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Mouth Sores
When is Fever Worrisome?
Excessive Sweating at Night
Surgery, Dental Work, and Other Medical Complications
Pain Associated with Aplastic Anemia
Exercise and Sports
Immunizations and Flu Shots
Fatigue Despite Improved Blood Counts
Stress Impacting Disease
Weight Loss
Dealing With Depression
Antidepressant Medicines
Pets in the Home
Hot Tubs, Spas, Swimming Pools
Traveling to Higher Altitudes
Living at Higher Elevation with Bone Marrow Disease
Air Travel and Platelet Count
Vitamins B6 and B12
Cholesterol Medicines
Blood Pressure Medicines
Memory Loss
Mouth Sores
What are the numerous ulcer-like canker sores inside of a patient's cheeks and on the tongue and lips?
There are four causes of mouth sores in patients with aplastic anemia.
1) Bacterial infections in patients with low neutrophil counts. This can be helped by good mouth and dental care. Antibacterial rinses can be effective but they can be painful and often difficult to tolerate. Lidocaine jelly can be applied to small painful areas for temporary relief. Antibiotics can sometimes be helpful if there is severe gingivitis.
2) Yeast infection is seen as a white coating on the sides or back of the mouth. This infection may occur when a patient is taking glucocorticoids (following ATG). Nystatin rinse or clotrimazole troche can be prescribed.
3) Herpes viruses that normally cause cold sores can cause more severe sores after immunosuppressive treatments have been given (cyclosporine or ATG). There are several effective antiviral therapies.
4) In patients with some of the very rare inherited forms of aplastic anemia, such as Fanconi's anemia or dyskeratosis congenita, oral sores may be markers for pre-malignant or malignant conditions (mouth cancers).
Patients who are experiencing mouth sores should promptly bring these to the attention of their hematologist in order to determine the origin of these "sores" and proper treatment.
When is Fever Worrisome?
At what point does a fever become an emergency?
For aplastic anemia, myelodysplastic syndromes and PNH patients, there is no absolute number at which an elevated temperature becomes critical. The most important issues are:
- what is your absolute neutrophil count?
- what is your absolute lymphocyte count?
- do you have a central line or some other "foreign body" in you?
- are you having symptoms (chills, low blood pressure, sweating, rapid breathing)?
- do you have a source for infection on your physical examination?
Persistent fever should be considered to be an indication of infection until proven otherwise. Indwelling cathers can often be a source of asymptomatic infection. A diligent search for infection should be undertaken. Occasionally fevers can be associated with disease progression to acute leukemia. Fever can also follow transfusions.
Excessive Sweating at Night
Is there any connection between excessive sweating at night and these disease - aplastic anemia, MDS or PNH?
Heavy sweating could indicate significant anemia or infection. Fever can occur and represents a medical emergency in patients with aplastic anemia, myelodysplastic syndromes, or PNH who have low absolute neutrophil count (ANC). If the patient has been on immunosuppressive therapy like steroids, cyclosporine, ATG, etc., one must also consider tuberculosis and fungal infections. Sweating could also be present in PNH if there is active hemolysis.
Surgery, Dental Work, and Other Medical Complications
What special clinical considerations should aplastic anemia, myelodysplastic syndromes, or PNH patients be aware of when they have need for surgery or dental work?
There are risk/benefit considerations for any invasive procedure. The potential benefit and urgency of the procedure should clearly be explained to patients. The risks will differ from patient to patient depending on co-existing medical problems and the severity of neutropenia (low white blood cell count) and thrombocytopenia (low platelet count). The risks and benefits for each individual should be clearly understood. In addition, it may be possible to defer invasive procedures in aplastic anemia patients until after immunosuppressive therapy has had a chance to work and the risks can be lessened. Prophylactic antibiotics, and platelet and blood transfusions should be considered prior to invasive procedures in patients with MDS or aplastic anemia.
When it comes to paroxysmal nocturnal hemoglobinuria (PNH), an important additional risk is thrombosis. Thrombosis, the formation or presence of a blood clot, is a potential post-operative complication anyway, especially after abdominal surgery. PNH is a thrombophilic condition, and therefore in any PNH patient undergoing abdominal surgery the risk of thrombosis must be regarded as high, and appropriate preventive measures must be taken.
Pain Associated with Aplastic Anemia
Is there a relationship between bone or joint pain and aplastic anemia?
Chronic pain is not part of aplastic anemia. A patient may have PNH and thrombotic complications as well as aplastic anemia. Or there may be impending leukemic conversion. Many people have joint pains unrelated to their aplastic anemia. The presence of joint pains doesn't necessarily indicate leukemia or PNH.
Patients who are taking G-CSF may have what seems to be joint pain, but may be bone pain, perhaps from a "stimulated" marrow. Joint pain occurs commonly after ATG therapy. Bone pain is common during G-CSF treatment; it resolves when the G-CSF is discontinued.
