FOR those that were ANA negative.....

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Confused725
Regular Member


Date Joined Jan 2010
Total Posts : 27
   Posted 1/31/2010 1:34 PM (GMT -7)   
WERE you Anti RO possitive or Anti- DNA Possitive? Was ANY bloodwork possitive?
 
My Dr told me, it was almost impossible to be negative on all the bloodwork......
 
TY!  :-)
 
 

okie
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Date Joined Dec 2006
Total Posts : 2818
   Posted 1/31/2010 2:47 PM (GMT -7)   
Do you seee a rheummy that knows anything about Lupus? not all rhummy's do. I am sure there are many folks in this group that have had alll their blood work come back possitive. When you talk toyour dr's office again ask if the doctor has training in auto immune diiseases. .

systemic sclerosis,scleroderma,sleep apnea, anemia, COPD
 

 But those who wait on the LORD will find new strength. They will fly high on wings like eagles. They will run and not grow weary. They will walk and not faint.
 


Confused725
Regular Member


Date Joined Jan 2010
Total Posts : 27
   Posted 1/31/2010 3:20 PM (GMT -7)   
Hi Okie,
 
I think you may have misunderstood me......My Dr said it was just about impossible for someone to have "ALL" the bloodwork come back "Negative" (Not possitive) & then find out later they have lupus.
 
In other words, out of ANA, Anti DNA, Anti Ro, ALL  tests negative & still have Lupus.
 
Hopefully I clarified that. Sometimes the typing lingo gets funny, lol.  :-)
 

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 1/31/2010 6:50 PM (GMT -7)   
I have only had 1 positive test that I know of antiphospholipid antibodies and I have lupus. I have had tons of blood work and it always comes back negative.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


Confused725
Regular Member


Date Joined Jan 2010
Total Posts : 27
   Posted 1/31/2010 7:00 PM (GMT -7)   
Hi RedRose,
 
May I ask how you were diagnosed then?
 
None of your labs were possitive? ANA, Anti-Ro, AntiDNA, ESR? NOthing??
 
Thx!  :-))

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/31/2010 7:19 PM (GMT -7)   
Hi,

My rheumy dx me with lupus in October, then told me in December that I don't have lupus, I have a "lupus-like" autoimmune disease. He seems to base this on the fact that I'm currently ANA negative.

I have the malar rash, the photosensitivity, Raynaud's Syndrome, other lupus-y symptoms, my anti DS-DNA was (and still is) positive, but the ANA was just "equivocal" once in 2008, and negative all other times.

HOWEVER, I don't have copies of any ANA tests from before I started taking prednisone, and I've read that prednisone can make you have negative ANA tests....? Is that correct?

JoAnn
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


Confused725
Regular Member


Date Joined Jan 2010
Total Posts : 27
   Posted 1/31/2010 8:19 PM (GMT -7)   
Hi Nasalady,
 
Must be strange to be given a diagnoses And then have it taken back.  What is his reasoning for the positiveDS DNA?
I've never heard of Lupus like autoimmune disease........
 
Yes, i did read that Medications to treat Lupus could lead to a Negative ANA.
 
 

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 1/31/2010 8:32 PM (GMT -7)   
Let me tell ya somthing confused.............nono if you think for one minute that I didn't understand what you were saying well you can guess again!mad . I read everything you wrote and as I was brilliantly responding to your post I blush completely blew it and wrote back and answered you completely  backwards LOL!.tongue  Trust me once ya get to know me you'll realize I probably said somthing really stupid. I'm actually headed for bed my breathing is shot and from my knees to my toes look like elephant feet with purple toes. I hopping on one foot and I kind of think I may be back in the stupid hospital tomorrow. But maybe if I crawl in bed right now I can avoid the hospital. It's worth a shot.
it was good talking to ya today
take care
hugs
carol



systemic sclerosis,scleroderma,sleep apnea, anemia, COPD
 

 But those who wait on the LORD will find new strength. They will fly high on wings like eagles. They will run and not grow weary. They will walk and not faint.
 


Confused725
Regular Member


Date Joined Jan 2010
Total Posts : 27
   Posted 1/31/2010 8:52 PM (GMT -7)   
 
 
LOL Oakie!! You are funny! I sure hope you get a good night sleep & feel better in the morning!
 
Gnite!

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 1/31/2010 9:21 PM (GMT -7)   

Okie - I surely hope you feel better very soon. Prayers going out that you don't land back in the hospital - unless of course, that's where you need to be.  I still don't know how you manage to keep your cool!!!

