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Crohn's Disease Forum » Treatment » Humira/Adalimumab » V scared - Postive Humira Stories???


08-15-2014, 11:03 AM   #1
samanthab
 
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V scared - Postive Humira Stories???

I'm absolutly petrified of going on this drug and have avoided my consultant and the healthcare company who are supposed to administer it to me for 4 months . But after a terrible bout and new symptoms I've decided to take it . I think with my symptoms worsening now and no remission of any kind of at least 18 months I think I have to finally cave in . I've never been so scared in my life . I'm scared even about the superficial things like weight gain, which is more common in women on Humira , and then there is the cancers (i'm a very moley person and skin cancer is a side effect ) I'm dodging the azithiroprine for now . I mostly suffer from fatugue and aches and artiritis which has really gone up a notch the past 2 months . But now im getting these bizarre contraction pains , they come and go last 3 days , although the first time I was sick couldnt keep any fluid down wednesday night and thursday morning , I though it was a blockage but I just don't know , I even packed my bag for A & E , I feel a lot better today and eating a tiny bit but just still have these strange contraction pains . Been going loo a lot ( yesterday especially) not as much today . I just cant figure it out but I was panicking i'd finally perforated .
08-15-2014, 04:56 PM   #2
joeyme1
 
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Humira works great for me. It's been 3 years. No major side effects. Recently, I had a resection to remove adhesions. The surgeon found no sign of active Crohn's. On the negative side, I should tell you that I got shingles from taking Humira because of compromised immune system. I also am extra careful, OCD???, about germs. Because of this, I rarely get sick.
08-16-2014, 06:07 AM   #3
B Baker
 
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Hi Samantha,

I was like you desperately needed something and I hated being on steroids. Humira has changed my life I wish I'd been given it sooner and had not had to endure all those months on steroids. I've been taking it for 2 years with no side effects. Like you I'm moley so I see a Dermatologist once a year to make sure. The injection itself lasts 10 seconds and it's nothing compared to the Crohns pain. Good luck
08-16-2014, 06:25 AM   #4
Jay Woodman
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I'm absolutly petrified of going on this drug and have avoided my consultant and the healthcare company who are supposed to administer it to me for 4 months . But after a terrible bout and new symptoms I've decided to take it . I think with my symptoms worsening now and no remission of any kind of at least 18 months I think I have to ....
Hi Samantha, I'm also very nervous about starting Humira. I'm currently in an "undecided" mode but have decided my next decision point will be the results of my next Colonoscopy which is scheduled for September, 2014. I'm also in a state of remission since January, 2014 so this is further complicating my decision : )
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08-16-2014, 03:27 PM   #5
chuckmya
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Hi there everyone! My GI doc also wants me to start humira! Scared to death also......I've had crohns for years but am newly diagnosed! Never really have taken any other meds.... But due to severely active chronic enteritis and my history of obstructions and bowel resections she would like for me to start! Ugh going to see her in a couple of weeks for a consult
08-18-2014, 03:29 AM   #6
n00b
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I have been on Humira now for 9 months again like you I was very scared.

It has worked very well with no side effects other than a tiny bit of nausea (very rare and only lasts a little while) My bloods are all perfect and no elevated levels on anything.

Still, remember we still have crohns at the end of the day so if you donít look after yourself (like I didnít over a very booze fuelled stag do weekend!!) you will still get crohns like symptoms from time to time!

Humira is great but like my GI keeps telling, don't expect to be perfect for every as that is unrealistic.
Like others have said, the in many cases with crohns the benefits far far far outweigh the risks
08-18-2014, 06:42 PM   #7
David Byrne
 
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HI All

I have been on Humira 2 1/2 years, Once I started the drug within a few months it worked great. You hear a lot of stories going around about side effects and cancer but if you look at the pros and cons Humira is not bad.

We all have been there.....Days ..weeks ... in pain nothing helping ...anything to stop the pain....
BUT now I say this only in my view....Humira saved me.

I know the fears which will go through your mind but if and I saying IF you get any pain relief and start getting your life back then its worth taking a chance.

