Problems During Sickle Cell Disease Treatment: When Should You Seek Immediate Medical Care?

If you do not have a personal fever plan, go to an emergency department or hospital immediately for assessment if your temperature reaches 38°C or higher. Take children to a hospital with a pediatric emergency department; if you cannot get there promptly, go to the nearest emergency department. You can contact your treatment team on the way. Do not wait for a callback or an appointment. If your personal plan calls for seeking help sooner, follow that plan.[20] The CDC recommends going to an emergency department or hospital at a temperature of 38.5°C or higher.[1] Do not wait until your next hematology appointment for chest pain, trouble breathing, sudden loss of vision, changes in awareness, or similar symptoms.[1]

In a critical emergency in mainland China, call 120; elsewhere, use the local emergency number. If you cannot find your medical records, an interpreter, or your original doctor, seek help first. Do not wait until you have all the information.

When to seek immediate help

Go to the nearest emergency department immediately. Call emergency services if the situation is critical or you cannot travel safely:

• If you do not have a personal fever plan, go to an emergency department or hospital immediately for assessment if your temperature reaches 38°C or higher. Take children to a hospital with a pediatric emergency department. You can contact your team on the way; do not wait for a callback or an appointment.[20] If your personal plan calls for seeking help sooner, follow that plan. The CDC recommends going to an emergency department or hospital at ≥38.5°C.[1]
• Chest pain, trouble breathing, sudden weakness on one side, a severe headache, a seizure, a marked change in awareness, or marked swelling of the abdomen.[2]
• Sudden blurred vision, a marked decrease in vision, or loss of sight: go immediately to an emergency department or an eye department that provides emergency care. Do not wait for a routine follow-up appointment.[3]
• Vomiting blood, black tarry stools, or bleeding that will not stop. Call emergency services, especially if there is also dizziness, weakness, or a change in awareness.[4]
• Sudden swelling of the lips, tongue, or throat, wheezing, or trouble breathing: call emergency services immediately. If you already have an epinephrine auto-injector, use it immediately according to your personal emergency plan, the product instructions, or the emergency operator’s guidance.[5]

A brief, painless erection that goes away on its own can be normal. If an erection is painful, or has not gone away after about 30 minutes even without pain, contact your hematology team immediately and note when it started. Go to an emergency department immediately if this abnormal erection lasts 1 hour without going away, you do not know when it started, or you cannot reach your team immediately. If your personal plan calls for seeking help sooner, follow that plan. Do not wait 4 hours. Tell your hematology team immediately about repeated abnormal erections, even if they are painless, brief, and go away on their own, to discuss further management.[17][18][19]

If someone taking opioid pain medicines is unusually sleepy, difficult to wake, or breathing slowly or shallowly, or stops breathing, call emergency services immediately and tell the operator that they may have taken an opioid. If naloxone is available and you know how to use it, give it according to the product instructions or the emergency operator’s guidance. Even if the person wakes up, wait for emergency responders and stay with them to monitor their condition.[6]

If pain does not improve after following your personal home treatment plan, contact your treatment team immediately. If you cannot reach them, the pain is severe, or any of the emergencies above occur, go directly to the nearest emergency department.[2] Do not delay while waiting for your original hospital to respond.

What to do if problems occur after a blood transfusion

During a transfusion, tell the nurse or doctor with you immediately if you develop chills, a rash, pain, or any other new symptoms. Call for medical staff immediately if you have trouble breathing. Do not adjust the transfusion equipment yourself.[7]

Hours, days, or even weeks after a transfusion, even if you had no reaction on the day, go to an emergency department immediately if you develop new dark red or cola-colored urine, much greater tiredness than usual, severe pain or back pain, fever, or trouble breathing. Tell the staff that you recently had a transfusion; these changes may need immediate assessment.[7][8] If jaundice becomes noticeably worse or you pass less urine, contact your treatment team immediately and seek medical care as soon as possible. If you cannot reach the team, go to an emergency department.[8]

Some medicines can change urine color. However, if you develop new dark urine after a recent transfusion, do not try to work out the cause at home. Note the transfusion date and any history of antibodies or transfusion reactions, but do not delay seeking care to find records.[7][9]

What to do if problems occur after taking medicine

Ask your prescribing team to write down in advance: when each medicine must be paused immediately, when your next tests are due, whom to contact during the day and at night, and where to go if you cannot reach them. Follow your own written emergency instructions and the instructions for your actual product. If you have no clear instructions, do not increase the dose, switch medicines, or decide to stop a medicine long term on your own. Contact your prescribing team immediately.

