Vitamin D is a big player in Lupus. Across the country there is a prevalence of vitamin D deficiency of more than 50%. It seems that every autoimmune disease seems to have low vitamin D levels, especially in Lupus patients. The higher your vitamin D, the less inflammation and activation of the immune system. Vitamin D levels should be over 30, which is the normal level. Vitamin D is made in the skin and sun is very important in activating it, however we're very fearful of skin cancers in society and we avoid the sun like the plague which is why we may be beginning to notice an epidemic of vitamin D deficiency. Most dermatologists believe that 15 minutes of sun exposure 3 to 4 times a week is adequate for getting your vitamin D stores up without necessarily causing skin cancer, however these are soft recommendations. If you have a family history of skin cancers or melanomas you have to be careful of the sun. In these cases vitamin D supplementation is widely available in pill form. It doesn't interfere with other medicines because it's a naturally found substance within the body, so if there is any question about sun exposure, you should just take a supplement. Another consideration is that people with dark-colored skin do not absorb vitamin D as much. It is manufactured in the skin and absorbed in the gut where it goes through chemical reactions. Vitamin D1 gets converted to D2 when you get 2 hydroxyl groups. When you get 3 hydroxyl groups it becomes vitamin D3 which is the active version of it. So vitamin D3 is ready to use in oral form. We also know that vitamin D is good for the bones because it helps with calcium metabolism.
There is the possibility of vitamin D toxicity from taking it in excess, so you have to be careful. Levels over 90 can be associated with a toxicity syndrome, leading to symptoms such as headaches and cramping. Since you absorb most of your calcium from your gut and if you are absorbing too much there's some question as to whether they are associated with kidney stones and other issues.
In general it's best to keep your vitamin D levels between 30 and 50.View Thread
Lupus can be very difficult to diagnose and in some cases by the time a correct Lupus diagnosis is made, there may be permanent damage to the lungs or kidneys. Studies have shown that many Lupus patients typically see 3 - 5 doctors before a correct diagnosis is made after an average of 2 - 3 years from the onset of symptoms. In your case, your symptoms could certainly be caused by an autoimmune disease. I recommend that you see a rheumatologist to confirm whether or not you have an autoimmune disease. This will likely involve a good history, examination and some lab work. View Thread
Fertility is usually normal in Lupus patients, however, several circumstances may affect fertility such as drugs, dialysis and disease activity.
If the disease is very active, patients can have irregular periods or none at all, as this is the body's reaction to stress. Once the disease is under sufficient control, menstrual regularity is restored. A third of patients have significant kidney disease, which often evolves into end-stage renal disease, which requires dialysis over a 10 year observation period. Dialysis is related to poor or no menstrual cycles. A successful kidney transplant would therefore restore regular periods. Furthermore, some chemotherapy drugs interfere with ovulation. Premature menopause is caused by Cyclophosphamide in upto half of the women in their 20's who take it for at least a year, and upto 80% of women who take it in their late 30's. Methotrexate, Azathioprine, Cyclosporine and nitrogen mustard are not related to loss of periods in women with Lupus. A few women need to be made hormonally "prepubertal" with leuprolide (Lupron) and need to take cyclophosphamide, which is akin to having their eggs removed and stored for use at a later date.
In terms of male fertility, men who take chemotherapy have decreased sperm counts. Sterility is uncommon. It's advisable for men to store (bank) their sperm before commencing treatment.View Thread
In my experience, most people who have desk jobs carry significant amounts of tension in their neck and back muscles. Over time, this results in hardening of parts of the muscle which get knotted up and form trigger points. Subsequently, these trigger points pull on the attachments of the muscles on the bones and lead to changes in the bones- thus changing posture. This results in abnormal stretching of the muscles and ultimately results in pain. Often times the pain from trigger points in muscles is referred down to other areas. [br>I recommend that people who are developing muscle tension and trigger points start a comprehensive program of stretching of their muscles and also strengthening of the core muscles that maintain posture. Physical therapists are particularly useful in evaluating postural issues and prescribing corrective exercises. When pain sets in, muscle trigger points need to be massaged out using a technique callled myofascial release. Other options to release trigger points are heat, laser, ultrasound and trigger point injections. Once the trigger points are released, then a course of strengthening exercises can be helpful. There is emerging evidence that a technique called eccentric loading of muscles helps with chronic trigger points and muscle and tendon dysfunction.View Thread
I'm sorry that your disease is out of control and you are in pain. It is hard for me to give specific advice on a particular case without reviewing records and examining patients. Hence, I can give you some general advice.
