View Full Version : 28, not diagnosed yet

02-12-2009, 04:25 AM
Hi, I found this forum because I got my blood work back yesterday an I was referred to a rhuematologist. I've always had a high ANA count, since I was 16. I'm now 28. My titer is 1:1280 and I've always come back negative on all of Anti-SM/RNP/SS-A/SS-B tests. I also have a high C-Reactive Protein of 2.2- normal is .0 to .6. I was wondering if anyone in this forum had similar symptoms before they had the full blown symptoms? My great Aunt had lupus. I'm not sure if it's genetic or not. My mother has always had a high ANA count too, but she had arthritis in her hands. I've been tested for Rheumatoid Arthritis and apparently I don't have it.

The only symptom I've had since I was young was Raynaud's disease.


02-12-2009, 10:59 AM
Normal, healthy people can sometimes have a high ANA. Also, some people with a family history of autoimmune disease may have a high ANA titer. The higher the titer, however, the more likely it is that a person has an autoimmune disease.

An ANA titer can mean many things because the test is non-specific. An antinuclear antibody (ANA) test measures the amount and pattern of antibodies in your blood that work against your own body (autoimmune reaction). When cells die, the contents that are now released can be seen as foreign and antibodies are made against the foreign cells. In autoimmune disorders, there is also cell death and the formed ANA antibodies can be found. Once an antibody is made, it can stick around for many years, and if cell death is occurring (which happens all the time) antibodies can be renewed and titers can be elevated. If doctors are suspecting lupus, then fragmentation of the ANA antibody types are also used, also clinical signs and symptoms, other lab results such as complement, sedimentation rate etc are used in conjunction with ANA in order to verify SLE.

The results of an ANA test are usually given in titers. A titer is a measure of how much the blood sample can be diluted before the presence of the antibodies can no longer be detected.

Raynaud's Syndrome is one of several auto-immune disorders that will have an elevated ANA. An elevated ANA can also be caused by:
Rheumatoid arthritis ( More than one-third of people with rheumatoid arthritis have a high ANA titer), Systemic lupus erythematosus (SLE - Almost all people with SLE have a high ANA titer. But most people with a high ANA titer do not have SLE), Scleroderma, Sjögren's syndrome, Juvenile rheumatoid arthritis, and Polymyositis.

There are autoimmune diseases of other organs that can also cause an elevated ANA: Addison's disease, Diseases of the blood cells, such as vitamin B12 deficiency, idiopathic thrombocytopenia (ITP), and hemolytic anemia; Liver disease, such as hepatitis; Thyroid disease, such as Hashimoto's thyroiditis; Medicines, such as those used to treat high blood pressure, heart disease, and tuberculosis (TB); and Viral infections.

The presence of high levels of C-reactive protein (CRP) in the blood indicates inflammation is occurring somewhere in the body. The c-reactive protein, also known as a CRP test measures the level of a specific protein in your blood called c-reactive protein. This protein is produced by the liver and signals acute inflammation. A negative c-reactive protein does not necessarily indicate that no inflammation is present. This blood test cannot determine the location of inflammation or its cause. Thus the CRP test is often used in conjunction with other tests to confirm a diagnosis related to infection or inflammation. additional blood tests may be performed, including:

ANA test. Measures blood levels of antinuclear antibodies. These are often present in patients with autoimmune diseases such as rheumatoid arthritis or lupus. People with such disorders often test positive for ANA, but a positive result is not specific evidence of a disease. Other factors, such as the use of certain medications, may also result in a positive ANA test. Further testing is necessary to establish a diagnosis.

Rheumatoid factor test. Detects the presence of rheumatoid factor. This antibody is found in the blood of most patients with rheumatoid arthritis. RF may also be found in other rheumatic conditions such as Sjogren syndrome and sometimes even in healthy people.

