Lupus or Not Lupus?

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PVS12
New Member


Date Joined Sep 2012
Total Posts : 1
   Posted Today 1:48 PM (GMT -6)   
Hello Everyone
 
I have been reading all of the lupus forums for the past couple of weeks and I finally decided to write after my confusing diagnosis.
 
I went to my primary care physician 3 weeks ago complaining of lower back pain on the left side only (it has been one year MRI shows a mininmal bulge in the l4 l5 s1)  The primary care doctor gave me all kinds of tests including the ANA panel.  I tested normal for all on the ANA panel only the Anti Dna ds is 17 high positive.  I was advised to go to the Rheumatologist who then gave me more tests(ana anti dnad homogeneous titer, Hepatitis, Rheumatoid Arthiritis, thyroid all other autoimmune diseases)
 
My homogeneous titer was 1:160(high) my CRP, Sed rate, c3, ch50, urinalysis all are normal the (C4 was a high but low would complement the ANA titer).  I have no symptoms besides the left side lower back/hip pain, the pain is worst when sitting and it numbs my entire left leg and sometimes arm.  I have no fatigue, no inflammation or joint pain.  I am dark complexioned so its hard to tell the maler rash but when I get hot my face does have redness and bumpy spots(like heat rash) exactly at the bridge of my nose and cheeks.  I always turn red when hot i am not sure if its a maler rash or not. 
 
The Rheumatologist said since i have no syptoms and all other tests are normal he does not think i have lupus and will test me again every 3 months. 
 
I am very confused and scared as we are trying to get pregnant.  Please give me some advise.  Thank you in advance for all the help.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted Today 2:27 PM (GMT -6)   
1:160 is not high. A malar rash is always a rash, not just when you are hot. It seems to me that your back pain is from your back issues, since you have no other symptoms for Lupus.

Trust your doctors and if you worry, get tested again in 3 months, but I can't say I hear anything that would indicate Lupus.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

snowcone
Regular Member


Date Joined Jul 2012
Total Posts : 73
   Posted 9/20/2012 10:26 PM (GMT -6)   
so what would be considered high? mine is 1:650 and my rheumy won't say for sure that I have Lupus. i do have the symptoms of Lupus and yet he won't say it!
The offer still stands- John 3:16

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/21/2012 12:43 PM (GMT -6)   
Any score over 1:40 is considered positive. The higher the number gets the more inflamation you have. This level can change everyday.

If your doctor won't give you the diagnosis or treat you then find someone who will.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, and Allergies

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

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 9/21/2012 3:11 PM (GMT -6)   
High ANA does not directly mean more inflammation. You can have a lot of inflammation without your ANA changing at all. While any non-zero ANA is positive, many doctors don't consider it meaningful until it's over 1:320. A high number would be something like 1:1280. There are other blood markers that measure inflammation, such as:

Blood Tests to Detect Inflammation said...
Erythrocyte sedimentation rate, C-reactive protein and plasma viscosity are blood tests that detect inflammation. These are useful tests to help diagnose and monitor the activity of certain diseases.


What ANA does measure? labtestsonline.org/understanding/analytes/ana/tab/test
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Post Edited (Lynnwood) : 9/21/2012 2:24:22 PM (GMT-6)


Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 9/21/2012 3:27 PM (GMT -6)   
@snowcone -

Lupus is not diagnosed by a single blood test, such as ANA, but by having 4 of 11 symptoms. See the Diagnosing Lupus link below my signature for the details.

A positive ANA can indicate the presence of an auto-immune disease, but there are some people who normally have a positive ANA but no symptoms -- those people are usually not diagnosed, nor would they be treated.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/21/2012 5:00 PM (GMT -6)   
Mea Culpa...
I misunderstood about the titers.
Still learning this mystery disease...
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, and Allergies

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

prophecy111
New Member


Date Joined Sep 2012
Total Posts : 5
   Posted 9/24/2012 11:16 AM (GMT -6)   
Hi there,