Patients should avoid aspirin or aspirin-like pain relievers called non-steroidal anti-inflammatory drugs (NSAIDs) because they inhibit platelet function. Other analgesics such as acetaminophen (Tylenol) and opiates (codeine, morphine, etc.) are allowed.
Exercise and Sports
Can aplastic anemia patients exercise and participate in sports after they have been treated successfully?
A patient with low red blood cells counts should avoid excessive exercise that causes severe shortness of breath or fast heart rate. A patient with low platelets should avoid activities that can result in rough contact or that can cause injuries. However, some form of regular exercise is important to a patient's physical health. Discuss daily exercise plan and sports participation with your doctor and modify this as your counts dictate.
Immunizations and Flu Shots
Should a patient get immunization shots? If a patient is "cured" or "in remission" should flu shots be given? Can other family members who are in contact with the patient get these shots?
There is uncertainty among experts as to whether or not aplastic anemia and myelodysplastic syndromes patients should get a flu shot. Some doctors advise patients not to get flu shots as this may worsen blood counts, perhaps by stimulating the immune system. However, other doctors feel the risk of the flu's illness outweighs potential harm from the flu shot. There is minimal real data on this subject. The decision to get a flu shot should be discussed with the patient's hematologist to determine individual risks and benefits. In general, live vaccines should not be administered to individuals who are immunosuppressed.
The following discussion, originally published in the Fall 1999 newsletter, outlines some of the concerns about immunizations and flu shots.
Generally, patients with active disease should not get immunization shots nor flu shots since this may cause worsening of blood counts. Patients should not be exposed to another family member who has received shots for 2-3 weeks if this is practical.
There is little risk of deterioration of blood counts from using killed vaccines. Tetanus falls into this category. However, one should remember that protection from tetanus lasts at least ten years and longer in most individuals. Therefore, unless a patient has suffered a severe injury, there is not an urgent need for most people to receive an other tetanus immunization.
A pneumococcal vaccine is a killed vaccine and can be given to patients who are high risk for infection with these organisms.
The risk of acquiring polio (even mild infection) from a vaccinated sibling is extremely low and the period of potential isolation from the vaccinated sibling is potentially long. Possibly the best choice is to vaccinate the sibling. A second choice would be to have the patient or the sibling live elsewhere for a month. The least desirable option would be not to vaccinate either patient.
updated 09.06
Fatigue Despite Improved Blood Counts
Is fatigue typical for aplastic anemia patients successfully treated with immunosuppressive therapy with low-normal blood counts?
Most patients have improved energy and strength as their hemoglobin improves and they have no bleeding or infections. With blood counts in the low-normal range, most patients are able to return to a normal lifestyle. High doses of immunosuppression (especially steroids) may contribute to fatigue. If a patient has prolonged fatigue, psychological factors should also be considered.
Stress Impacting Disease
Does stress impact these diseases?
Not directly, although patients often do worse in times of emotional stress. Emotional stress can affect immune system. Research has shown that emotional well-being affects the physical well-being.
Weight Loss
Do myelodysplastic syndromes patients often experience weight loss or loss of appetite?
These problems can occur in patients with chronic anemia or recurrent infections. In addition, depression associated with any chronic illness can also cause these problems.
Dealing With Depression
Is depression a typical symptom for patients?
It is natural for patients to undergo different emotions at different times of their illness, depression being one of them. It is also common for caretakers to experience the same emotions, so they should be considered in this question as well. It is a documented fact that a patient's emotional well being can effect their physical health. Therefore it is in a patient's best interest to care for their emotional health while doctors care for their physical health. For those who have prolonged feelings of depression, the situation should be discussed with their doctor. Depending on a person's personality, joining a support group can be extremely effective. Check with your hospital or local newspaper and try several to see which group feels right. For those who are not joiners, there are many helpful books and tapes on the subject of chronic illness and depression. Check with your librarian or local bookstore. For still others, one-to-one counseling with a professional therapist or counselor that specializes in chronic illness is most effective. Again, ask your doctor or hospital for referrals and try several to find one that feels right.
Antidepressant Medicines
Are antidepressants ill-advised for someone with aplastic anemia, MDS or PNH?
Most antidepressant medications are probably safe. However, the physician and patient need to decide if the depression really requires these agents or is a situational depression related to the diagnosis that could be resolved with supportive counseling rather than medication. The best advice for any person with these diseases (or anyone else) is to avoid unnecessary medications. Patients should talk with their hematologist before beginning any new treatment.
Pets in the Home
Are there any concerns about bone marrow patients being exposed to pets in the home? Should immunosuppressed patients limit exposures to pets?
There is no good data that such exposure leads to an increased risk of infection. However, as with anything else in life, moderation is recommended. The patient should discuss their concerns with their doctor. For more information please click the following link: www.medlineplus.gov
Hot Tubs, Spas, Swimming Pools
Are there any risks to patients wanting to use hot tubs, spas, or properly treated swimming pools?
