Newly Diagnosed with Lupus? - Rheumatologist is 98% Sure, I'm still unsure…of my future..

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JCLATX
New Member


Date Joined Mar 2014
Total Posts : 1
   Posted 3/18/2014 11:22 AM (GMT -6)   
Hello everyone, I live in Austin, TX I'm a 26 years old MALE and I work as a musician and work in the healthcare sales and marketing industry. about 6-8 weeks ago I noticed a rash on my elbows/forearms light to moderate joint pain and some painful red markings on my palms and bottom of my feet which seemed to occur more around the joint areas of my fingers. In the past year or two I have noticed some occasional morning stiffness, some swollen stiff fingers and pain in my ankles and elbows but never thought much of it because it would go away within hours to a day. However I have been miserable for the past 6-8 weeks with unbearable joint pain that includes my wrists, elbows, shoulders, knees, ankles and pain in the bottom of my feet. Sometimes I can barely walk and get out of bed but the joint pain seems to be at its worst at night and in the morning and gets better throughout the day. The rash seems to change in shape and size and moves from one area of the body to the other (I have had no malar or butterfly rash). At one point it was almost all over the trunk of my body my arms, underarm and upper legs and groin area back and neck. I saw my primary care doctor first suspecting that the lesions on my palms could be related to syphilis or HIV however all of the blood work and results for those and any STI came back negative. A week after seeing my Primary I went to a dermatologist and he was almost 100 % convinced it was hives (and it looked like hives) possibly due to a drug reaction from a surgery on January 8th, 2014 I had to remove hardware from my right hip that was fractured in a car accident in 2011 (I was taking Lovenox injections for 20 days after discharge from the hospital, Hydrocodone and then started Aspirin after completing the lovenox injections. I was also on IV antibiotics and morphine at the hospital). My dermatologist was also concerned about the joint pain I mentioned. He checked my kidneys and all of those numbers came back normal and within range HOWEVER he also did an ANA test in which I tested positive with a speckled pattern and titer of 1:2560! He told me to see a Rheumatologist as soon as I could. I called dozens in the area even doctors out of network with my insurance and managed to get an appointment for one 2 weeks later however I did pay out of pocket for the entire visit. He did A LOT more blood work in including another ANA test which came back at a titre of 1:1280. The most alarming (I think) of the blood tests were the elevated SMITH and RNP antibodies at 637 and 360, respectively. At that point given the positive antibody tests, joint paint and swelling, rash he told me that I am right at about 4 out of the 11 criteria for being diagnosed with Lupus.

So now I'm worried, of course I've been stressed and reading all about the different types but what I'm most concerned about is my treatment options, can I expect to live a normal life span? What are the chances this will affect my internal organs like my kidneys, lungs and heart? Will I need to follow up with specialists on a regular basis to check these organs? I can deal with the joint pain and the rash. Right now I am on predisone and I have had a couple steroid injections which have helped tremendously with the pain and how I feel generally well and my rheumatologist has put me on Xanax for sure term to cope with the increased acute anxiety. Other than the joint pain and the rash I have always felt fine, I'm not fatigued, I have not had any fevers, mouth sores, or any other symptoms common with lupus, no hair loss, reynaulds, sjogrens like symptoms NOTHING If I didn't have the joint pain I would most like be going to the gym and going to do normal active things. Almost all of my other blood work is within range and normal regarding CBC. My sedimentation rate was 4 and my Rheumatoid factor was <20. My C3 and C4 were very slightly low at 72 and 11 and NEGATIVE for LYME total Antibody.

Things just don't add up for me for this Lupus stuff but I know the antibody tests are very accurate indicators for for SLE. Does anyone have any insight to this? Could this be a different form of lupus? Perhaps Drug Induced? What I am really worried about is potential organ damage as well as scleroderma and getting disfigured hands. I NEED MY HANDS, I am a turntablist (DJ) and I have always been very active…If this is something that's going to get progressively worse over time I'm not sure how I will be able to handle it but I'm hoping some of you may have some insight to help me thus far.

Thankyou,
John

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 3/18/2014 11:39 AM (GMT -6)   
John,

Unfortunately, there is no predicting how Lupus and your body get along. It is called the disease of 10,000 faces as it is rare to have the same thing happen with any two people.

Generally a rheumy will put you on Plaquenil, an anti-malaria med which oddly enough seems to slow progression of the disease. Your rheumy may be waiting till after the prednisone addresses the inflammation to start this. Otherwise, the symptoms are treated as they arise -- and you may never have more symptoms than you do now!

ANA and antibody tests do not "prove" Lupus, nothing really does. They indicate an autoimmune disease, there are several. The symptoms and how your body reacts to treatment are strong factors contributing to a proper diagnosis.

Try not to stress! I know that's easier said than done, but stress has a way of increasing disease symptoms. Otherwise, do the general things one is advised for good health: eat regular balanced meals (drink water), get deep restorative sleep, and get 15+ minutes of exercise a day. (This may be dancing to your music! lol)

Again, there is no way to predict or avoid organ damage, scleroderma, RA, disfigurement, etc. But you have been treated early and are on the lookout for increasing symptoms. Most rheumy's, even with mild cases, want to check on you every few months.

Hope this helps, also check out www.lupus.org
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde
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