10-18-2014, 09:24 PM   #4
my little penguin
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DS has been on biologics for over two years including humira for 1.5.
Not real issues
6-mp caused more problems then the biologics ever did .
It's all about risks vs benefits.
Crohn's is known to be silent which means potentially more lost intestine.
You can live without a large colon but can't live without a small bowel.
Those are the facts
Also it's known that once you have surgery the odds are in your favor of needing a second surgery
The only type of drugs proven to change the natural history of crohn's ( surgery risk ) are biologics .

Not saying you have to take humira but I am a firm believer in biologics since right now they are the best chance I have at keeping my kids intestine as healthy as possible for as long as possible .

He was dx at 7 and is 10 now.

Good luck with your decision
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10-19-2014, 02:20 AM   #5
alex_chris
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The only type of drugs proven to change the natural history of crohn's ( surgery risk ) are biologics.
Penguin, this statement is a bit misleading. The AGA guidenles still say that 6mp/aza monotherapy are the preferred and recommended course of action for steroid induced clinical remission. Biologics are used if there are certain additional risk factors, if there has bren a surgery, if 6mp/aza have failed, if the person is not in remission and steroids aren't helping the patient to get there, age of patient, severety of other compliacations etc.

Also, it is actually 6mp/aza which have been proven to change the natural history of crohn's (10+ years) through many studies, while biologics haven't been in widespread use that much, e.g. There isn't even any long term data for humira yet because the drug was only widely introduced 6 years ago.

To sum up there are good reasons to go for 6mp/aza monotherapy. Both 6mp/aza and remicade/humira have various sideeffects and we can debate which are worse, but from a "top up" or "top down" perspective, 6mp/aza is clearly one notch down below biologics in terms of severity. Having said that, it depends on the individual, the associated risk factors, the state he is in etc., but to be clear 6mp/aza has changd the natural course of crohn's for many thousands of patients since the 1990s.
10-19-2014, 07:50 AM   #6
my little penguin
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I will find the studies but basically the rate of surgery has not decreased with 6-mp but has when biologics are used -again these are pediatric studies so that probably is the difference since pediatric Ibd tends to be more severe and changes location and type for 10 years after dx.
10-19-2014, 03:38 PM   #7
alex_chris
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I will find the studies but basically the rate of surgery has not decreased with 6-mp but has when biologics are used -again these are pediatric studies so that probably is the difference since pediatric Ibd tends to be more severe and changes location and type for 10 years after dx.
Sorry, but that is just not true for the general Crohn's population.

From googling 30 secs, one example: http://www.nature.com/ajg/journal/v1...g2009673a.html

CONCLUSIONS: Long-term maintenance treatment with AZA/6-MP reduces the risk of surgical recurrence in patients with CD. We also identified smoking as a risk factor for surgical recurrence.
10-19-2014, 10:11 PM   #8
Miss Underestimated
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I can repeat the stories above. Ihad undagnosed Crohns, which amounted to self-treatment of symptoms. Treating the symptoms and managing to live my life even though I had "something" ended up with me going in through the ER with a perforated bowel, infection, and major surgery.

After waiting to see how i was after surgery, the inflammation progressed. Over time, a couple of medications were tried, then a I took Entocort for over a year while the Doc had several studies done to see whether Humira would work for me, what kind of Crohns I had, etc. After all the tests were done, I agreed to the Humira. I've been taking it since Jan 2012. A little over a y ear ago, he added 6MP. I was afraid it would make me sick, but I didn't have any side effects at all.

I still have a few ups and downs, I have a few other issues and some of that medication complicates my Crohns problems - for the first time in about 25 years I've had to deal with constipation. That has been a switch-up.

Crohn's is silent. It will progress and you don't know it's happening. It isn't straight-line "everyone takes this medicine for that symptom." If only... It's complex, often tied into other autoimmune conditions, and we all are kind of feeling our way along. Researchers are studying, there are new drugs being worked on and tried.

I would encourage you to listen to your doctor. Assuming he's experienced, and has good people around him. And he should listen to you - tell him your doubts and write them down so you don't get off track. I think I'm kind of known as a hard case (I question everything), but I want to know for sure that I'm making the best decision I could possibly make with the information available.

Do some serious research on your own, take your questions to your doctor, and then decide. But don't write off medications that are holding this disease at bay for many of us. That's all it's doing, but I think, for me, it's better than the alternative.

And ask about the tests they do before prescribing Humira - you might have to pay for them, depending on your insurance company. I was fortunate that my insurance covered them, but I would pay if I had to. They can get a good idea what will happen with the Humira. I don't have side effects. I think I went through a time where I kept expecting something, and maybe that felt bad, but the only real side effect I had the entire first year was that my legs would feel a little heavy for a few days after an injection. I've seen others say the same thing.

In the end, it's your body and your life, so be honest with your doctor about how you feel and keep in mind what you read here. We're all in the same boat. We have to weigh the benefits against the risks, and decide for ourselves. I like to think my doctors make suggestions, and I make the decisions. Unless I'm unconscious, of course.
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*Sick since 1987; managed on my own;
*diagnosed 2008 when I underwent emergency surgery;
*various meds and tests 2008-2012,
*Jan 2012-present, Humira. No symptoms, but scopes indicated disease.
*6MP for all of 2013.
*2014 &2015 complete mucosal healing.

**Staying on Humira for maintenance**

The statistics I see so far for my situation seem pretty good. There ARE long term statistics for the Anti-TNF drug treatments now. I'm here to make them longER.
10-20-2014, 07:29 AM   #9
TeacherMama
 
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Thanks for your discussion, everyone. I really appreciate it.

My memory of being on drugs is that the side effects made a huge impact and I felt, at the time, made me feel worse. I'm on maternity leave right now and have a 5 year old to walk to school every day. NO TIME is a good time for side effects and active disease for anyone, but just the thought of feeling so terrible when I'm trying to take care of my infant child and my 5 year old is the WORST feeling. Ever. I'm also breastfeeding. I discussed this with my doc and she said only a trace amount goes into the milk....BUT real research has not been done as Humira hasn't been out long enough. The last part of that statement is enough for me NOT to breastfeed anymore with her if I do choose to go on it. So, I think I just might have made my choice actually. I will wait until I am done breastfeeding. I will not put my child at any kind of risk, however mild some may say it is. I also need to have more data on hand- a MRI and more blood test results. With all the information on the table, I'll feel better making a choice.

Ohhhhh, Crohn's. You suck.



Cheers, everyone.
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