Sedimentation rate (sed rate). Measures the rate at which red blood cells (erythrocytes) separate from the liquid part of blood (plasma) and fall to the bottom of a test tube, forming sediment. Higher sed rates indicate the presence of inflammation and are typical of many forms of arthritis (e.g., rheumatoid arthritis, ankylosing spondylitis) and many of the connective tissue diseases, such as lupus. Like the CRP test, this test is also not specific, as it does not reveal the source of inflammation.

It appears that there is some sort of auto-immune activity going on with you. It is just not determined exactly what it is and, hopefully, your current treatment regimen will keep your symptoms from escalating.

I hope this has been helpful
Peace and Blessings

02-12-2009, 01:08 PM
Welcome Andreamsu80.... :D

Just wanted to say hello. Glad you decided to join up. You've found the right place to find support and answers to your questions, among people that care.

Looking forward to hearing more from you.


Lori :P

Angel Oliver
02-12-2009, 01:11 PM
Me too.......just want to welcome you. You'll enjoy it here and hopefully we can help you with what you need to know.I dont have too many answers but i'll try.If i carnt im sure someone will be along soon to help you out.


02-12-2009, 03:35 PM

Thank you for your thoughtful response to my question. There are so many questions I have. My appointment is on Monday, which I've had these type of appointments before, and they can never tell me anything. I always feel like I"m just waiting for some new symptom to appear so they can diagnose me! My husband and I are ready to have children and I'm a little worried that the high ANA may affect pregnancy- I've read up on it a bit. I"ll keep you posted.


02-12-2009, 05:25 PM
Hello and welcome Andrea :)

That's a very good question to ask at your doctor's appointment. My sister had problems untill they tested for lupus. She was diagnosed for lupus and with good medical guidance she now has two very healthy boys who by the way are almost adults now :)

Good luck with your appointment, keep us posted.

02-16-2009, 01:28 PM
The doctor ran more blood work and urine samples... of course. She said I only have a few symptoms, so she can't be sure. I asked her if the constant inflammation is doing damage to my body (since I've had a titer of 1:1280 for 12 years). She said that it was and that, after my next visit she might put me on Plaquenil. Has anyone heard of it? She said was safe to be on while pregnant?


02-16-2009, 02:14 PM
hi andreamsu80,

welcome to the forum. You are probably getting a big laugh out of all of trying to get this new stuff down. Most of us are on Plaquenil. I have only been on it for a couple of months, and I understand that it takes about 5 months for effects to be felt. It is my understanding that it slows the progression of Lupus, and can help keep us off steroids (sometimes./) I am sure that others with a lot more info that I do will be along shortly.

Best of luck, and welcome,

02-18-2009, 09:56 AM
I wanted to know if anyone had a postive ana test than later it was negative. is this test always positive if you have lupus. my was and my blood pattern speckled. can't rember the tier the lab in ca said i had lupus but the last blood work i had the ana was negative. so was i mis dignosed. can anyone help me with that. thanks

02-18-2009, 10:33 AM
hi gina,

i am sure that saysusie will be along and she can better answer your question. But, I have read in other posts where the ANA can be affected by whether you are in a flare.

my ana has always been positive and hemogeneous, but the numbers have varied. Sorry I can't be more informative, I just wanted you to know that we are here, and someone smarter than me will be along.

02-18-2009, 11:17 AM
thanks, one dr said i had lupus but a mild case in 2005, before that they said i had ibs was allergic to sulfa drugs, pms, put mo on beta blockers in 2005 was in hospital 3 times for dehyrdration had every gi test out there showed nothing was refered to rhemo. dr he referred me to internists who sent blood to ca which said it was lupus. my symtoms were hair loss nausea joint pain fever couldn't keep food down. the food thing past. now my memory isn't worth anything. by hands and feet are swollen thought i had dietbetes (SP) bad. but the three hour test said no just high blood sugar. my last blood test said ana neg. had loss in folice acid and my good cholestrol was high. haven't change anything in diet for that to have changed. my hips hurt all the time and back hurts most of the time. swelling goes away in fingers but not in feet, hair loss bad but no balding. fatigue bad there are nights i stay up all night but body is so tired. when you have a flare are they different ones? what is remission no signs at all. or you just feel good that day or do they last for long periods of time? i have so many questions and just join this group. i am gratefull for all the answers you can give me.

