Should I take Humira?

[trebor-HI]

I'm a 57 year old male diagnosed with Crohn's March 2012. My only symptom is that I have about 3 episodes a year during which I experience nausea and vomitting. The episodes usually last about 12 hours, I eventually fall asleep and awake feeling fine. I have no other symptoms! The Crohn's diagnosis was originally made based on observations made during a colonoscopy.

The last time I had a vomiting episode I went to an emergency room and a CT scan of my lower abdomen was performed. The radiologist concluded that I was suffering from a small bowel obstruction in the area of the ileum, consistent with Crohns.

When I reported the incident to my GI doc, he suggested humira. But, I'm scared of all the side effects and am having a hard time deciding. On one hand, I can handle 3 vomit episodes a year. On the other hand, I'm concerned that the Crohns and the SBO's will progress until I end up requiring surgery someday.

Was hoping to get feedback from the forum that might help me decide.

Thanks, Trebor

currently on Apriso & Budesonide

 

[moseslawn]

Hi Trebor, I am about the same age as you, and have been dealing with Crohns for about 8 years. Also first confirmed with a colonoscopy. I also had episodes of cramping that resulted in vomiting. Over the years I got progressively worse, and the only drug that temporarily held the Crohns at bay was prednisone.
In my case I was put on salofalk first, that didn't work, then Pentasa, that didn't work, then prednisone, and boom, I felt better within a couple of days. But after weening off prednisone, the symptoms slowly returned. They would put me back on prednisone, and it helped, but it was diminishing returns each time, and I got sicker and sicker. (prednisone is somewhat evil, and hard on the body)
I finally got approved for Remicade, but by then I was very ill, and eventually had emergency surgery to remove the diseased part of my colon.
After surgery I felt really good and continued for a period with the Remicade infusions, I also got subscribed Imuran. This relative good health lasted about 6 months, then I started to slide back a bit. After another few months and a new Gastro specialist, I was able to get approved for Humira. I've been on Humira for about 4 months and for the first time in ages my bloodwork is exactly where it should be and I'm feeling very well.
I guess in my experience, there seems to be a hierarchy of treatment, starting with the milder drugs, and slowly working towards the more powerful drugs, and I'm sure this is logical from a medical point of view, but in my case it failed and resulted in major surgery.
I'm in no position to advise Humira for you at your stage in dealing with Crohns, but if the treatments they prescribe aren't getting results, it's ok to push them for more aggressive options.
So far I have no side effects from Humira, I'm still on Imuran as well, so for me it could be the combination of the two that is resulting in good health.
I'm sure you will find many variations on the progress of Crohns, and also the treatment. This is how my story has gone so far. Cheers Moses Lawn

 

[hyperbole]

I have quite sever crohns, however, personally the side effects of the Humira wore off quickly for me (on 40mg weekly), and since about the first month, I don't get side effects at all from it any more, except occasionally feeling a little more tired on the day I take it.

 

[jjk308]

Humira has fewer and milder side effects than other Crohn's treatments. If you read the PDR they are all down in the very small percentage areas. I'd take it ASAP since you want to avoid the scarring and strictures that might lead to surgery. As its a very specific immunosuppressant, a TNF3 inhibitor, you don't get the systemic effects of immunosuppression and since its based on human antibodies there isn't much chance of a reaction like you might get with Remicade.
The only side effect I got was feeing a little buzzed about 12 hours later, but by taking it just before going to sleep I'd sleep through the night and it'd have no more effect than a cup of coffee during the next day.
I've been on a 40mg injection every week for 7 years now, it worked very, very well for a long time but its effectiveness is definitely wearing off. Time to try something else.

 

[trebor-HI]

Thanks for the replies. I appreciate the feedback and am happy to hear that your experience with Humira has been positive. I haven't started yet. Still struggling with the decision.

I did Imuran but after two weeks I had fevers, night sweats, lumps and a rash! Hope humira goes better.

 

[LodgeLady]

I just took my starting dose of four shots of Humira yesterday. Fatigue has been the only side effect. I took my shots in late afternoon. Still some fatigue today but dealing with it by resting.

I am newly diagnosed Crohn's since July, moderate at the ileum location. Having issues with getting off Prednisone so we're starting Humira. I am hoping I do well with it. Dr. says once I go into remission I can get off the low fiber diet and start introducing more foods.

Best of luck to you!

 

[MikeinBklyn]

Trebor,

I was in the same position as you for quite a few years. I would get bad flare ups a few ties a year. I found myself in the hospital a few times with a blockage. My GI doc put my on an IV with nothing by mouth for ten days and that allowed the ileum to open on it's own. I had surgeons wanting to do a resection flying around like vultures.

If it were not for the fact that my Crohn's became fistulizing I probably would not be on the H.

After 3½ years on Humira I feel better than ever and with no side effects whatsoever.

Personally, I would not hesitate going on Humira. I have been in remission with no sign of inflammation in the ileum and I now eat as normal, meaning everything.

Best of Luck

 

[trebor-HI]

Thanks Mike-in-Bklyn that is encouraging. After 3-1/2 years on Humira, what is your current dosage and how often do you take? Have you reduced the amount you have had to take over the years?

 

[MikeinBklyn]

I take the standard 40mg every ten days. I have gone longer between doses if I am under the weather. I think I could space it out to every two weeks again, but if it ain't broke, don't fix it.

I started with an injection every two weeks but my fistula would re-open just around the ten day mark so my doc (and I) changed the schedule to every ten days and bingo it worked.

As I have said before, I feel better now at 58 than I did when I was 28.

Best of Luck

 

[LodgeLady]

I take the standard 40mg every ten days. I have gone longer between doses if I am under the weather. I think I could space it out to every two weeks again, but if it ain't broke, don't fix it.

I started with an injection every two weeks but my fistula would re-open just around the ten day mark so my doc (and I) changed the schedule to every ten days and bingo it worked.

As I have said before, I feel better now at 58 than I did when I was 28.

Best of Luck

Glad to hear you are benefiting from Humira. Is this a life long drug or can you stop it at some point. I just started my first dose last week. The one question I forgot to ask my doctor.

 

[MikeinBklyn]

My doc hinted that this most likely would be life long. I'm good with that as long as it does what it is supposed to do.

Good Luck