View Full Version : Does Lupus run in families?
11-23-2006, 05:27 AM
I have had Lupus like symptoms for years. My GP asked what arthritis(s) my family had. I told them, that both my father, and my sister - Alice (3 years younger) have RA. I could not understand where my lupus symptoms were coming from.
Last Thursday, as my life changed in four hours into a living nightmare, and not being able to deal with everything, I called my baby sister - Laurie. She was very sympathic to everything I was going through. I was telling her also of all the health issues I am dealing with. I told her that I was being checked for Lupus, and I asked her if she ever knew anyone else with Lupus. The next few words out of her mouth, were a shock, and brought Lupus home as a real possibility for me. She informed me that Alice was diagnosed with lupus, many years back. How could that be? Alice never told me.
So now I armed with this information and back I go to my GP. Maybe now I will get my diagnoses and the help I need. I hope there is medication out there that does not contain sulfa, sulfites, and sulfates which I am highly allergic to.
11-23-2006, 10:30 AM
Unfortunately, not much is known about whether or not Lupus or other autuimmune diseases run in families. There are many theories, but no definitive proof. In my case, I have Lupus, Fibromyalgia, Raynaud's and Sjogren's and not one person on either side of my family has or had RA or Lupus or any other like condition. The doctors have no idea how I ended up being blessed, as it were.
As far as medications, I too have a life threatening allergy to sulfa and all of its derivatives, which we found out the hard way when I was 9 and they gave me sulfa for a bladder infection. I am currently taking several medications, none of which conflict with my allergy.
Good luck and let us know how it goes.
11-23-2006, 12:44 PM
One theory is that there can be an inherited tendency toward autoimmune disease that runs in families, but may express itself in different autoimmune disorders, depending on various triggers such as infections, environmental exposure, etc. So one person in a family might have lupus, someone else might have RA or diabetes, another family member might have thyroid disease or MS - all different diseases, but all with the common factor of auto-immunity. In my own family, I have lupus and scleroderma - my oldest brother has discoid lupus, both his daughters have systemic lupus, although neither has organ involvement. A niece has RA, another has Hasimoto's disease - there are probably others I don't know about. So it's probably a combination of heredity and environmental factors, but the researchers are still arguing. We do know that lupus is not directly inheritable like sickle cell anemia or Huntingdon's disease, but no one knows exactly what factors are involved. Hope this helps!
11-29-2006, 10:41 AM
they seemed to feel it made it more likely that I too have lupus although they do say it is not hereditary.
11-29-2006, 01:18 PM
I am 35 and was just diagnosed in Feb. After my diagnosis I was able to make some connections. My father has Uveitis and is currently being treated with a lot of the same meds I'm on. My uncle on my fathers side has Psoriasis. I also had a bad reaction to a sulpha based antibiotic about 7 years ago (can anyone explain the connection to lupus). I have two other sisters very close in age who don't have any immune related problems. But I do see a link from my fathers side of the family.
11-29-2006, 01:51 PM
I don't think anyone knows why so many lupus patients are allergic to sulfa - probably something to do with our malfunctioning immune system. But about 30 percent of lupus patients are allergic to sulfa-based drugs. You should always let your doc and pharmacist both know that you are allergic to sulfa - most patients with sulfa allergy know to avoid Bactrim, Septra and other sulfa-based antibiotics. but other prescription meds may contain trace amounts that can trigger a reaction in someone really sensitive. Even people who aren't truly allergic can have bad lupus flares after taking sulfa drugs. Doctors think this may be because sulfa drugs can sensitize the skin, causing it to absorb more UV, which triggers the flare.
"Sulfa" drugs are drugs that contain sulfonamides - this is not the same thing as "sulpher" or the sulfite preservatives used as a preservative in many foods and drugs. So you don't have to be concerned if a product contains sulfites unless you are sensitive to them.
In addition to the sulfonamide antibiotics, the thiazide diuretics are sulfa-based and can trigger a reaction in someone with sulfa allergy. These are prescribed for a lot of lupus patients, so be sure and let your doc know if you've ever had a reaction to sulfa.
All of these drugs can trigger an allergic reaction in someone with sulfa allergy -
Carbonic anhydrase inhibitor
Hope this helps!
11-29-2006, 09:36 PM
I went to a Lupus symposium a little over a year ago and was told that there had been a gene identified that would make someone more susceptible to Lupus, Rheumatoid Arthritis, Graves Disease, and Type 1 Diabetes (juvenile onset). I don't remember the number of the gene and the specifics, but I definitely remember it because my family has all of those diseases.
I think we got the gene.......
11-30-2006, 05:19 AM
Missy, I learned about the 'gene' thing in some of my readings on lupus.
My doctor also said that the predisposition for autoimmune disorder is genetic, but it doesn't necessarily mean that someone will develop the disease. She said there generally needs to be a 'trigger' that sets the wheels in motion (drug reaction, exposure to something in the environment, etc.)
After I was diagnosed, I could put some pieces of the puzzle together. My aunt had what I understand was scleroderma and probably other autoimmune disorders, although no one talked about it (or anything else in my family for that matter!) She died of her illness, but she didn't take care of herself. Now that I think about it, there were other family members (including my Mom) who had symptoms that are probably autoimmune related. Not exactly 'hereditary' though because I know others who have autoimmune disorders that seem to have no family connections at all.
11-30-2006, 10:22 AM
As alot have said before me, it is not really known. I have also heard that they think it is hereditary but no one in all of my family has lupus or related illnesses. I also am alergic to sufa drugs. One of the reasons I love this site: I had no idea that alot of people with lupus also have this alergy.Thanks for the info.
