Tired of being tired?

[Guest guest]

The following article was written for people with HIV in mind, but anyone

with anemia can benefit from it. ~Rainy Sue

http://www.thebody.org/ortho/tired.html

Living with HIV does not mean you must spend life on the sidelines. Being

too tired to participate fully in life because of HIV-related fatigue is a

problem that can be corrected. However, the first step in dealing with

fatigue is finding the cause. That's why Stadtlanders prepared this special

section on fatigue. We want to provide people with the knowledge they need

to get their energy back.

Getting to the Heart of the Problem

By Carole Reinert-Lucas

In order to eliminate the fatigue, you must first play the role of detective

to discover the exact cause.

Living with a long-term chronic infection can in itself be a cause of

fatigue. Depression, change in sleeping habits or poor nutritional habits

can also increase the likelihood of fatigue.

If you are living with HIV and suffer from fatigue, there are additional

reasons why you should consider whether your fatigue could be an indicator

of anemia. First, anemia is a side effect of some of the medications you may

be given to treat your HIV. Drugs such as AZT, Bactrim®, dapsone, and

ganciclovir have been linked to anemia. And second, several opportunistic

infections have been associated with anemia. These include mycobacterium

avium complex (MAC), histoplasmosis, and cytomegalovirus (CMV).

Anemia is a condition that results from a decrease in the amount of red

blood cells (RBCs) in the body. There can be many causes of this decrease of

RBCs. For example, red blood cells are formed in the bone marrow. The

opportunistic infections mentioned above often involve the bone marrow so

these infections can interfere with the amount of RBCs that are produced.

Bleeding, either externally or internally, is another cause of anemia. Some

cancers, such as lymphomas, can decrease RBCs and often the chemotherapy

used to treat these malignancies can interfere with the body's ability to

produce blood cells. Vitamin deficiencies, particularly folate and B-12, and

hormone imbalances can also cause anemia.

Here are the symptoms of anemia. Talk to your health-care provider if these

symptoms are a part of your daily life:

*Fatigue *Inability to concentrate *Dizziness *Shortness of breath

*Intolerance *Loss of sex drive to cold *Loss of appetite

On the following pages, you'll learn what tests are involved to determine if

you are anemic, what treatment options are available and how your diet can

be related to fatigue. The most important thing to realize, however, is that

fatigue can be treated. By discussing your symptoms with your health-care

provider, you can take the necessary steps to alleviate them. And, once your

fatigue is under control, a shower will no longer be exhausting. A trip to

the supermarket will not seem like a 10-mile marathon. And you'll have the

energy to enjoy a night out with your friends.

How Can I Cope With Fatigue?

*Describe your symptoms to your health-care professional and ask about ways

to alleviate them.

*Keep a daily diary of fatigue symptoms, including when they are most and

least tolerable.

*Plan activities to coincide with times when energy is highest. Allow time

to rest between activities.

Short naps and breaks may be more effective than long rest periods.

*Take short walks and exercise lightly.

*Join a support group of people who share similar experiences.

Treatment Options for Anemia

By Rice, RN, ACRN

Fatigue, for many people dealing with HIV, is a dominant force. It's so easy

to take being tired as just " part of the game. " But it doesn't have to be.

As the successes of the past two years have shown us, for a large number of

people, HIV is becoming a manageable illness, not an acute one.

But being tired is still common, and many of the reasons for that feeling

are being discussed here. Certainly one of the most prevalent, and

treatable, is anemia.

Studies have shown that anemia occurs in 17 percent of asymptomatic

HIV-positive people, and in 66 percent to 85 percent of those with advanced

disease. Put simply, anemia is a decrease in the amount of red blood cells,

which may result in decrease transport of oxygen throughout the body. Oxygen

is one of the primary ingredients (almost a " food source " ) necessary for the

functioning of all the body's cells, and a decrease in the body's oxygen

supply can make you very, very tired.

The complete blood count (CBC) is the lab test to follow if you or your

doctor suspects that you may have anemia. This group of tests looks at the

amount of hemoglobin (Hgb), hematocrit (Hct), red blood cells (RBCs) and

white blood cells (WBCs) that are in your blood. Hgb is the part of the red

blood cell that carries oxygen and Hct is a measure of the concentration of

red blood cells in the blood. A Hgb of less that 11 and/or a Hct of less

that 33 percent are the clinical parameters of anemia.

For a baseline assessment to determine if you have anemia, your doctor may

perform some fairly routine lab tests: CBC, iron and vitamin levels, folate,

ferritin, and B-12 levels. Your doctor may check your stool for blood if he

or she suspects an intestinal bleed.

