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Ouchie2
Regular Member


Date Joined Jul 2006
Total Posts : 329
   Posted 12/30/2009 1:16 PM (GMT -7)   
Oh wow..where do I start, colitis thread or lupus thread..I usullay post in the colitis threads because thats what I was diagnosed with so I have had real probelms with GI....I have tried several other drugs including 6MP, Azathiaprine, Asacol, etc etc and after around 6 months they stop working .....so back in July 2000 I decided to take part in a drug trial for vedolizimab for colitis /chrons ....
 
I have recently (2 months ago)  had a drug reaction of some kind and ended up with a malar rash or similar on my face.  They are checking for Lupus SLE ..as I have many of the symptoms......I have had suspected ankolysing spondalitis years ago which strangly went away, I had psorisis on my hands and feet for years ..but it went away a few years ago and never came back... I have the HLAB27 gene.  My mother has all the other arthritis type symptoms as well as kidney problems, cold joints, pain, tingling, we both suffer from extreme fatigue......   Sorry to vent but this is all so very confusing. 

38 year old female
UC - Diagnosed 2006
HLA-B27 Gene
Iritis 2008
4 x Asacol
100mg Mercaptopurine (6MP)
Doxycycline


Ouchie2
Regular Member


Date Joined Jul 2006
Total Posts : 329
   Posted 12/30/2009 1:18 PM (GMT -7)   
Oh and before I forget I have had Iritis also, which hasn't come back thank fully
38 year old female
UC - Diagnosed 2006
HLA-B27 Gene
Iritis 2008
4 x Asacol
100mg Mercaptopurine (6MP)
Doxycycline


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 12/30/2009 1:37 PM (GMT -7)   
Bless your heart! So sorry you are having such difficulty! I have lupus and my brother has crohn's/uc. I know there is a connection. I certainly hope you get some difinitive answers and treament that can help. Welcome to the lupus forum. God Bless you, Judy

Ouchie2
Regular Member


Date Joined Jul 2006
Total Posts : 329
   Posted 12/30/2009 2:08 PM (GMT -7)   
Thank you so very much for your kind words Judy.....I am certain there is a connection too
38 year old female
UC - Diagnosed 2006
HLA-B27 Gene
Iritis 2008
4 x Asacol
100mg Mercaptopurine (6MP)
Doxycycline
Currently on a drug trial for Vedolizimab
Currently waiting on Lupus diagnosis (after drug reaction)


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 12/30/2009 2:52 PM (GMT -7)   
Welcome to the forum and I am sorry you are having problems
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


Ouchie2
Regular Member


Date Joined Jul 2006
Total Posts : 329
   Posted 1/9/2010 3:20 PM (GMT -7)   
Hi again..it turns out I have tested positive for a type of antinuclear antibody, I am being referred to a dermatologist and maybe an immunologist too...unfortunately I have been removed from the trial.
38 year old female
UC - Diagnosed 2006
HLA-B27 Gene
Iritis 2008
4 x Asacol
100mg Mercaptopurine (6MP)
Doxycycline
Currently on a drug trial for Vedolizimab
Currently waiting on Lupus diagnosis (after drug reaction)


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 1/9/2010 4:06 PM (GMT -7)   
Has anyone mentioned a rheumatologist? That's who you would normally see for suspected Lupus. I'm sure an immunologist would be very familiar with lupus too. Keep us posted!! Judy

Ouchie2
Regular Member


Date Joined Jul 2006
Total Posts : 329
   Posted 1/13/2010 3:08 AM (GMT -7)   
I am booked to see an Immunologist on the 2 Feb
38 year old female
UC - Diagnosed 2006
HLA-B27 Gene
Iritis 2008
4 x Asacol
100mg Mercaptopurine (6MP)
Doxycycline
Currently on a drug trial for Vedolizimab
Currently waiting on Lupus diagnosis (after drug reaction)


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 1/14/2010 8:52 AM (GMT -7)   
Please let us know what the immunologist comes up with!  Good luck!  Judy

Ouchie2
Regular Member


Date Joined Jul 2006
Total Posts : 329
   Posted 2/4/2010 4:05 AM (GMT -7)   
Hello everyone...well my rash hasn't improved, its turns out i have Rosaeca....very run down and sad right now
38 year old female
UC - Diagnosed 2006
HLA-B27 Gene
Iritis 2008
4 x Asacol
100mg Mercaptopurine (6MP)
Doxycycline
Currently on a drug trial for Vedolizimab
Currently waiting on Lupus diagnosis (after drug reaction)

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