JoAnn - I have heard a variety of things about ANA, so I guess it depends on which rheumy you're talking to.  Here goes: 

 ANA, once identified as positive and part of an autoimmune disease process, doesn't need to be continually tested for because it is not an actual indicator of disease activity.  As in, it might be high when you aren't feeling so bad, or lower when symptoms are driving you crazy.  

Treatment with Plaquenil and immunosuppresants may alter (modify) the ANA . 

A positive ANA is an indication of autoimmune process, NOT fibromyalgia. 

A positive ANA might simply be reflective of Fibromaylgia.  

If you have two negative ANA's following years of positive results, you no longer have a connective tissue disease.

 The first two statements I believe to be valid and easily substantiated.  The latter three come from the rheumy I've been seeing for 3 years and am finally giving up on.  Too many conflicts.   I understand your frustration.  My ANA became negative one time recently, after a year on Plaquenil and  switching to a gluten free diet for 6 weeks.  It then reverted back to + 1:320 within 6 wks.  Which is still better than the 1:1280 that I started with.  What does it mean?  Beats me. 

Confused - welcome - and be prepared to have way more questions than answers for awhile.  It's just seems to be the nature of the beast.  Good luck and hang in there!

Lucy

 

 


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; UCTD & osteoporosis 2007; celiac 2009
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn and lots of vitamins
 
 


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/31/2010 10:40 PM (GMT -7)   
Confused725 said...

Must be strange to be given a diagnoses And then have it taken back. What is his reasoning for the positiveDS DNA?

I've never heard of Lupus like autoimmune disease........

Yes, i did read that Medications to treat Lupus could lead to a Negative ANA.


Well, he didn't really give any reasons.....just smiled his little smile and said "It's not acting like Lupus". Which makes me crazy because why is he calling it a "lupus-like autoimmune disease" then???

Now, mind you, he's my third rheumy, and until recently I've been very happy with him. I would even be OK if he told me that I didn't have lupus, if he would just bother to explain WHY he thinks that. Unfortunatley the last time I saw him I was totally brain-fogged out to the point of being almost incoherent. So I didn't ask him any intelligent questions.... shakehead

I did take the advice of someone here on the forum, called my local lupus chapter, and got the name of of a rheumy who is on their advisory board. I looked her up on the Internet and all of her patient reviews are great. So I have made an appt to see her for another opinion. If she also says I don't have lupus, fine, I don't have lupus.

I don't really want to have lupus.....two of my aunts died of lupus nephritis and my youngest daughter has SCLE. I already know it's no fun to have lupus.

I guess what ticks me off is my rheumy not explaining himself, as if assuming I wouldn't understand him??? mad
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/31/2010 10:44 PM (GMT -7)   
okie said...
Let me tell ya somthing confused............. nono if you think for one minute that I didn't understand what you were saying well you can guess again! mad . I read everything you wrote and as I was brilliantly responding to your post I blush completely blew it and wrote back and answered you completely backwards LOL!. tongue Trust me once ya get to know me you'll realize I probably said somthing really stupid. I'm actually headed for bed my breathing is shot and from my knees to my toes look like elephant feet with purple toes. I hopping on one foot and I kind of think I may be back in the stupid hospital tomorrow. But maybe if I crawl in bed right now I can avoid the hospital. It's worth a shot.
it was good talking to ya today

take care

hugs

carol


Carol, sending prayers and gentle hugs your way.....I hope you feel better very soon!

P.S. I always love to read your posts! :)
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/31/2010 10:47 PM (GMT -7)   
lucysgd said...

JoAnn - I have heard a variety of things about ANA, so I guess it depends on which rheumy you're talking to. Here goes:

ANA, once identified as positive and part of an autoimmune disease process, doesn't need to be continually tested for because it is not an actual indicator of disease activity. As in, it might be high when you aren't feeling so bad, or lower when symptoms are driving you crazy.

Treatment with Plaquenil and immunosuppresants may alter (modify) the ANA .

A positive ANA is an indication of autoimmune process, NOT fibromyalgia.

A positive ANA might simply be reflective of Fibromaylgia.

If you have two negative ANA's following years of positive results, you no longer have a connective tissue disease.

The first two statements I believe to be valid and easily substantiated. The latter three come from the rheumy I've been seeing for 3 years and am finally giving up on. Too many conflicts. I understand your frustration. My ANA became negative one time recently, after a year on Plaquenil and switching to a gluten free diet for 6 weeks. It then reverted back to + 1:320 within 6 wks. Which is still better than the 1:1280 that I started with. What does it mean? Beats me.


Thanks Lucy, it's always good to know I'm not alone in being confused by my rheumy! I hope you find a new (and better!) rheumy soon!