If bleeding causes your anemia, the first step is to find out where you're

bleeding and stop it. This can be very simple or quite complex, and a good

doctor will deal with this appropriately. For those whose anemia is the

result of an infection like mycobacterium avium complex (MAC) or

tuberculosis, treating the infection is the key. Cancers, another cause of

anemia, can also be treated sensibly. Make sure your doctor refers you to an

oncologist who is experienced with the treatment of HIV-positive people.

Anemia-causing medications can often be changed, so ask your doctor if other

medications can be substituted if drugs are causing your fatigue. AZT

commonly causes anemia, but treatment alternatives and drug therapy to

manage the anemia exist. Other medications can be substituted for Bactrim®

or dapsone; both used for PCP and toxoplasmosis prophylaxis. Ganciclovir is

used to treat CMV (cytomegalovirus) infections, but anemia is a frequent

side effect. Ganciclovir-induced anemia can often be managed by medications

that stimulate the bone marrow to produce blood cells.

Vitamin deficiencies are perhaps the easiest cause of anemia to treat. These

are managed with dietary supplements. Folic acids is available as a tablet,

and B-12 can be taken either orally or sometimes an injection is required.

A specific hormonal insufficiency can also be a cause of anemia.

Erythropoietin is a hormone produced by the kidneys that stimulates red

blood cell production. A simple blood test measures this hormone. A serum

EPO (erythropoietin) level of less than 500 mU/ml may indicate a need for

injections of erythropoietin three times weekly or more. This causes the

body to increase production of RBCs, effectively treating the anemia, and

decreasing the need for blood transfusions.

Blood transfusions are the most common treatment for severe anemia, and with

good reason: they work. For a hemoglobin of less than 8.5, they are a

necessity. By receiving RBCs from a healthy person, your own levels go up.

But this often merely treats the symptoms and there are drawbacks.

Some studies have shown a transient rise in viral load following

transfusion. The body can reject an immunologically dissimilar blood

donation, causing what's called a transfusion reaction. This most commonly

causes fevers, racing heartbeat or rashes. A blood transfusion also brings

the possibility of an iron overload or fluid overload. Some additional

drawbacks of transfusions include the fact that they are expensive and the

blood supply is often limited due to excessive demand.

Procrit®, a recombinant form of erythropoietin, can also raise hemoglobin

levels without many side effects. It is given as a subcutaneous injection,

or it can be given through an IV line. But the time to take Procrit is

early, before transfusion becomes medically necessary. If your hemoglobin is

less than 11, you may be a good candidate for this therapy.

I've just reviewed some of the common ways anemia can be treated. Part of

the treatment however involves your participation. Informed patients stay

healthier and ultimately can live longer. The most crucial aspect of

successful negotiation of the HIV minefield is open and constant

communication with your doctor. Don't be shy. You are paying this

professional to help manage your life and your disease. Ask questions and

make sure you get satisfactory answers. Follow your labs, always paying

attention to the CBC. Make a list of topics to discuss before each and every

office visit. There are no trivial concerns, and it's your life. Never

forget you are the single most important member of your health-care team,

and staying healthy means staying focused and knowing what is going on with

your body. So listen to that body carefully, even when it's only whispering.

ABOUT THE AUTHOR - Rice RN, ACRN, has been active in the care of

HIV-positive people for over seven years and is currently a nurse at Pacific

Oaks Medical Group, CA. He has been involved with developing patient

education materials in collaboration with Pacific Oaks Medical group and is

a featured speaker this year at the POZ Life Expose around the country.

Facts on Fatigue:

*Physicians ranked fatigue as the second most prevalent side effect of

treatment for HIV/AIDS.

*82 percent of the patients surveyed said that fatigue negatively affects

their ability to work, 74 percent said it affected their outlook on life;

and 64 percent said it affected their willingness to continue aggressive

treatment.

*Half of the people living with HIV/AIDS said they have never discussed

fatigue with their doctors and 73 percent were not aware that any treatment

options existed. Yet more than 75 percent of physicians surveyed said they

offer appropriate medical treatment when patients express concerns about

fatigue.

*Source: A survey conducted during the XI International Conference on AIDS

in Vancouver, 1996.

HIV Drug-induced Anemia

By Philip J. Sulkin, RPH

As discussed in the previous articles, anemia can be secondary to the drugs

used in the treatment of HIV patients. This can include the antiretroviral

medications as well as some of the other medications that HIV patients may

receive to treat or prevent infections.

