Humira

[Kimberly511]

Has anyone been on Humira and what kind of result did you have? Any side effects? I am on lots of meds which are not decreasing the pain. My doctor wants to put me on Humira and I was wondering if anyone out there has had any success with this drug. I am desperate to NOT be in pain anymore. Help...Kim

[pro2675]

Things went good and bad.  So, here is the good.  I have gained 7 lbs.  Now I am at 123lbs.  In Dec.  it was 98lbs.  Big improvement.   My blood work was good.  However, my amaleyse is staying up.  Along with excessive wheat in my stool.  To deal with the wheat I'm now taking Diflucan for ten days.  The pancreas issue with the amalayse to high is the result of pancreatitus.  But they didn't really say how we or they were going to treat it.  But at least they know now why I stay nausea with severe vomiting and stomach and right side (r. flank) pain.  So, if any of you fellow crohnies have this pancrease problem please let me know how you are dealing with it and your treatment. The only thing I know from the other attacks is for me to stay away from fatty foods.  Which i do anyway.  I eat no more than 35 grams of fat a day. I know that when I was taking Imuran I was in the hospital 3-5 days.  about 10 or 12 years ago my old gastro thought I had the pancreas attacks twice. Which  It never happened before and at the time it just happened when I took the Imuran.  

I have been on the humira since Aug. every two weeks.  I'm still having alot of very watery bowel movements, vomiting, fever, chills, joint pain, stomach cramps, intestinal, spasm's.  So, they decreased the bentyl to twice aday instead of 3-4 times.  Two loratabs to 1 at bedtime.  Zofran 1 every 12 hours instead of 1 every 6 hours.  That wasn't a very good idea I thought.  But wants me to take 4 drops of opium tincture and 6 lomital a day.  So, now the humira every week.  I guess we will see how it goes.  They gave me two humirra samples.  I'm worried that it is just some that was returned when another patient couldn't take it.  Because it does not say sample on the package.  I didn't think it came in a sample.  i'm going to ask someone from where it is shipped from every week. I have enough problems without using a bad injection.  

Sorry this was a long one but that brings you all up to speed.  Please let me know if any of you have or had any of the above problems.

Thanks,
pro2675
aka-becca

[coughting]

Hope all went well at your appointment.  
Jayne

[pro2675]

I go to see gastro today.  Everyone say a prayer it goes well.  I will post how it goes later.

Thanks to all who posted advice and their experiences.

pro2675

[coughting]

I was feeling so much better than I had in months.  I had started Remicade and it was doing wonders for me.  I could actually eat food and was getting entergy back.  Just cloudy urine.  
Yes, had to have it removed.  But this happened to be a blessing in disguise, because I was feeling great, getting strength back etc.
They did a bowel resection and I had 2 fistula (only knew about 1).  Just as Davedog, they found a cancer in the crohns infected part of my colon, It was just a mass of colon all wadded up, the bariatric surgeon said he didn't know how I was standing it.  In the middle of all the infected colon they found a cancer.  It was an incidental find and was so new and not spread that I didn't have to have further treatment.  I went to the oncologist every 3 months for a couple of years, now every 6 months and later 1 time a year for life.  
I know that if I hadn't had the fistula and had to have it removed, I would be in really bad shape by now as the cancer would have been rampant.
So far my crohns is still in remission.  Best of luck to all.

Liz and Davedog,
Hope you are doing better each day.  Attitude helps us make it through each day, keep a positive attitude and get better.

Jayne

[davedog]

I am a 50 year old male and was diagnosed with Crohn's when I was 13.  I have had four surgeries related to Crohn's, colon cancer was discovered on my second to last surgery in '97.  Cancer was found in time, before it spread.  Timing is everything, and regular checkups.  My struggle with Crohn's continues.  

I have tried all meds except the biologics.  I have been researching, via internet, LDN (low dose Naltrexone).  Dr. Jill Smith at Penn State (Hershey) has conducted clinical trials using LDN and has claimed positive results.  Has anybody tried or heard of its effectiveness?  

[pro2675]

Thank you so much for the info.  How did you feel other than the bladder infections?  Did you have a test ?  What did they do to remove the fistula?
      I had a fistula near the rectum and had to have it removed.  It was 2in long and 2in deep.  It had to heal from the inside out.  So nasty and incon.  Thank you again.  Please more info if you can.

Thanks
Pro2675