AboutCynthia Donlan Expertise I am comfortable answering questions about Systemic Lupus, diagnosis , lab results. Coping strategies.. I am not as comfortable answering questions about medications and interreactions.
Experience I am a woman who suffers with Systemic Lupus Erythematosus along with other autoimmune phenomenon. I am the Lower County Representwtive for the Lupus Foundation of PA, I am also the local support group facilitator.
Organizations Lupus Foundation OF PA
Publications I have been on several local talk shows discussing lupus. I have had a few articles published in Lupus Foundation of PA Newsletter. My story was published in the Platelet Foundation of America book on ITP a few years ago and I am always having articles in our local papers.
Education/Credentials I have a Bachelor of Science degree in Liberal Arts from College Misericordia and Masters of Science degree in Special Education from Bloomsburg University
Question Hi there. Thanks very much for your time ready my question. My identical twin sister and I both have immune deficiency. (not Aids or HIV). Specifically I have reduced amounts of immunoglobulins: IgA IgM and IgG3. Currently I have the flu, last month it was sinus and prior to that the flu twice in a row. My sister and I have both had 2 miscarriages each this year with no indication of any clotting disorders etc. My question specifically is that when we are 'well' we aren't 'well' ever! Debilitating fatigue, joint pain (particularly in hands) and morning headaches in recurring pattern is our most common complaint. We both have Hashimoto's thyroiditis (treated). I have recently been tested for all manner of other autoimmune disease because our symptoms would suggest this and also if you were to ask one of us what our gut instinct is to why we both always feel so unwell we would swear that we have an active autoimmune disease of some kind. However my CRP and ESR ALWAYS come back with very low levels and show no inflammation whatsoever even if I'm sick at the time. I also mentioned to my GP this week that no matter how bad my flu gets (I'm really suffering with this bout - possibly swine flu I think) I never get a fever. In fact I haven't had a fever over 38C since I was a teenager despite being very ill a lot. He said that wasn't surprising because the low immunity would stop the fever reaction in me. That made me think. Could an immune deficiency interefere with ESR and CRP? Any insight you might have would be appreciated. I've accepted this is my life but for once I'd like to stop guessing and start KNOWING for sure what is exactly wrong with me. I know it sounds like something hypochondriac would say but every time my tests come back normal I'm disappointed and frustrated...not because I'm not sick but because I AM sick but have no idea what with. Thanks again.
Anne
Answer DEAR ANNE:
HELLO TO MY NEW MATE: I LOVE AUSTRALIA AND YOU AUSSIES. YOU GUYS ARE THE NICEST FRIENDLIEST PEOPLE IN THE WORLD AND I WOULD LOVE TO VISIT YOUR COUNTRY ONE DAY.
Wow! Do you have an interesting letter. One that truly intrigues me.
Let me begin by asking you, are you on any steroids? What drugs are you currently taking?
YOU ARE NOT A HYPOCHONDRIAC! These are real issues.
First of all were you checked for anti-Phospholipid syndrome? Hen you say you had no indication of clotting disorders, does that mean they checked you for Anti-cardiolipin antibodies, or the lupus anticoagulant?
Secondly Hashimoto's and thyroid disorders can affect your temperature. You can have lower temps from thyroid issues. Do they monitor your TSH levels regularly?
In autoimmune diseases that are considered TH1 diseases like Scleroderma, Lyme's Disease or Sarcoidosis, there has been studies that the CRP and Sed rate are LOWER then normal. Have you been checked for them? A lot of your symptoms do mimic a form of Sarcoidosis.
Sarcoidosis is an autoimmune disease of unknown cause that leads to inflammation. It can affect various organs in the body.
Sarcoidosis can affect any organ in your body. However, it's more likely to occur in some organs than in others. The disease usually starts in the lungs, skin, and/or lymph nodes (especially the lymph nodes in your chest).
The disease also often affects the eyes and the liver. Although less common, Sarcoidosis can affect the heart and brain, leading to serious complications.
If many granulomas form in an organ, they can affect how the organ works. This can cause signs and symptoms. Signs and symptoms vary depending on which organs are affected. Many people who have Sarcoidosis have no symptoms or mild symptoms.