Anemia can be secondary to any of the nucleoside analogues (AZT, 3TC, d4T,

ddC, or ddI). However, the incidence of anemia is significantly higher with

AZT (up to 30 to 40 percent) than with any of the other agents. There is a

direct correlation between AZT dosage, stage of HIV and the severity of

anemia. The higher the dose and the more advanced the HIV, the higher the

risk of developing AZT-related anemia. In fact, in some patients, the anemia

limits their ability to continue AZT therapy.

The incidence of anemia with the non-nucleoside reverse transcriptase

inhibitor delavirdine (Rescriptor®) is reported to be about 16 percent when

used in combination with at least one nucleoside analogue. Given that many

patients receiving delavirdine also receive AZT, it is hard to know how many

of the reported cases are really caused by delavirdine. Anemia is not a

common side effect of the protease inhibitors (Crixivan®, Invirase®,

Viracept® and Norvir®) with incidence rates of less than 2 percent for these

agents. Anemia also does not appear to be a significant side effect of

Viramune®.

Other medications that HIV patients may take to treat or prevent infections

such as Bactrim®, dapsone and ganciclovir can also cause anemia.

The treatment of HIV drug-induced anemia is the same regardless of which

drug caused the anemia. Drug therapy revolves around the use of the

recombinant human erythropoietin (Procrit®). This can be administered

intravenously, or more commonly, subcutaneously, which means the patient

gives himself or herself the injection under the skin. Procrit is most

effective for patients whose level of the hormone erthropoietin is below 500

mU/ml. Patients with higher levels have a decreased response with Procrit.

Studies show that Procrit can reduce the number of transfusions and the

amount of blood patients require.

Dosage of Procrit starts at 100-150 U/kg injections three times a week for

eight weeks. Patients must be monitored and the dose may be increased to a

maximum of 300 U/kg three times a week, depending upon the patient's

response. The common goal is a hematocrit level of 36 to 40 percent. Your

health-care provider will want to check your hematocrit level continually

and adjust the Procrit dose appropriately.

Procrit has been very well tolerated in most patients. No serious allergic

reactions have been reported although some patients have reported a

transient rash while on Procrit.

Nutrition, HIV and Fatigue: Combined Role of Serveral Factors

By F. Weber, RD

The occurrence of fatigue in people with HIV is widespread, and as disease

progression occurs, the likelihood of developing fatigue increases.

Nutrition can play an important role in helping to manage your fatigue. You

can start to improve your nutritional status by following the general

guidelines for good nutrition. This includes seven to 12 servings from the

bread/cereal group, three or more protein foods, two to four fruits, three

to five vegetables and two to three dairy products each day.

Another way to manage fatigue via diet involves looking at what symptoms or

complications of HIV or medications may be effecting your nutritional

status. It is important to look at the underlying cause of these problems

and seek appropriate medical treatments when necessary. The following chart

lists dietary problems that can affect energy levels and includes some

nutritional tips to help deal with them. These are simple ways you can try

to meet your nutritional needs.

Remember, communication is key. Do not allow problems to grow until they are

out of hand. Report any problems you have to your health-care team so you

can begin to plan for some long-term solutions.

SYMPTOM MANAGEMENT

(this is a table.. to see it better go to web site -

http://www.thebody.org/ortho/tired.html)

Problem Nutritional Solutions Comments

Poor Energy Level Eat small frequent meals.

Keep easy-to-prepare or ready-made foods available.

Prepare and freeze extra foods when energy levels are higher.

Keep a stool in the kitchen so as to be able to sit while preparing foods.

Try to increase activity/exercise levels.

Utilize home-delivery meal services and other community-based programs to

help with meal preparation.

Eat every 2-3 hours, combining a complex carbohydrate with a protein food.

Schedule eating times to follow any specific food directions related to the

medication you are taking.

Cereals, crackers, soups, cheeses, lean luncheon meats, peanut butter,

frozen vegetables and frozen meals are examples. You can also use a

calorie-containing liquid nutritional supplement.

Freeze foods in single portions for easier use.

Work with your health-care provider to develop an exercise program that is

right for you.

Poor Appetite Eat small, frequent meals.

Eat nutrient-dense foods.

Avoid high-fat foods that provide nothing but calories.

Eat at or about the same time each day. Avoid large portions, which can be

overwhelming.

Sandwiches made with lean meat, and or cheese, egg salad, cereal and milk,

and liquid nutritional supplements are examples.

Salad dressings, fried foods, processed meats, etc. keep you full for long

periods of time and do not provide a good source of nutrients.

