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Crohn's Disease Forum » Treatment » Humira/Adalimumab » Long Term Use of Humira


08-08-2017, 04:21 PM   #1
aweitzm1
 
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Long Term Use of Humira

I just had my first injections of Humira today. Just a couple questions:

1. If I get any side effects when do they usually appear?
2. If Humira works will I need to be on it the rest of my life or some other type of Biologic?

I am really confused as my doctor tells me I am moderate with CD but the pathology report says I am mild and I can handle the flareups for the most part.

Only when I really stressed do they become unbearable and lately that has not happened. It only happens 3-4 times a year. Sometimes even less.
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08-08-2017, 07:45 PM   #2
SCCrohnie
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I had side effects start after about a week, which was joint pain.

I've been on and off biologics for about 12 years. I asked a doctor once what the plan was to take me off it and he said there was none. I guess your mileage will vary.


08-09-2017, 09:08 AM   #3
Guerrero
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Enjoy the fact you are well and dont worry about side effect.

It seems you can handle flareups, but inside you may have irreversible effects, so trust your doctor that biologics are better than no treatment if your body show traces of disease activity
08-09-2017, 09:55 AM   #4
aweitzm1
 
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Thank you,

This disease is just so confusing. I am grateful I am not worse off compared to the stories I hear.
08-09-2017, 01:12 PM   #5
Guerrero
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Thank you,

This disease is just so confusing. I am grateful I am not worse off compared to the stories I hear.
You are right this disease is sometimes very confusing. It's great we can find support here and some treatments start working very well.
08-10-2017, 07:37 AM   #6
my little penguin
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Ds took humira for over 5 years without side effects
He had to stop due to surgery (not Crohns related )
Once he restarted humira didn't work anymore

Typically once you start a biologic you stay on a biologic until it stops working
Once in deep remission after many years some risk stopping biologics (most end up flaring within a year)

Ds will be starting Stelera next week

Good luck
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08-11-2017, 11:00 PM   #7
ASM
 
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Enjoy the fact you are well and dont worry about side effect.

It seems you can handle flareups, but inside you may have irreversible effects, so trust your doctor that biologics are better than no treatment if your body show traces of disease activity
Thanks for the reminder. I have always wondered why people have had to quit a medication. I was on Humira for one year. I stopped in April, 2017. I had to stop because it was causing inflammation in my lower back and then in my hip. Once I quit the drug, my problems went away. Un-fortunately my Crohn's symptoms returned. I have been approved for Stellara but I told my Dr my symptoms were manageable and I would wait a while. Maybe not such a good idea since I know I have active disease activity.
08-29-2017, 07:10 PM   #8
JackG
 
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aweitzm1, I'm surprised your doc put you on a biologic so quickly. I was led to believe it was a "last stand" med you resorted to only after you tried everything else. I was on Pentasa a long time until I developed two strictures a couple years apart. Plus, there's only a handful of biologics.
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08-29-2017, 07:21 PM   #9
aweitzm1
 
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aweitzm1, I'm surprised your doc put you on a biologic so quickly. I was led to believe it was a "last stand" med you resorted to only after you tried everything else. I was on Pentasa a long time until I developed two strictures a couple years apart. Plus, there's only a handful of biologics.
My doctor believes in the top down method as she calls it. Be more aggressive with treatment to avoid surgery in the future. Her goal is to get me into remission as quickly as possible. From what I read a lot of doctors are now using this method and biologics as a first step.
08-30-2017, 11:14 AM   #10
my little penguin
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JackG
Most GI used to use the step up method in the past
Weakest med first then go up
But they found they alter the natural history of Crohns (75% surgery rate within 5 years of dx for kids at least ) if they use biologics sooner and closer dx
The rate of surgery drops to 30-40%
And the kids at least respond better to the biologics and have deep mucosal healing on scopes
Meaning their intestines look pristine and normal with no signs of inflammation
09-03-2017, 01:30 PM   #11
richard1353
 
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JackG
Most GI used to use the step up method in the past
Weakest med first then go up
But they found they alter the natural history of Crohns (75% surgery rate within 5 years of dx for kids at least ) if they use biologics sooner and closer dx
The rate of surgery drops to 30-40%
And the kids at least respond better to the biologics and have deep mucosal healing on scopes
Meaning their intestines look pristine and normal with no signs of inflammation
That's a common tendency. In China, now many doctors start to use the step down method and first time with biologics against CD, especially for children.
09-09-2017, 09:16 AM   #12
Nicola Price
 
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Enjoy the fact you are well and dont worry about side effect.

