Previous Topics Continued


Lupus and Hair Loss

What Causes It:

Everyone loses some hair without noticing, but in alopecia (hair loss), people notice hair on their pillow after sleeping, more hair in the sink after washing or brushing hair.  Patchy areas of scalp may be noticed or thinner, more breakable hair. Some patients may have excessive hair loss along with symptoms that occurred at the beginning of their disease. It could be a lupus flare.  There is a theory is that inflammatory cells attack the hair follicles under the scalp.  Stress with lupus can stop the normal hair growth.

Usually, the hair falls out over a few months.  Fortunately, it does not last and the hair grows back.
Some medications may cause hair loss such as Plaquenil.  This is fairly rare and the hair will grow again once medication is stopped.  Chemotherapy treatments can cause hair loss. The majority of those with hair problems actually find their hair is thinner and not completely lost.  Unfortunately severe hair loss can dramatically affect the lives of those who go through it. Not only does it cause cosmetic concerns, but it can also create a problem of low self-esteem.

What To Do:

First and foremost it is important that you consult your doctor about any hair loss problems.  Since there are no specific methods to cure hair loss for a lupus patient, your doctor may alter your  medication, or maybe just monitor the progression before making any changes.  Sometimes the latter is best because as you start coming out of a flare, the hair loss may slow down or even stop.  It is extremely uncommon to become bald because of lupus, unless it's associated with discoid lupus lesions (damage) of the scalp.

Should hair loss happen because of side effects from some lupus medications or treatments, you must decide for yourself what is more important.  Do you stop the medication and allow your hair to return to a growing state, or unfortunately put up with another side effect knowing the medication is helping to keep your lupus under control.  Remember, in most cases, hair loss is not permanent.

The following are some tips that may help:

Treat your hair gently.
Wash your hair less often.
Use gentle shampoos
Brush and comb it less frequently.
Avoid aggressively pulling or tightly fastening.
A shorter haircut is one way to make your hair look thicker.
Long hair can cause stress on the hair shaft.
During periods of severe hair loss, wigs, hats and scarves can be versatile options.


Before you read this please remember I am not a doctor, nor am I giving you any medical or therapeutic advice.  This is a summary from a variety of different sources I have researched in order to help shed some light on the subject.  This month I am addressing your family and by doing so I hope you, the lupus sufferer, will be able to see what they must go through.  Your illness not only effects you--It has an effect on everyone around you.

Lupus And The Family

Living with a lupus patient is not a picnic, to say the least.  I am sure there are many times you want to pull your hair right out of your head!  You feel completely helpless and ache for your loved one to be better.  Then there are times you think he or she is better and cannot understand why simple tasks are not performed.  What about all those times you made plans together and it is time to leave (whether it be a function, movie, dinner, or visiting) and your loved one tells you he or she cannot make it.  Maybe you have just arrived home from work and the children need attention and nothing has been done.  The house is a mess, there is no dinner, and your lupus loved one is in bed sleeping.  Okay, so you order out and who cares about the mess - but the children are important.  How can you expect them to understand when you yourself are having trouble.  Finally, your sex life has just about gone down the tubes (so to speak.)

Whatever the size of your family, living with someone who has lupus is a day to day learning experience.  You never know how he or she will feel - from the moment you wake in the morning until you close your eyes at night.  Your loved one could wake feeling "good" and within minutes or hours that "good" feeling dissipates and you are left with someone who needs to be cared for.  The crazy part of all this is there can be days, weeks, even months, when your loved one is doing just fine.  You start to forget he or she is ill.  Then out of the blue that disease of many faces shows up.  Instead of going crazy yourself try some of these tips:

Take care of yourself first.  You are no good to anyone otherwise

Ask for help when and if it is needed

Check out local support groups for "caregivers"

Listen to what is being said by your loved one, and try to maintain a positive outlook

