Can Humira make CD worse?

I started Humira about 3 months ago, along with the Prednisone I've been on for a year and a half. My CD has become worse during this time overall I would say. I've never heard of Humira or any other IBD med for that matter, making the disease worse off, but has anyone ever heard of Humira making the symptoms worse rather than better? It makes me wonder whether tnf-alpha is really what is driving my pain or not.

It is quite possible that the Humira does not help your situation.
Is it usual to continue Prednisone at the same time?
Perhaps you need to talk to your GI specialist very soon about your symptoms.
There is a Humira section on the forum which may be of help to you.
Have you ever had Remicade? Maybe this would be more helpful to you.
It does rather call for a discussion with your specialist sooner than later..
Feel better soon
Hugs and best wishes
Trysha

Mark in Seattle said:

I started Humira about 3 months ago, along with the Prednisone I've been on for a year and a half. My CD has become worse during this time overall I would say. I've never heard of Humira or any other IBD med for that matter, making the disease worse off, but has anyone ever heard of Humira making the symptoms worse rather than better? It makes me wonder whether tnf-alpha is really what is driving my pain or not.

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I personally think drugs like Humira, Remicade, Enebrel ect.. are not safe medications. If a drug that is as dangerous as Humira isn't making you feel golden... I'd be off of it. Your risk vs benefits on Humira need to be weighed. For instance the chances of getting an infection or cancer or some kind of perm. nerve damage is possible. The numbers are low, but that risk still exists. So, if your quality of life has improved and you have noticed a significant improvement I would think that staying on something so toxic may be worth it. If not, with how much that stuff costs plus all the potential side-effects (& for you prednisone also weakens the immune system, making you even more susceptible to an infection) I wouldn't mess with it.
This just came to mind. Kinda of a strange analogy, but it's like think about taking say cocaine or heroine and not getting high. You risk your life possibly going down hill & getting sick plus the chances of addiction are there as well... But think about if you tried it and never got a good pay off/high from it the 1st time you tried it. You most likely wouldn't risk the negative consequences for something that gave you nothing.

& about making the disease worse. I need to find the reference because I can't rememeber the doctors' name and the book, but this doctor who has not only gi background, but other med. qualifications said something along these lines that blew my damn mind. He was researching these drugs that suppress the immune system and he got to a point where he determined that by not allowing the immune system to do its job in the colon and intestines (like getting rid of bad bacteria or attacking an infection) and stopping it's activity on that level..has actually resulted in fistulas, abscesses ect. Do you know what a fistula is? If you don't.. I hope you never experience one. It's when your body makes a tract to excrete an infection . For instances a small opening/hole on your back/stomach/private parts. I was like floored because when I tried Remicade, I got an abscess & a fistula! I think this dr. also looked into the amount of people with IBD that was on a biologic drug ad ones that were not and how many experienced fissures fistulas ect. People pretty much never got fistulas before biologics. Very interesting but very logical based on what we know about how our body works. Our body will always try to defend itself if it has the brain and ability to do so. Immune system sees a threat and its job is to destroy that threat (the start of an infection we'll say) It notices that it doesn't have power to do anything. It's too "weak" to handle it. So the body's next defense reaction is to push it down and out because mr. immune system knows what will happen if this little infection isn't dealt with. Since he is unable to kill it and knows what will happen, it's pushed through the body so it's able to get out. Then you have a fistula. Sounds about right to me.

It can in the long run potentially make crohn's disease worse, especially if it's used long term, I do say potentially, since not all is known about CD yet and not everyone has a NOD2 mutation but even people not suffering from NOD2 mutations with CD seem to have a malfunctioning immune system because they have a defective LPS response against bacteria.

The reason they believe this is because people with crohn are immune deficient, while people with CD are able to release very high amounts of cytokine in the intestine, the reason is likely because of an immune system that is underresponsive, they are unable to keep homeostasis in the intestine (dysbiosis happens) and in a secondary phase the immune system compensates for this "defect". If you further suppress an already compromised immune system, it could be a good recipe for disaster.