It seems you can handle flareups, but inside you may have irreversible effects, so trust your doctor that biologics are better than no treatment if your body show traces of disease activity

You may be interested in a blog I wrote yesterday. Biologics certainly have their place, but they can indeed have irreversible effects on your body and lead to other problems, some of them very dangerous. There are other options which I believe doctors should have the confidence (and official backing) to discuss with patients. https://nicolasblog247.wordpress.com/
09-09-2017, 10:06 AM   #13
Guerrero
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You may be interested in a blog I wrote yesterday. Biologics certainly have their place, but they can indeed have irreversible effects on your body and lead to other problems, some of them very dangerous. There are other options which I believe doctors should have the confidence (and official backing) to discuss with patients. https://nicolasblog247.wordpress.com/
Hi Nicola I read the first page of your blog and no, i'm not interested in reading more than that. Sorry but i think most of your statements are either wrong or not proven. Your are using a terrible case at your convenience, and maybe you think you are helping anyone but I personally think you are not but just bringing more confusion. Are you a doctor or Ibd patient?, do you have a scientific or patient experience of what could be our condition? On whats is scientifically proven about MAP? On what are the risks of antibiotics treatments for MAP compare to biologic therapies?

From your position it is so easy to criticize and stand that you'd have do this or that, and writing this blog doesnt give your theories any credibility.
I hope MAP treatments will eventually work, but at the moment it's not proven they are.
Be sure both doctors and patients would like IBD treatments be as simple as unrisky as you describe but unfortunately reality is much more complicated than what you describe.
09-10-2017, 03:54 AM   #14
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When my son was diagnosed with Crohn's disease three years ago, I was so grateful to have discovered this Forum. I knew nothing about the disease and I found here supportive, kind members who patiently helped me understand. So, I am saddened Guerrero, by your dismissive answer to Nicola’s blog. I personally found it to be powerful and compelling.

The blog was written in response to terribly tragic news, by someone who has clearly experienced the ravages of this disease first hand, and who has seen the ultimate consequences, and certainly not out of “convenience”. It conveys frustration and anger that all of us should be feeling. It also communicates profound sadness as someone very dear to her, a parent of a Crohn's child, is experiencing a horrific nightmare.

I don't believe it helps anyone to hide the truth. Biologics like Humira can be a godsend, but the reality is, they are also dangerous. We can disregard the potential side effects, after all what is one or two percent? Until of course, it is YOUR child, or your spouse, or sibling, etc.

Before I am torn apart here as well, I want to give a little bit of background. My son is on Humira, and he is in remission. I am grateful that it is working, but also very well aware of the potential side effects and they terrify me.

When he was diagnosed, they threw every drug at him. He had been a healthy child, taking only Tylenol every once in a while, then suddenly his bedroom shelf resembled a drug store, covered with bottles, prescriptions with long, weird names. None worked. My once funny, healthy boy was quickly turning into a skeleton.

I have had an aversion to taking meds ever since I witnessed first hand the ravages that they can do to a body, having a very close family member suffer from an incurable condition. People take them to help them get better, but often the meds add other woes to an already sick body. So, I was frightened to see suddenly my boy having to down those pills, but we had no choice.

One of the meds was Cipro. I had no idea of the risks associated with it. Within 12 hours of taking it, my son suffered excruciating pain, paralyzingly him. I started to read the inserts and discovered this specific side effect. I ordered him not to take anymore. I was angry. It turns out Cipro has a black box warning, but we didn't know….

As my son’s condition continued to deteriorate, we finally but reluctantly settled on Humira and his pain subsided, sending him into remission. He nevertheless remained on all of the other drugs as well. Then his liver started showing signs of stress. So, one by one, except for Humira, every drug was stopped, a process of elimination until the very last one, which was Pentasa was found to be the culprit. During this time, his doctor kept insisting it was NOT Pentasa, but in fact it was!