Learn all you can about the disease and how it applies to your loved one.  Go with your loved one to the doctor's, and, ask questions

Encourage your loved one to be as independent as possible.  Do not become a crutch for him or her to lean on

Strive for a fairly normal family life (especially on the "good" days)

Take one day at a time.  Do not project what could happen

ACCEPT the fact that lupus is NOT going away

I hope this has given you some help.  It is not difficult to go the extra mile for someone you love.  They are on the largest roller-coaster of their life right now -  trying to understand how this could have happened.  Unfortunately there are no answers.  When our wonderful researchers are able to someday discover "what causes lupus" then we will have not only a better understanding of "how it happened" but will have a much better chance of finding a cure!


Summer Fun & Lupus

Okay so it's nearing the days of lemonade and ice tea.  Days we yearn for the cool breezes of the ocean or laziness by a lake.  Time for working in our gardens, taking a nice summer walk, even the everyday chores that bring us outside.  These are all danger signs to lupus patients unless (and the key word here is "unless") we prepare our bodies before leaving the house.

Did you know that a 1929 article in Vogue magazine stated, "A golden tan is the index of chic"?  Looks as though the fashion world is coming full circle on this issue, and the myth of a "healthy tan" has been destroyed. Research into the effects of the sun on the skin has shown that the sun's rays not only burn us, but also cause premature aging, skin cancer, alters the immune system, and contributes to the development of cataracts. For the lupus patient, the risk is increased in that UV light can cause a skin rash or a flare of other disease symptoms.


Facts:

Most of the sun's harmful ultraviolet rays can penetrate light cloud cover, haze, or fog.
Taking care in the sun can actually reverse some of the damage done and will also delay the appearance of further sun induced skin damage.
Certain drugs can increase your sensitivity to the sun, possibly resulting in serious burns, rashes or swelling. Examples include: certain antibiotics (Tetracycline and Sulfa), diuretics, antidepressants and others.
Sand reflects more of the sun's rays onto you.
Most UV rays can penetrate water to a depth of several feet.
A cooling breeze can mask the effects of the sun on your skin during watersport activities
Pale skin is back in!


Protect and Cover Up

Just because you're not at the beach or pool doesn't mean you don't need to take precautions.  Minimize your exposure to the sun between the hours of 10 am and 4 pm.  Keep your hat on and wear sunglasses. Use an SPF 15  broad spectrum sunscreen (protects against both UVB & part of the UVA range).

Cover-up Tips-
Apply your sunscreen at least 15-30 minutes before you go out to allow the active ingredients to be absorbed.
Reapply sunscreen frequently (~every 2 hours) and liberally
Don't forget the ears, nose, and neck (where skin cancers most often occur).
Use an SPF 15 lip balm (the lower lip is another common spot for skin cancer to appear).

Something New

The following was taken from "BOTTOM LINE PERSONAL" (a monthly newsletter under a column heading "Did You Know That…")

Did you know that harmful ultraviolet (UV) rays can penetrate clothing? Some clothes, including some light, cotton T-shirts, have a Sun Protection Factor (SPF) of as little as 6. The Skin Cancer Foundation recommends total sunscreen protection - including clothing, sunscreen and moisturizer - of SPF 15 or higher. Bottom line: Use sunscreen over your entire body before getting dressed. Or: Use Sun Guard, a laundry additive that adds ultraviolet protection to clothes during washing. Available in most drugstores or at www.craftswholesalers.com . Cost: $2.45/one ounce.

by Perry Robins, MD, president, The Skin Cancer Foundation, New York City.    www.skincancer.org

Please Note:  I have not checked this out personally.  I received this information from a friend and thought it most interesting and wanted to share with you.

Now you are ready to enjoy your summer.  I wish everyone to be healthy enough to get out and enjoy all the activities!


