Humira reaction??? Please help.‏

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antsawol
Regular Member


Date Joined Nov 2008
Total Posts : 20
   Posted 12/20/2008 3:31 PM (GMT -6)   
Hello, My name is Anthony, and I am 33 years old.  I just recently signed up at healingwell.com I live in NJ and have had health problems for the last 18 years.  I had a collapsed lung in 1994 and again in 1995.  Shortly after that I got Ulcerative Colitis.   I tried Remecade in 2006 for UC.  Within a week I was hospitalized as with serum sickness.  It was the worst pain I had ever experienced till now.  I started Humira in march of 2008, and within a month I felt a burning under my wrist watch and didn't associate it to the humira and continued to take it until mid July.  Between March and July the burning sensation in my skin was now on both arms and then slowly spread to my feet.  I have figured out that it is directly related to friction on my skin. These past few weeks the pain has gotten excruciating.  I've been to two Neurologists, an Immunologist, an Internist, a Pulmonary doctor, and a Hematologist.  The Hematologist found that my Eosinophils were slightly above 5%.  He told me to take a Claritin and an aspirin, and said that I would be ok. I started B-12 shots about 1 1/2 weeks ago.  I have also upped the steroids to 60mgs.  It's not helping.  Is there a certain type of doctor that I should be seeing, and should I ask for a certain type of treatment?  I have told every doctor that my lungs and my heart hurt, but none see to be concerned about that. I had a chest xray last week and that was clear. I asso had a skin biopsy last week as well, and I am currently waiting for the results. All the doctors say that the Humira is out of my system, and that this cant be a reaction to it. 
 
My theory is that the antibodies made by the Remicade in 2008 are making the Humira reaction progress slowly.  Can this be true? Please help.  Everyday is worse. 
 
Thank You Anthony.

EMG-negative
Chest xray- normal
blood work- slightly elevated b6 (11/08)
normal b6 (12/08)
b12 280pg/ml (11/08)
193 pg/ml (12/08)


  • UC 15 years - Colazal
  • pneumothorax 2x left side

Post Edited (antsawol) : 12/20/2008 1:34:18 PM (GMT-7)


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 12/20/2008 3:38 PM (GMT -6)   
     Hi Anthony,
          I'm a little confused.  Isn't Humira and Remicade related?  Seems if you had a bad reaction to Remicade that the doctor shouldn't have put you on Humira.  I may be wrong because I certainly am no doctor but just curious.  Have you seen a GI doctor?  Did you just up the prednisone on your own?  60 mgm is a  pretty high dosage and prednisone is no drug to play around with.  It can do a lot of harm to your system.
         I see you live in NJ...so do I.  If you live in south Jersey (near Philly) where I live I can recommend a wonderful GI doctor. 
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


antsawol
Regular Member


Date Joined Nov 2008
Total Posts : 20
   Posted 12/20/2008 3:50 PM (GMT -6)   
I was told that there were human proteins in Humira, not mice/rat proteins.  They suspected that the reaction was due to foreign protein.  My colitis has been in check, with minimal flair ups in the last 8 years or so.  My GI doctor said that Humira might might be albe to get me off the colazal.  She told me there would be no side effects with Humira.
 
The Hematologist upped the prednisone on Dec. 17th.  I think the dose sould be even higher. 
  • UC 15 years - Colazal
  • pneumothorax 2x left side


antsawol
Regular Member


Date Joined Nov 2008
Total Posts : 20
   Posted 1/3/2009 9:46 PM (GMT -6)   
I just got out of the hospital after about 10 days.  I couldn't stand it anymore.  They ran ever test posible, and came up with nothing.  I think I found a doctor that is willing to follow this through and figure out what this is.  This is my second day home, and can already feel the  burning in my arms, hands, and feet.
  • UC 15 years - Colazal
  • pneumothorax 2x left side


antsawol
Regular Member


Date Joined Nov 2008
Total Posts : 20
   Posted 1/17/2009 10:43 PM (GMT -6)   
I just got word a few days ago that I have RSD/CRPS.
  • UC 15 years - Colazal
  • pneumothorax 2x left side


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 1/18/2009 9:36 AM (GMT -6)   
God, I am So sorry! What a horrible, horrible diagnosis.... I had no idea what that was, but looked it up. Ugh... I suppose you know now that the Humira is unrelated- can you still take it, I wonder? Good luck- I can't even imagine getting such devastating news. They do treat it with all sorts of things, ranging from therapy to medications.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 

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