Is Humira as scary as I think??

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Gems867

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Jun 26, 2011
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So here's the deal... I am 29 went undiagnosed for years and was miserable ended up in the ER in April 2007 had a bowl obstruction and ended up having a resection. My crohn's has been in remission and the only crohns problem I have had is frequent trips to the bathroom. Had a colonoscopy in February and it showed mild crohns activity. I am currently on Pentasa but my GI says that I should up my medication. His theory is I had severe crohns and even though I feel ok my bowel movements are increasing and my inflammation is increasing so I am headed to severe crohns and surgery again. He says I need to begin Humira with imuran or at least Humira. The list of side effects terrifies me :eek: I don't want to become a person who has to be afraid of germs and has to rethink vacations to 3rd world countries because of the possibility of infection. What kind of side effects has everyone seen?

Is the risk really worth the benefit?
 
that was my huge concern a year and a half ago when my dr suggested immune suppresant drugs. i went on asacol and things just kept getting worse. now i am going to end up on one anyway and have gotten my first abcesses in the meantime. i kida wish i had of gone on it earlier. just my opinion

debb
 
Yeah I am in the place where I am like I feel ok so why take it if I am ok. But them again I don't want to end up like I was before the surgery because well I only have so much intestine to remove. I guess I just wish there was a less scary effective alternative...
 
Hey Gems! :)

I'm going on Humira too :D

I'm quite excited, side-effects be damned. I like to think of it this way: My life is a hell hole right now, because of this disease. I'm not going to sacrifice my opportunity to live in fear that I'll get sick. What are you on the Nexium for? GERD? I'm just thinking, if you're so opposed to it (humira, that is), why not ask your doctor to start something that isn't a biologic? Like imuran?

Best wishes going your way,
Ben.
 
Yes Nexium is for GERD. My doctor wants to combine Humira and Imuran. But he also warned that the combo would increase side effects. So he suggested Humira if I am only willing to do one.
I guess it would be an easier decision if I felt bad (not that I want to feel bad) just would be easier to weigh risk to reward.

Basically the way my doctor looks at it is I am damned if I do damned if I don't...
 
Ahhh, I see. So you don't actually feel bad enough for the risk. Why not tell your doctor that? Just say "I'm sorry, but I don't feel sick enough to deal with those potential side effects"... I mean, there's no logical reason you couldn't try an immunomodulator first, especially if he wants to put you on one in a combo therapy.

I say, if you don't feel the need, don't do it. If you can get him to Rx you the imuran or 6mp or something, and it fails, well then go for the humira. But if you're more scared of the meds than you are of the disease, then you shouldn't be taking them. You shouldn't have to volunteer yourself for something that scares you more than your involuntary chronic disease.

Keep smiling, keep updating :)

*hugs*

Ben
 
Go ahead and do the Humira. However, I wouldn't do the Imuran and the Humira. I've read a lot about hair loss and other things with the Imuran. I'm on Humira. It burns like hell each time you do the injection, but it's only once every other week once you've done the initial shots. I haven't really had any side effects to speak of. I teach and am around 600 students daily who have multiple colds and illnesses and still haven't gotten sick from them. Not even a cold last winter! So go ahead:)
 
No, it's not as scary as you think.

Yes, the risk is worth the benefit (although really only you and your health provider can make that determination for you). Your doctor weighs the risks and benefits before prescribing it for you.

You are really only more prone to certain types of infections. You don't need to become a germophobe and you probably won't get colds more often than you did before (I didn't). The listed side effects are really, really rare. It is really unlikely you will even experience any of the side effects on the list. On the other hand, it is not unlikely your Chron's will get worse and you will need surgery again.

I am not a doctor but I think it's really important to treat this disease before it gets bad. It's so much easier to keep it under control than to get it back under control once you're "flaring." Good luck, I hope you find a treatment you are comfortable with that works for you. If you still have reservations about Humira I would bring them up with your doc.
 
Humira is a pussycat drug compared to some, only rarely does it become problematic! I still shrug off any virus, bugs etc as I used to even on weekly injections.

If you go to 3rd world countries regularly in excess of a week or two at a time, you should consider the logistics of Humira. It needs to be kept refrigerated, between 2 and 6c, which may be difficult.
 
