Long Term Steroid Treatment

What are steroids and what are they used for?

Steroids are hormones or chemicals which are produced in your body by your adrenal glands. Steroids have many roles, one of them is to damp down inflammation in your body.

There are illnesses which cause inflammation in your body. These can be treated by giving you steroid treatment at much higher levels than your own body would normally produce.

Why am I being asked to start steroid tablet treatment?

You are being asked to have this treatment because you have an illness causing inflammation in your chest, making you unwell.

These illnesses can affect different parts of your chest:

Airways or “pipe-work”

Asthma and Chronic Obstructive Pulmonary Disease (COPD) cause inflammation in your airways. They are usually treated with steroid inhalers. If these aren’t effective enough, your doctor may ask you to also start taking steroid tablets.

This is usually only done for asthma sufferers. It is very rare for your doctor to ask you to take long term steroid tablet treatment in COPD, although you may get short courses during flare ups.

Lung tissue and lymph glands

Your lung tissue is made up of lots of tiny air sacs called alveoli and the tissue separating them. There is also a network of lymph glands underneath your breast bone and in your lung tissue.

The lymph glands are part of the body’s immune system and help fight off infection in your chest.

Illnesses can cause inflammation in your lung tissue (hypersensitivity pneumonitis, interstitial pneumonia and some others) or your lymph glands (sarcoidosis).

Steroid tablets can be used to treat these illnesses to allow the lungs and lymph glands to return to normal.

Arteries and veins

The arteries and veins carry blood through the lungs. There are illnesses called vasculitides, caused by an overactive immune system, that cause the arteries and veins to become inflamed and are usually treated with steroid tablets and other medicines called immune-suppressants. These are very rare illnesses.

How do I take steroid tablet treatment?

Steroid tablets are taken orally (by mouth), usually once a day. The most common steroid tablet treatment is prednisolone. Other oral steroid tablet treatments are Dexamethasone and Hydrocortisone. These steroids are used much less commonly to treat chronic chest conditions.

What checks will I need before I start this treatment?

Your doctor will check for medical conditions which would stop them giving you steroid treatment, or make you more likely to get side effects.

Some health problems can get worse when taking steroids, such as high blood pressure, diabetes, gastro-oesophageal reflux disease (commonly known as acid reflux) and some eye problems. Your doctor will also check if there are any medicines you are taking which the steroids could interfere with.

You will be asked about:

• If you are a woman of child-bearing age you will be asked if you are pregnant or trying to become pregnant. You may also be asked to do a pregnancy test.

• Vaccinations: You will be asked if you have had any vaccinations recently.

• Chicken pox: You will be asked if you have had chicken pox. If not, then you may be asked to have a vaccination before you start treatment.

• Operations: You will be asked if you have had any operations recently.

Your doctor will also usually check your:

• Blood pressure

• Weight and body mass index (BMI)

• Blood tests: Blood samples will be taken to check your level of potassium, triglycerides (a form of fat in your blood stream) and HbA1C (a long term measure of the level of sugar in your blood, it helps to work out if you have, or are at risk of developing diabetes)

• If you are older, they may wish you to see an optician to check for conditions including glaucoma and cataracts. Glaucoma is high pressure within your eyes. Cataracts are when the tissue of the lens of your eye becomes cloudy or white making it difficult to see.

How will I take this treatment?

You will take this treatment in tablet form by swallowing it. You should take it once a day, first thing in the morning. It is best taken with or just after food to help prevent any stomach problems.

If you forget to take your dose, take it as soon as you remember later that day.

You must never suddenly stop taking the medicine as your body needs them to function normally. Long term steroid treatment shuts down your body’s production of its own steroids.

If you stop taking steroids suddenly, this can lead to a potentially life threatening condition called adrenal insufficiency.

The symptoms of this include:

• Fatigue
• Loss of appetite and weight loss
• Abdominal pain
• Nausea and vomiting
• Headache
• Joint pains
• Dizziness
• Fever

At its most severe, it can cause extremely low blood pressure, collapse and unconsciousness or death.

If you are being sick or vomiting and cannot keep medicines down, you must call medical services and make them aware that you are on long term steroid treatment.

What dose will I take?

You will be given the lowest dose possible that it takes to control your condition. You may start at a high dose, for example 8 – 10 tablets a day and then gradually reduce to a much smaller dose.

Depending on your condition you may stay on steroids for weeks to months. Occasionally some patients have to stay on steroid treatment permanently.

What side effects could there be?

