Starting on high dose steroids

Who is the leaflet for?

For all patients prescribed high dose steroids as part of their treatment for a haematological disease or following stem cell transplantation.

What are steroids?

Steroids are substances hormones which are naturally produced by the body and may be used for the treatment of haematological disease or conditions such as graft versus host disease (following stem cell transplantation). They may be administered as tablets or by intravenous injection, depending on the formulation prescribed. You may receive a short course (one to two weeks) or a longer regimen with a more gradual reduction in steroid dose over several weeks to months. If you receive a longer course of steroids, we will provide a chart to record the dosage, your last blood pressure and blood glucose readings. Please bring this chart to all clinical and Haematology Day Unit appointments.

Potential side effects of steroids

This leaflet details some of the potential side effects associated with the use of steroids. If you experience any new symptoms after starting to take steroids, please inform your doctor or clinical nurse specialist.

Raised blood sugar (glucose) levels

Steroids may cause an increase of blood sugar levels (also known as hyperglycaemia), particularly if you have a history of diabetes or have impaired glucose tolerance. Please inform us if you have had either of these conditions diagnosed by your GP.

Blood glucose levels should be checked at least twice in the first week of taking steroids, usually in the late morning or afternoon. These will initially be checked at Addenbrooke’s, either on Haematology Say Unit or when you attend for clinic, and may later be checked by your GP or local hospital. If the levels are higher than 12mmol/L on at least two occasions, we will monitor them (with finger prick testing) four times over the course of a day on Haematology day Unit or in clinic. If they remain elevated, you will receive treatment, usually a tablet, to maintain the blood sugars within an acceptable range. Blood sugars usually normalise once the dose of steroids is reduced or stopped.

Blood glucose monitoring:

• If your blood glucose levels are elevated, you will be provided with a blood glucose monitor and testing strips and taught how to perform self-testing by your GP, community diabetes team or Addenbrooke’s.
• You will also receive an information leaflet giving appropriate blood glucose levels, potential warning symptoms you may experience if your levels are too high or low and who to contact if you have any concerns.
• We will inform your GP and/or community diabetes specialist nurse who will be able to review your glucose levels, adjust your medications and suggest dietary changes to stabilise your blood glucose levels.

Indigestion

Steroids can irritate the lining of the stomach and may cause symptoms of indigestion. You will often start on a medicine to alleviate these symptoms during your stem cell transplant. Please let your doctor know if you have ever experienced stomach ulcers or have a history of indigestion.

Raised blood pressure

Steroids may increase your blood pressure. Please notify your doctor if you already suffer from high blood pressure or are on medications to treat this. Your blood pressure will be checked at least once a week when starting on steroids.

Mood disturbance

Steroids may affect your mood and temperament. You may notice you feel anxious, restless or have increased energy levels. Some people experience problems sleeping and we therefore advise you to take steroids in the morning, preferably after breakfast.

Fluid retention

It is not uncommon to experience some mild ankle swelling due to fluid build-up. Please let your doctors know if you experience this. It is usually a short-term issue that resolves as steroid doses are reduced or stopped.

Risk of cataracts or glaucoma

Long term use of steroids can increase the risk of cataracts, glaucoma or eye infections. Please inform your doctor if you notice any disturbance of vision or have pre-existing glaucoma.

Thinning of bones

Steroids may be associated with thinning of the bones and if you are on a long course of treatment (over several months), you may be advised to take calcium and vitamin D supplements to help strengthen your bones. We may also perform an annual bone scan to monitor bone density.

Further information:

• Macmillan (opens in a new tab)

Contact numbers:

BMT CNS Team: - 01223 217224

Lymphoma CNS: - 01223 596279

Myeloma CNS: - 01223 596279

Leukaemia CNS: - 01223 596279

Emergency Haematology 24 hour triage line: 01223 274225