Thanks all! Today I had quite a bit of pain, first time in a long time, I guess that was just a little reminder that my crohns is still around and active :( I think I will probably give Humira a try. I am glad to hear that that you don't have to really worry about germs. I had visions of feeling better from crohns but getting real sick from the common cold etc etc. I am a worrier :)
I do have another question. Is Humira insanely expensive even with insurance? I looked on the Aetna's website and it just says requires approval. I know when I looked up Cimzia it as $3k a month with insurance if Humira is similar how does anyone afford it? Are there any ways to get help covering medical expenses?

Thanks again everyone
 
Hi Megan,
Your doctor's office should work with the insurance company to establish medical necessity. If you have had to have a resection already, you may have a good chance. Go to myhumira.com and do some reading. They have patient assistance programs for us. They offer good support. I have a friend who has psoriasis, has no insurance and gets her Humira because she cannot afford it. This is one prescription, and company, that cares about its patients.
 
I understand! i was scared to death before trying it. In all honesty, the warnings they put on Humira are to keep on the safe side, but I have really and truly noticed NO side effects other than remission :)
ALSO i pay $5 a month for my humira! i have great insurance whch made it a $40 copay, but i applied for the patient assistance on myhumira.com, thinking they would reject me since i have pretty good insurance, but in fact they sent me the benefits card and i only pay $5! From my experience, it seems as though it shouldnt be too too hard for you to get a low co-pay with them. good luck!!
 
Been there too. After a year and a half it has been a Godsend. Don't be too afraid. I fight off colds just like before. My blood tests are all within normal ranges. I am very, very glad to be on Humira! Oh yeah, $5.00 copay for four pens.
 
Thanks all! $5 copay is like unheard of. I will totally check that out when the time comes. Besides the drug being scary I was really afraid of the cost. I had checked on Cimzia before and when I read $3k a month I just assumed Humira would be similar... Glad it not!
 
I heard it can cause neurological problems in some folks my GI told me..what's the difference between this stuff and remicade? I know long-term use of remi can cause lymphoma as thats what happened to my grandma..but shes fine now.
 
Terri said:
I heard it can cause neurological problems in some folks my GI told me..what's the difference between this stuff and remicade?
Click to expand...

I believe that it's something like Remicade is derived from a mouse antibody while Humira is from an actual human one. yep just checked wikipedia, and humira is named so because it stands for "Human Monoclonal Antibody in Rheumatoid Arthritis". Maybe the body reacts better to a human antibody than a mouse derived one?
 
I pay $5/3 months worth of meds! My copay should be $100/month, but the protection plan with Humira covers all of it except $5 for 3 months of pens. I take an injection every other week:)
 
Decided to go for it. Scary but also exciting think that I may not have to spend a large part of my day in the restroom.
 
I hope it helps you, i was also very scared at first but it´s starting to get alot better after reading up on the subject of Humira sideeffects.

i am myself about a month and a half into it im starting to get better firmer stools is a good sign and less blood in them aswell.
The biggest relief is also alot less pain.

Im also trying a more vegetarian diet (not stopping meat compeletly) beginning tomorrow and hopefully i will also get back in the gym soon because i´ve gained like 7-10 Kg since my last run with Prednisone im gonna try to turn it into muscle.

But im still on a low dose of prednisone until the end of next week after that im gonna start training again, which usually helps me feel alot better both mentally and physically.
 
I hear ya Gems!

And also see you have made the decision to go ahead. I hope it goes wonderfully well for you hun...:hug:

I felt the same way when my son was diagnosed last December. Humira was on the cards but his treatment took another path...

When he was first diagnosed I worried about the Pred, then the thought of Humira freaked me out, then he had set back after set back...the drain worried me and finally surgery. I seem to go through my life worrying about one thing only to have it replaced by a bigger and better worry!

You will be fine mate, at the end of the day my biggest fear is untreated Crohns, I saw what it did to my daughter. I still hate the fact that my kids need medication every single day and yeah, I worry about it but it is the lesser of two evils in my mind, and oh the joy to see them living what, for all intents and purposes, looks like a normal teenage life!

Dusty. :heart:
 
Humira has been a life changer for me.

The manufacturer must put down every possible side effect, even those that were unrelated to taking the drug during the trials.

No, Humira is not a scary drug, unless you have an allergic reaction, even then the reaction is less than with other drugs.

Every ten days, out of the fridge, warm to room temp for 20 min, pick a spot, prep, inject, go on with life.

Copay is $5.00 for four pens, with the Humira Protection Plan offered by Abbott, the manufacturer.