Generally, as rheumatologists, we try to avoid using high doses of steroids for too long as there are numerous side effects of steroids such as bone loss, elevated sugars, stomach ulcers etc. We usually try a high dose of steroid for a short while and then try to find another medication that can achieve the same effect at a lower cost to the body. While doses of up to a 100 mg of prednisone per day are used sometimes in special situations, it is not really recommended to use such high doses without an overall treatment plan or a tapering schedule.
Surgery can be a daunting process and patients with lupus need to be aware of special risks in addition to the risks that anyone undergoing surgery may be exposed to. Though this list is not complete or exhaustive, it provides some general information for lupus patients and their physicians
1. Patients with lupus, especially those on immunosuppresive medications are prone to post operative infections, including surgical incision infections, sepsis etc. Usually, imuran and cellcept need to be held for at least a week before surgery and resumed a week or so after surgery depending on the overall situations. Plaquenil could be continued without needing stoppage.
2. Patients who are on chronic steroids may experience poor healing of the sugery site or have problems with osteoporosis and hence have issues with orthopedic implants. Additionally, when a patient is on chronic steroid therapy, their own adrenal glands stop producing steroid hormones (including cortisol) which are required for normal bodily functioning. Under conditions of stress, such as surgery, the doses of steroid need to be increased. Usually, we recommend a dose of hydrocortisone given 100 mg intravenously every 8 hours for a day or so.
3. Cold operating room environments make Raynaud's syndrome worse and could cause a patient to have ulcers on the tip of their fingers or toes. Similarly, dry hospital enviornments can make Sjogren's syndrome worse. I recommend warmed up iv fluids, blankets, oral and ocular mositruizers for lupus patients undergoing surgery.View Thread
Dry mouth is a common symptom that afflicts numerous older adults. Additionally, patients with connective tissue diseases such as lupus and rheumatoid arthritis often suffer from severe dryness of the eyes and mouth. Sjogren's syndrome is the prototypical autoimmune disorder that is associated with severe dryness of the eyes and the mouth. Primary Sjogren's syndrome is a progressive systemic autoimmune disease in which there is early and gradually worsening of salivary and lacrimal (tear producing) glandular function. This condition afflicts women more than men in a ratio of approximately 8:1, and it seems to affect women in the perimenopausal age group. Saliva is produced by the salivary glands. It is an important digestive fluid that initiates digestion of food even before food reaches the stomach. The major salivary glands are the parotid glands and the submandibular glands. However, numerous additional salivary glands are present in the tongue and the soft tissues of the oral cavities. When saliva production is decreased, it leads to several uncomfortable symptoms including, thickened saliva, bad breath, cavities and oral infections, as well as poor digestion due to the absence of adequate saliva. When someone experiences symptoms of dry mouth, the first step is to investigate and establish the cause for the dry mouth. The most common cause of dry mouth are medications such as antidepressants, antihistamines, anti-seizure medications are associated with dryness of the mouth. Exposure to radiation therapy for head and neck cancer treatment, diabetes, HIV or hepatitis C infection are all associated with dryness of the mouth. Autoimmune diseases such as Sjogren's syndrome, lupus, scleroderma and rheumatoid arthritis are also associated with significant dryness of the mouth. Usually a dry mouth doesn't result in oral pain. Usually, when there is pain associated with a dry mouth, thrush or candidiasis need to be ruled out. This is a fungal infection by the organism called candida albicans (the same fungus that causes diaper rash). Risk factors for the development of a painful mouth include antibiotic treatment of treatment with glucocorticoids. Treatment of oral candidiasis usually requires prolonged treatment with oral anti-fungal medications. A related but distinct condition is "burning mouth" syndrome. The causes for this condition include nutritional deficiencies such as B-complex vitamins, diabetes, hormonal changes seen with menopause, some medications, though usually it is difficult to find an exact cause and it is attributed to a localized nerve damage (neuropathy). I recommend the following measures for management of dry mouth: 1. 1. Identify offending medications and try to change them. In general, more medication = more chance of dry mouth. 2. 2. Drink plenty of water throughout the day and keep water at the bedside at nighttime. 3. 3. Suck on sugar free gum or hard candy- the sucking motion stimulates saliva 4. 4. A drop of lemon juice just prior to a meal on the tongue can stimulate saliva flow. 5. 5. Avoid mouth rinses that contain peroxide or alcohol as these can cause worsening of symptoms 6. 6. Avoid foods that are salty and dry and use foods that are moist, soft and not very hot. 7. 7. Avoid alcohol, sugary beverages and acidic beverages. 8. 8. It is extremely important to prevent tooth decay. This requires compulsive attention to oral hygiene including brushing after every meal, flossing every night, using toothpaste with fluoride and visiting your dentist every 6 months. 9. 9. Use a humidifier at night to improve humidity at home. 10. Use omega-3 supplements to decrease inflammation that may be associated with autoimmune diseases.View Thread