Do I really need to start taking Humira?

[A ja]

Im 29 and I have been diagnosed with severe Crohn's disease this month after I was hospitalized for a week In April. It all seems a little bit like a blur. Fine I always had stomach problems (thought its was just IBS). But when I went to the hospital that night, honestly I thought I had food poisoning. Then it's like ok, intestines r inflamed. Antibiotics don't work after three weeks of taking them. Let's do an MRI, and there it was the fistula and then the diagnose.
I'm honestly fine with it. I've been taking imurek and budenofalk ever since and I feel good. Never have cramps or anything. So now my doc wants me to start taking Humira. Obviously I was shocked to hear that I would have to inject myself for the rest of my life. But after a couple of days I've gotten used to the thought...honestly I've been telling myself that ppl with diabetes got it way worse when it comes to this I guess...
The thing is just this I guess I keep on asking myself this:
Can I really not live without taking this medication?
Is it really worth all the possible side effects? (My mother died of breast cancer so I imagine I may already be at risk enough)
What if I actually get better at one point but will never know because you can't really stop the medication? I mean seriously, my body just started overproducing this protein, why would it not just regulate it again at one point?
I feel like I'm asking my doctor this questions and well apart from the fact that I live abroad and it's not my native language and sometimes I feel I may not understand everything a 100% I have the feeling she always talks around my questions.
I really don't know what to do? Does anyone have any advice please?

 

[Axelfl3333]

I,m sure your worried sick try not to be it makes crohns worse you,ve got to go with what your doctors say they will be trying there best.the side effects from these Med are rare though the happy reading leaflet in the box won,t help.i.m sure by the time you finish your course of humira and whatever else your are on you will be fed up getting blood work done which is actually a good thing because you,ll probably be better looked after than joe public they,ll spot stuff going on long before it's an issue.
I,ve just come to the end of my 2 year service at hospital,cameras,bloods you name I,ve had it.its scary but you,ll be fine so try not to worry to much.good luck all the best

 

[my little penguin]

If your skin was inflamed and infected would you treat it ?
Google images of colons removed for crohns ... Not pretty.
This disease can do a lot of damage silently without a lot of symptoms in some people. Under treated or untreated Ibd can be deadly . Strictures form and your at risk of ruptured small bowel . abscesses and fistulas form -sepsis.
Bowel resection - malabsorption or death due to short gut syndrome.

All meds have big time risks period
Infant Tlyenol can cause liver failure or death due to steven Johnson syndrome but it's given to babies every single day for fever.
Antibiotics - amoxicillin can kill you as well due to SJS or cause your liver enzymes to elevate.

The key to remember is the benefits outweigh the small risk which is why the docs prescribe them

I like numbers
Risk of dying for a child under 14 in the US
By car 1 in 250
By drowning 1 in 1000
Average non Ibd person T cell Lymphoma 2 in 10000

Ibd person taking biologics and Immunosuppresants at any point in time either together or separately 6 in 10000

The risk by taking biologics by themselves without ever taking immunosupresants is so small it's unknown

All that said DS has been on biologics for 3 plus years
Two of those on humira.
No issues
He started remicade at age 8 and is now 11.

His scopes are pristine with no signs of disease

 

[J_Matrix]

If your skin was inflamed and infected would you treat it ?
Google images of colons removed for crohns ... Not pretty.
This disease can do a lot of damage silently without a lot of symptoms in some people. Under treated or untreated Ibd can be deadly . Strictures form and your at risk of ruptured small bowel . abscesses and fistulas form -sepsis.
Bowel resection - malabsorption or death due to short gut syndrome.

All meds have big time risks period
Infant Tlyenol can cause liver failure or death due to steven Johnson syndrome but it's given to babies every single day for fever.
Antibiotics - amoxicillin can kill you as well due to SJS or cause your liver enzymes to elevate.

The key to remember is the benefits outweigh the small risk which is why the docs prescribe them

I like numbers
Risk of dying for a child under 14 in the US
By car 1 in 250
By drowning 1 in 1000
Average non Ibd person T cell Lymphoma 2 in 10000

Ibd person taking biologics and Immunosuppresants at any point in time either together or separately 6 in 10000

The risk by taking biologics by themselves without ever taking immunosupresants is so small it's unknown

All that said DS has been on biologics for 3 plus years
Two of those on humira.
No issues
He started remicade at age 8 and is now 11.

His scopes are pristine with no signs of disease

Excellent post.........I think people get more scared of the possible side effects than the devestating effects this illness can cause without treatment. Remember your Doctor is trying to make you better.

 

[empressentrails]

I choose not to take biologics because they are produced using animals and it goes against my ethics. That's my opinion and my doctor understands. I prefer to take a steroid, because I'm on a small dose, and I don't have any major side effects. Maybe if my disease was a lot more progressed, I would consider, but weighing the pros and and cons, I cannot justify taking a biologic at this point.

 

[24601]

empressentrails, you say "Maybe if my disease was a lot more progressed, I would consider" but one of the important things for people to know is that early use of biologics changes the natural course of Crohn's disease and reduces the likelihood of disease progression.

Once your disease has progressed, the treatments do not work as well - you can never get back to the position that early use of biologics would put you in.

I'm not saying that you should change your treatment - if your ethical standpoint is more important to you than that is your right.

I just want to make it clear that with Crohn's it is not as simple as deferring the decision about whether to use agressive meds until more severe disease or complications develop.

