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coltsfan
10-01-2008, 10:48 AM
I went to the doctor recently to have my hormone levels tested. I thought I was going thru early menopause. My brother has had lupus for about 14 years and my mother had uterine cancer about 7 years ago. Because of family history, my ob/gyn did a fasting blood sugar, a thyroid and an ANA test. I expected a call that everything was good, except that my hormone level had changed. However, I received the news that my hormones were good, as was my blood sugar. But I had a positive ANA result. As much as I have looked around, I can't find any answers as to what the odds are that both my brother and I could both have lupus. Anyone able to help me?

Oluwa
10-01-2008, 01:29 PM
Hi Coltsfan..

My research thus far has turned up...

Is lupus hereditary?

It is suspected that people inherit something from their parents that predisposes them to develop lupus. They are not necessarily pre-destined to develop lupus, but they may be more susceptible. Relatives of lupus patients have an approximate 5-12% greater tendency to get the disease if family members have it.

and....

Heredity does seem to play a role. Ten percent of lupus patients have a first-degree relative (sister, daughter, son, mother) or a second-degree relative (aunt, uncle, first cousin) with lupus. Therefore, 90 percent of lupus patients DO NOT have relatives with lupus. Even in identical twins, when one sibling has lupus and the other twin does not, it is believed there are environmental factors that play an important role.

and this...

The precise reason for the abnormal autoimmunity that causes lupus is not known. Inherited genes, viruses, ultraviolet light, and drugs may all play some role. Genetic factors increase the tendency of developing autoimmune diseases, and autoimmune diseases such as lupus, rheumatoid arthritis, and immune thyroid disorders are more common among relatives of patients with lupus than the general population. Some scientists believe that the immune system in lupus is more easily stimulated by external factors like viruses or ultraviolet light. Sometimes, symptoms of lupus can be precipitated or aggravated by only a brief period of sun exposure.

It also is known that some women with SLE can experience worsening of their symptoms prior to their menstrual periods. This phenomenon, together with the female predominance of SLE, suggest that female hormones play an important role in the expression of SLE. This hormonal relationship is an active area of ongoing study by scientists.

More recently, research has demonstrated evidence that a key enzyme's failure to dispose of dying cells may contribute the development of SLE. The enzyme, DNase1, normally eliminates what is called "garbage DNA" and other cellular debris by chopping them into tiny fragments for easier disposal. The researchers turned off the DNase1 gene in mice. The mice appeared healthy at birth but after six to eight months, the majority of mice without DNase1 showed signs of SLE. Thus, a genetic mutation in a gene that could disrupt the body's cellular waste disposal may be involved in the initiation of SLE.

Keep well,
Oluwa

KathyW1958
10-01-2008, 03:33 PM
Hi Coltsfan,
Welcome to the site. My name is Kathy. I have SLE Lupus and I have a younger sister that also has it. Oluwa is right. I am wondering though what your other symptoms are, because just having a positive ANA does not necessarily mean that you have Lupus. You have to meet at least four out of the 11 Criteria to be diagnosed with Lupus. What other symptoms do you have? Have you seen a Rheumatologist? I think that you should make an appointment with a Rheumatologist and get fully tested for Lupus. Please post and let us know what is happening ok.

Hugs,
Kathy

coltsfan
10-02-2008, 06:29 AM
Oluwa, thanks for the information. When you first start searching, it seems as if you are going in circles.

Hi Kathy. As of yet, I have not had a positive diagnosis of Lupus. And other than achy, I don't know that I have really presented any symptoms as of yet. My doctor just said that the ANA came back positive and they were sending it off for further testing. That is basically all the information that I have so far. They are hoping for the next round of results tomorrow, so I will hopefully know more then. When I originally went to the doctor, it was because my periods had been only lasting about 24-36 hours. I am 37 years old, but have no family that has gone thru menopause, so I wasn't sure what I should be checking for. Doing a little research online, I came across a site that said if you have some of these symptoms (night sweats, sleeplessness, mood swings, irregular periods...) are under 40 and have a relative with lupus, check with your doctor. So I did. I wanted to be prepared for whatever was coming next, but had a hard time finding the information I was looking for. That's when I found you guys.

KathyW1958
10-02-2008, 06:50 AM
Hi Coltsfan,
I think that you were definitely right to check with the doctor. I know that I would have in a heart beat. You see I have a younger sister with Lupus as well. I never had the menstrual problems, but I had almost all of the criteria listed for Lupus. Please do not let the doctors tell you that just because you have a relative with Lupus that you could not have it too. I know that for years this kept happening to me and unfortunately the lupus got to the point where it nearly killed me before I got diagnosed and put on medications for it. You may have the very early signs of the illness and if you have Lupus, they can put you on medications for it. I hope that you get some answers as to what is happening. It is very rare for a young woman your age to go through Menopause, but unfortunately it does happen. Let us know how your doctors appointment goes ok.