Despite his reaction to Cipro I would have welcomed the opportunity to try AMAT, because although they are powerful drugs and not without their own nasty side effects, I don't believe rare forms of incurable cancer is one of them. I know this treatment doesn't work for everyone, but I have read enough personal accounts to know they work for many. Biologics only work for 1/3 and among those, they continue to work for only 1/3. I know that for AMAT, the response rate is much higher. So, it seems the blog raises a very good question, why don't doctors already offer this treatment? Why do people have to hunt down those who will prescribe it? Contrary to the claim that there is no proof, there have been numerous peer reviewed studies confirming the efficacy.

I am a firm believer that nothing should be hidden, knowing the truth is essential, and legitimate questions do not confuse me, they instruct me. My son’s doctor refused to consider that it was Pentasa causing liver stress. Thanks to this Forum, I learned that it could and I questioned her decision. She was also surprised about Cipro… Questions keep the medical and scientific community on their toes, and it is how we move forward. People have the right to know about ALL possible treatments and to make their decision with the help of a well informed doctor. Because ultimately we all want the same thing…..a CURE. Nobody should be satisfied with anything else.

Last edited by Mommabear; 09-10-2017 at 04:14 AM.
09-10-2017, 07:43 AM   #15
Guerrero
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Doctors don't offer the AMAT therapy because it is not aproved by FDA and the other country's agencies.

I'd wait the final conclusion of the studies and, if eventually aproved, the FDA or other agencies publications of side effect to conclude or state it has less side effect than anti tnf therapies

Modern medicine is moving to biologics therapies, monoclonal antibodies etc... with tremendous results in treating inflammatory disease and cancer.

Anti Map therapy is not a cure. Doctors promoving anti map say that if you discontinue, you will probably relapse. Exactly like anti-tnf... that's why it also undermine their theories in my opinion, why if crohns is an infection and you take strong antibiotics for like 3 years you will eventually relapse if you stop it.

But anyone is free to go to a center actually testing anti-MAP therapy: https://www.clinicaltrials.gov/ct2/s...ow_locs=Y#locn
09-10-2017, 09:30 AM   #16
Mommabear
 
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Unfortunately MAP goes dormant, like other mycobacteria, such as TB. Once it is dormant no antibiotics can get to it. We see that happening to cattle, sick with MAP and diagnosed with Johnes disease. They are not cured of it despite being treated with antibiotics. I don't think any doctor is saying that AMAT is a cure. And, there are side effects. However, most of those side effects will resolve once the antibiotics are discontinued. There is no doubt though, that neither biologics nor AMAT are the answer. However, as Nicola pointed out, maybe AMAT is the lesser of two evils and it certainly seems to work for a lot of people. We will have a better picture once Redhill gets approval, but in the meantime, it seems down right cruel to not offer it as an option.
09-10-2017, 09:45 AM   #17
Nicola Price
 
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Whenever AMAT is mentioned as an effective treatment, someone usually leaps to the conclusion that the proposer is saying it is a cure. It is not, of course. But, as you say, Mommabear, it is highly effective for many people and I agree it is cruel that it is not even mentioned by the vast majority of practitioners as an option. I know the reasons for this (well documented in my blog) but we need more doctors to take the time to learn from those who DO use AMAT successfully. They are in short supply.

I should also add that I am not against biologics per se. I am well aware that monoclonals are useful. In 2009 I was diagnosed with stage 2 breast cancer. This made me a ‘1 in 3’ of all women. However, of those who are unlucky enough to get breast cancer, 1 in 5 will have a HER2 positive cancer, an aggressive one. That was my fate. This made me a ‘1 in 15’ despite living an active life, having a normal weight, eating healthily and drinking very little alcohol. The treatment (after the usual lumpectomy, chemotherapy and radiotherapy) was trastuzumab, or Herceptin, a monoclonal antibody which probably saved my life. I was fascinated by its mechanism of action and the fact that it was made on the ovaries of hamsters. Mind blowing! And I bored many people at the time with all the details! If there had been an alternative, I’d have taken it, but there wasn’t. What I am saying about the treatment of Crohn’s, though, is that there IS now an alternative that works for many people. The fact that it’s “only” 1 or 2 in 100 (and not my own 1 in 15 experience) who get the lymphoma short straw should make it no less urgent to get more doctors on board and avoiding the automatic use of humira.

Last edited by Nicola Price; 09-10-2017 at 10:32 AM.
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