How can I avoid fluid balance problems?

Many patients with AL amyloidosis should limit their fluid intake.  This advice is extremely important, but is often overlooked.

Fluid intake should be steady and should usually not exceed 1.5 litres per day.

Patients receiving chemotherapy for other conditions that are not AL amyloidosis are often told to “drink plenty” to avoid dehydration.  But in AL amyloidosis, this well-meaning advice is inappropriate and can prove dangerous.

Fluid excess can be avoided by careful attention to the 3 Ds:

  1. Diet
  2. Diuretics
  3. Daily weights

 

  1. Diet:

Fluid intake should be steady and should usually not exceed 1.5 litres per day.

Salt intake should be limited.  This includes attention not just to salt deliberately added to the food during cooking or at the table but also to ready prepared foods with high salt content such as processed foods, crisps, bacon, canned meats, sausages, canned soups and smoked fish.  Apart from that, a balanced, healthy diet is always advisable.  It can be very helpful to meet with a dietician for precise and personalised dietary advice.

  1. Diuretics:

Doctors will often prescribe diuretics (water tablets) which increase the amount of urine produced and help the body to lose excess salt and water in the urine.  This can help to reduce ankle swelling and breathlessness.  Diuretics prescribed may include furosemide and spironolactone.  Taking these drugs is not a substitute for avoidance of excessive dietary salt and water.

Patients should follow their doctor’s advice carefully regarding the dose of diuretic and the time of day when the tablet should be taken.

  1. Daily weights:

Some patients benefit from recording their weight regularly, usually daily or weekly.  It is important that weight should be measured consistently – using the same scales, at the same time of day.  This is usually best done first thing in the morning after passing urine, just wearing underclothes.  Several litres of fluid can accumulate in the body without it being very noticeable.  An increase in weight can be an early sign of fluid overload.  The doctor or nurse can then recommend appropriate measures such as increased diuretic dose, before the patient even feels unwell because of the fluid overload.

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