Hugs,
Kathy

coltsfan
10-02-2008, 06:58 AM
Thanks Kathy,
I know what you mean. They took forever to diagnose my brother. He is only 32. He was diagnosed at about 18 years old. But for the longest time, they told him he had overworked his joints in the gym...then he ended up in the hospital with a severe pancreas infection.
Is the menstrual problems a symptom or just a coincidence? I didn't see that listed anywhere in the list.
I also want to say that I am so glad I found this site. You are all wonderful. I am going to tell him about it as well.

Oluwa
10-02-2008, 08:00 AM
You're welcome Coltsfan...

To summarize it...you would be apart of the 10% with a relative already diagnosed... if diagnosed with Lupus. Several of our Lupus family members here has a relative with Lupus also. I do not.

As Kathy said, a positive ANA doesn't necessarily mean Lupus. It is a tool to confirmed a diagnose along with the other criteria. Just as a negative ANA doesn't mean you do not have Lupus...

Other diagnostic tools to assist in a diagnose...
• Medical history
• Complete physical examination
• Laboratory tests:
o Complete blood count
o Erythrocyte sedimentation rate (ESR)
o Urinalysis
o Blood chemistries
o Complement levels
o Antinuclear antibody test (ANA)
o Other autoantibody tests (anti-DNA, anti-Sm, anti-RNP, anti-Ro [SSA], anti-La [SSB])
o Anticardiolipin antibody test
• Skin biopsy
• Kidney biopsy

There are several "Sticky's" in Lauri's Lounge regarding tests, symptoms and etc...check them out. May help to answer some of your questions that may arise...

With reference to menstruation and Lupus flares....for many women, lupus flare-ups occur during the second half of their menstrual cycle (the Luteal Phase...after ovulation), with symptoms disappearing when menstruation starts....because lupus most often occurs in women of childbearing age, and flare-ups often occur during menstruation, some researchers have sought to uncover the link between lupus and sex hormones, especially estrogen.

While progress has been made, the connection between lupus and estrogen remains highly controversial. It is known that people with lupus have elevated levels of estrogen metabolites and low levels of testosterone. Women with lupus have shown reduced levels of progesterone.

Enjoy the day...
Hugs,
Oluwa

coltsfan
10-02-2008, 09:23 AM
Oluwa,
Thanks for all the information. I have spent three days searching the internet for anything that I could find. Most everything was a repeat of the site I was on before.
My name is Robyn. I forgot to say it the last time.
I will have take your information apart, little by little. I don't know what several of them are. Yea, more research! Just kidding. Even if it comes back that I don't have lupus, all the information I get will go a long way in helping my brother. I told my husband, I am going to hope for great results, but I want to be prepared for any of them.
Lots of hugs back to you.
Robyn

Oluwa
10-03-2008, 06:48 AM
Hi Robyn,

You're welcome.

If you need help with the little by little take it apart, maybe I can help with any clarification. I have a tendency to write short and choppy or over elaborating..or copying pasting as it is quicker and easier on my woe is me fingers...joint pain. Life with Lupus is all about modifying to make life easy, enjoyable, less painful.

Do ask, many of us can help as we have already done the research, the break down in layman's terms and have the information stored in our files..

The cause for Lupus is unknown..many ideas, from estrogen, environmental, genes.... lack of calcium..with the many test studies that have been conducted and are in progress.

A disease that confuses frustrates us and even our doctors who learn from us, our symptoms, what works. Key is to find a regime that works for us, individually through medicine, OTC, lifestyle changes...eat, exercise, rest and play.

What my "norm" maybe for another might just be their painfullest days or their very best days. For me, my norm is a manageable medium, not a happy medium, just okay.

I think it is great you are preparing yourself...knowledge is key, working in partnership with your doctor. A person has to be their own advocate when it comes to their care, otherwise we fall through the cracks.

Off to my every two month Rheumatologist appointment...

Enjoy this day...
Hugs.
Oluwa

coltsfan
10-03-2008, 04:02 PM
OK, the doctor called today and said I had a positive reading on the anti double stranded DNA (?). What does this mean and where can I find information about it? Since he is just my ob/gyn he is going to do some research this weekend and refer me to someone at the first of next week.
Any help?

Oluwa
10-03-2008, 05:05 PM
FYI..