I am new to this forum...about 2 months ago i noticed a small blister like bump on my upper right arm which was very itchy (I thought poison ivy) ... Then within 3 weeks i had a full blown rash which was brought on my excessive sun bathing.. It was on my buttock, front and back of legs, arms, and the start of my belly and back before i got to hospital and was put on 5 days of 40mg prednisone. After being off for 2 days i was back where they gave me a month supply starting at 40 mg till i ween down to 0 which i am doing now...presently on 25 mg. The rash has subsided but has left purplish scarring on most of my body.. My ANA was 1:80 and biopsies said maybe lichen planus or SLE overlap.. But not conclusive... i have met with a rheumatologist and am awaiting by blood test results... I have joint pain but no other symptoms other than this ugly rash on 80% of my body..Has anyone else suffered from a rash which blisters and is severely itchy?? To get back they have skin Lupus?? If so what treatments work and do i need to stay on prednisone as i have heard it is not a nice drug to continuously be on.... I am so frustrated as of two months ago i had perfectly fine skin and no symptoms other than a sore muscle here and there..

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 9/24/2012 11:26 AM (GMT -6)   
Was the whole rash blistery? If so, maybe it could be shingles?
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

prophecy111
New Member


Date Joined Sep 2012
Total Posts : 5
   Posted 9/24/2012 4:11 PM (GMT -6)   
No it started out as kind of looking like bed bud bites, then it spread to fronts of legs from thigh to top of feet, on buttock, inside arms and out...only some of the bumps blistered, others were just raised and very itchy..i still have it and it has been almost two months although prednisone has managed to get it under control..not shingles because it was not contained to one area, and it spread.. any other suggestions besides skin lupus...( all doctors do think i have some form of autoimmune disorder... I just can't figure out what caused it or what it is, unless it started with sun bathing..

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/24/2012 7:05 PM (GMT -6)   
I recently saw something posted here about that kind of rash....

It's a rare form of lupus....but I can't remember who posted it.

Anybody else remember the post?
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! :))

prophecy111
New Member


Date Joined Sep 2012
Total Posts : 5
   Posted 9/24/2012 7:22 PM (GMT -6)   
Rare form of Lupus??? Argh!! That is not what I want to hear...LOL But i guess it is what it is and I can begin treatment... I have heard Plaquenil has a good success rate when dealing with autoimmune disorders.. i would love if someone could tell me the name of the skin disease couchtater is talking about.. Thanks all...and nice to know i am not alone in this crazy land of Lupiness!!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/24/2012 9:49 PM (GMT -6)   
Found it! Tumid lupus
There's photos of it on the web. See if it looks like that.
 
VIEW IMAGE
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! :))

prophecy111
New Member


Date Joined Sep 2012
Total Posts : 5
   Posted 9/25/2012 5:30 AM (GMT -6)   
hmmm....not quite like that picture...to me it looks like guttate psoriasis but biopsy came back as negative for that... I have lived abroad and I am surprised they have not tested me for Hep c or even celiac's disease?? I am sure they will get to bottom of it all and i seem to have a good set of doctors working to find out what it is....My biggest concern is the scarring it has left... I start 20 mg of prednisone today but already lesions are returning, and i really don't want to go through pain of burning and itching blisters again.. I see my derm tomorrow and i am hoping she will start me on plaquenil as everything i have read says it has a great success rate....with little side effects..
I am happy to see that alot of people have posted positive comments on dealing with Lupus if it is that.. I find out in 3 weeks!!

vandygrad97
Regular Member


Date Joined Nov 2003
Total Posts : 66
   Posted 10/4/2012 9:17 PM (GMT -6)   
OMG Prophecy111! I could have written your post. The rash you speak of is exactly what I had this summer that totally came out of the blue. It started with raised, red itchy bumps that were on my shins and elbows, then it migrated to my scalp, chest, abdomen and thighs. It was so intensely itchy that I couldn't sleep for weeks. I still have it and it started the first week of July. The only thing that makes it go away is prednisone, but as soon as I stop, it comes back again. My skin biopsy was also positive for lupus and lichen planus. I hadn't been diagnosed with lupus at the time, but they ran the full panel, and my ANA, Anti-Jo-1, Scl-70, and MCTD all came back positive. Now waiting to go to Johns Hopkins Lupus Center for my full evaluation, since I also have Crohns and fibromyalgia. Did your rash finally go away? I must say, it has to be under the connective tissue disease spectrum.
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