On May 14, Hospital for Special Surgery and the S.L.E. Lupus Foundation hosted a Facebook chat on Lupus and General Health. Participants asked more than 160 questions, but our room full of experts could only answer 61 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, rheumatologist Dr. Lisa Sammaritano answered questions on lupus and pregnancy and lupus and exercise. Social worker Su Jin Kim answered questions on emotional needs when suffering from lupus. Read the others in this series here and here.
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.
Emotional Needs
Are there any resources for people with SLE who do not have insurance and cannot afford medication? Some way to get medications?
Yes – to find medical care, you may want to check to see which hospitals in your area have a financial assistance program or a sliding scale for people who are uninsured. To find out about medication assistance if you are not insured, the Prescription Assistance Program may be helpful to find out about programs in your area.
I have been diagnosed with systemic lupus for three years now, and this is the second time I have been so bad that I need a walker and/or a wheelchair to walk. I have four beautiful boys, and I can’t do as much with them as I would like. My question is: how do you learn to deal with the fact you can’t do things without help? I get so frustrated and feel like I should be able to do more around the house.
Coping with the physical changes that come with a lupus diagnosis can be difficult emotionally and it takes time. It’s important to know that many people with lupus have similar challenges. It’s important to ask for help from loved ones whenever possible. Also, if you need more help at home, please talk with your physician to find out whether you may need a referral for homecare services.
I’ve been diagnosed with SLE since I was 13 years old. Now I’m 24 and a medical student on imuran, plaquinel and prednisolone. I was in remission for the last five years. Now I have cautanomyositis, too. Although my blood tests are normal, I feel tired, am not concentrating and am so behind my classmates. I’m very depressed. Is this because of SLE or the medications? What should I do?
SLE and medications can both impact your mood, emotions and concentration. Managing a chronic illness, dealing with the side effects of medications and working on your career all at the same time can be challenging. It would be important to talk with your physician about these changes to see if it may be due to medications. In addition, if you continue to feel very depressed, it may be helpful to get a referral for a mental health provider who specializes in lupus so that you can talk about your feelings and what help and resources you might need.
I have alpha one antitrypsin, lupus, Sjogren’s, fibromyalgia. My doctor told my daughter at my last trip to hospital to say goodbye to me. I’m dying and he doesn’t know how to save me. I have taken plaquenil, vitamin d3, and predisone for my conditions. I was never offered anything else, and whenever I asked was told I’m not a candidate.
Rheumatologist Dr. Michael Lockshin says, “The only thing that links alpha-1-antitrypsin, lupus, Sjogren’s, and fibromyalgia that might be a threat to life would be lung disease.” Contact our Physician Referral Service for information on seeing an HSS physician, or contact your local lupus program for a referral in your area.
Pregnancy
On week six of pregnancy I was diagnosed with a lupus inhibitor, and I’m now on clexane through my pregnancy. How likely is it that I could have full blown lupus (as they won’t test me until my baby is born)? Lupus runs in my mother’s side of family. I gather the inhibitor will always be there because they have said if I have more children I need clexane straight away. I can’t make sense of lupus inhibitor at all.
Women with the lupus anticoagulant do not always have lupus. They may just have the antibody, which is a type of antiphospholipid antibody. When the antibody is present and the woman has miscarriages or blood clots, then it is called antiphospholipid syndrome. Treatment with some form of heparin (like the clexane) and low-dose aspirin is usually given to women with the lupus anticoagulant antibody during pregnancy when there is a history of pregnancy loss or blood clots in the past. You would need the clexane for every pregnancy since the antibody usually remains in your blood for life.
Why does lupus show in pregnancy then go away?
Lupus may first show up during pregnancy. Some studies suggest that pregnancy changes in the immune system, maybe related to higher estrogen levels, may cause lupus to first appear or to flare, but experts disagree about how likely this is. During pregnancy, as during other periods, the course of lupus can be unpredictable.
What happens if I have a flare during pregnancy and am forced to take meds that may harm the baby? Are there any studies on benlysta use with pregnant women?
It is very unusual for patients to have to consider harmful medications during pregnancy: there are a number of medicines that your doctor can use if you flare during pregnancy that are considered to be safe for the baby, including prednisone, azathioprine, hydroxychloroquine and intravenous immunoglobulin (IVIG). There are no studies on benlysta in pregnant women and so it should be stopped several months before becoming pregnant.
I was wondering about pregnancy and lupus. I was 12 when I was diagnosed with lupus, and I am currently on immunosuppressive therapy. I know that I have to wait until I am free of a flare up as well as off of most of my meds. I was curious about the chances of my children getting lupus? What could happen if I was to have a flare up during pregnancy?
Most patients with lupus are able to have successful pregnancies, but you are right about the importance of timing and disease activity. It is best for disease to be quiet and for patients to be on medications that are safe during pregnancy. In general, children of women with lupus are unlikely to develop lupus themselves, although their risk may be slightly higher than for those in the general population. If you flare during pregnancy, your doctor will treat you with medications that are considered safe, including prednisone and azathioprine. Risk of those medicationss is low and more than outweighed by the risk of a serious flare to you and the baby.
I have systemic lupus, and I was diagnosed about three years ago. I have kidney failure and have been on dialysis for two years. Could I still be able to have children on dialysis?
Pregnancy is generally not recommended for patients on dialysis. It may be difficult for patients on dialysis to become pregnant since kidney failure often results in lowered fertility. A pregnant dialysis patient is considered high risk and must be followed carefully and may require increased dialysis since pregnancy requires more blood to be filtered; if the pregnancy is successful, the baby has a high chance of being premature. It is better to pursue a kidney transplant and plan on pregnancy after that, when it is safer and more likely to be successful. Your kidney doctor will be able to discuss this with you in more detail.
I have lupus and take anticoagulants, recently I had surgery. I have an implant mitrial mechanical valve. Can I get pregnant?
Pregnancy in patients with mechanical valves can be safely undertaken if planned ahead of time with the cardiologist and hematologist. Warfarin is harmful to the fetus when taken during the first trimester, so it must be replaced with some form of heparin (often one of the “low molecular weight” heparins). A hematologist can follow levels to be sure the dosage is correct. But even with adequate heparin levels, the risk of a blood clot forming on the mechanical valve is higher with heparin than with warfarin, so many cardiologists recommend changing back to warfarin for the second and third trimesters. They will then change back to heparin near the delivery date to avoid bleeding during delivery.
I’m recently diagnosed with lupus. What are the chances that my 13-year-old will have it?
The chances of your 13-year-old child developing lupus are small. Although there is clearly a genetic predisposition to lupus, we think it is the interplay between genetics and environmental influences that results in clinical symptoms of disease. Estimates suggest the risk of lupus in a child of a parent with lupus is 5% or less.
Exercise
Is swimming a good exercise for lupus patients?
Swimming is a great exercise for patients with lupus and other disorders that can affect the muscles and joints. It strengthens muscles and gives a good aerobic workout, all without stressing the joints or giving the stress of a lot of impact on the joints.
Any exercises that someone can utilize during a flare up to reduce stress/pain?
When a patient is flaring, it is probably best to rest muscles, joints and the rest of the body until symptoms start improving, especially if joint pain and swelling are a part of the flare. As the flare improves, it makes sense to start with stretching and other gentle exercise, working back to more vigorous exercise.
Lisa Sammaritano, M.D., 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.