In particular, for people taking U.S. FERRIPROX deferiprone tablets: the prescribing information requires you to stop this medicine immediately and contact a doctor or seek immediate medical care if you develop signs of infection, such as fever, a sore throat, mouth ulcers, flu-like symptoms, or chills, and to have your neutrophil count checked within 24 hours. If you cannot reach your doctor, seek care at another medical facility without delay. Your doctor must decide whether you can restart it after the symptoms resolve.[9] These are the instructions for this U.S. product; they do not mean that the instructions for all formulations in other countries have been verified. People using other deferiprone products should also seek medical care immediately for these symptoms and show the doctor their actual medicine packaging and personal plan for stopping the medicine.

An exception for children taking deferasirox: the prescribing information for U.S. EXJADE tablets for oral suspension and U.S. Zydus deferasirox film-coated tablets states that patients aged 2–17 years being treated for iron overload caused by transfusions should pause the medicine and contact their treatment team immediately during an acute illness that may cause fluid loss or dehydration, such as vomiting, diarrhea, or a prolonged reduction in food or fluid intake. More frequent monitoring is needed. A doctor must decide whether to restart treatment after food and fluid intake and fluid balance have recovered and kidney function has been assessed.[13][14] This is not a universal rule for all ages, causes of iron overload, or formulations.

If you are unsure about your child’s product, the condition it is prescribed for, or when it should be paused, contact the prescribing team immediately if these problems occur. If you cannot reach them, seek medical care immediately and bring the medicine packaging and written plan. Do not wait until after giving the next dose to ask. Seek immediate medical care if your child cannot drink, passes much less urine, or worsens rapidly. Before treatment starts, confirm with a doctor or pharmacist how to manage other deferasirox products in China and your child’s individual situation. Do not treat the wording for U.S. products as the wording of the prescribing information for all Chinese formulations.[15]

Hydroxyurea may affect white blood cells or platelets. Have blood tests as scheduled by your doctor, and contact your team immediately if you receive abnormal results. If your doctor tells you that your blood counts meet your personal criteria for pausing treatment, pause it as instructed. Your doctor must decide when to restart it. The prescribing information for U.S. SIKLOS hydroxyurea tablets also requires treatment to be paused when blood counts reach the toxic range, until the counts recover. The responsible team should check the specific thresholds and treatment instructions.[10][16]

How to prepare an emergency information card

Complete it with your hematologist, and make sure the person accompanying you knows where it is:

• Your sickle cell disease diagnosis and current treatment; your most recent transfusion date, known antibodies, and transfusion reactions.
• A complete medicine list, formulations, how you actually take them, allergies, and your personal pain management plan. Clearly state the written conditions for pausing specific medicines.
• Your personal thresholds for seeking help for fever and other symptoms; daytime and nighttime contact numbers, and emergency department and ambulance numbers in your current city.
• A family contact, your preferred language, and the doctor who will care for you after you return to your home country.

At the emergency department, you can start by saying: “I have sickle cell disease. My most recent transfusion or medicine was …, and I am now experiencing …” Then explain when the symptoms started and how they have changed. After treatment, confirm who will follow up on pending results, and give your hematology team the records of the care you received.

Frequently asked questions

If I have a fever but feel fairly well, can I wait and monitor it?

How well you feel is not enough to decide. If you do not have a personal fever plan, go to an emergency department or hospital immediately for assessment at a temperature of 38°C or higher. Take children to a hospital with a pediatric emergency department. You can contact your team on the way; do not wait for a callback or an appointment.[20] If your personal plan calls for seeking help sooner, follow that plan. The CDC recommends going to an emergency department or hospital at ≥38.5°C.[1]

My vision has suddenly become blurry, but there is no pain. Can I wait until tomorrow?

Do not wait. Sudden vision changes need immediate assessment. Go to an eye department that provides emergency care or the nearest emergency department. Call emergency services for critical symptoms such as weakness on one side or difficulty speaking.[3]

If my urine becomes dark days or even weeks after a transfusion, can I send a photo to my original hospital first?

Do not simply wait for a remote response. Go to an emergency department immediately for new dark red or cola-colored urine, and tell the staff about your recent transfusion and any known antibodies or transfusion reactions.[7]

If I develop a fever while taking deferiprone, should I keep taking it?