Many many studies have questioned the wisdom of using medication like humira and infliximab.

(Sorry for the fat lining, I did it in paint because I have no time to do it proper)

Another reason btw, but I don't seem to be able to find the article, is because T-cells keep each other in check, the moment you go off infliximab or humira is when the potential is highest to suddenly go into relapse, because T cell count is uncontrolled. T-cell regulate and police each other.

It takes over a year for lymfocyte to double again after you go off infliximab and humira, it's not like you off humira or infliximab and after the 2 weeks when the blood halftime has been reached or even when it's completely out of the blood that the effect of humira and infliximab is gone, NO, it takes a year for the lymfocytes that were supressed by humira and inflixmab to double in number again.

People wrongly assume that when infliximab and humira leave the blood the effect of the medication is immidiately over, no, depending on how low the lymfocyte have dropped, it can take a year or more in some people to get back to a normal level again, lymfocyte do no recover fast, it's a process that takes months.

All of this info should be out there for people to know, but it's not, it's hidden away behind journals that most people do not have access to.

I once mentioned the apoptosis TNF blockers and 6MP create and trojan horse pathogens like AIEC LF82 exploit the immune system by invading macrophages and breaching intestinal wall (they think OMPc immunoglobulin response is from AIEC flagella), so that could potentially be a good thing you could argue, but many people have said now that the apoptosis is not enough to control any of those bacteria and AIEC count could increase instead of decrease when people are under immune suppressants. I think the path of immune suppressants to treat crohn's disease, is ridiculous, it has the potential to make matters way worse in the long run.

The best defender again AIEC is not infliximab, not humira, not antibiotics, it's still the human body, and suppressing your strongest defense against them is destined to go wrong in the long run unless you let lymfocyte and TNF recover and let T Cell regulate immune response. AIEC suffer most from immune responses and from lactobasilli that can lower intestinal PH, hopefully they can make targeted antibiotics. (prior antibiotics use predisposes mice with AIEC colonisation btw, AIEC thrive when the gut flora is in disarray)

My biggest worry is not even crohn the disease, it is the people who don't know what they're actually doing, they have no clue what infliximab or humira actually does, no clue whatsoever.

Hey, so is scare mongering allowed on this forum? I guess so. lol

Don't take your meds people, because others are against, just live a painful, non-existent life.

Talk to your doctor, don't take heed of the BS that gets posted here, they're are many safety profiles on immunosuppressives and biologics, and their safety profile is acceptable for the majority.

0.004% and 0.008% is the cancer risk with monotherapy and concurrent therapy.

I knew I left this forum for a reason, a lot of this scaremongering going on recently.

http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

This is from ACTUAL STATISTICS.

I guess it is a small possibility, as according to the side effects in the patient information leaflet, some of the side effects of humira are similar to the symptoms of crohn's.

for example the following are listed:

Very common (in more than 1 in 10 patients)
abdominal pain
nausea and vomiting

Common (in more than 1 in 100 patients but less than 1 in 10 patients)
gastrointestinal bleeding.

I actually think the most likely scenario is that humira isn't working, and also the prednisolone is losing it's effectiveness as well as time goes on, so your symptoms are getting worse (or the disease is getting worse so prednisolone isn't as effective). From personal experience and what a lot of other people have said is that prednisolone doesn't seem to work as well after the first time you take it. So there could be a multitude of reasons why your symptoms are getting worse but most likely it is the humira/pred not working rather than anything else.

IAmTheWalrus said:

I knew I left this forum for a reason, a lot of this scaremongering going on recently.

http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

This is from ACTUAL STATISTICS.

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"Actual statistics" provided by Dr. Corey Siegel, in fact the whole page is CCFA talking to Dr. Corey Siegel.







Who is Dr Corey Siegel anyway? Let's find out shall we.





Interesting, he recieves money from a company called Abbott and is a consultant and lecturer for them.

Who is Abbott? Oh they're the makers of humira.

Shocker.