Look everyday you can put one foot out of the bed with no pain is a good day.
08-18-2014, 10:27 PM   #8
my little penguin
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DS has been on humira for over a year - he is 10.
Other than the painful injections things are going well Gi wise.
It did take a few months and increase in dose to get to this point though .
Good luck
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08-19-2014, 09:08 AM   #9
Nancye50
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Humira isn't that scary. Really. The benefits far, far outweigh the risks.
Untreated, uncontrolled Crohns is much worse than the slight risk of side effects from this drug.
08-19-2014, 12:24 PM   #10
theOcean
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Humira's been fantastic for me - I've been on it for almost a year with no side-effects and it's done wonders for me. I'm even on it in combination with 6mp and still don't have any problems and never get sick. I wouldn't be in remission without it.

I was so sick before that I would never even consider stopping it, or going off of biologics. Especially since my Crohn's is so severe.
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Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
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Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
08-23-2014, 11:59 PM   #11
Liquid Bacon
 
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I've lurked this forum for a long time and thought I'd sign up just to chime in here.

I'm not sure why anyone wouldn't want to try Humira. I've been on Humira almost longer than anyone in Canada (I was in the first clinical trial, which started almost 10 years ago if I recall) and have been on Humira ever since. I get some fairly bad scalp psoriasis (which my dermatologist says is from the Humira but my family doctor said I might have developed anyways) but besides that I've had no side effects at all. Besides, even if the Humira is doing slow damage to something inside my body, is it any worse than another 10 years of malnutrition from ****ing my guts out 15 times a day would have caused?

I've been in remission for almost 10 years now and my Crohn's was bad. I'd been through every drug available and when the last one at the time (imuran) stopped working, I'm so glad my GI convinced me to wait on surgery and do the tube feeding for a year until I turned 18 and there would be more drugs available to me. Without Humira, I wouldn't have anything that I value today: my house, my business, or my beautiful wife and little 2 year old daughter.

I just can't see myself going back to being that sick because I was scared about the side effects from some drug. If the Humira works for you, the benefits far outweigh the risks.
08-24-2014, 04:39 AM   #12
Droopy Drawers
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Samantha,
I know firsthand what a difficult decision you have to make

Apologies in advance, this is a loooong story

I have had tummy issues from the time I was in my teens & nobody could ever figure out what was wrong

It took 4 GI Docs over the years to finally sort me out & come up with a dx of Crohn's

Doc #3 reviewed my tests & reports dating back to 1974 & when I had my first appt. with him, he told me I most likely had Crohn's
Before he could finish my work up, he had to leave his practice

I just went to my PCP & after a few months she put her foot down & insisted I see another GI Doc

I went to another specialist & of course, here we go with all the scopes & tests yet again
I actually feel like I could self administer these tests, as I've had them loads

This time something showed up
Biopsies revealed Crohn's in my duodenum, ti & bowel

I started on Pentasa & after a month they decided mtx injections needed to be added

Went for my first injection & the nurse read me an endless list of possible side effects
We had to both sign a statement saying she had given me the info in front of a witness

Had my jab & came straight home
Stretched out on the couch, crossed my arms over my chest & waited for something to happen

Not too melodramatic, eh ?

Then my joints started playing up big time, so off to a Rheumy

Seems these autoimmune things like to bring along a Cousin
Let's just add RA into the ever growing list

The Rheumy said Humira & my hair just about stood on end
I told her to let me think about it
That was a year ago & I still didn't take it

Meanwhile , back at the ranch, I had a funny looking sore pop up on my face, so I booked an appt. with a Dermatologist
I had my suspicions as to what it was & the biopsy confirmed it

Basal cell
Had surgery 4 weeks ago & they got it all
Doc thinks it was due to the radiation treatment from 40 years ago for acne
Never been a sun worshiper & use sunscreen every day of the year

I spoke to the Gastro, Dermatologist & Rheumy about finally giving in to Humira
They will all be keeping a very close eye on me

