Specific Complications of HHT: Nosebleeds

Nosebleeds are the most common symptom of HHT, and they usually start in the teen years. 90-95% of individuals with HHT will develop nose bleeds by adulthood, but severity varies from infrequent and minor to daily and severe.

It is important to emphasize that there is currently no cure for nosebleeds in HHT. However, the treatments listed below may significantly decrease the severity and duration of the bleeds, and may occasionally stop them for some period of time.

The HHT International website has an excellent scientific update on nosebleeds. To access this newsletter you will need to enroll as a member of HHT International, and then go to the Members section of the website and look up the Spring 2004 newsletter.

General Information & Prevention

• Avoid injury to the nose such as blowing your nose strongly or picking.
• Avoid dry air and consider a humidifier for your house or bedroom.
• Use AYR gel (no prescription needed) in the nasal passages 3 to 4 times daily to prevent nosebleeds. Other options include lipid based ointments and antibiotic ointments.
• Moisten hard crusts in the nose with saline sprays or drops.
• If you have high blood pressure, this should be kept under control.
• For immediate control of bleeding, sit up, and apply pressure with your fingers. Putting cotton up your nose may also help.
• If bleeding does not stop, or is severe, go to an emergency room.
• Avoid blood thinners or nonsteroidal antiinflammatory medicines like aspirin and ibuprofen as they can worsen bleeding tendencies. Tylenol®, Bextra®, Celebrex®, and Vioxx® are generally okay.

Treatment and Prevention (listed in order of general preference) 

Nasal ointments: These help by keeping the lining of the nose moist. There are many different ointments out there, but the thicker ones will probably prevent drying out longer. They should be used 3-4 times daily and placed into the front part of the nostril gently to avoid triggering a bleed. You can use your fingertip or a cuetip. Saline sprays or drops can be used but usually do not last very long.

Laser treatment: Usually very effective for preventing bleeds, but not as good for stopping an ongoing bleed. This procedure usually stops or markedly decreases nosebleeds for several months or years, and can be repeated if necessary. Disadvantages include nasal perforation and triggering a bleed. Benefits are usually temporary but longer than with cautery. There are many different types of lasers including KTP, YAG, and pulsed-dye. They have never been compared head to head in a research study, but all seem to be effective.

Argon plasma coagulation: This technique is a like a cross between laser and cautery. Usually very effective for preventing bleeds, and stopping mild ongoing bleeds. This procedure usually stops or markedly decreases nosebleeds for several months or years, and can be repeated if necessary. Disadvantages include nasal perforation and triggering a bleed. It has never been compared head to head with laser in a research study, but both seem to be effective.

Iron therapy: Iron can be taken either orally or intravenously to help build up your blood count to help treat symptoms of fatigue. Oral iron can be obtained without a prescription. Intravenous iron can be given as an outpatient every 2 to 4 weeks, and is usually arranged through a hematologist.

Blood transfusion: This may be required to build your blood count back up if it falls to a seriously low levels due to bleeding. This can usually be done as an outpatient.

Septo-dermoplasty: This is an invasive surgical procedure which is done under general anesthesia. The lining of your nose and its telangiectasias is stripped away and a thin graft of skin from your thigh is sewn in place. Because skin is thicker, it is less likely to bleed. After the surgery, your nose will be packed with gauze or pads, which come out in 7-10 days. This procedure usually stops or markedly decreases nosebleeds for 1 or more years, and can be repeated if necessary. Disadvantages include general anesthesia, the need to take a skin graft, and recovery time. If your “new nose” is not cared for on a daily basis, unpleasant odor and crust may develop inside. 

Other Treatments:

• Nasal packing: Cotton pads or an inflatable balloon is inserted into the nose to stop bleeding. Very effective for stopping bleeding but bleeding may start again when the pack is removed. They should be avoided if possible.
• Cautery: Chemical or electrical cautery is fairly effective at stopping bleeds, but the depth of cauterization is difficult to control. Disadvantages include nasal perforation and triggering a bleed. Benefits are usually short lived.
• Embolization of nasal arteries: This involves an angiogram to identify the bleeding artery, followed by injecting a substance in the artery to block it off. It can be effective at stopping ongoing nosebleeds, even when severe. Effects are short lived as the telangiectasias grow back in 1-2 months. Disadvantages include the risk of stroke and other complications.
• Topical hormones: Hormone creams or ointments like estrogen can be applied inside the nostril. Some HHT doctors believe that this treatment works for some patients, but this has never been proven in a research study. Side effects are minimal.
• Oral hormones: Hormone pills like estrogen and danazol may shrink telangiectasias and decrease the frequency and severity of bleeding. Some HHT doctors believe that these treatment work for some patients, but this has never been proven in a research study. Side effects include an increase risk of blood clots in both sexes and breast enlargement in males.
• Aminocaproic acid (Amicar®): This pill works by helping blood to clot. There are reports of success, but it has never been proven in a research study. Side effects include an increase risk of blood clots.