Mild form of Lupus?? I'm so confused

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susan1
Regular Member


Date Joined Dec 2009
Total Posts : 80
   Posted 12/15/2009 5:59 PM (GMT -7)   
Hi there,
 
I am so glad that I found this forum.  After 12 years of having symptoms and always a questionable "maybe" to Lupus, I have a Rhuematologist that said she thinks I have a mild form of Lupus.  My question is, can you have a mild form and is it always progressive?
 
Here are my symptoms with flare ups that come maybe 2 or 3 times a year.  My current flare has been lasting 2 months with some new symptoms:
 
1)  ANA 1:320 speckled   other times ANA 1:640 homogenous pattern
2)  ACA (anticardiolipin antibodies)
3)  numbness & weakness in arms, legs, feet & hands when I have a flare up although tests such as EMG doesn't show actual weakness
4)  spacey out of it feeling
5)  anxiety (obviously with these symptoms
6)  New symptoms pleurisy/costocondritis
7)  mildly prominent spleen (they are watching to see if that might be my regular size)
8)  traveling burning sensation throughout my body (this is a new symptom for me)
9)  Uveitis twice
10) one daughter and two miscarriages following her
 
Does this sound like Lupus?  I really want an answer, and she is giving me one, but now I am freightened by the diagnoses.  I guess I was hoping it was Fibromyalgia instead.
 
Thank you ladies & gentlemen!
 
Susan
 

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 12/15/2009 9:48 PM (GMT -7)   
Yes, you can have a mild case -- but really that just means you haven't had a major flare, and/or that your medications are controlling disease activity.

Lupus doesn't really have "progressive" and "progressing/remitting" the way MS has. You may have a controlled or "quiet" lupus, or you may have something trigger a flare that involves more serious issues, like kidney or other organ involvement, or the flare may suddenly subside and you are practically normal again. This is one illness that is different for everyone, and thus unpredictable for everyone.

The good thing about Lupus rather than Fibromyalgia is that there are more tests to confirm the dx, and more medications known to provide control and/or treatment. Lupus is also spared the social stigma that is still associated with Fibro in some unenlightened parts of the world....
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


NSRAR
New Member


Date Joined Mar 2013
Total Posts : 2
   Posted 3/28/2013 8:58 AM (GMT -7)   
Hi

I am new to this forum and to Lupus too:) my doctor told me that I have a "Lupus like illness" because I don't have ALL the classic symptoms like the rash and the hair falling.. But my ANA is positive and I have joint pain and extreme fatigue and ulceration in the nose.. He even prescribed hydroxc.

I don't understand, if it is an autoimmune disease, that means it manifests differently for each person right? I am still trying to understand more I just found out that I have this "L like illness" 2 days ago..

Thanks

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14417
   Posted 3/28/2013 1:08 PM (GMT -7)   
Welcome NSRAR,
Lupus is an odd illness. Like Lynnwood posted it changes according to the person. There is some things that are the same for everyone but then there is differences too.
My rash is an all over on my face. I get mouth and nose ulcers. I also get joint and muscle pains and extreme fatgue.

Lupus has a thousand faces.

Don't forget to post an introduction thread so you're not lost in this old thread.
There is more information on lupus you can find at lupus.org and lupus.com
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

EleanorE
New Member


Date Joined Mar 2012
Total Posts : 1
   Posted 4/4/2013 4:49 PM (GMT -7)   
I'm sitting here and reading all the " wonderful" things about Lupus. I've had blood work done. My ANA was high and speckled as was my SED rate. From what i'm gathering? It's such a hard DX to give to someone. I was sick with a sinus infection and now its going on more than a month of treatment, antibotics and now a cough that i wish would drop dead already. Is this what im going to experience every single day of my life? I lost over 100 lbs was working out 7 days a week, had to stop due to my back and hip problems. Now, i've gained 10 lbs.. and im so sick of this already.. and was just DX last week.. I cannot imagine getting on treadmill now? I prolly would drop dead.. i really hate this.. and i want more answers. My DR. really doesnt want me to go to a Lupus specialist just yet.. he would rather treat the symptoms as they come. I agree, for i dont want to be on long term steroids.. i've seen what they did to my GF who has COPD. I have a prob sleeping due to anixiey, and now>? I jsut read that i cannot take my amino acid wiht melintonin in it.. really?

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 4/4/2013 7:48 PM (GMT -7)   
Are you being treated with any controlling meds?  If not, why?
 
Lupus presents, responds to treatment, and progresses differently for each patient.  There is no set progression for this disease with a 1000 faces.
 
Has your doctor suggested a treatment?  Most cases of lupus are controllable.
 
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.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14417
   Posted 4/4/2013 9:14 PM (GMT -7)   
Yes, melentonin is bad for lupus because it raises the immunity, which we don't want to happen.
You don't have to be on a steady dose of predisone. My Rheumy is treating me with what I call blasts. I will take a strong dose then taper down over 10-14 days. This usually helps me through a flare.
These rounds are only given when I'm in a bad flare that I can't work through. He tries to limit my predisone exposure as much as possible.

My kidney doctor took me off of anti-inflamatories (NSAIDS) because she was worried about them causing protein spills in my urine.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))
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