(((hugs)))
JoAnn
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 2/3/2010 11:00 PM (GMT -7)   
My ANA is sometimes positive, sometimes negative... my anti-Ro comes back highly positive every time its tested. No other ENA tests have come back positive for me except for my anti-Ro.

I've been diagnosed with UCTD by one rheumy, Lupus by another, and UCTD at first and now Lupus/Sjogren's by my current rheumy.

(the reason for the dr changes was because of insurance changes)

It's crazy how subjective all of these things can be. As you can see, even with the bloodwork, it doesn't tell the whole story, your symptoms I think are the biggest clues and pieces to the puzzle. That's why sometimes it can take years for a diagnosis unfortunately (in my case I think it was 6 years from my start of symptoms for a solid dx).
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007, Localized Scleroderma 2009, Raynauds 2009
 
Meds: Plaquenil 400mg/day, Pred 5 mg/day, Methotrexate 10mg/week, Arava 20/mg (what next???), Vicoprofen PRN, Flexeril PRN, Fiorinal PRN, Baby aspirin, Prenatal Multi, Vit E, B12, Fish Oil, Biotin, Calcium, Folic Acid


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 2/4/2010 7:19 AM (GMT -7)   

Hi! Everyone,

My 20 year path to my diagnosis started out with horrible sun sensitivity as a teen-> frequent infections 20's, stillborn son-> Group B strep and staph sacrilyticus after 2 healthy daughter's born-> 5 miscarriages at 8 weeks-> antiphospholipid antibody syndrome dx-> antithyroid antibodies-> Hashimoto's thyroiditis dx-> frequent falling, MS ruled out, menopause ruled in-> respiratory infections every 4-5 months->positive ANA and falling in public couldn't be ignored any longer paired with scary HA and real scary hi B/P->immunologist agreed with NP-> lupus. Not everyone is so lucky, at least I knew why I had lost my babies. And, in my role as a nurse, I worked with the drs. and professionals who believed me when I said I was not depressed, and sought a reason for the so often subjective symptoms I was complaining of. ( Subjective meaning subject to the patient's perceptions, where Objective symptoms are what drs. are in the mindset to look for... i.e. increased pulse or blood pressure, edema, impaired nerve conduction tests, positive CATS or MRIs, positive or abnormal labs. Bottom line, you can have a dx. of lupus and have every test be within normal limits, once I started plaquenil and prednisone, my ana titre went way down, and routine testing on an inflammatory panel "normal". But my dr. insists on doing bloodwork every visit, and I am going with a list of new autoimmune tests I have read about to add to the list. Like... TPO-Ab, chromatin autoantibodies, thyroid peroxidase, then ask him what SREAT is, and ask about the time frame connection to stopping prednisone or other suppressives and a resurrgence of the autoantibodies used to confirm a correct diagnosis, I am being forced by illness to consider permanent disability, and I am told the SSD denies everyone the first time around, and that lupus is one of the toughest diagnoses to get approved.  He suggested my APS would be what they would look at first. In med school they teach lupus is the great imitator, and in nursing school I learned that lupus is a diagnosis of ruling everything imaginable out first. And during the course of my fight to find out what was wrong with me, that since it flares, becomes noticible, then abates, periods where symptoms disappear, you get the now you've got it, now you don't  dilemma. And tired of fighting being so sick.

suetoo


God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.


Confused725
Regular Member


Date Joined Jan 2010
Total Posts : 27
   Posted 2/4/2010 10:43 AM (GMT -7)   
Hi sue,
 
Interestingly, I too have Antibodies to Thyroid. I have Thyroglobulin & Peridoxase. My TSH HAS remained Normal for years & still does.
Still confused, if that alone, in itself is what Hashimotos is.
 
Last week, after bloodwork, I saw the Thyroglobulin Ab's were normal...........Now thats weird, I thought.
 
 
Im surprised that after  antiphospholipid antibody syndrome was DX, they didnt check the ANA, Ect........
 
 
 
 
 
 

susan1
Regular Member


Date Joined Dec 2009
Total Posts : 80
   Posted 2/6/2010 2:52 PM (GMT -7)   
I just want to mention to you that I met a woman at the Neurologist office that was negative on ALL her lupus blood work - but actually has lupus. I guess 5-10% can be negative with bloodwork but have lupus.

Hugs

Sue
Susan
41 years old
Married with one child
 
Waiting on diagnoses:  Fibromyalgia, MFS or MS. 
Abnormalities:  Vitamin D deficient, B12 Deficient, +ANA, +ACA        MTHFR heterogenous gene A1298C
 
Rheumatologist ruled out lupus on 01/15/10

"Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go."  Joshua 1:9

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