Obviously, linking scientific studies by independent people and making sure people have all the data they need, is "fear mongering" according to you, instead, you feel people should base their decisions on lecturers, who get grants to speak for the medical companies instead. In fact, Dr Corey Siegel is an MD, not even a scientist. Right...no thanks.


The study I linked came from a study from the department of Medicine, University College London that did NOT receive medical grants from Abbott for their research.

You base your evidence on a transcript from a single doctor who is paid to talk for Abbott, the maker of the medication he's talking favorably for.

Do not call anyone out for fear mongering when the sources I link are a million and one time more reputable than the one you linked, in fact your link is made by a doctor who would lose his license in many countries.

CCFA.org is for all intents and purposes big pharma, there is no distinction between the two, they are sponsored by big pharma, their speakers come from big pharma and their board is run by people from big pharma.

I would also like to add, since I feel all this info should be out there, that they know that the immediate reduction in pain from TNF blockers in arthritis is not coming from the improvement from the arthritis, it's coming from the effect TNF blockers have on the brain.

You can call that fear mongering yet again, it's once again info that is held back. It is possible that the immediate improvements people with crohn's disease feel on TNF blocker is not coming from the improvement from the intestine, but from the effect the TNF blocker has on the brain.

I guarantee you that 99% of the CD people using TNF blocker do not realise that the immediate effect of feeling better might be related to the effect on the brain.

This is info that came out recently, years after introduction of these medicaitons, I mentioned that they have no clue what TNF blockers actually do, and I stand by that, they have no idea what the medication does.


"Although subclinical anti-inflammatory effects of TNF-α blockade within the
first 24 h after exposure to TNF-α blockade cannot be ruled out completely, the lack of a drop in acute phase reactant and cytokine levels within this short time interval does at least not support such a concept. Our findings emphasize that changes of nociceptive responses in the brain precede the anti-inflammatory effect of TNF-α blockers."




http://www.pnas.org/content/early/2011/01/13/1011774108.full.pdf

http://medicineworld.org/cancer/lead/1-2008/drugs-used-to-treat-rheumatoid-arthritis.html

This is article is about out of control B cell activity, something Crohn's/Colitis sufferers and RA patients both experience.

"Powerful drugs used to treat patients with rheumatoid arthritis have a profound, previously unrecognized effect on the immune system, breaking up molecular training camps for rogue cells that play an increasingly recognized role in autoimmune diseases like rheumatoid arthritis and lupus.

"A team of physicians and researchers at the University of Rochester Medical Center reports that drugs known as anti-TNF compounds which include drugs such as Enbrel, Humira and Remicade affect our B cells, which play a role in a number of autoimmune diseases. "

"As per a research findings reported in the cutting-edge section of the Jan. 15 issue of the Journal of Immunology, the team observed that anti-TNF compounds help eliminate abnormal B cell activity in patients, raising the possibility that the drugs improve the health of patients in a way no one has realized before.

"The most important considerations for any drug are: Is it safe, and does it work? said Ignacio Sanz, M.D., professor of Medicine, Microbiology and Immunology, and one of two rheumatologists leading the research. The answer is certainly yes to both questions for these anti-TNF compounds. The drugs have revolutionized the therapy of patients with rheumatoid arthritis. But it also turns out that, even though millions of patients have been treated with these medications, we really havent understood to a significant degree how they actually work. "

An over-active immune response is just as dangerous as a suppressed one. lol at the conspiracy theory about a reputable doctor. The FDA isn't ran by the Illuminati, like some would have you believe.

IAmTheWalrus said:

An over-active immune response is just as dangerous as a suppressed one. lol at the conspiracy theory about a reputable doctor.