Took my first injection Friday under the supervision of a Nurse

Hope this helps
X
08-24-2014, 07:07 AM   #13
Soots
 
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Hi I was on Humira for 2&1/2 years. It didn't work for me however I got no nasty side effects - a little weakening of eye sight which could also be age related- and I found it east to inject as long as I did it in my tummy. When I injected in my thighs it stung but only for a few seconds. My immune system didn't appear to weaken either. It's worth a try there are lots of positive outcomes and if it's not for you, you can stop. Hope this helps x
02-05-2016, 09:16 AM   #14
samanthab
 
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I was scared of humira . If I took it two years ago when offered I wouldn't be here now in hospital looking at a further 6 weeks here .... For me , now , I wish I just bloody took it 😞
02-09-2016, 09:39 PM   #15
Pilgrim
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Maybe you'll have another chance to try it. I'm so sad for you. Don't beat yourself up. You made the best decision you could have at the time. Just rest, and see what your options are.
02-16-2016, 05:49 PM   #16
Miss Underestimated
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Been on Humira for 3 years, in remission for 2. No serious side effects. It has been a life-saver for me.

I just read where someone has been taking Humira for 10 years, and that gives me hope that it will continue to work for me.
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*Sick since 1987; managed on my own;
*diagnosed 2008 when I underwent emergency surgery;
*various meds and tests 2008-2012,
*Jan 2012-present, Humira. No symptoms, but scopes indicated disease.
*6MP for all of 2013.
*2014 &2015 complete mucosal healing.

**Staying on Humira for maintenance**

The statistics I see so far for my situation seem pretty good. There ARE long term statistics for the Anti-TNF drug treatments now. I'm here to make them longER.
02-17-2016, 08:27 AM   #17
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Same story with the fear of the unknown. I been on Humira for 3 years with no side effects. I've had had several colds with no side issues.
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02-17-2016, 09:33 AM   #18
ronroush7
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Been on Humira for 3 years, in remission for 2. No serious side effects. It has been a life-saver for me.

I just read where someone has been taking Humira for 10 years, and that gives me hope that it will continue to work for me.
Great
02-17-2016, 10:43 AM   #19
Salad_Shooter
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I was on it for many years with great results. I decided to take the risks and I'm glad I did. I've recently been taken off of it because I developed the brain lesions, but I'd do it all over again because Humira gave me my life back for many years.
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02-17-2016, 04:40 PM   #20
Miss Underestimated
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So sorry to hear you got the serious complications. I agree with you: 1 in 100.000 is good odds, unless you're the 1. It could be me in a few years - not likely, but it could. I think the improved quality of life would be worth it if I did, and I'm an optimist, so I don't sit around thinking about those possibilities. With autoimmune conditions, I think many of us are at risk for those diseases even without the Humira risk. Being born is risky. Going outside is risky.

Hang in there, stay strong, and stay optimistic. They are finding new drugs, treatments, etc every day. There's not a doubt in my mind that if we stay positive, we create our own outcomes in many cases.
02-18-2016, 04:24 PM   #21
Roxymusic
 
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I have lasted "only" a year on Humira and have just started Cimzia. Humira worked great on Crohn's, extreme fatigue was my side effect. Then to combat that there were other (prednisone and Benadryl) drugs giving more side effects. End result - move to Cimzia. Too soon to comment on that, only one loading dose.

However - despite all the side effects (falling asleep at work, on way home driving) , if I was having a severe flare like some here, the Humira people (ABBVEE) were wonderful to work with and the drug was effective, injections easy so I'd do it all over.
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DX Crohn's 1971
Crohn's Surgeries 1971, 1974, 1984x2, 1993, 2007,2016
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Dec 21 2011 started Remicade
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02-18-2016, 08:38 PM   #22
Miss Underestimated
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Wow! 1971!! That's amazing. I'm glad there are other drugs now, if one doesn't do it, you have other options. I sure hope the Cimzia works longer than the Humira. I agree the people at AbbVie are terrific.
02-25-2016, 07:56 AM   #23
MikeinBklyn
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Humira was a life changer for me as well. I too was terrified. I've been on almost 6 years now. Aside from a few colds no problems here. Going on Humira is well worth it. As I have said before, the lawyers scare the crap out of you because ALL the possibilities must be disclosed. Even the things that happened to people that were not caused by the drug. It's called CYA.

Good Luck!
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