02-19-2009, 10:39 AM
Let me answer your question about Plaquenil. This is one of the best tolerated drugs in the treatment of Lupus. Inflammation is one of the primary symptoms of Lupus and this can occur in the muscles, tissues, joints, and organs. Plaquenil is usually the first line of defense to combat moderate inflammation caused by Lupus.
Plaquenil is Hydroxychloroquine sulfate that was originally used to treat malaria. However, researchers found that it was effective in treating diseases such as Lupus and RA. It especially works well when treating skin manifestations of Lupus. The average adult dose is 400 mg (=310 mg base) once or twice daily. This may be continued for several weeks or months, depending on the response of the patient. For prolonged maintenance therapy, a smaller dose, from 200 mg to 400 mg (=155 mg to 310 mg base) daily will frequently suffice.
Plaquenil is cumulative in action (it has to build up in the system) and will require several weeks or months to exert its beneficial therapeutic effects. However, you may feel minor side effects relatively early. Several months of therapy may be required before maximum effects can be obtained. If objective improvement (such as reduced joint swelling, increased mobility) does not occur within six months, the drug could either be discontinued and another drug tried or Prednisone may be added to your treatment regime along with the Plaquenil.
I hope that this has answered your questions. Please let me know if you need anything further.

Peace and Blessings

02-19-2009, 10:58 AM
Yes, your flares can be just as different as your symptoms. Today, your hips may hurt; tomorrow you may be nauseaus; the next day you are so tired that you can't move.
Just as our flare-ups can be different, so can our remission. You may no longer have pain in certain areas, but the fatigue is still unbearable. You may be able to keep food down, but the pain is relentless.
The horrid nature of this disease is that it does not follow any logical path for any of us. We never know what to expect day to day.
Have your doctors talked to you about the possibility of having over-lapping (aka: co-existing) diseases? There are many of us who have Lupus, but who also suffer from additional auto-immune disorders. Some of us have MS, some of us have Fibromyalgia, some of us have Sjorgen's .....some of us have 4, 5,6, other auto-immune diseases in addition to Lupus. It is a fact that, once you develop one auto-immune disorder, it opens you up to developing other auto-immune disorder. These disorders do not seem to want to travel alone. So, you may have Lupus, as well as Fibromyalgia (as evidenced by the IBS), as well as Gerd (as evidenced by the gastro problems).
ANA, by itself, is not an indicator of Lupus. If a person tests positive for the antinuclear antibody, it means only that the person could have lupus. Further tests are needed to determine if a person actually has lupus. Those include tests for Sm (Smith), Ro/SSA (Sjogren's syndrome A), La/SSB (Sjogren's syndrome B), and RNP (ribonucleoprotein) antibodies. However, there IS ANA-NEGATIVE LUPUS. This is a condition in which a person’s ANA – or antinuclear anitbody – test comes back negative, but the person exhibits traits and symptoms consistent with someone diagnosed with lupus. The ANA test is used to screen for lupus, not diagnose it.
But in rare instances, some patients have negative ANA and exhibit traits consistent with lupus, specifically these four, which unequivocally diagnose SLE:
1) High titer anti-double stranded DNA antibody
2) Anti-Sm (Smith) antibody
3) Biopsy-proven kidney disease
4) Biopsy-proven skin disease
Furthermore, antibody tests and symptoms go hand in hand. Antibodies alone do not diagnose the disease. If you have all four of the above referenced traits, you will, most likely, be diagnosed with SLE. If you do not have all four, then any diagnosis is presumptive. It is presumed that you have lupus, even if the ANA test comes back negative. The general consensus is that ANA-negative lupus is very rare and that it is more a term given to patients with “lupus-like” disease. Some doctors might call it “mixed connective tissue disease,” “undifferentiated connective tissue disease,” or “forme fruste lupus” or “hidden lupus”. Each has specific and separate meaning and describes different forms of illness. But, while rare, it is possible to have ANA-Negative Lupus.
I hope that I've answered your questions. Please let me know if you need anything further.