About half of people taking long term steroid treatment will develop some form of side effect. The longer you are taking steroids, or the higher the dose, the chance of side effects increases.

Possible side effects include:

• Weight gain

• A change in appearance, such as a more rounded face, stretch marks or more body hair

• Acne

• Fluid retention, causing a puffy face or ankles

• Muscle weakness: These types of steroids are different to anabolic (body building) steroids. Steroid treatment can cause your muscles to shrink or weaken

• Skin thinning and easy bruising

• Wound healing: If you cut or scratch yourself, or if you were to have an operation, the wounds would take longer to heal

• High blood pressure, which may not have symptoms

• Diabetes mellitus

• Adrenal insufficiency

• Mental health: Long term steroid tablets, especially at higher doses, can cause insomnia, irritation, confusion and euphoria. Less commonly, it can cause mental illness, such as depression, suicidal thoughts or psychosis.

• Infections: Steroid treatment can make you more prone to picking up infections. We ask you to see your doctor as soon as you feel you are developing an infection. The “normal” signs of infection can be different when you are taking this treatment, so it is important that you contact your doctor or team even if you are just “not feeling right”.

• Bone thinning: This is also known as Osteoporosis and can make you prone to breaking bones more easily if you fall or are injured.

• Glaucoma and cataracts: Long term steroid treatment can lead the development of these at a younger age.

• Gastro-oesophageal reflux disease (also known as peptic ulcer disease): Long term steroid treatment causes the stomach to produce more acid and also thins the protective layer of mucous lining your stomach. This can give you stomach pain and more frequent indigestion and heart burn.

More seriously it can also cause stomach ulcers which can bleed and cause you to vomit blood.

• Epilepsy – if you take certain medications for epilepsy they can interact with steroid treatment to either make you more prone to seizures or reduce the effectiveness of the steroids.

What will cut down the chance of having side effects?

The main thing your team will do is get the dose of your steroids down as quickly as is possible to keep your condition under control. However, even at small doses side effects can and will occur.

• Weight gain: You should keep a check on your weight once a week or fortnight. Steroids can increase your appetite so you may need to be much more aware of eating healthily, portion control and exercise

• Acne: You may need to change your skincare regime to keep this under control. Occasionally people who develop severe acne may need other medicines to treat this.

Your team may also think about the following:

Gastro-oesophageal reflux disease

You may be given a tablet such as Lansoprazole or Omeprazole (amongst others) to protect the lining of your stomach and stop ulcers developing. You may still develop ulcers, even if you are taking these medicines. You should report any stomach pain, indigestion or heartburn to your team or doctor, particularly if it is becoming more frequent.

High Blood pressure

We will ask you to get your blood pressure checked regularly. Some patients buy their own blood pressure monitor to keep a check on it at home. High blood pressure usually doesn’t cause symptoms but can cause headaches, dizziness, a feeling of pressure in the head and breathlessness. If you experience these symptoms, we would ask you to get your blood pressure checked as soon as possible.

Diabetes Mellitus

If you have diabetes already, your team may arrange for you to have this monitored more frequently, or be taught how to check your own sugars at home (if you don’t already do this).

If you don’t have diabetes we ask you to be alert for symptoms of high blood sugar including:

• Excessive thirst, making you drink much more fluid than normal
• Excessive urination including getting up at night to pass urine
• Feeling muddled or confused
• Unexplained weight loss

If you notice these symptoms, we ask you to see your doctor or team to check your blood sugar and some other tests for diabetes.

We also check your blood using a test called HbA1C regularly while you are on treatment. This blood test gives an idea of the longer term level that your blood sugar has been running at over the last 6 weeks. We do this because you may not be getting symptoms if your blood sugar has been high.

Osteoporosis

There are some things you can do yourself to cut down the chance of developing osteoporosis:

• Make sure your calcium intake is at least 1.5g (1500mg) per day. Vitamin D supplements may also help.

• If possible, do at least 30 minutes of weight-bearing exercise each day (that is, exercise which involves walking or running).

• Avoid smoking and reduce the amount of alcohol you drink.

Your team may also want you to take a daily calcium and vitamin D supplement. They may also want to do a bone scan called a DEXA scan to check how dense your bones are.

If you develop osteoporosis despite all of these treatments, you may be asked to see a specialist to discuss other treatments for osteoporosis.

Infections

The best thing is to be sensible about normal day-to-day situations. If you know a family member of yours has an infection such as a cold or flu, then stay away from them until they are better.

