Official Diagnosis by Rheumatologist

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rootsmith
Veteran Member


Date Joined Jan 2004
Total Posts : 598
   Posted 2/25/2009 11:20 AM (GMT -7)   
I just wanted to report that I finally, after many years, have an official diagnosis of crohn's related spondyloarthropathy.  I asked him about "undifferentiated spA" and he said no, I am "differentiated" in that I have enteric symptoms.  So I told him they haven't really found evidence of crohn's other than significant improvement of symptoms from a trial of mesalamine.  He said in that case I could be undifferentiated spA but it doesn't matter what you call it because they are all treated the same.
 
I'm on 1 gram pentasa 3x day.  I've often wondered if this is the cause of the feeling of malaise I describe. I don't remember it before pentasa but ??? Who knows, hard to remember.  I stopped mtx.  I am currently on azathioprine but probably won't stay on it.  They do a blood test for an enzyme that is used to metabolize it.  People who have a low level have a greater risk of serious side effects from the drug.  My level was marginal so he decided to try me at 50mg a day.  For about a week I had no problems. I thought it was great. Then I caught the killer cold going around and even though I seemed no sicker than anyone else around me, I decided to stop the azathioprine for 5 days just in case. ( I had called the office and his nurse thought he might do that) When I went back on it I am finding that I feel just like I did with mtx in the end.  For hours after I take it (I take it at bedtime but I often stay up about an hour afterwards) I feel awful and now I'm starting with the symptoms the next day.  If he thinks that I should come off this, then the next step is humira.    He seemed to think my only two choices were 1) humira or 2) do nothing.  That was when I asked about trying another DMARD. Actually he said remicade or humira, both of which are approved for spondyloarthropathy but that mouse problem with remicade worries me. On the other hand, sticking needles into myself doesn't sound like a lot of fun. 
 
My gi doctor is not enthused about me taking humira.  However, he is also not interested in treating joints.  The rheumy accepts the gi's diagnosis but recommends humira for my joints (after showing I couldn't tolerate the oral meds)
 
So, that's where I'm at.  I don't know why I consider this my official diagnosis, instead of crohn's.
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, amlodipine, simvastatin,levothyroxine, sertraline, lyrica, failed methotrexate, failing azathioprine


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 2/25/2009 2:08 PM (GMT -7)   
I dunno of any advice to give ya.... but I do want to say a sort of 'congrats' on your diagnosis... I mean... Not that it's a nice thing to have... but... after many years of putting up with problems, it's good to finally know "what it is"...
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 2/25/2009 3:58 PM (GMT -7)   
My SpA is actually worse than my Crohn's gut symptoms. If course, I have officially been changed from SpA to Ankylosing Spondylitis though there is really no difference in the treatment. I have some major SI joint involvement so that's why the AS diagnosis. Remicade worked wonders on my joints until it stopped working after 2.5 years. Humira seemed to work fine but I had to stop it due to a severe reaction.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 2/25/2009 6:33 PM (GMT -7)   
Fear of the unknown is always the worst. Glad they got you an answer. Hope you get it all figured out soon. As far as needles go...you do what you have to do.
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