Good Luck
 
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Thankful for everyone's posts on humira. I was recently in the hospital for two weeks, was on remicade and was allergic. Now awaiting humira and my first treatment. I am currently on Prednison and imuran as well. Hopeful the humira makes me feel better and that I'm not allergic!
 
If you have time, read this.

http://www.ccfa.org/webcasts/Risk and BenefitsTranscript.pdf

You will be VERY surprised at just how rare some of the fatal infections and cancers are. The way some people on other forums I was going on you would think it was a common occurrence.

0.06% as opposed to 0.02% for people not on these meds. Or in other words out of 10,000 people on anti-TNF drugs, 4 contracted non-Hodgkin Lymphoma.

Put my mind at ease as my GI wants me to start Humira for a Perianal Fistula, ALSO, it seems now that Dr's all over the world are going for the "top down" approach when it comes to Crohn's so the meds are more effective.

Also, another thing, I was reading another article, I can't find it at the moment but when I do I'll post it, in a study about Biologics and auto immune disease it states that the benefits are not quite realised as of yet, the reason being is that in people with said ailments, B cell activity is usually out of control and anti-TNF drugs put them in check as opposed to suppressing them as what they would do in someone that hasn't got an auto immune ailment.

Hope this helps.
 
I have been on the Humira for almost 6 months and it really isn't working for me so my GI added Pentasa and Imuran. I will say this the Humira co-pay assistance program is OUTSTANDING
 
Hi Hazkid1, welcome to CF. There's a "My Story" section in the forum if you'ld like to introduce yourself...
 
Natalie, wow 3 years? That's great to hear, the biologics unfortunately have a reputation for being short lived in their effectiveness. Have you been in constant remission over that time? How severe is/was your disease before you started taking it?
 
Hi,

I originally started Humera because I have severe anklyosing spandalitus. I take one shot every 2 weeks.
Then, 3 months ago, I decided to try going off it for awhile too see how long my symptoms stayed at bay. Well, after a month I became very sick, over a period of 5 weeks i had lost over 20lbs, and affter the lovely tests was diagnosed with Chrones. So I may have had CD all this while and the Humera was treating it, then when off meds it reacted.
I am back on again. Feeling alot better, yet I will never ever mess with my meds again!!!!!!
 
I have also had no side effects from the Humera so far. But I have researcehd long term side effects, and although it is scary, it is worth the risk, just to be able to function on a daily basis right now!!! When I started Humera, it gave me my life back!!
 
Humira is helping me tremendously! I am amazed at how well it is working. I had similar results with Remicaid, but I had constant sinus infections while on it, so I stopped. Humira seems to cause sinus infections less often. I admit, I was nervous about the sinus part, but I wanted to go back on a biologic.

The thing that makes me more comfortable about biologics is that it targets the part of our immune system that is out of control - where prednisone, Imuran, 6MP, etc target the entire immune system. Lots of people take prednisone without thinking about all the potential harm it can do to your body. It makes you more prone to infections, causes cataracts, bone loss, thyroid problems, messes with your adrenal glands, causes thin skin, weight gain, hair loss and a whole host of other things we don't talk about much. Humira is a good choice, in my opinion!!
 
Megan,

Humira has given me my life back. When nothing else would work, Humira is doing the job. Since I have been on it I have, mostly, regular BM's. Usually the only times I might have the "D" are right before my next dose is due. As far as the scary list of possible side effects, those side effects are not common. I have had no side effects at all.
 
Humira put me in remission for a year. Worked awesome. Then, I had another huge flare and developed an infection from the Humira. I also developed antibodies, rendering the drug ineffective. Have been out of work for 2 months and was in the hospital for over a week, losing 18 lbs in 2 weeks (from 125 to 107).

The doctors were going to try Remicade- but I just didn't want to do it. I researched something called the "Specific Carbohydrate Diet" and have been on it for a month. I am having hard poops for the first time in MONTHS. This diet has seriously changed my life.

I'm not saying it works for everyone, but there is a huge cult following and the diet has been studied for over 100 years.

Here are some things to google:
"Breaking the Vicious Cycle"
"The SCD Experiment"
"SCD Lifestyle"

DELICIOUS foods you can make that your tummy can easily digest. Before you start on the scary immunosuppressants- see if you can try a more natural approach to try to get your flares under control. Even if it doesn't work completely, it should help the symptoms. But for me, it is working wonders. I cannot believe the progress and PROVEN lowred inflammation in a 1 month period.
 

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