Peace and Blessings

02-19-2009, 03:28 PM
I just want to welcome you to the site. My name is Kathy and I have SLE Lupus. There are a lot of good folks that come in here. I hope that you keep posting and you can ask any question you may have and someone will be able to answer it.


02-20-2009, 05:55 AM
Thanks for all your help. going to get new blood work so i can start taken meds. memory getting worse and my speaking i forget what i am sayin or forget the words to what i am describing really wierd. thanks again

02-20-2009, 06:02 AM
hi gina,

word recall is one of the most frustrating parts of SLE for me. I have to give speeches in my work, and sometimes I just stand there and can not think of the word that i was going to say. I have had to be honest with the employees that i speak to, explain to them what i have, and let them help me with words. We have actually made a game out of it to see who can find my word. This has probably helped them pay attention to me more...cause they all want to catch me in my "part-timers"
(like alzimers/all-timers) moment.

02-20-2009, 06:07 AM
so the ana test alone isn't always accurate what about the other ones they did which was a blood pattern which was speckled and my tieter? was also high thats an at the time my ana was postive. they sent blood to lab in ca that deals with auto immune dis. and cost me 900. to find out but it was worth it. i didn't have the gerd it was the other way all liquid and really oil if it tried to make solid. put me on meds for pancrease at that time but thank god those symptoms went away. thanks again

02-20-2009, 06:10 AM
good morning gina,

i am not the expert on different blood tests, but I do know that my ana was homogeneous and my dr. said that was definitely lupus. my dr. also sent blood work to california lab and now every other dr. looks as where it was sent and says "your blood work was sent to a reliable lab". So, i am glad dr. sent your blood there,but i am sorry that you had to pay for it.

02-20-2009, 06:12 AM
you all have been very helpful. still having problems figureing out the site. but all of you make me feel better about this. my husband and i after 20 years are now divorced and he getting married next year. he didn't understand what was going on with me and i pushed him away. would tell me to get out of bed take care of childred etc. thought it was in head even after going to hospitals and drs. never once did he go with me or understand this. now he just tells me i am old get over it. there are so many people who don't get this. i have a boss who is understanding and her best friend has it too so she more understanding than most. but its work in construction company that isn't doing well, so i can't get more money been at same pay for three years and the ecomoy (sp) really bad today.

02-20-2009, 06:31 AM

you would be amazed at the number of us who have lost loved ones, jobs, houses, friends, etc. because of this illness. It is so difficult, but we have to accept the loss and let those who choose to leave have ownership of their decision. And when you have a mate who won't even go to drs with you, then this is really their problem and not yours.

02-23-2009, 06:14 AM
you know what your right. i just started dateing this guy, and this weekend pain so bad in back he cleaned my bathrooms top to bottom, vacum house did laundry and cooked for me and my son. so it is nice now to have someone who understands and is willing to help, but i still think it should of been my husband we were together for 21 years. but my fate has broght me here in my life and i am happy for now. i feel blessed that i woke up this morning and let the rest roll off.

02-23-2009, 06:16 AM
Just wanted to say good morning to everyone and have a blessed day.

Angel Oliver
02-23-2009, 06:35 AM
Oh good morning Gina,

Wow what a guy....so helpful.I am so glad he is in your life to support you.I hope the pain is not so bad for you today and i am sending you gentle hugs.


02-23-2009, 07:11 AM
hi gina and good morning back to you.

sounds to me like you have a great friend who may not fully understand what you are going through, but at least he accepts it, and does not have unrealistic expectations of you. isn't it nice to have a clean house, especially when you feel badly and know that you can't clean it? you deserve this kindness