Long Term Humira = non-functioning immune system? Advice please!

I do realise this is a very long post to read, so all of your input is greatly appreciated.

I've been on Humira since February 2007, so that would be a little over three years. The first couple years were generally awesome: 90% free of Crohn's symptoms and no noticeable side effects from the Humira except for the occaisonal fatigue and nausea. In the past year, however, things have been very different. I've been getting sick and STAYING sick for much longer. Just this past November (2009), I contracted a nasty upper respiratory infection, accompanied by fever, nasal congestion, fatigue, chills, soreness, and everything else that a virus would cause. While the fever has long since disappeared, the infection symptoms have remained.

Here's the huge problem: I've literally been sick ever since then, with the same symptoms (except for the fever). I've contacted my gastroenterologist numerous times, and every time his exact words are, "I really don't think it's the Humira causing this, you shouldn't stop it". As I kept being persistent with him, he referred me to an infectious disease doctor, whom after numerous visits came to the conclusion that I should stop the Humira. When checking back with my gastroenterologist to confirm stopping the Humira, he still insists that I stay on it!

The only medicines I'm taking are Humira and Pentasa. Numerous blood counts in the past 6 months have all had the same results: low WBC, low platelets, & low testosterone (It's 218 and I'm 23 years old). I'm really sick of feeling sick all the time. Literally every morning I wake up with a sore throat, fuzzy head, cotton mouth, fast heartbeat, and just general horrible feeling. It fades in and out throughout the day, but there's definitely something wrong. I've had to drop my spring 2010 college semester because of this, and my work and social life is horribly suffering. My girlfriend always thinks I'm lying to her about being sick.

As of now I'm in between Humira injections. Can anyone suggest some steps I can take to figure out what is wrong with me (ie. find a different doctor, go against doctors orders and stop Humira, just give up on life, etc.)

Thanks!

I am so sorry to hear. Get a few other opinions. Maybe Remicaide might be better for you.

Where do you have the disease?

imissicecream - You're absolutely right that I should follow through with my gut instinct (lol, gut) and stop taking the Humira. The only thing stopping me is my fear of the unknown. When will the disease return and how severe? When I first got diagnosed it was pretty bad, lets just say it involved lots and lots of blood.

NostraHistoria - The disease is mainly in my terminal ileum. I am open to opinions from other doctors, but how would I go about finding a few top notch doctors? At this point I will even pay cash if my insurance does not support the doctor visit. I'm in the Los Angeles area: should I look into possibly one of the universities like UCLA's medical department?

EMom - I will do some reading on CrazyHarry and his posts, thanks for the input!

They give chemo patients an injection to help boost their white cell count and help protect them against infections. I don't know if this would be an option for us, or whether it would make the Crohn's more active, but it might be worth asking about.

I'm still looking into LDN and ULDN aka ULD-NTX (ultra low dose), but right now I'm not sure I can be experimenting to that degree -- nor am I sure if my Medicare Part D plan will cover compounding the microgram-range doses required for ULDN or even the single-milligram doses required for LDN. I'm concerned that the "easy method".....dissolving the standard 50mg naltrexone tablets in a large bottle of water to divide the doses.....won't be exact enough, particularly for ULDN.

There's a long story attached, related to the ups and downs of the past several years of my pain management....I'm both fascinated and worried about naltrexone's ability to "boost" my immune system. That may actually work well for some auto-immune conditions (paradoxically, on the surface of it); but Reactive Arthritis/Reactive Constellation (aka Reiter Syndrome) is a bit unique among auto-immune diseases. Anything that activates my immune system, even a little, causes a huge flare-up, and there are a lot of other differences from most of the conditions that LDN has been shown to improve.

ULDN is more tested in parallel with "traditional" opiate pain medications, and I may end up going that route. Perhaps even in combination with Levorphanol. But we'll see....I'm trying not to get my hopes up. I already ask a tremendous amount from my primary doc as it is, and all this stuff is fairly far out on the fringes.

Why not adjust the dose?