Lofgren's syndrome is a classic set of signs and symptoms that is typical in some people who have Sarcoidosis. Lofgren's syndrome may cause fever, enlarged lymph nodes, arthritis (usually in the ankles), and/or erythema nodosum.
Erythema nodosum is a rash of red or reddish-purple bumps on your ankles and shins. The rash may be warm and tender to the touch.
Treatment for Sarcoidosis also varies depending on which organs are affected. Your doctor may prescribe topical treatments and/or medicines to treat the disease. Not everyone who has Sarcoidosis needs treatment.
Outlook
The outcome of Sarcoidosis varies. Many people recover from the disease with few or no long-term problems.
More than half of the people who have Sarcoidosis have remission within 3 years of diagnosis. "Remission" means the disease isn't active, but it can return.
Two-thirds of people who have the disease have remission within 10 years of diagnosis. People who have Lofgren's syndrome usually have remission. Relapse (return of the disease) 1 or more years after remission occurs in less than 5 percent of patients.
In Sarcoidosis, clumps of abnormal tissue (granulomas) form in certain organs of the body. Granulomas are clusters of immune cells.
The disease can affect almost any organ of the body, but it most commonly affects the lungs.
Possible causes of Sarcoidosis include:
Excess sensitivity to environmental factors
Genetics
Extreme immune response to infection.
There may be no symptoms. When symptoms occur, they can involve almost any part or organ system in your body.
Almost all patients have lung or chest symptoms such as Dry cough , Shortness of breath Discomfort behind your breast bone ,Abnormal breath sounds , symptoms of general discomfort or uneasiness often occur:
According to the Mayo Clinic the following other symptoms may occur:
Ill feeling (malaise)
Fatigue (one of the most common symptoms in children)
Fever
Weight loss (one of the most common symptoms in children)
Joint achiness or pain (arthralgia)
Skin symptoms:
Skin rashes
Old scars become more raised
Raised, red, firm skin sores (erythema nodosum), almost always on the front part of the lower legs
Skin lesions
Hair loss
Nervous system (neurological) and vision changes:
Headache
Seizures
Weakness or paralysis (palsy) on one side of the face
Eye burning, itching, and discharge
Symptoms of uveitis
Decreased tearing
Other symptoms of this disease:
Often the disease is found in patients with no symptoms who have an abnormal chest x-ray. Different imaging tests may help diagnose Sarcoidosis:
Chest x-ray to see if the lungs are involved or lymph nodes are enlarged
CT scan, biopsies of various organs and a sleuth of sophisticated blood work.
Many people are not seriously ill, and the disease may get better without treatment.
Severely affected patients may need treatment with corticosteroids. This includes people who have involvement of the eyes, heart, nervous system, and some with lung involvement. Therapy may continue for 1 or 2 years. Some of the most severely affected patients may require life-long therapy.
Drugs that suppress the immune system such as methotrexate, azathioprine, and cyclophosphamide, are sometimes used in addition to corticosteroids. Rarely, some people with irreversible organ failure require an organ transplant.
Although these treatments may temporarily improve the symptoms of the disease, long-term treatment has not been proven to prevent Sarcoidosis from slowly getting worse.
About 30 - 50% of cases get better without treatment in 3 years. The overall death rate from Sarcoidosis is less than 5%.
Also with Lupus your compliment levels decrease and so can your white cell levels, as well as your Immunoglobulins. Your sed rate and CRP do not have to be elevated.
YOU HAVE SOMETHING WRONG WITH YOUR IMMUNE SYSTEM, I am not a doc can not tell you what it is wrong. Your sister probably also has issues to.
What you need to see is either of the 2 following specialists at a big teaching hospital.
You need to see an immunologist or an infectious disease doc to look you over and see why you keep getting recurrent infections with atypical reactions.
I am sorry I have no answers for you. ALL I can do is suggest and hope my suggestions make an impact on you positively.
Hang in there they will get to the bottom of this. Keep your faith in God he won’t let you down.
I know what you’re going through, I have been there and it isn’t pretty. Yet trust me there is a way out and up!