If you use U.S. FERRIPROX tablets, the prescribing information requires you to stop the medicine immediately and seek medical care when infection symptoms occur. Your doctor must decide whether to restart it. For other products, follow the personal instructions you obtained in advance and seek immediate medical care to check what to do.[9] If you do not have a personal fever plan, go to an emergency department or hospital immediately for assessment at a temperature of 38°C or higher. Take children to a hospital with a pediatric emergency department. If your personal plan calls for seeking help sooner, follow that plan.[20] The CDC recommends going to an emergency department or hospital at ≥38.5°C.[1]

My child is vomiting or has diarrhea while taking deferasirox. What should I do about the next dose?

If your child uses one of the U.S. formulations listed in this guide, is being treated for iron overload caused by transfusions, and is aged 2–17 years, pause the medicine and contact the team immediately if an acute illness may cause fluid loss or dehydration. A doctor must decide when to restart it based on food and fluid intake, fluid balance, and kidney function.[13][14] If you are unsure about the product or your child’s individual criteria, contact the doctor immediately. If you cannot reach them, seek medical care and bring the medicine packaging. Do not wait until the next dose.

What should I do if someone becomes very sleepy and cannot be woken after taking pain medicine?

Call emergency services immediately and explain that they may have taken an opioid. If naloxone is available and you know how to use it, give it according to the instructions or the operator’s guidance. Do not cancel emergency help because the person wakes up.[6]

If an erection is painless but will not go away, do I need emergency care?

Seek help promptly. If it has not gone away after about 30 minutes, contact your hematology team immediately, even if it is painless. Go to an emergency department immediately if it lasts 1 hour without going away, you do not know when it started, or you cannot reach your team. Tell the team immediately about repeated abnormal erections, even if they are brief, painless, and have already gone away. A normal erection that is brief, painless, and goes away on its own does not always need to be treated as an emergency.[17][18][19]

If I only have chest pain and no fever, can I wait?

Do not wait. Chest pain or trouble breathing needs immediate emergency assessment. Acute chest syndrome is a sickle cell disease emergency.[2][11]

What if I cannot find my transfusion or medicine records right now?

Seek care first and explain what you know verbally. Ask your family to provide your medicine list, transfusion dates, and antibody information afterward.

If my blood test results are abnormal, can I stop hydroxyurea myself?

Contact your prescribing doctor immediately to explain the results. If your doctor has already told you that your blood counts meet your personal criteria for pausing treatment, pause it as instructed. Your doctor must decide when to restart it.[10][16] This answer does not replace medicine-specific emergency instructions for other products.

Sources

1. U.S. CDC: Sickle Cell Disease and Fever.

2. U.S. CDC: Sickle Cell Disease Emergency Guide, archived material.

3. Manchester Royal Infirmary: Sickle Cell Disease Emergencies; St George's Hospital, UK: Acute Vision Changes in Sickle Cell Disease.

4. UK NHS: Vomiting Blood.

5. UK NHS: Anaphylaxis.

6. U.S. FDA: Naloxone and Opioid Overdose.

7. Guy's and St Thomas' Hospitals, UK: Delayed Reactions After a Simple Blood Transfusion in People With Sickle Cell Disease.

8. UK NHS: Blood Transfusion and Its Complications.

9. U.S. DailyMed: FERRIPROX Deferiprone Tablets Prescribing Information, a specific U.S. product.

10. U.S. National Heart, Lung, and Blood Institute: Sickle Cell Disease Treatment.

11. U.S. CDC: Acute Chest Syndrome.

12. People's Government of Beijing Municipality: 120 Emergency Number, sourced from the National Health Commission.

13. U.S. DailyMed: EXJADE Deferasirox Tablets for Oral Suspension.

14. U.S. DailyMed: Zydus Deferasirox Film-Coated Tablets.

15. Jiangsu Hansoh Pharmaceutical: Ruiyige Deferasirox Tablets Prescribing Information (Revised 2022); the prescribing team should check whether this is the current version.

16. U.S. DailyMed: SIKLOS Hydroxyurea Tablets Prescribing Information, a specific U.S. product.

17. UK NHS: Priapism, including advice to seek emergency care for a painful erection lasting more than 1 hour in someone with sickle cell disease.

18. Alder Hey Children's Hospital, UK: Priapism in Children With Sickle Cell Disease; Guy’s and St Thomas’ Hospitals: Priapism in Sickle Cell Disease.

19. University College London Hospitals: Priapism in Patients With Sickle Cell Disease.

20. University College London Hospitals: Sickle Cell Disease Emergencies in Adults; Sickle Cell Disease Emergencies in Children.

All sources above were accessed on 2026-11-06. The prescribing team must confirm local product availability, prescribing information, and individual management plans.