Patients using such facilities are probably at increased risk for acquiring water-borne infections. However, the risk is fairly low. Patients who have any open wounds should avoid such exposures. Patients should check with their doctors about any concerns they have.
Traveling to Higher Altitudes
Are there any problems MDS or aplastic anemia patients might experience when traveling to much higher altitudes, for instance 8000 feet above sea level? Are there precautions that MDS or aplastic anemia patients could take?
The problem with traveling to high altitude is that the pressure of oxygen falls, so that a patient with anemia due to any cause might do better with a higher hematocrit. Patients who are anemic may experience significant shortness of breath at high altitudes. The doctor will probably advise that the patient be transfused to a hematocrit of about 30 prior to travel on a plane or to high altitude. Consultation with your hematologist is recommended.
The effects of altitude can be minimized by spending a day or two first at an intermediate altitude (i.e. spending some time in Denver prior to going further up) In any event it would be best not to exert oneself or to ascend any of the mountain peaks that are probably higher than the 8,000 foot base until one has acclimated to the altitude for a few days. All of these considerations take on an added level of concern in elderly patients or those with known cardiovascular disease.
There is probably a slightly increased risk of bleeding for patients who have a VERY low platelet count. This risk MIGHT be decreased by a platelet transfusion. However, the duration of the rise of platelets following such transfusion is short (1-7 days). Therefore, for a long stay at high altitudes the platelet count would have to be checked frequently and transfusions would have to be repeated.
Living at Higher Elevation with Bone Marrow Disease
Will living at a higher elevation influence or accelerate the disease (AA, MDS, or PNH)? Would being at sea level alleviate some of the symptoms of the disease?
There is no evidence that living at a higher altitude will affect the course of aplastic anemia. However, altitude may make tolerance of low hemoglobin more of a problem.
Air Travel and Platelet Count
Are low platelets a problem when traveling on commercial airlines? How low is considered unsafe?
Most commercial airplane cabins are pressurized to 5000 feet. These would be like living in Denver. Platelet counts of 20,000 or higher should protect against most bleeding in this setting. There may be individual factors that would require a higher count (for example, recent surgery, a history of frequent nosebleeds, etc.) Discuss your travel concerns with your doctor.
Vitamins B6 and B12
Are vitamins B6 and B12 recommended for newly diagnosed patients?
Therapeutic doses of these vitamins are not necessary unless there is evidence that the patient has a vitamin deficiency. In general, a balanced, healthy diet is recommended.
Vitamin B6 is usually given to sideroblastic patients at the time of diagnosis, but only a small percentage will respond. Vitamin B12 is only useful if the patient is deficient.
Cholesterol Medicines
My doctor is recommending that I take Lipitor to control cholesterol. Are cholesterol medicines ill-advised for patients with bone marrow failure — aplastic anemia, MDS or PNH?
Lipitor is not on the list of medicines that may suppress bone marrow. Each patient should discuss the risk-benefit ratio when deciding to treat a concurrent disease. In the case of elevated cholesterol, the doctor will want to take into consideration cholesterol levels and current status of bone marrow failure in the patient. Other approaches to lowering cholesterol may be worth investigating.
Blood Pressure Medicines
My doctor is recommending that I take medicine to control high blood pressure. Are these medicines ill-advised for patients with bone marrow failure - aplastic anemia, MDS or PNH?
Patients sometimes experience high blood pressure (hypertension) as a side effect of high dose steroids given at the time of ATG therapy or as a side effect of cyclosporine. Treatment depends on the severity of high blood pressure and the need for continued use of the drug. In the case of the latter, if the diastolic is greater than 90 or the systolic greater than 150, the doctor will review the trough cyclosporine levels to see if it could be decreased. Hypertension due to cyclosporine can be treated with calcium channel blockers, such as diltiazem (Cardizem CD, Cardizem SR, Dilacor XR, Tiazac). These drugs have the effect of increasing the cycloporine levels, therefore cyclosporine levels should be monitored closely.
Some patients may develop high blood pressure independent of medications they are taking. In those cases, the doctor must balance the degree of hypertension vs. the small risk of additional medicine causing worse marrow failure. In general, patients who have bone marrow diseases should use medications only when really necessary.
Memory Loss
Do patients with severe aplastic anemia or MDS experience memory loss or other cognitive dysfunction?
These symptoms are not a result of aplastic anemia or MDS. However, they may occur in patients who have severe anemia, bleeding into the nervous system or as a side effect of chemotherapy. Please discuss your concerns with your hematologist.
There are many causes of memory loss in the general population. For general information on this topic, review the information provided through MedlinePlus: Memory Loss and the resources listed through MedlinePlus: Memory.
There are many emotional aspects of coping with chronic disease that may be impacting a patient. Please feel free to discuss these issues with a member of the AA&MDSIF staff at 410.867.0242 or 800.747.2820 or via email at help@aamds.org.
