Follow-Up Care of Amyloidosis

Executive Summary:

Follow-up care of Amyloidosis is considered an important approach for analyzing the health condition of the patient. The disease condition of Amyloidosis is more often not predicted. Therefore the integration of follow-up care, in this case, becomes essential and inevitable. It is mainly carried out by the healthcare team, who is responsible for developing post-treatment care strategies according to the patient’s health condition. The patients visit the healthcare team on a regular basis for regular medical check-ups and screening. In addition to diagnosis, this helps estimate the post-treatment health progress and disease condition among the survivors.

The follow-up care usually includes blood and urine tests along with the integration of imaging tests for assessing the patient’s physical health issues and prioritizes their physical and mental well-being. Rehabilitation is the important follow-up care approach involving different services such as therapies (physical and mental), pain management, career counselling, emotional counselling, diet and nutrition planning. It aims for providing aid to the survivors to regain control over their lives and motivate them to be self-sufficient, active and more productive. The appropriate management and relief from the side effects of treatment are the important aspects in adopting follow-up care services.

Follow-up care strategies for Amyloidosis

Amyloidosis is a rare but severe disorder. Deposition of a rare abnormal protein named amyloid in the tissues and organs of the body causes Amyloidosis. It is in such context follow-up care of Amyloidosis becomes extremely important. Amyloid deposits are usually in heart, kidneys, spleen, digestive tract etc. Since Amyloidosis is a rare disease condition, researchers are studying the actual cause. Better ways to prevent, diagnose and treat the disease are being studied. Hence in such a situation, where the disease condition is not predicted, follow-up care becomes essential and inevitable. 

Care for people detected with Amyloidosis doesn’t end with active treatment. The health care team will develop a post-treatment care strategy as per a patient’s disease condition, called follow-up care of Amyloidosis. Every survivor needs to undergo an appropriate follow-up care routine. Follow-up care involves the regular visit of the patient by health care provider post-treatment for regular medical check-ups and screening to evaluate the health progress and disease condition of the patients. 

The follow-up care mainly involves regular physical examinations, several medical tests of blood and urine, along scans for monitoring the overall health status of the patient. The outcome of these tests and scans helps the doctor for determining and detect the variations in the health status of the patients any other complications, symptoms or signs indicating any disease or side effects due to the treatment.

Amyloidosis’ follow-up care addresses a patient’s physical health issues and prioritizes their mental well-being. Amyloidosis survivors grab the opportunity for mitigating any emotional, mental concerns while communicating with their doctor and healthcare team ​1​


A survivorship care plan comprises a full, detailed summary of the treatment protocol and a follow-up plan designed according to the health condition and requirements of the patient. The follow-up planning is nothing but the tracker for monitoring the patient’s condition after the treatment. It further ensures that the patient receives regular, competent care to prevent any chance of disease recurring condition or worsening of any side effects due to the treatment.

Follow-up care is important in rare disorders like Amyloidosis. Their behavior is unpredictable, and recurrence is possible. Doctors can check for recurrence or distant metastasis through these follow-up check-ups and help treat them.

In Follow-up care, the doctor may recommend rehabilitation. Rehabilitation involves various services such as therapies (physical and mental), pain management, career counselling, emotional counselling, diet and nutrition planning. The ultimate goal of rehab is to aid survivors to regain control over their lives and encourage them to be self-sufficient, active and productive as much as possible. Rehabilitative therapies and sessions help cope with, treat, and relieve these symptoms or side effects post successful cancer treatment. Follow-up care and rehabilitation collectively focus on improving the quality and comfort of the life of cancer survivors. 

Proper care and guidance

Proper care and guidance are provided for patients to cope with mental stress, anxiety, and depression post-treatment of Amyloidosis (or any disease in general). Today, most cancer care centres have support groups and services that offer survivors the support they require. These support services will have various therapies, counselling and other sessions to address the emotional concerns of the survivors.

The primary goal of follow-up care post successful treatment is to check for any possible recurrence. In most amyloidosis cases, the condition recurs, and the body will begin to produce abnormal protein fibrils again amidst successful treatment. A doctor who is familiar with your medical history will be able to guide you with personalized information regarding your risk of disease recurrence during follow-up check-ups.

The doctor may ask you different questions to evaluate your health condition. Depending on your disease condition’s type, stage, and gravity during the initial diagnosis and treatment, the doctor may prescribe various medical tests (blood/urine/imaging tests) and scans.

Anxiety and stress while coming for follow-up check-ups and waiting for the test results is common. Survivors constantly worry about cancer recurring again in the body. They should openly communicate their fears with their doctor, who help get necessary support. 

Side effect management

Another important aspect of follow-up care is managing and relieving the side effects of treatment. People may experience many long-term and short-term side effects while receiving treatment for cancer ​2​. The late side effects or long-term side effects tend to last for a more extended period (even months or years) post-treatment. These side effects can affect the physical and mental well-being of a survivor.

Patients should talk with their doctor or health care team regarding the treatment they will receive as per their cancer condition and what side effects they should expect, well before the treatment begins. If any side effects are expected to cause troubles, proper treatment and care should be managed and relieved. In the case of follow-up care for Amyloidosis, frequent monitoring of the kidney and liver function is crucial. 

People who have received treatment for Amyloidosis are urged to make healthy life choices. They are encouraged to follow established guidelines like eating a healthy balanced diet, maintaining healthy body weight, undergoing screening tests as and when required, not indulging in unhealthy practices like drinking, smoking etc. They are also encouraged to perform physical activities without straining their bodies. Talk with your doctor or healthcare team, and design a plan to keep up a healthy lifestyle.

Survivorship in follow-up care of Amyloidosis

Amyloidosis survivors and the doctor should work together to design a personalized follow-up check-up and care plan ​3​. Survivors should make it a point to address or discuss any fears or concerns regarding their mental and physical health with their health care provider. Also, survivors should record all their treatments and medical history for future reference. 

Survivors can also enquire about who will lead their follow-up care to their doctor. Some people continue to see their oncologists or health care team, whereas others transition back to the supervision of another medical professional or their family doctor. Several factors like the type, grade, gravity of the disease condition, possible side effects, personal preferences etc., shape such decisions. 

If, in case, a medical professional who was not a part of your treatment lead your follow up care, be sure to share all relevant medical history and survivorship plan with them. It applies in the case of all future health care providers. It is essential to help the new doctor plan your care based on your past medical details.


  1. 1.
    Palladini G, Milani P, Merlini G. Management of AL amyloidosis in 2020. Blood. Published online December 3, 2020:2620-2627. doi:10.1182/blood.2020006913
  2. 2.
    Koh Y. AL amyloidosis: advances in diagnosis and management. Blood Res. Published online July 31, 2020:S54-S57. doi:10.5045/br.2020.s009
  3. 3.
    Moon AO, Calamia KT, Walsh JS. Nodular Amyloidosis. Arch Dermatol. Published online September 1, 2003. doi:10.1001/archderm.139.9.1157