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how is taking money from abbott a conspiracy theory, I showed you black on white that doctor is s peaker for the maker of humira, I showed you black on white he's taking money and you call it conspiracy theory

crohn is not an overreactive immune system to begin with, it is not RA so don't bunch up RA and crohn

" CD patients, despite their massive intestinal inflammation, suffer from a relative immune deficiency"

http://www.ncbi.nlm.nih.gov/pubmed/22732089

" A substantial body of data has emerged in recent years to suggest that the primary defect in Crohn's disease is actually one of relative immunodeficiency. "

http://www.ncbi.nlm.nih.gov/pubmed/19437144

" studies have altered the perspective on the pathogenesis of CD, hinting at defects in innate immune sensing of intracellular bacteria and the handling of these organisms through autophagy. These findings are consistent with emerging data from immunological studies that point to a systemic immune deficiency in CD patients"

http://www.ncbi.nlm.nih.gov/pubmed/20594136

"Recent in vitro and in vivo data suggests that CD may instead be precipitated by innate immune dysfunction"

http://www.ncbi.nlm.nih.gov/pubmed/17106921


We are immune DEFICIENT, maybe if some doctors understood that fact and stopped taking money and bribes every five minutes, people would have safer medication.

Suppressing an already immune deficient immune system is playing the lottery, one day it's going to go horribly wrong for some people.

You will never see me quote something from an MD, unless that MD is also a scientist, there way too many doctors who have dirty hands, Humira and remicade are top 10 selling drugs worldwide, there are billions and billions riding on the success of these drugs, ANY form of negative press is going to get squashed. Unlike doctors, most scientists are not in the pocket for big pharma, and I will trust them and the FDA (who has issued multiple black box warnings by now) over any doctor, you can't trust them anymore.

There are people dying from infections and cancers on humira and remicade, Crohn is NOT e lethal disease if it's treated, those medications ARE making it lethal for some people, which is unaccpetable.

Humira and remicade are the most lethal drugs on the market outside of painkiller overdoses, I showed the statistics once, they are the most dangerous of ALL medication on the market right now.

Over 1000 deaths related to remicade (infliximab) alone, that number is just as high for Humira and all the other drugs, in fact the FDA has warned again and again that more and more deaths are related to TNF blockers, now they added kidney and liver failure which before was not accounted for, now it has come to light that those kidney and liver failure are related to humira and remicade. There are literally thousands of people dying on these drugs, that is not "a conspiracy theory", it's facts.



That's all I'm going to say about, but I won't jump on this bandwagon, you don't even know half of it, there are thousands of doctors on the payroll of Abbott and Janssens, it's not a pretty story.

I am also not the only person who complained about it, there are many MD and biologists who complained about the dangers of these drugs. There is one account of an MD, which if you want I will find again, who wrote a heartbreaking story in a journal a few years ago and urged to stay vigilant and urged for safer medication once he lost a patient who died under his watch. Crohn is NOT supposed to be a lethal disease, and it's disgusting that these medications are making it lethal for some people. People deserve better.

There was trial just recently where a person received $72 million by a judge (was lowered to $20 million after) because doctors and companies did not warn her of the dangers of TNF blockers, the company had to pay that amount of money. Those are the numbers we're talking about, Remicade and humira are a billion dollar business, they are the drugs with THE biggest profit margins bar none, never in the history of drug companies have those kind of profits been made, for you to even suggest "conspiracy theories" when it's crystal clear to anyone with an ounce of vigilance that thousands of doctors are no longer speaking for their patient but speaking for their bottom line. This has to stop.

And it is ridiculous for some people to ignore these issues and pretend they aren't there or pretend that these numbers can be justified, these deaths can NOT be justified, they are WAY too high, they are not acceptable, and instead of people silencing and keeping info from people, or like you're doing, trying to minimalise thousands of people dying on these medications, they should be talked about.

You're also way too fast to accuse others of scare mongering, if these figures scare you then so be it, they're fact and those numbers need to be out there for ALL to see, the risks need to be out there and they are REAL, people need all information, not just the happy stories, many stories related to these drugs are incredibly sad to read, and if you want to ignore them then go ahead and ignore them, but people have the right to know about the risks.

Kiny its your goal here to get people to get off Humira? This med has been the only thing that has put my disease into remission. This is what I know. There is a veer small chance of some bad side effects.The same can be said of any medicine, including homeopathic and so called natural therapies.

Humira has helped save my live from a disease that nearly killed me. I will stay on it.