In February, Hospital for Special Surgery, Molly’s Fund Fighting for Lupus, and Alliance for Lupus Research hosted a Facebook chat on Lupus and General Health. Participants asked many questions, but our room full of experts could only answer as much as they could during the one-hour live event. We categorized the remaining questions, and will run a series on our experts answers over the next month. For our first installment, rheumatologist Dr. Kyriakos Kirou, answers questions on treatment and neurology.
The information provided is for informational and educational purposes, and doesn’t constitute medical or health advice for any individual problem. Please consult with your health care providers for any health problem and/or prior to starting any new medication or changing or discontinuing any medication you have been prescribed. This chat is not intended to create a doctor-patient relationship, or any other duty, between you and any member of the HSS interdisciplinary team, Molly’s Fund Fighting Lupus, or Alliance for Lupus Research.
Q1. What is the best treatment for severe Lymphedema?
Lymphedema is best treated by vascular surgeons and it includes compression stockings, lymphedema reduction devices, etc.
Q2. Are swollen lymph nodes with high lymphocytes and low neutrophils normal with lupus? I have lupus and they keep testing for cancer.
Swollen lymph nodes are not unusual in lupus, especially when the disease flares. However, when the swelling is localized and gets worse, most doctors would like to get a lymph node biopsy to rule out lymphoma. Low neutrophils also occur commonly in lupus. They may also be due to medications used for lupus such as cyclophosphamide, azathioprine, mycophenolate, or methotrexate. Rarely can they be due to blood cancer. High lymphocytes are less typical of lupus. The most common finding is low lymphocyte numbers.
Q3. I always seem to have unusual symptoms and diseases. For example, spinal deterioration needing major surgery, trouble with my pancreas, many skin cancers, etc. I have lupus for 40 years, fibromyalgia, Raynaud’s, Sjogren’s, and neuropathy. Is it usual for lupus patients to have so many unusual problems? Right now I’m attached to a wound vac for hernia surgery that wound up needing stomach restructuring!
Lupus and its treatment may cause problems from different body organs over time. For example, steroids (prednisone) can cause slow wound healing. Fibromyalgia, Sjogren’s syndrome, and Raynaud phenomenon are commonly associated with lupus and neuropathy may also occur. Spine disease is less likely to be related directly to lupus, but it could be related to osteoporosis form steroid use.
Q4. Through a recent CT scan, plaque buildup was found on my aorta & joint replacements (hip/knees). I have also been told that I have peripheral artery disease. Is this from SLE?
Patients with SLE often develop early atherosclerosis (earlier than other people without lupus), which is plaque buildup in the aorta and other blood vessels. Also, steroids such as prednisone can make this worse. Patients with SLE will often need tight control of their cholesterol and inflammation to delay this plaque from forming in blood vessels.
Q5. I have fibromyalgia, CFS (Chronic Fatigue Syndrome), Sjogren’s, and my ANA test came back positive for lupus. However, my rheumatologist does not think I have it. I have all the signs, symptoms, and I’ll get the rash on my face. He has me taking Plaquenil and has even sent me to another hospital for other options and treatment. I’m to the point to see another doctor, but I?ve been seeing him since 2006. I’m confused; when I have all the signs, symptoms, and lab work are positive for lupus, but during other times of the year, the blood work comes back normal. Do I have it or not is my question. I am on other meds too, but my lupus issue is bothering me.
Sometimes patients have mild lupus or lupus that does not have all the typical symptoms of the disease. This is good because these patients are less likely to get very sick from their lupus. Plaquenil is a good medication for such patients. You can definitely seek a second opinion if you are concerned about the diagnosis or management.
Q6. What is the difference between SLE and lupus arthritis? Are these two different diseases, two diseases at the same time, or a single disease?
When it is not just in the skin, lupus is the same as SLE (systemic lupus erythematosus). Lupus can affect many body organs, including the joints. So when it does affect joint, it is called lupus arthritis. So it is basically the same thing and helps distinguish lupus arthritis from other causes of arthritis such as rheumatoid arthritis, osteoarthritis, etc.
Q7. What age is best to test young children?
There is no need to test children for lupus unless they have symptoms. Children have about 5% chance of getting lupus if one of their parents has lupus or another similar disease.
Q8. I have recently been diagnosed and the only symptoms I have are joint pain and fatigue. I have been fighting colds after colds this season. My question would be what is typically next? What do I have to look forward to?
We often prescribe to people in your situation hydroxychloroquine, or Plaquenil, which can help the fatigue, joint pain, and might protect from infections. You should also check of the levels of your serum immunoglobulins. Sometimes, patients with autoimmune diseases such as lupus have low levels of immunoglobulin and that increases risk for infections.
Q9. Can lupus cause chronic pancreatitis? What can lupus do to the GI tract? Is it harder for people who have systemic lupus to fight off MRSA? I never get the flu, colds, etc. and I thought people with lupus often get sick. I did get pneumonia on Christmas Eve.
Lupus may rarely cause pancreatitis. In addition, drugs for lupus such as azathioprine and prednisone may also cause pancreatitis. Lupus may also cause enteritis, which is a severe inflammation of the bowel. Lupus makes it easier for someone to get an infection, especially when flaring. Immunosuppressive drugs used for lupus also make it easier to get an infection. Lupus patients should get vaccinated against the flu, pneumonia, and other dead (not live) vaccines to protect themselves from infection.
Q1. Is the prognosis for CNS lupus any different from other organs that lupus impacts?
CNS lupus may be more severe as the brain/spinal cord is a delicate and important organ. So CNS lupus, when it happens, requires early and aggressive treatment to prevent damage to the brain or spinal cord.
Q2. What kind of things can we do, take, or change in our diet that might help with the brain fog? I used to not have problems with this, but in the last year, it has been really bad for me.
If lupus is active, brain fog may increase so treating disease flares helps. However, brain fog may occur without active lupus. Unfortunately, diet does not have a major impact on this. Nevertheless, patients should eat healthy, exercise, learn to cope with this (by keeping notes, etc.), and keep a positive attitude towards the problem. If the symptoms are more severe, a consultation with a neurologist should be helpful.
Dr. Kyriakos Kirou is a rheumatologist at Hospital for Special Surgery and is Clinical Co-Director at the Mary Kirkland Center for Lupus Care at Hospital for Special Surgery. He has a special interest in the research and treatment of systemic autoimmune rheumatic diseases, such as systemic lupus erythematosus.