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Treatment and Management of HHT

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The primary goal of HHT treatment is to minimize bleeding, maintain healthy iron levels, and prevent complications from internal AVMs. Management strategies include nasal moisturization, IV iron infusions for anemia, endovascular embolization for AVMs, and systemic medications like bevacizumab.

Key Takeaways

  • • Treatment for HHT nosebleeds follows a step-ladder approach, starting with daily moisturization and advancing to laser therapy or surgery if needed.
  • • Chronic bleeding from HHT often causes iron deficiency anemia, which is managed with oral iron, IV iron infusions, or blood transfusions.
  • • Endovascular embolization is the gold standard procedure for treating dangerous arteriovenous malformations (AVMs) in the lungs and brain.
  • • Systemic medications, such as tranexamic acid and bevacizumab (Avastin), may be prescribed to reduce bleeding and block abnormal blood vessel growth in severe cases.
  • • HHT management is most effective when guided by a multidisciplinary team at a specialized HHT Center of Excellence.

Managing HHT requires a step-by-step approach tailored to your specific symptoms. Because HHT is a lifelong condition, the goal of treatment is to minimize bleeding, maintain healthy iron levels, and prevent serious complications from internal AVMs [1][2].

Managing Nosebleeds (Epistaxis)

Treatment for nosebleeds usually follows a “step-ladder” approach, starting with the simplest methods:

  1. How to Stop an Active Bleed: Before procedural interventions, knowing how to stop an active bleed at home is critical. Gently blow your nose to clear loose clots, pinch the soft, fleshy part of your nose (not the bridge), tilt your head forward (not backward, to prevent swallowing blood), and hold firm pressure for 10-15 minutes [3]. Go to the emergency room if bleeding is heavy and will not stop after 30 minutes [3][4].
  2. Moisturization: The first line of defense is keeping the nasal lining moist using saline sprays, gels, or ointments to prevent the fragile vessels from cracking and bleeding [4][3].
  3. Procedural Interventions: If moisturizing isn’t enough, doctors may use laser therapy to seal leaking vessels [5][4]. For the most severe cases where bleeding is constant and life-altering, a surgical option called the Young’s procedure (nasal closure) can be used to surgically sew the nostrils shut, which typically stops the bleeding entirely [5].

Treating Anemia and Iron Loss

Chronic bleeding from the nose or stomach often leads to iron deficiency anemia [2][6].

  • Iron Replacement: Most patients start with oral iron pills, but many find them hard to digest or insufficient to keep up with heavy blood loss. In these cases, intravenous (IV) iron infusions are used to deliver iron directly into the bloodstream [7][8].
  • Transfusions: For sudden or severe drops in hemoglobin, a red blood cell transfusion may be necessary to quickly restore oxygen levels in the body [8][9].

Fixing Internal AVMs: Embolization

The gold standard treatment for dangerous AVMs in the lungs or brain is endovascular embolization [10][11].

  • The Procedure: An interventional radiologist threads a small tube (catheter) through your blood vessels to the site of the AVM. They then use tiny coils or plugs to block off the abnormal “short circuit” [10][12].
  • The Goal: In the lungs, this procedure is highly effective at reducing the risk of stroke and brain abscesses by restoring the lung’s natural filtering ability [11][13].

Systemic Medications for Severe Cases

When local treatments and iron aren’t enough, doctors may use systemic (whole-body) medications:

  • Antifibrinolytics (e.g., Tranexamic Acid): These medications help blood clots stay stable longer, which can reduce the frequency and duration of nosebleeds [3][14].
  • Anti-angiogenics (e.g., Bevacizumab/Avastin): This is a newer type of therapy that blocks the signals that tell abnormal blood vessels to grow [15][2]. It has been shown to significantly reduce the need for blood transfusions and iron infusions in patients with severe HHT [16][8].

Because HHT is rare and complex, management is most successful when coordinated through a specialized HHT Center of Excellence, where a team of experts can guide these decisions [1][17].