 

[empressentrails]

Thanks for the info! I see your point. Although, I did have one doctor say since it's a life long disease there is no need to rush into any treatment, especially since a small dose of steroid is working for me. I feel completely normal and great on a small dose of steroid. Everyone tells me the side effects of steroids can be really bad, but after reading and reading, the side effects of humira seem a lot worse. Especially since I work in a hospital (dietary aid) I could be exposed to all kinds of disease, and my employer has so far made it clear they are not concerned about my safety. I don't want to say what is right for anyone else. But for me, I think my ethical principles are more important to me. I know it's impossible to avoid any products that come from animals or are tested on animals, but I do try as much as I can.

 

[my little penguin]

There is a oh difference between the potential side effects of humira and known damage of long term steriod use.
Steriods used over a long time will give you diabetes , osteoporosis, thin skin etc..,, these are not potential side effects .
That said for years all docs had to treat crohns with was steriods
The mortality rate at that time was very high and life expectancy for a crohns patient was much less.

 

[empressentrails]

Good things to consider. For me, however, it is because steroids have been used for so long that I am more comfortable using them. My friend who had a kidney transplant told me he will be on a small dose of steroids for life. Humira is a new drug in the broad spectrum of things, and that is why I am hesitant to try it. We simply won't know the long term effects for many years. A quick Internet search brings up many cases of death already caused by Humira, I know the numbers are small, but any death is significant. For me, since I have been on and off the steroid for only a year and a half, it seems I may be able to get things under control and ween off of it completely. So, for me, a steroid is a better choice right now. I'm also hesitant to use anything injectable. I have faith in our body's complex tissue system that protects our blood stream. Diabetes runs in my family, so I know sometimes injections are absolutely needed for diseases, but if I can avoid it, I will. That's what I choose for my body at this point.

 

[Helene]

I self injected Humira for almost 2 years, it helped (kinda) with the more severe symptoms, but never seemed to really control my Crohn's. I suddenly had a horrific reaction to Humira and wound up spending nearly 2 weeks in the hospital with a "mysterious" fungal infection, bacterial pneumonia, Humira induced psoriasis and to top it all off, I contracted MRSA while in the hospital. Humira just really suppresses the immune system, which is already suppressed because of the Crohn's. I'm sure that a lot of people had great success with Humira, I just wanted to share my experience which wasn't so great.

 

[empressentrails]

Thanks soo much for sharing! I'm worried I would get an infection because I work at a hospital in close contact with patients and their dirty dishes. Hope you're doing well! Are you on any medications currently, if you don't mind me asking?

 

[Helene]

I am currently on Cimzia (another biological) I have had no side effects, I also am having a flare right now so I don't think staying on Cimzia is going to be a viable option for me. My Dr called in a script called hyoscyamine Sulf that I started yesterday. I've never taken that, have you had any experience with it?I'm hoping it gets me through the next two weeks when I see my GI again. I've lost 8 lbs in a week and I'm soon exhausted.

 

[empressentrails]

I have not. The only medication I have been on is prednisone and pentasa. The prednisone has been great, but my doctors want me to pick something different for long term maitenance. I am making a long list of meds to research. I'll add that one to the list!

 

[Helene]

I took pentasa when I was first diagnosed with crohn's, that was 24 years ago, I don't remember much about it. I believe that it wasn't being absorbed? But I have been on and off prednisone my entire life. It has a special spot in the medicine cabinet the side effects are awful though...I always get that really round puffy "moon" face when I take it for an extended period of time. It's definitely not a long term solution. It's unfortunate, it helps so much. Has your doctor mentioned Entocort? It's a really low dose steroid used for maintenance. I guess depending on how bad your symptoms are?

 

[empressentrails]

No, he did not mention that. The ones he recommended were azathioprine and mercaptopurine, so I'm looking into those. Pentasa is ok, it seems to help a little with soothing the bowels, but doesn't really get rid of the pain and inflammation. Also, I have trouble taking it so much, they recommended four giant pills four times a day, but I just don't have time in my busy work day for that. Also, it's so expensive and not covered, doctors have been giving me free samples, but that's not really a long term solution. I am also getting moon face and gaining weight, but it's not too bad. I will definately bring entocort up to my doctor.

 

[Helene]

I have taken both of these too. I'm not sure if azathioprine (Imuran) is something you would really want to be on as a long term maintenance. Mercaptopurine (it's called 6mp a lot) I remember taking it, it was not effective for my Crohn's. You should probably do some research on them and if they make you uncomfortable, definitely talk to your doctor about different options. I've tried a lot of things. I'm seriously considering a fecal transplant

 

[empressentrails]

I wouldn't be opposed to something like a fecal transplant. Anything that is non invasive would be fine by me. For me, yoga, exercise, and healthy eating help me the most. Unfortunately, being a mom, working full time, and trying to go back to school leaves little time for exercise, and money/the area I live in prevents me from having access to affordable, healthy food. Caffeine is my biggest trigger, but I just can't give it up, I've tried so many times. Yoga has helped me so much, I find it relieves a lot of pain. It's also something I can do anywhere/any time.

 

[24601]

Helene, empressentrails,

L-hyoscyamine sulfate (Levsin) is a treatment for IBS - not a treatment for Crohn's

 

[Helene]

Yes, coffee is a big problem for me. I really limit my intake and mist of the time I stay away from it completely. That's great that yoga offers some relief for you. I understand having kids and work and the lack of time. It's hard to do strict diets too, especially when you are cooking for other people and on a budget!