With the help of your g.i. doctor, you could go from twice a month, to maybe once every 3 weeks.
No luck, still the same? Maybe try Humira injections once per month?

biologics are very powerful meds. their long term use is unknown. we are the guinea pigs for them. it sucks.

if your disease is in check, that is good. perhaps the humira is working. however it sounds like it MAY be causing some other problems and you are not getting the answers/results you want. i can understand the frustration.

my advice, find a naturopath and hit the diet hard core. do the makers diet or scd. i am a strong believer in this stuff for what it did for me. but the key is to do it a "T" as best you can. no cheating. and you have to do it for a few months to say for certain it worked/didnt work for you and just how it worked, if it did. and a naturopath will look at other aspects of your health and treat you without using gnarly meds with gnarlier side effects. for example, remicade can cause lupus. ouch! look at what prednisone does. you need your blood monitored if on 6-mp. that is all ridiculous. now a naturopath is expensive, but it may be worth it in your case as you are not getting the results from traditional, western meds. i am not too familiar with humira (one med i have yet to try) and nor am i a doctor, but imhpo i would suspect the humira of the abnormal blood work. imhpo, under the watchful eye of a naturopath, this could be correctable rather quickly. you may need a new gastro too. that is hard to do, but it is business of YOUR health. take control. if he is not helping you as you think he should be, get a new doc. i know it is hard, but your health demands you make the hard choices.

if you live in southern california i can hook you up with my "team" i have put together over the last 3-4 years.

people who have not had a major health illness do not understand, that is why your g/f thinks you are faking. one truth i have found universal is that it is only a matter of time before we all get something (cancer, crohns, RA, heart problems, etc etc). you know what yours is and have it now. she'll get hers later. then she'll understand. we have a disease you cannot see. you look healthy. but all health truly begins with the gut. if you have a tummy ache, it spreads to the rest of your body and affects your mental health and a cycle begins. keep the gut healthy.

I agree with MMMNavy, there are more drugs out there to try. I also had to stop remicade after 3 yrs of success and then tried Humira when it brought an unknown C Diff infection to the point of almost death and 2 PE's. My doc wanted to restart the Humira after everything smoothed over but I refused. He put me on Methotrexate injections and folic acid. Working great! Good luck with your decision, but your right, you should follow your gut instinct. If your dr is not willing to work with you, find another.

nancerini - I have been doing lots of research on LDN, so that will definitely be kept in mind.

asc58 - Wow, that sounds horrible. So there ARE other people besides me getting crazy infections with Humira. As of now I'm working on finding another gastro doctor for a second opinion.

MMMNAVY - Thanks for mentioning those tests that I should be aware of, specifically the ANA one. I've read a lot about people on Humira developing Lupus, but always figured that was not a possibility in my case since there's no "achy feeling".

CrazyHarry - I do in fact life in the So. Cal area, Torrance to be exact. If you could shoot over the names of some people I'd greatly appreciate it. If you know of any highly regarded gastroenteroloists that I should look into, please mention those as well.

Julia Hill - Quality of life is indeed very important, and it seems at this point my choice is either Crohn's symptoms or these infection symptoms. The only thing keeping me from stopping the Humira cold turkey at this point, is the fear that there are no better drugs to move up to. Once I stop the Humira, the only choice is to go back on some other biologic. It's going to be a tough decision.

Homeboy - I've mentioned a reduction in dose to my doctor, and apparently that's not how the drug works? From what I've heard, due to the 2 week half life of Humira, once you get past that point the chance of building a resistance to the drug grows exponentially.

mmckenna - My immune system does indeed feel beat down. Sorry to hear that Remicade had some nasty side effects on you. Biologics sure are a hell of a drug, huh?

Hi there,
I would suggest going to see a naturopath, a good one, and they can do tests on you and prescribe an anti parasitic, pre biotics probiotic etc, or whatever else you need to reverse this issue. I also suggest you look into vegetable juicing and avoid GMO foods like the plague as chronns disease sounds exactly like a reaction to gmo foods seen in tests on animals. They arent safe so don't beleive the hype.
I take humira also but for a different thing, RA. If you have a poor diet, your problem will only get worse, seek information about organic nutrition immediately, do not go for traditional medicine, its only made to make the companies rich.