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.
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 are the reviews on Benlysta? Has it been getting positive feedback?
Benlysta is an intravenous treatment for lupus that was approved in 2011. This medicine is generally recommended for lupus patients with symptoms like fatigue, rashes, and arthritis and is generally not used for patients with kidney or central nervous system involvement. Many patients are having very positive responses to this drug, particularly as it seems to be fairly well tolerated without many side effects.
Q2. Is there a major link to celiac disease? A friend of mine thinks if I went gluten free, I’d be healed? I tried an all veggie diet for two weeks and nothing changed.
Like lupus, celiac disease is an autoimmune disease. Patients with one autoimmune disease are more likely to develop a second (or third) autoimmune disease so in that sense, there is some link between the two diseases. Patients can be screened for celiac disease with blood tests; if the tests are positive, the diagnosis is ultimately made with a biopsy of the small intestine done by a gastroenterologist during and endoscopy procedure. I have heard many patients say they feel better on a gluten free diet- even if they don’t have a confirmed diagnosis of celiac disease. A trial of a gluten free diet may be worth a try!
Q3. Is there anything that can be taken to give energy even after rest has been done (vitamins, diet pills, shots, etc.)?
Fatigue can be one of the most challenging aspects of lupus. There are no specific treatments to improve patients’ energy. High quality sleep, avoiding exhaustion, exercise, and treating the other symptoms of lupus are some of the best ways to improve energy. I do not recommend diet pills. If now, vitamin B12 levels should be repleted.
Q4. How safe is Prolia?
Prolia, or denosumab, is an injectable medication used to treat osteoporosis. The most common side effects include musculoskeletal pain, high cholesterol, and bladder irritation. Less common side effects include low blood calcium levels and increased risk of infections. Prolia should not be used by pregnant or nursing women.
Q5. What is meant, in your opinion, by lupus with rheumatoid arthritis overlap? Are there effective ways to lessen the side effects of MTX? I slept for 3-4 days after my injection.
There are certainly patients who have features of both lupus and rheumatoid arthritis. These patients may have antibody blood tests consistent with both diseases (like positive rheumatoid factor as well as double stranded DNA antibodies) and/or symptoms of both diseases (like butterfly rash and erosive arthritis). Methotrexate may be a good choice for these patients. Fatigue can be a side effect of methotrexate. I generally suggest that my patients take methotrexate the night before a day that will be relatively relaxing. Patients taking methotrexate should also take folic acid every day. An alternative is folinic acid once a week.
Q6. I am 44 and have RA and lupus SLE and many other illnesses. I am in a bad flare and I am sick at the moment. I am being treated with prednisone, plaquenil, and leflunomide for my RA and was told we will probably add Enbrel next visit. I have a lot of spinal issues also like building and herniated discs and neuropathy. I’m not sure if I will need some kind of back surgery. Should I wait to start the Enbrel? And what is the life expectancy with lupus SLE? Will my disease progress if I don’t take the Enbrel?
I’m so sorry to hear that you aren’t feeling well. Enbrel, or etanercept, is an injectable medication used to treat rheumatoid arthritis. It is not used to treat lupus and many lupus doctors might avoid Enbrel in a patient with a diagnosis of lupus due to literature suggesting that this class of medications may make lupus symptoms worse. Enbrel is also normally held temporarily around the time of surgery. It sounds like your case is very complicated; I would recommend coordinating your treatment plan with both your rheumatologist and your spine surgeon to decide on the timing of your treatments.
Q7. How effective is Cytoxan in treating SLE?
Cytoxan, or cyclophosphamide, is an intravenous medication used to treat the most severe symptoms of lupus. These may include certain types of lupus nephritis and central nervous system disease. These are some of the most difficult, and sometimes life threatening, symptoms of the disease. Therefore, while it is probably the strongest drug we have to treat lupus patients, it is not always completely effective in treating the disease.
Q8. I was diagnosed with SLE 5 years ago and have been using CellCept since then. Two months ago, I was in the hospital for 2 weeks as I injured a knee. The rheumatologist said I did not have the physical look of someone with SLE (no rash, butterfly, etc.). Three tests were done, and only one came out positive. She says I could only have rheumatoid arthritis. Is this possible after all these years on prednisone and CellCept?
Lupus patients have varying symptoms throughout their lives. While patients may have had a butterfly rash at one time, generally (and fortunately), they will not continue to have this rash for the rest of their lives! The blood tests in lupus patients may change over time as well. It is possible that the hospital rheumatologist happened to see you at a time when your lupus was under good control. I recommend following up with your regular rheumatologist to discuss the interaction with the hospital rheumatologist.