Myositis possibly ild???

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Amberjake12
New Member


Date Joined Apr 2013
Total Posts : 4
   Posted 4/1/2013 8:51 PM (GMT -6)   
cry I'm so scared and anxious. Hopefully somebody can help. For a few years now, my upper thighs turn a purplish or resist color with spots. I think this has been happening since middle school or high school, I'm now 29. It happens when I'm standing and when it's cold. My doc thought it could be due to an autoimmune disease, so she sent me to get my ana done. It came back positive (1:40, speckled). My jo1 was high, it seemed very high to me. All other autoantibodies were negative. She also did a coagulation panel which included some igg and igm results, and all that was normal. My esr and c-reactive were both in the normal range.

I'm so concerned bc of the jo1 being positive. I researched, and found out that this is a very common result in myositis related interstitial lung disease. Seems to have a poor prognosis. Can anyone help explain this to me, bc my doc isn't very concerned, bc she says at this point I'm not symptomatic. Im just concerned bc I have a 7 yo son. Does having an autoantibody mean a disease is present??? Meaning, with the jo1 being positive do I have a myositis with ild??? Any info can help. Thanks in advance. Would also love to know if anyone else has a positive jo1 and what there docs have said. Thanks again.

Post Edited (Amberjake12) : 4/1/2013 7:56:19 PM (GMT-6)


Amberjake12
New Member


Date Joined Apr 2013
Total Posts : 4
   Posted 4/1/2013 8:54 PM (GMT -6)   
Also, does having myositis with jo1 mean j have or will have pulmonary involvement???

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 4/1/2013 9:12 PM (GMT -6)   
If I'm reading what I "googled" correctly, jo1 is just a marker for the disease, not a single diagnostic point. One site said the marker is associated as 25% of the people who have this disease have this. This does NOT mean you will develop this or any other disease.

Your doctor is correct, the symptoms are the primary indicators for a diagnosis; a single factor isn't able to predict or diagnose. As long as you are symptom-free you are good and shouldn't worry beyond what your Dr indicates.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Amberjake12
New Member


Date Joined Apr 2013
Total Posts : 4
   Posted 4/1/2013 9:40 PM (GMT -6)   
Thank you Lynwood. I'm just having a really hard time understanding what all of these tests mean... Especially the ena panels and Ana... It's all so confusing.

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 4/1/2013 10:20 PM (GMT -6)   
Amberjack,
 
JO-1 is commonly found in a subset of myositis and is associated with ILD.  Like all myositis diseases except inclusion body myositis most are treatable.  Early diagnosis and treatment changes the odds in your favor.  While there have been no new myositis specific drugs researchers better understand this family of diseases and are more successful in treating it.
 
I have both lupus and polymyositis and had an extreme and life threatening case that completely disabled me 7 years ago.  Today, I lead an active and fairly normal life and expect to live a normal life span.  What type of doctor are you seeing?  Is he experienced in myositis?  I suggest that you get a second opinion from a doctor who is even if you are happy with your current doctor to see if you should begin some sort of treatment.  If you do not want to do that at this time I would just wait but don't hesitate if you become symptomatic.  Myositis (polymyositis and dermatomyositis) exhibit a distinct pattern of muscle weakness.  IBM is an entirely different disease.
 
This link is to a paper published on myositis and at least 2 of the authors are on the medical advisory board of The Myositis Association.  One is a principal doctor in the Johns Hopkins Myositis Clinic, the only one in the world.
 
 
If you have more questions I suggest that you post on www.myositis.org on their community forums.
 
Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Amberjake12
New Member


Date Joined Apr 2013
Total Posts : 4
   Posted 4/2/2013 8:02 AM (GMT -6)   
Hi Bill. Thanks for the reply and the info. I have a lot of questions, but I'm off to work in a bit, so right now, I just wanted to ask if you were Jo1 positive??? Thanks so much for all the info. I haven't read the entire article, but I e read some and its very interesting. Have a great day!!!

Post Edited (Amberjake12) : 4/2/2013 7:17:56 AM (GMT-6)


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 4/2/2013 9:13 AM (GMT -6)   
I was not jo1 positive.  My formal diagnosis is mctd which is lupus, scleroderma and pm.  It was thought I had pulmonary hypertension and tests initially indicated I had it but a right heart catherization showed I did not.  It was only muscle weakness that made it seem like PH and the symptoms went away as I got stronger.
 
Bill 
 
 
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, September 25, 2018 3:58 AM (GMT -6)
There are a total of 3,006,362 posts in 329,344 threads.
View Active Threads


Who's Online
This forum has 161831 registered members. Please welcome our newest member, gsdjksd07.
110 Guest(s), 3 Registered Member(s) are currently online.  Details
Dimitri71, gsdjksd07, getting by