Nausea, Vomiting Eat plain complex carbohydrate foods when feeling

nauseated.

Try eating food cold or at room temperature.

Avoid high-fat and greasy foods.

Avoid lying down flat after eating.

Drink liquids between meals not with them.

Saltine crackers, toast, pretzels and rice or pasta without sauce are

examples.

Diarrhea Drink plenty of fluids.

Avoid insoluble fiber.

Include soluble fiber.

Avoid high-fat foods.

Use reduced-lactose or low-lactose dairy products.

Include fluids such as apple, grape or cranberry juice. Juices can be

diluted for easier tolerance.

Insoluble fiber: whole-wheat and whole-grain breads and cereals, corn, nuts

and seeds, and raw fruits and vegetables with skin.

Soluble fiber: oatmeal, oat bran, potatoes, bananas, apricots, grapes,

strawberries, white rice and peeled apples, pears or peaches.

Milk sugar is called lactose. If this is not digested the right way, gas,

bloating and diarrhea can result. Most stores sell reduced-lactose milk.

(end of table)

Fighting Fatigue with Anabolic Steroids

By Rice, RN, ACRN

There are many hormonal causes of fatigue in the HIV population but one of

the most prevalent is hypogonadism. Hypogonadism is defined as an impairment

in testicular or ovarian function. Hypogonadism is diagnosed in part by a

serum total testosterone level that is lower than 300mg/DL. Your physician

will often do both a free and a total testosterone level to adequately

diagnose this very correctable condition.

Testosterone is a hormone associated with energy, sex drive, appetite and

mood. As the disease progresses, many HIV-positive people find their energy

levels dragging, often feeling like their get-up-and-go got up and went.

Weight loss, depression and, occasionally, impotence can follow. This is a

common side effect in people who show no other symptoms.

There are two major ways to supplement the body's own supply of

testosterone - injections and patches. Injections are far more common and

with good reason. The effect can be quick and dramatic; the morning after

your injection, you can wake up feeling great! You can find yourself hungry

and ready to tackle anything. This doesn't happen with everyone, of course,

but it happens often enough that some swear by their shots of " juice. "

Intramuscular injections of 200-300 mg every one or two weeks are common

dosing schedules. The downside of injections is the rollercoaster effect.

The drug is metabolized quickly, and often people's testosterone levels

fluctuate during their injection cycle. Transdermal testosterone patches are

more efficient in delivering a steady dose of the hormone. The drug is

released slowly through the skin and into the bloodstream, much like a

nicotine patch. Testoderm® patches are applied to a shaved scrotum.

Androderm® patches are applied to any flat area of the body but a rash can

develop unless you rotate the site often.

There are two other anabolic drugs often used in conjunction with

testosterone: nandrolone and oxandrolone. Nandrolone, also called

Deca-durabolin®, is an injectable drug while oxandrolone, known as

Oxandrin®, is a tablet that accomplishes the same effect.

All of these drugs can also be used in women, but careful monitoring is

required in order to prevent masculine side effects.

If you do end up needing testosterone or other drugs in this class, the most

important thing you can do is exercise. These drugs enable you to build

muscle and lean tissue more efficiently, making you feel and look better.

And remember, a physician who will prescribe these drugs for simply cosmetic

reasons is doing you and our community a disservice. Be strong, but also be

smart.

Reprinted permission of LIFETIMES2 magazine, Issue 1, 1998, a publication of

Stadtlanders Pharmacy.

http://www.thebody.org/ortho/tired.html

[Guest guest]

I have the neuropathy, mostly in my feet, and I use Provigil for fatigue. The

problem is that it is fairly short-acting and habituates too quickly to be

helpful here.

sanford

Sanford M. Gross, OD, FAAO

Associate Professor

Illinois College of Optometry

3241 South Michigan Ave

Chicago, Illinois 60616

>>> Mailman <bmailman@...> 05/27/07 12:45 PM >>>

PoWeRTX@... wrote:

> Another medication used in treatment of fatigue is called /Provigil./ It

> was developed as an anti convulsive used to treat epilepsy. Scientists

> do not understand how it works in the brain but it raises energy levels

> and is non-addictive.

Interesting.... is that the right spelling?

http://www.healthsquare.com/newrx/pro1544.htm indicates it's a

stimulant, used to treat narcolepsy.

Anyway, my question would be--since gabapentin/neurontin is also an

anticonvulsant, has anyone looked at provigil to treat neuropathy?

Would be great to get someone on their feet in all ways!

B/

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