Under observation for SLE - Questions
I'm a newbie here. I'm a 32 year old, always been healthy woman. I tested positive for ANA, anti ds-DNA and centromere in Jan 2011 ( following the discovery of a bald spot on my crown) but show no other significant symptoms. I've been asked to get SLE specific bloodwork every three months. I have a few questions I can't seem to find information for online or in books.
1) Is there a mild form of SLE ? Or is the disorder bound to affect internal organs at some point ?
I ask this because when I add up the sum total of all minor health issues since my childhood, (like fainting spells, allergies, rashes, migraines etc) it seems like I might have had SLE all the while, but was never diagnosed. Nonetheless, I have always been pretty healthy and carefree.
2) What is the significance of anti ds-DNA ? What symptoms seem directly correlated to the rise of the DNA antibody count ?
3) Is there a correlation between SLE and infertility ? I haven't concieved in 2 years, nor had miscarriages. And though my husband and I are open to staying child-free I'm curious to know if there could be a connection.
Thanks on advance for all the help !
Welcome to the WHL and it's nice to have you with us and press your concerns.
Like yourself i had a bald piece appear at the side by my ear bad and it made me abit paranoid so i had my hair totally skinned to grade 1 as i've had it loads of times and i look ok thank goodness and i found a bald spot ontop of my head the size of a 50p piece but because i cut my hair short it growed back and the other piece but in grey, that's to do with SLE.
Refering wanting to get pregnant i'm now 42 and never got pregnant at all, sle & Lupus can also prevent that in some women but don't lose confidence it may happen.
I was born with it and felt affects from 5yrs old, constant coldness but as i got older things from 14yrs on started showing more and at 18 headaches, not so much rashes as i have that now more to do with eczmea they thought but it's actually psoriasis inherited from my father, i also had the fainting spells and to this day it's either through me suffering with low blood pressure or to do with the lupus as i have seizure's which it can cause.
You may feel fit and healthy and i was the same at times but in the last 5yrs i've gone down ill very quickly, your symptoms could be a starting of the effect of it.
You need to get proper blood works i have positive reading's of ANA & ENA testing and next time i go they want to do a DNA test but always remember this SLE/Lupus makes your bloods fluctuate badly so reading can come out saying things are ok, when actually they may be giving a false reading, it took 6 whole months for a positive reading for anemia for myself.
I'm adding some info below concerning SLE and what it causes to help you understand it more and what it can involve but i highly suggest you either see your GP or Rheumo whoever your seeing and push for furthur tests to know what you definitley have.
Hugs Terri xxx
Systemic lupus erythematosus (lupus) is a disease of the immune system. Normally the immune system protects the body from infection. In lupus, however, the immune system inappropriately attacks tissues in various parts of the body. This abnormal activity leads to tissue damage and illness.
Who gets lupus?
In the UK approximately three in 10,000 people are thought to have lupus. People of Afro-Caribbean, Chinese and Asian descent are more likely to develop lupus than white people. Although it can occur in both men and women, 90% of people diagnosed with the disease are women. Women of child-bearing age (14 to 45 years old) are most often affected.
What are the symptoms of lupus?
The symptoms of lupus differ from one person to another. Some people have just a few symptoms, while others have many. In addition there are many different symptoms of lupus because the disease can affect any part of the body. Some of the more common symptoms include:
Joint pain (arthralgia)
Unexplained fever (more than 38C or 100F)
Swollen joints ( arthritis)
Prolonged or extreme fatigue
Ankle swelling and fluid accumulation
Swollen lymph glands
A butterfly-shaped rash across the cheeks and nose
Depression and anxiety
Mouth and nose ulcers
Pale or painful fingers or toes from cold or stress (Raynaud's phenomenon)
What problems can people with lupus have?
Many people with active lupus feel ill in general and complain of fever, weight loss and fatigue. People with lupus also develop specific problems when the immune system attacks a particular organ or area in the body. The following areas of the body can be affected by lupus:
Skin. Skin problems are a common feature of lupus. Some people with lupus have a red rash over their cheeks and the bridge of their nose - called a ‘butterfly’ or malar rash. Hair loss and mouth ulcers are also common. One particular type of lupus that generally affects only the skin is called ‘discoid lupus’. With this type of lupus, the skin problems consist of large red circular rashes that may scar. Skin rashes are usually aggravated by sunlight. A common lupus rash called subacute cutaneous lupus erythematosus is often worse after exposure to the sun. This type of rash can affect the arms, legs and torso. An uncommon but serious form of lupus rash results in the development of large blisters and is called a ‘bullous’ lupus rash.
Joints. Arthritis is very common in people with lupus. There may be pain, with or without swelling. Stiffness and pain may be particularly evident in the morning. Arthritis may be a problem for only a few days or weeks, or may be a permanent feature of the disease. Fortunately arthritis usually is not crippling.
Kidneys. Kidney involvement in people with lupus can be life threatening and may occur in up to half of those with lupus. Kidney problems are more common when someone also has other lupus symptoms such as fatigue, arthritis, rash, fever and weight loss. Less often kidney disease may occur when there are no other symptoms of lupus.
Blood. Blood involvement can occur with or without other symptoms. People with lupus may have dangerous reductions in the number of red blood cells, white blood cells or platelets (particles that help clot the blood).
Sometimes changes in blood counts may cause fatigue (low red cell count, or anaemia), serious infections (low white cell count) or easy bruising or bleeding (low platelet count). However many patients do not have symptoms from low blood counts, so it is important for people with lupus to have periodic blood tests in order to detect any problems.