11-30-2006, 12:55 PM
Part of the problem is that lupus is polygenic (meaning more than one gene is involved), and other non-genetic factors are involved too. Geneticists know this because of identical twins - who have the same genetic makeup. But even in identical twins, if one twin develops lupus, there is only a 55 percent chance that the other twin will get it too. If lupus were strictly genetic, the other twin would always have lupus too. This is much different from an inherited disease like Huntingdon's, where the disease is caused by a single defective gene, which can be determined through genetic testing. If a parent has Huntingdon's, each child has a 50/50 chance of inheriting the faulty gene, and everyone who has the gene will inevitably develop Huntingdons. But in lupus, even if your parent has it, there is about a 10% chance that a daughter may have it and about a 2% chance that a son will have it. And 90 percent of lupus patients have no relatives with lupus, although they might have relatives with other autoimmune disorders. Researchers haven't even figured out yet why people in certain ethnic groups have a higher incidence of lupus, or why the disease seems to strike people from different countries or ethnic backgrounds at different ages. So a lot more research will be needed.
12-01-2006, 07:51 AM
Oh - yeah - I didn't mean to make it sound like I think it's all genetic at all. I totally think you have to have a predisposition and then some sort of trigger in life. And that's what they said at that symposium, too. I guess I didn't state that very well.
I just think my family is predisposed. I have two full biological siblings and my brother has Type 1 diabetes since age 6, my sister had Lupus (1st diagnosed as RA), and I have Lupus. Our 1/2 sister is only 11, so I hold out hope that statistically she will not have to deal with it. Also, my aunt has Graves disease and an uncle has RA (on opposite sides of the family, no less). And then there is the non-auto-immune stuff..........but all the grandparents have lived long lives!
My best friend always says "who knew your families were such a combination?"
I always tell my doctors that we are good people with bad genes, and I still think that's better than being bad people with good genes!!!!
12-01-2006, 08:38 AM
Yes, we've got a lot of the "bad genes" in our family too - also maybe some "bad people", if family stories are true a distant ancestor was hanged as a horse thief in wild west days! Hope that doesn't run in families (LOL).
12-08-2006, 07:13 AM
My doctor said its not at all hereditary :)
That's a relief for I don't my lupus to be passed on to my children someday
12-12-2006, 02:09 PM
My Great-GrandMother died in her 30's from what we think was lupus/sjogrens. My GrandMother died at 56 from sjogrens/lupus. My Mother has tested positive but has not really had any problems. I am 42 and have been diagnosed since I was 24. I was not really sick at all until 5 years ago and I am just getting worse.Lupus, sjogrens,fibromayalgia,connective tissue, SVT of the heart, RA,etc... My children have not tested positive yet but I hear that there are many false/positive results. Not that I want to pass this along to my kids. My boys are 21 and 18 they are very weak and skinny for their ages. My daughter so far is very healthy. I worry everyday that I might have passed the gene to them.
Some say it runs in the family, some say no...I know several people that have it and it just happens that others in the family have it. I have it, and nobody in my current family has it, but my grand aunt -my Mom's first cousin...has it, and I believe my grand mother had it, but never diagnosed and i think the same thing might be with my mother.
My Mom's PCP/GP won't test her because she's over 70 but has had a sting of bad health...so I'll be looking to see if she can change doctors in her HMO and also file a grievance. Not thrilled that I have to go this route. When I was diagnosed, my sister told her GP/PCP and they tested her immediately without question and the same for my 8 year old daughter no questions asked, they just did it.
I know the testing is not cheap but sometimes it's really nice to just know the answers without fighting to be tested.
01-07-2007, 09:09 AM
My maternal grandmother died very young (in her early 40's.) She had rosy cheeks and early onset arthritis...and she died of renal failure. Back then, they had no way of diagnosing or treating. I strongly suspect she had Lupus.I have had my daughter and my neices all ask to take the ANA blood test, just to be on the safe side...so far, all negative. thank GOD!
For so long i wanted to push for testing, but my Mom's doctor has consistantly made us feel like it's not needed and that it is impossible for her to have it after 70. I have asked in another forum and several people have said for me to keep pushing. These are other lupus people, a rn and my own rheumatologist said it's not an unreasonable request.
the past year my sister and I have felt so bellittled by my Mom's doctor that we're just tired of her and want to change doctors and get her tested..but I think the HMO should cover the testing...even if they don't, we still would pay out of pocket.
We're just waiting for grievence papers to fill out and also change doctors. we just want a second opinion.
thanks and I know there's no cure, I just think that with the proper medications, the symptoms for me have kind of faded away. sure I still get them, but it's not nearly as bad as it was in the past.
01-07-2007, 12:26 PM
It't rare for people to develop lupus at an older age, but certainly not impossible. But a lot of medicines that older people might take - certain medicines for blood pressure and heart conditions - can actually cause a drug-induced form of lupus. So you might look at any medicines your mom is taking and see if any of them have been linked to drug-induced lupus.
Unless a person is having symptoms, there is no practical way to routinely test for lupus in a patient's other family members. A lot of people who have a blood relative with lupus will have a weakly positive ANA test, but the majority of people who have a positive ANA don't have lupus, and a positive ANA doesn't mean a increased risk of developing lupus. So if the test is positive, but there are no symptoms or problems that suggest lupus, it might lead to unneccessary testing or even treatment for a medical problem that doesn't actually exist. That's part of the reason why most lupus experts don't recommend routine ANA testing for other family members - the test isn't specific enough in the absence of other symptoms to be worthwhile.