On November 6, Hospital for Special Surgery and the S.L.E. Lupus Foundation 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 of our experts’ answers over the next month. For our third installment, rheumatologists Dr. Lisa Sammaritano and Dr. Jane Salmon answered questions on pregnancy. Read the others in this series: medication and joint pain.
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 or the S.L.E. Lupus Foundation.
Q1. What are the precautions for having lupus SLE and anticoagulant for carrying full term?
Dr. Lisa Sammaritano: Both lupus itself and the presence of the lupus anticoagulant are important in predicting pregnancy outcome. As far as lupus itself, important risk factors for pregnancy loss or problems include having very active disease at conception, having significant (especially active) kidney involvement, presence of certain antibodies and specific medications. Outcome is best if disease is quiet 6 months prior to conception and if renal disease is inactive and mild. Anti-Ro and La antibodies can increase the risk of having a child with neonatal lupus. Although the risk is quite low, the fetus will be monitored with ultrasounds to rule out the development of heart block (occurs in 2% of antibody-positive parents).
Medications must be safe for pregnancy so your doctor will review these with you before you conceive.
Finally, the presence of antiphospholipid antibodies, which include the lupus anticoagulant, can increase risk of miscarriage, although overall risk of losing a pregnancy is still low. Antibody positive parents will be monitored with more frequent testing and, if there is a history of blood clots or previous miscarriage, may be treated with blood thinners including aspirin and heparin. Overall, the outlook is best if you plan with your doctors based on the factors above.
Q2. I was diagnosed with SLE and Nephritis in December 1990. This year, I have gone through 4 kidney infections, and in June, a DVT. I am now on Coumadin followed by the group at Weill Cornell. Will I be on this for a long period? What if I decide I want to plan on pregnancy? Will this prevent that at this time?
Dr. Lisa Sammaritano: The answers to your questions depend on medical information that your doctors have. If your DVT was related to the presence of antiphospholipid antibodies (found in about one-third of lupus patients), then you will need life-long blood-thinning medication. If your antiphospholipid antibody tests are negative, then the Coumadin will be for a finite period of time, anywere from 3-12 months most likely. Because Coumadin is not safe to take during pregnancy, if you must remain on it long-term, your doctors would switch you to heparin, a self-injected blood thinner, for the duration of the pregnancy as a substitute.
It is important to plan for pregnancy: outcome is best when lupus, especially nephritis, has been quiet for at least six months, and when disease is stable on pregnancy-safe medications.
Q3. I have been diagnosed with lupus for 4 years. Recently, my new rheumatologist told me she thinks I actually have MCTD with skin involvement. I spoke to her about using Benlysta and she feels that it is not a good medication for me and said that she only has one MCTD patient on it. I’m already on Plaquenil, CellCept, and Medrol in relation to lupus/MCTD treatment. What are other options aside from some type of chemo? I have lung involvement and possibly nervous system involvement. I have lupus, Raynaud’s, Interstitial Lung Disease, GERD, Myositis, Vasculitis, Sjogren’s, and Fibromyalgia. My rheumatologist brought up chemo, but I’m only 21 and I don’t want to take the risk of doing chemo if there are other options because I want to have kids.
Dr. Lisa Sammaritano: The overlap symptoms and internal organ involvement (especially the lungs, vasculitis and nervous system involvement) certainly make your lupus challenging, especially if you are already on CellCept and other medications.
Options for better disease control include increasing the dose of the CellCept if you can tolerate it and are not on the maximum dose of 3000mg daily already and the addition of Benlysta, although I can understand your doctor’s hesitation since this seems to work best for patients with straight-forward lupus, with positive DNA antibodies and low complement levels.
Azathioprine is usually a second choice after CellCept so may not be helpful, but rarely a patient will do better on this than on CellCept. Finally, the consideration for cyclophosphamide sounds reasonable if you are not responding appropriately to the CellCept and have serious ongoing internal organ or nervous system inflammation. I understand your concerns regarding fertility, but if you are pretreated with Lupron, a hormone medicine that shuts down the ovaries to protect them, preliminary studies suggest that the risk of premature menopause (infertility) with cyclophosphamide is lowered with this pretreatment.
Q4. I have already lost my spleen to this disease, but during pregnancy, I was diagnosed with ITP and then it came back when I was not pregnant 5 years later. That was 15 years ago and lupus was not discussed too much. My doctor believed I had it, but insurance would not pay with that diagnosis. I also have a rash and suffer from hair loss, help can nutrition help at all?
Dr. Lisa Sammaritano: There is certainly a big overlap between ITP and lupus, and a number of patients are initially diagnosed with ITP and later found to have lupus. The presence of rash and hair loss suggests you should be evaluated again for lupus. Hopefully insurance will cover the necessary rheumatology evaluation and blood tests now since you have these additional suggestive symptoms.
Nutrition is always important. A well-balanced diet is crucial for any chronic illness, but will not substitute for appropriate medical treatment. I would follow-up with a rheumatologist and get reevaluated at this point to see if any medications would be of help if a diagnosis of lupus is established.
Q5. Is the bio marker identified as causing pregnancy complications in lupus patients something that is standardly checked?
Dr. Jane Salmon: The presence of a Lupus Anticoagulant (a type of antiphospholipid antibody) is associated with increased risk of pregnancy complications. The biomarker tests recently reported by researchers at HSS are not yet clinically available. More studies are in progress, and we expect to have useful ways to predict outcomes and guide therapy soon.
Dr. Lisa Sammaritano is a rheumatologist at Hospital for Special Surgery and has developed a clinical practice geared towards patients with Systemic Lupus Erythematosus (SLE) and Antiphospholipid Antibodies, and combines this with clinical and basic research in these areas.
Dr. Jane Salmon is Co-Director of the Mary Kirkland Center for Lupus Research, Director of the SLE APS Center of Excellence, Director of the FOCIS Center of Excellence, and Director of the Lupus Registry and Repository. Dr. Salmon’s research has focused on elucidating mechanisms of tissue injury in lupus and other autoimmune diseases. Her basic and clinical studies have expanded our understanding of pregnancy loss and organ damage in SLE and the determinants of disease outcome in lupus patients with nephritis, pregnancy, and cardiovascular disease.