Frequently Asked Questions

How can I stop a severe HHT nosebleed at home?
To stop an active bleed, gently blow your nose to clear loose clots, pinch the soft, fleshy part of your nose, tilt your head forward, and hold firm pressure for 10-15 minutes. You should go to the emergency room if heavy bleeding does not stop after 30 minutes.
What should I do if iron pills aren't helping my HHT anemia?
If oral iron pills cause digestive issues or cannot keep up with your heavy blood loss, your doctor may recommend intravenous (IV) iron infusions. This delivers iron directly into your bloodstream to help correct anemia more effectively.
How are internal AVMs from HHT treated?
The standard treatment for dangerous AVMs in the lungs or brain is endovascular embolization. During this procedure, an interventional radiologist uses a catheter to place tiny coils or plugs that safely block off the abnormal blood vessels.
When is bevacizumab (Avastin) used for HHT?
Bevacizumab (Avastin) is a systemic medication used for severe cases of HHT when local treatments and iron supplements are not enough. It works by blocking the signals that cause abnormal blood vessels to grow, which can significantly reduce bleeding and the need for transfusions.
What is the Young's procedure for HHT nosebleeds?
The Young's procedure is a surgical option reserved for the most severe, life-altering nosebleeds that do not respond to other treatments. It involves surgically sewing the nostrils shut, which typically completely stops the nasal bleeding.

Questions for Your Doctor

  • • My nosebleeds are frequent; are we at the stage where I should consider laser therapy or a surgical procedure like the Young's procedure?
  • • If my iron levels are consistently low despite taking pills, should we switch to IV iron infusions?
  • • Is bevacizumab (Avastin) an option for me if my bleeding doesn't improve with standard care?
  • • For my lung AVMs, what are the risks and benefits of embolization versus just monitoring them?
  • • How often should I have blood work done to monitor my hemoglobin and iron levels?

Questions for You

  • • How many times a week do I have to use 'rescue' treatments like nasal packing or heavy pressure to stop a bleed?
  • • Does my current anemia treatment (like iron pills) cause side effects that make it hard for me to stay consistent?
  • • What is my main goal for treatment? (e.g., stopping the nosebleeds entirely, having more energy, or preventing a stroke).

Want personalized information?

Type your question below to get evidence-based answers tailored to your situation.

References

  1. 1

    [Hereditary hemorrhagic telangiectasia (Osler-Weber-Rendu syndrome): clinical manifestations and multidisciplinary management].

    Frigerio C, Aebischer N, Baud D, et al.

    Revue medicale suisse 2016; (12(517)):896-901.

    PMID: 27323484
  2. 2

    Hereditary hemorrhagic telangiectasia: diagnosis and management from the hematologist's perspective.

    Kritharis A, Al-Samkari H, Kuter DJ

    Haematologica 2018; (103(9)):1433-1443 doi:10.3324/haematol.2018.193003.

    PMID: 29794143
  3. 3

    Epistaxis Prevention, Treatment, and Future Perspectives for Hereditary Hemorrhagic Telangiectasia.

    Ficany A, Del Alamo M, Bernabeu C, et al.

    Journal of clinical medicine 2025; (14(21)) doi:10.3390/jcm14217724.

    PMID: 41227119
  4. 4

    [Diagnostic Criteria and Treatment of Hereditary Hemorrhagic Telangiectasia].

    Seebauer CT, Kuehnel T, Uller W, et al.

    Laryngo- rhino- otologie 2020; (99(10)):682-693 doi:10.1055/a-1220-7045.

    PMID: 32987413
  5. 5

    Nasal closure for the treatment of epistaxis secondary to hereditary hemorrhagic telangiectasia.

    Sena Esteves S, Cardoso C, Silva A, et al.

    Acta otorrinolaringologica espanola 2016; (67(6)):345-348 doi:10.1016/j.otorri.2015.12.002.

    PMID: 27079134
  6. 6

    Not Your Typical Nosebleed: A Case Report and Personal Account of a Patient With Osler-Weber-Rendu Syndrome.