Blood clots are more common in people with lupus. Clots often occur in the legs (called deep vein thrombosis) and lungs (called pulmonary embolism) and occasionally in the brain ( stroke). Blood clots that develop in lupus patients may be associated with the production of antiphospholipid antibodies. These antibodies are abnormal proteins that may increase the tendency of the blood to clot. Blood can be tested for these antibodies.
Brain and spinal cord. Fortunately brain involvement is a rare problem in people with lupus. When present it may cause confusion, depression, seizures and, rarely, strokes. Involvement of the spinal cord (transverse myelitis) can cause numbness and weakness.
Heart and lungs. Heart and lung involvement is often caused by inflammation of the covering of the heart (pericardium) and lungs (pleura). When these structures become inflamed, patients may develop chest pain, irregular heartbeat and accumulation of fluid around the lungs (pleuritis or pleurisy) and heart (pericarditis). The heart valves and the lung itself are also affected by lupus, resulting in shortness of breath.
Hey bunny! Good to see you today.
Yes, there are mild forms of Lupus. Some people get a little tired and a few rashes and that is the end of it for them. Others have, for lack of a better term, a mild form of lupus. Still others get a very severe form and get organ damage from the disease. For some people Lupus actually goes into remission. They can go years without it really bothering them. Some people with a medium form of Lupus may go down to a very mild form of the disease once treated with the right meds.
This disease is as unique as the people who have it
Success is not final, failure is not fatal: it is the courage to continue that counts.
Hi I have both a positive ANA and a positive DS-DNA I positive DS-DNA is a pretty good sign that it is Lupus and it also means that you have a higher chance of Kidney involment which I just found out from a specialist my friend see's in seatle. Not that it will happen but it does but us at a higher risk.
Thanks everyone for your help ! I'm schedule for another round of tests next week. I'll probably (hopefully) have a better picture then.
Best of luck with your next set of tests and please let us know how you got on plus i hope you've been feeling abit better.
Hi Bunny, I am new also to Lupus and yet to be diagnosed. I have made many observations about Lupus and infertility. My knowledge of lupus began when my neighbor adopted a 9 month old baby girl from S. America back in 1970's. In the middle of the adoption she was diagnosed and somewhere in there lost her kidneys. I think she was on dialysis till her brother gave her his. It lasted a long time. Lupus did not alter the adoption. She had one child with a facial deformity but very bright. I do believe she was infertile and chose to adopt. She is in her 70's now and did eventually have hip replacements but managed the disease well and it was not a minor lupus. She has outlived her husband.
I had my daughter at 19 by accident. From then on was infertile for no reason. I knew I had chronic fatigue by age 27 but who know if that was Lupus. The doc suspected it might be and the test was negative. We chose to adopt from Ukraine 10 years ago, my son is now 13. An my daughter 30. I know of many of the mom's who adopted due to infertility who later have lupus.
I say this so you can think about life with children or life with out. My first question is if you had a child or adopted would you have the family support and husbands understanding that if you have long times of feeling ill could they support you, make you feel like you don't have to battle alone, be there for you? At this time in my life I never would have thought I regretted having kids and adopting kids, but at times I sadly regret having kids. As sick as I am I have extreme anxiety about being understood and cared for. My 30 y.o has so many problems and is no help and a huge stress. My 13 y.o. is a 13 y.o. and I have so little energy I and so sad. I have the sheriff on speed dial, not the life I pictured. My husband has been a good provider but would rather donate to a church than save the money for retirement or medical care I may need. Sad but a reality I didn't think would be. My family is no stranger to illness as my parents were both cared for at home in the last stages of life. I do think my sitiuation is my perception of it, may not be reality but sherrif on speed dial is, and antidepressants help and I am hopeful most days.
So being ok not having kids is totally totally ok. I totally undersatnd how people can be this way. My daughter never wants kids and I get it. There are other ways to have kids in your life and be part of raising helpful society members. I rely on childless people to help raise my son like his unmarried childless hockey coach.
We can't predict our futures or if a car will hit (my neighbors daughter who was adopted was hit by a car and died at 19 when she stopped at an accident to help) us or Lupus will hit us. We can try our best to enjoy each day which is what I try to do. I guess having Lupus can make you live each day with more meaning??!!
Teresa in CO
I am also a bunny on here, 35 and fairly newly diagnosed with SLE. lol, we might confuse people a little bit.
I just wanted to say that from what I have learned lupus affects everyone differently. My doctor did decribe lupus as being a spectrum. In fact, he told me I was somewhere in the middle. lupus has many forms not all of which are considered 'systemic' but SLE is by definition systemic to some degree. As I often describe them on here so far my symptoms are more troublesome than dangerous. I don't know about connections to infertility but I do know that there is a possibility of greater risk of miscarriage...sorry. I, now have the most beautiful 2.5 year old boy though and so I can tell you that having children while diagnosed with lupus is possible. My diagnosis came after his birth but as the doctors assumed I would be wanting more children, they immediately explained to me upon diagnosis in February that I would be considered a high-risk pregnancy but that they would be able to support me all the way through.
I understand your looking back at past medical issues and wondering just how long you may have had this if in fact it turns out officially to be lupus. I did the same thing. It was almost a relief in some ways as I had wondered at times if I was losing my mind or perhaps I was imagining things...There are so many things that looked at in isolation seemed like nothing. I thank goodness for the doctor who finally put 2 and 2 together for me.
Please keep in touch as this site is very helpful.
And we can figure out some what to distinguish between the two rockin' bunnys!
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