I had the anti-DNA ds...(ds - double strand) Mine was a 144. Maybe search online for the lab your doctor uses. This is from LabCorp...


* Negative: 0-99 units/mL
* Equivocal: 100-120 units/mL
* Positive: >120 units/mL

Use
Specific assay for confirming the diagnosis of systemic lupus erythematosus (SLE)

Limitations
Low antibody levels may be found in other connective tissue diseases.

Methodology
Multiplex bead flow cytometry

This standard dsDNA detects both low- and high-affinity antibodies, providing a very sensitive test for diagnostic purposes... however, it is less predictive for severe nephritis, which is associated with the presence of high-affinity antibodies.

Additional Information
Antibodies to DNA, either single- or double-stranded, are found primarily in systemic lupus erythematosus, and are important, but not necessary or sufficient for diagnosing that condition. Such antibodies are present in 80% to 90% of SLE cases. They are also present in smaller fractions of patients with other rheumatic disorders, and in chronic active hepatitis, infectious mononucleosis, and biliary cirrhosis.

In the past, it was considered unnecessary to test for anti-DNA in patients with a negative test for antinuclear antibodies. A group of “ANA-negative lupus” patients has been described with anti-ssDNA and anti-SS-A/Ro and anti-SS-B/La. However, HEp-2 substrate is much more sensitive than frozen section substrates, and it is uncommon for anti-SS-A/Ro to be negative with these newer substrates.

coltsfan
10-03-2008, 05:24 PM
The numbers you gave me don't match what he was saying. Of course, he said that this isn't is specialty and he doesn't know much about it. He said that a 10 was high and I had an 18. Does that make sense to you?
Does a positive test mean you have lupus or just another step in the diagnosis process?

Thanks,
Robyn

Oluwa
10-03-2008, 05:54 PM
Robyn,

The test is just one of the diagnostic tools of many and not a diagnose with just the one....the following are the other...
• Medical history (Symptoms)
• Complete physical examination
• Laboratory tests:
o Complete blood count
o Erythrocyte sedimentation rate (ESR)
o Urinalysis
o Blood chemistries
o Complement levels
o Antinuclear antibody test (ANA)
o Other autoantibody tests (anti-DNA, anti-Sm, anti-RNP, anti-Ro [SSA], anti-La [SSB])
o Anticardiolipin antibody test
• Skin biopsy
• Kidney biopsy

You lab may use different ranges, a different anti-ds dna test than my lab. What was the lab they used?

Have you come across the criteria for a Lupus diagnose, American College of Rheumatology (ACR) 4 of the 11 in your search yet? If not, there are STICKY's in the Lauri's Lounge forum..check it out...


Hugs,
Oluwa

coltsfan
10-03-2008, 06:02 PM
I will check them out. I saw them, but I haven't really gone thru the 11 yet.
I am not positive on the lab they used. I live about 1/2 hour south of Indianapolis. They used a lab locally for the ANA test but had a lab in South Bend do the anti DNA ds.
Hopefully I will know more when I talk to them at the beginning of next week.
Will they do all of the tests?
How long have you had SLE?

Oluwa
10-03-2008, 06:19 PM
Robyn...

I've had SLE for years...at least 25 years from reviewing my symptoms, misdiagnoses. Officially diagnosed 4 years ago.

I have other cruds. Sjogrens, Fibromyalgia, Restless Leg Syndrome and GERD....usually you don't just get the one..can't have one without another.

Sure, they should be able to do all the diagnostic tests...and then some. Today I had blood drawn for calcium levels and TSH, thyroid. Your insurance should cover the cost. Do you have a co-pay, co-insurance?

Also they need to..to know what to rule out, and what the possibilities maybe and know how to treat the symptoms from the results...those aren't just "Lupus" tests.

Then with a diagnose, or even not most of have blood drawn, and fill the cup every two months with a Rheumatologist to stay ahead of the disease..

Make a list of all your questions, and don't feel any of your question aren't legitimate or silly. Remember those are your tests, you hire their (docs and labs) services to help diagnose you, treat you.

Keep well..
Hugs,
Oluwa

coltsfan
10-04-2008, 05:22 AM
Yes, I have insurance with a co-pay.
Thanks for all the answers. I will make a list. Just looking for a heads up as to what to expect. My brother was diagnosed in 93. I have never heard him mention any of the other stuff. I wonder if he is getting the best treatment he can. He never has a day that he feels 'good'. I will have to make a point to talk to him this weekend about it. He was very young when they told him(17) and I don't think they (being my parents and brother) knew what to ask. They had never heard of lupus before.

You guys are great. I am extremely glad I found this site.

Have a great day,
Robyn