Kidney Involvement in Lupus

Lupus nephritis refers to kidney disease that can occur in SLE, and is a potentially serious symptom of lupus. Nephritis is a term referring to inflammation of the kidney tissues. Kidney disease can range from mild urine abnormalities, which may resolve on their own to more severe problems that worsen over time despite efforts to manage them. Other kidney problems for lupus patients include frequent urinary tract infections,  kidney stones,  and problems caused by certain medications.
The kidneys perform several important functions, including control of the volume and contents of body fluids, excreting waste products, and regulating hormones which control blood volume and blood pressure.  

Patients with kidney disease may have few or no visible symptoms. Because of this, routine lab testing for signs of kidney involvement is required. Lupus nephritis does not usually cause pain in the abdomen or the lower back, nor does it result in pain or burning during urination. Patients may experience loss of protein through the urine, leading to fluid retention with weight gain and swelling mainly in the legs, ankles or fingers.

Treatment Options

Treatment and management plans are individualized to the patient's specific medical condition. You and your doctor will take multiple factors into consideration when making treatment decisions. Things to consider include biopsy findings, laboratory test results, overall kidney function, general health status and other medications that you may be taking.

Corticosteroids are often used to control inflammation in the kidney tissue. High doses are usually taken by mouth or intravenously until improvement is noted. Once stable, the dose of corticosteroids is gradually reduced and the patient carefully monitored to ensure that the nephritis does not worsen.

Immunosuppressant drugs may be used to suppress the activity of the immune system. These are often considered most effective in the management of lupus kidney disease and may help prevent further damage. They have been proven to be beneficial in-patients with severe kidney disease. Examples of these drugs include Cyclophosphamide and Imuran.

In addition to drugs that control inflammation or suppress the immune system, diuretics are sometimes prescribed to help rid excess fluid. Antihypertensive drugs may also be used to control and high blood pressure.

If the above treatments are not successful, patients today have other options, which were not available in the past. Patients who progress to kidney failure may require dialysis  (hemodialysis or peritoneal dialysis). In both cases, a machine or artificial membrane is used to remove wastes from the blood that are normally removed by the kidney. Some patients require kidney transplants in the long run, but not everyone on dialysis or in end stage renal disease will require this. A kidney transplant permanently eliminates the need for long-term dialysis. Fortunately, most patients with kidney disease do not progress to kidney failure

Monitoring Kidney Disease

There are several routine tests performed when investigating for signs of kidney involvement in SLE patients. Urinalysis involves examining a urine sample's content for red blood cells, white blood cells, casts, and protein. If these are present in unusual levels, lupus nephritis may be suspected, warranting further investigation. Another test used is the 24-hour urine collection. This measures the kidney's ability to filter waste products (creatinine clearance) and the amount of protein lost in the urine over a 24-hour period.

Steady increases of protein in the urine may mean worsening kidney function.
Blood tests such as creatinine can help determine if waste products are adequately being removed by the kidneys, and whether they are building up in the blood. Low blood albumin levels may indicate loss of protein in the urine. Chemistry studies measuring sodium, potassium and bicarbonate levels can help detect imbalances of salt and water in the blood. Low blood complements (C3 and C4) and increasing levels of antibodies to DNA are strong indicators of active lupus kidney disease.

Blood pressure and weight are also closely monitored as they may indicate fluid retention, and stress on the kidneys. If evidence of lupus nephritis is present, a kidney biopsy may be performed. This involves removing a small piece of kidney tissue by inserting a needle through the skin of the lower back. A biopsy requires a short hospitalization, and is usually performed under local freezing. Biopsy results  can confirm the diagnosis and help determine the extent and type of kidney involvement and guide treatment decisions.


Disclaimer:
The above information was obtained from reading different sources and their interpretations about hair loss and lupus.  I wrote what I found to be the agreed majority on the subject.  It is a basic overview for SLE and not intended to be taken as medical fact and/or advice. Lupus has many faces and not everyone shares the same complications and/or symptoms.  Please contact your doctor if you are having any hair problems.


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