    Zhitnitsky M, Gilde J

    The Permanente journal 2022; (26(2)):138-143 doi:10.7812/TPP/21.137.

    PMID: 35933679
  7. 7

    Hereditary Hemorrhagic telangiectasia: a rare familial case with delayed diagnosis despite decades of recurrent bleeding.

    Rahi AV, Kumar A, Singh J, et al.

    Oxford medical case reports 2025; (2025(9)):omaf189 doi:10.1093/omcr/omaf189.

    PMID: 41025027
  8. 8

    A Rare Case of Hereditary Hemorrhagic Telangiectasia: A Case Report.

    Khan AR, Waqar S, Wazir MH, Arif A

    Cureus 2022; (14(4)):e24517 doi:10.7759/cureus.24517.

    PMID: 35651452
  9. 9

    Hereditary Hemorrhagic Telangiectasia in a Sudanese Patient.

    Elawad OAMA, Albashir AAD, Mirghani Ahmed MM, et al.

    Case reports in medicine 2020; (2020()):6395629 doi:10.1155/2020/6395629.

    PMID: 33414829
  10. 10

    Hereditary hemorrhagic telangiectasia with bilateral pulmonary vascular malformations: A case report.

    Vojnosanitetski pregled 2016; (73(10)):956-60 doi:10.2298/VSP150515094L.

    PMID: 29328562
  11. 11

    Pulmonary arteriovenous malformation in a pediatric patient with epistaxis and hypoxemia.

    England RW, Weiss CR

    Radiology case reports 2020; (15(10)):1759-1763 doi:10.1016/j.radcr.2020.07.026.

    PMID: 32774576
  12. 12

    Pulmonary Arteriovenous Malformation in a Patient with Suspected Hereditary Hemorrhagic Telangiectasia: A Case Report.

    Zuabi N, Thompson SR, Lucas A, Wray A

    Journal of education & teaching in emergency medicine 2021; (6(1)):V9-V11 doi:10.21980/J8M353.

    PMID: 37465542
  13. 13

    Review of diagnostic uses of shunt fraction quantification with technetium-99m macroaggregated albumin perfusion scan as illustrated by a case of Osler-Weber-Rendu syndrome.

    Chokkappan K, Kannivelu A, Srinivasan S, Babut SB

    Annals of thoracic medicine 2016; (11(2)):155-60 doi:10.4103/1817-1737.180020.

    PMID: 27168866
  14. 14

    Bevacizumab for Refractory Gastrointestinal Bleeding in Rendu-Osler-Weber Disease.

    Bernardes C, Santos S, Loureiro R, et al.

    GE Portuguese journal of gastroenterology 2018; (25(2)):91-95 doi:10.1159/000481289.

    PMID: 29662934
  15. 15

    Hereditary hemorrhagic telangiectasia (OslerWeberRendu syndrome) - Part II. Pharmacological therapy and international guidelines for the therapy 2020.

    Adam Z, Brančiková D, Romanová G, et al.

    Vnitrni lekarstvi 2021; (67(7)):419-424.

    PMID: 35459360
  16. 16

    Bevacizumab and gastrointestinal bleeding in hereditary hemorrhagic telangiectasia.

    Ou G, Galorport C, Enns R

    World journal of gastrointestinal surgery 2016; (8(12)):792-795 doi:10.4240/wjgs.v8.i12.792.

    PMID: 28070235
  17. 17

    Hereditary hemorrhagic telangiectasia (Osler-Weber-Rendu syndrome) Part I. Pathophysiology, clinical symptoms and recommend screening for vascular malformations.

    Adam Z, Brančiková D, Romanová G, et al.

    Vnitrni lekarstvi 2021; (67(6)):339-344.

    PMID: 35459376

This page provides educational information on HHT treatments and management strategies. It does not replace professional medical advice; always consult your healthcare provider or an HHT Center of Excellence for personalized care.

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