Saturday, January 12, 2013

Friday, June 15, 2012 Amarie Wright asks

Q: 25 YO Female diagnosed w/ Rheumatoid Arthritis ... What else can it be? Please help!

I am a 25 year old female with some pretty specific RA positive results/symptoms (joint swelling, RF, and CCP); however, I have also recently tested positive for anti-Jo1 and Histone Ab, as well as having a low glucose count.  I read that anti-Jo1 was only present in polymyositis, and Histone Ab was positive in lupus.  Is it possible I was misdiagnosed with Rheumatoid Arthritis 7 years ago?  Originally they said I tested positive for RA and Lupus, but later decided to treat for RA only...

Doctors have prescribed many different RA medications (Methotrexate, Cimzia, Simponi, Humira, Enbrel to treat this with the only one providing any relief being Prednisone and possibly Sulfasalazine (I am FAR from walking normally even on 50+MG Prednisone).  My two middle fingers are swollen (right middle finger far moreso than left), my right wrist only has a very limited range of motion (I cannot bend it backwards), and my right knee only creates much pain when walking, etc. (I was recently told by rheumatologist that there seems to be ligament damage); however, they have both been swollen in the past with the right knee having always been far more swollen than the left.  My feet rarely if ever exhibit swelling or pain these days, nor did they at the time of my diagnosis; however, occasionally in times past there have been tremendous amounts of swelling in my foot or feet to the point where I could not fit into a pair of shoes, but nothing has been consistent over the last 7 years.  I also frequently but inconsitently experience a sharp electrical pain on the right side of the back of my neck upon sudden movement. 

My other current or past medical issues includes: daily headaches; daily fatigue; several cases of shingles; non-itchy, slightly raised spotty redness on chest, neck and bottom/back of ears; redness on chest after sex; possible early miscarriages; iritis; ADD/ADHD; disorientation; difficulty concentrating/staying focused; bipolar disorder; a fast and aggressive pulse paired with light-headedness, shortness of breath, tightness of chest, and leg muscle weakness (similar to that which occurs if one is very sick with diarrhea) occurring anywhere from twice daily to once every two months with episode durations of as little as thirty seconds to more or less than fifteen minutes in both stressful and non-stressful times (I have never received official diagnosis for this, as it has never occurred while under a doctor's direct observation); occasional "cuts" or sores around fingernails or toenails that blister and have taken up to 6+ months to heal; and more recently, blood from the rectal area (more obviously seen during "that time of the month".  Additionally, as a baby I had a severe reaction to the Pertussin in DPT shot resulting in seizure, incubation and spinal tap.

I have been on Prednisone and Methotrexate for 7 years, so other symptoms may be masked.

I have likely forgotten a great deal of other things, but please feel free to ask me if you think you need more information to help me.  You can email me at AMarieWright@MSN.com - I only have one body, and mine is already fifty years worse off than it should be... I have the body of a 75 year old, but I am only 25 years of age. :(

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Answers (1)
V, Health Guide
6/16/12 8:40pm

Hello, AMarie,

 

You have certainly been through the medical "wringer". It is very possible to have more than one autoimmune disease at one time.  You may very well have RA and Lupus.  One of our Health Guides here does have both RA and Lupus.  

 

Sounds to me as though you need a second opinion, and your medical status needs to be reevaluated.  Have you been seeing the same Rheumy for a long time.  What information does he offer? 

 

Prednisone is a wonderful drug for controlling inflammation, even though we all know that long-term uses can cause some unwanted side effects.  I am trying to get off the stuff myself, but can't seem to get lower than 10 mg w/o a flare. Are you taking MTX and a Biologic at the moment?  Are your inflammotory markers in your blood showing your disease is controlled.

 

I am so sorry you have to deal w/all of this, and you do need some definitive answers.  What do you think about seeking a second opinion?

 

Peace,

V

Reply
Lisa Emrich, Health Guide
6/19/12 7:01pm

Hi AMarie,

 

V has already said many of the same things I was going to say while reading your question.  It is absolutely okay to get a 2nd opinion, especially when your are experiencing as many unexplained symptoms as you are.  Misdiagnosis could be possible, but it might be more likely that you have more than one autoimmune disease.  I have both MS and RA (both autoimmune).  Some of the treatment choices overlap, some do not. 

 

Work closely with your doctors to try to figure out what ALL might be going on.  Complicated cases may take some time to straighten out.  Hang in there.

 

Wish I could tell you something more definitive, but it's impossible to know what might be going on with you specifically.  We are just patients (like you) who help each other.

 

Lisa

 

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By Amarie Wright— Last Modified: 06/19/12, First Published: 06/15/12