In lupus, as in other autoimmune diseases and even in fibromyalgia, we often come across something called autonomic dysfunction. In this condition, the temperature regulating center of the the brain (located in the hypothalamus) does not function well, leading to drastic changes in temperature sensations. Other possibilities include circulatory issues, resulting in lack of oxygen- however, this is usually a painful condition and is seen more in the extremities and is called Raynaud's syndrome. Another condition that might cause similar findings is small fiber neuropathy, which may be associated with temperature changes. This will need to be investigated. I recommend keeping the area affected active through gentle stretching exercises to get the blood flowing through the tissues. Occasionally, we use medications such as elavil, anti-depressants such as zoloft etc. to manage these symptoms. View Thread
I did some research on this. Very rarely; in a lupus related condition, called Sjogren's syndrome, due to its effect on the kidney tubules, we see problems with potassium and acidosis. In active lupus kidney disease, we see problems with electrolytes as well. However, the type of electrolyte abnormalities that you are describing are not common in lupus. I'm sorry you have had such a hard time getting answers, but I don't have a great one for you. The kind of problems that you are describing seem to be kidney related, but other than careful monitoring and replacement under the care of a nephrologist, I don't have other suggestions. Wishing you the best. View Thread
Immunization with vaccines that use live viruses will result in a lupus flare. However, polio, measles, and tetanus vaccines, which all use live viruses, have been given to hundreds of thousands of lupus patients with no adverse reactions.
Having said that, Lupus patients may have adverse reactions to certain shots. These people will experience a lupus flare following this treatment. Some lupus patients may also experience difficulties after receiving tetanus vaccines. About 20% of patients with lupus may feel sick or achy for a few days following a vaccination. Often times the tetanus shot is combined with a pertusis vaccine and diptheria vaccine and together they are called DT or DPT. Pertusis vaccine in particular results in adverse effects as you have described. View Thread
Thank you for your post. Shrinking lung syndrome really refers to a restriction of the lung from being able to fully expand and get filled with oxygen. This is seen in lupus and other autoimmune diseases. As you said, we need to rule out every other cause of shortness of breath first. Essentially, in shrinking lung syndrome, there is scarring of the pleura (the outer covering of the lungs) and this is thought to be due to previous inflammation of the pleura, which is seen frequently in lupus. In addition to controlling any inflammation, pulmonary rehabilitation may be helpful in maximizing lung capacity and training the body to use accessory muscles (those that are not used for normal breathing) for improving respiration. Most cases of shrinking lung thankfully are not progressive. View Thread
In general 0.3 - 3.0. As far as I know, there is no separate normal level for patients with lupus. Rarely, have I come across a patient with "normal" TSH levels but abnormal thyroid function. However, it seems like there is a large and active community on the internet that propagates the notion that TSH by itself is not accurate in diagnosing thyroid dysfunction. This is not the mainstream view by any means.
A brief explanation of the thyroid hormones is given below.
The thyroid is a gland in your neck associated with your metabolism—the processes by which your body makes use of energy. Autoimmune thyroid disease can occur in people with lupus, as can other thyroid conditions. Usually, thyroid conditions cause the gland to release too much or too little hormone. Your doctor may order tests to detect the level of thyroid hormones in the blood, especially if you experience significant weight loss or gain, sweating, acute sensitivity to hot or cold, fatigue, or other symptoms. These tests can also help your doctor monitor the effectiveness of thyroid treatment. Tests for thyroid hormones are explained below in greater detail. Your doctor may request additional tests, such as tests for thyroid antibodies, to learn more about your condition.
Thyroid stimulating hormone (TSH): Thyroid stimulating hormone (TSH) is a hormone released by the pituitary gland that signals the thyroid to release its hormones (T3 and T4) when levels in the blood get low. Together, TSH, T3, and T4 are part of a negative feedback loop that keeps levels of thyroid hormones constant in the blood. Abnormal levels of TSH in the blood can suggest a problem with the pituitary gland, such as a tumor, but this is unlikely. More often, high or low TSH levels indicate problems with the thyroid gland. The thyroid may not be responding to stimulation by TSH, or it may be releasing too much T3 and T4. Underactive thyroid (hypothyroidism) is more common in lupus, but overactive thyroid (hyperthyroidism) can also occur. Both of these conditions can be dangerous if not properly treated.
T4 and T3: Thyroid hormone contains thyroxine (T4, 90%) and triidothyronine (T3, 10%). The primary role of these substances is to regulate your body's metabolism. Abnormal levels of thyroid hormone can indicate hypo- or hyperthyroidism.
The burning may represent a form of neuropathy known as small fiber neuropathy. Medications that help neuropathy include amitriptyline, cymbalta, savella, neurontin and lyrica as well as others. Non pharmacological options that might help include cognitive behavioural therapy, acupuncture, deep breathing exercises etc. View Thread
I am sorry for your experience. PTSD is fairly common in your situation. There is no direct connection between lupus and PTSD, but it has been fairly well established that stress is one of the triggers for lupus. I would suggest that you contact local lupus support groups to be in touch with others in your situation. Cognitive behavioural therapy can be effective in managing stress and potentially could help manage and/or prevent lupus flares. View Thread
Patients with lupus are prone to upper respiratory infections due to altered immune activity. Additionally, dry mouth can lead to recurrent infections and whitish plaques due to a yeast infection of the tongue. Please discuss with your physician if you are suffering from dry mouth and related complications. View Thread
Sorry to hear about your troubles. I am also concerned that you are having organ involvement. Some of your symptoms seem to suggest active lupus nephritis and the swelling under the eyes might represent a kidney condition called nephrotic syndrome. You should seek consultation with a local physician to assess how active the lupus is. Based on that they might prescribe you medication till you get back to the US. Potentially the dose of the prednisone needs to be higher to achieve results in active lupus. However, please use this as a general guideline, not having examined you, it is impossible for me to know what you're dealing with. Safe travels!View Thread