If you develop an infection yourself, your team may give you instructions on increasing the dose of your steroids until you are better.

Some patients may also be given a regular antibiotic tablet to take every day or three times a week to stop them picking up infections. This is usually only required in a small number of patients. Your team will explain if this is necessary for you.

What checks will I need while I am taking this treatment?

Your team will check a few things regularly while you are taking steroid treatment. These will include:

Weight

Each time you attend clinic you will have your weight checked. We will let you know the result. You can also check this regularly yourself although once a week or a fortnight is usually enough.

Blood pressure

We will usually check your blood pressure each time you come to clinic. We may also you ask you to get your blood pressure checked more regularly at your GP surgery. As mentioned before, some people do buy their own monitors to check their blood pressure at home. You cannot get a blood pressure monitor on prescription.

Blood tests

We will usually carry out the following blood tests:

• Potassium and triglycerides: We will arrange for you to have these blood tests checked 1 month after starting your steroids and then every 6 – 12 months while you are using the treatment

• HbA1C: We will carry out this blood test 1 month after treatment started and then every 3 months after this.

Eyes

We usually ask you to visit your optician every 6 – 12 months to make sure you aren’t developing glaucoma or cataracts.

You will also have your chest condition monitored, this is usually done by a combination of regular check-ups, X-rays and breathing tests.

Can steroids affect other medicines I am taking?

You may be taking other medicines for your chest or other health conditions. There are some medicines that can interact with steroid tablets. Your team will check your other medicines and may make some changes:

• Bronchodilators: These are medicines which are commonly taken through inhalers for lung problems, such as asthma and COPD. These medicines can cause the potassium level in your blood to fall and using steroids at the same time for long periods can make this a much more significant fall.

Your team may decide to monitor your blood tests if you are in large doses of each of these medicines.

• Anti-coagulants (blood thinners): Steroids may affect a blood thinner called warfarin and change the result of your blood test called the INR. You will need regular checks of this and your warfarin dose may change.

• Anti-fungal medicine: Itraconazole and Ketoconazole are used to treat some fungal infections. They can change the levels of some steroids in your blood and cause it to be much lower than usual. This can cause you to develop adrenal insufficiency. The dose of the steroid you are taking may need to be adjusted if you are given these drugs.

• Anti-epilepsy medicine: Carbamazepine, phenytoin and phenobarbital can all change the levels of steroid in your blood stream.

• Antibiotics: Rifampicin and antibiotics from a group called macrolides (these include clarithromycin and azithromycin) and can affect the level of some steroids and your dose may need to be adjusted.

• Digoxin: This is a heart medication used to treat irregular heart-beats and heart failure. Steroid treatment can occasionally cause a low potassium level in your blood stream. This can make you much more sensitive to effects of digoxin. Your team may monitor your potassium and your digoxin blood level.

• Diabetes medicine: Steroids can raise your blood sugar. If you have diabetes you will need to monitor your condition more closely. You may need more medicine added to control your diabetes and you may need to start taking insulin.

• HIV medicine: Some steroids can reduce the effects of some medicine used to treat HIV. Some HIV medicines can also reduce the effect of some steroids. If you need to use steroids for a chest problem your team will discuss this carefully with the team looking after your HIV.

• Methotrexate: This is an immune suppressing medication. The steroid called dexamethaosne can make you much more sensitive to the effects of methotrexate.

• Diuretics: These are medicines (some common names are furosemide and bumetanide) which help remove excess fluid from the body. However, they do cause you to lose potassium. Your team may monitor your blood potassium level if you are taking large doses of steroids and diuretics.

Can I have vaccinations?

The yearly flu vaccination and the single pneumonia vaccination are both safe and we strongly encourage you to take them.

It is not safe to have live or live / attenuated vaccinations if you are on high doses of long term steroids. Live vaccines include:

• BCG (tuberculosis)

• Chicken pox (varicella)

• Measles, mumps and rubella (either as individual vaccines or as the triple MMR vaccine)

• Yellow fever

If you are on a low dose of prednisolone, then you may be suitable for the shingles vaccine. The team looking after you will consider this carefully.

What will happen if I am pregnant or breast feeding?

Long term steroid treatment should not affect your ability to conceive or get pregnant.

You should tell your doctor or team if you are trying to become pregnant or find out you are pregnant.

It is safe to take steroid treatment during pregnancy. Your pregnancy is usually more at risk if you stop your treatment and your chest condition deteriorates than from steroid treatment.

There are however some things which need to be considered:

• Cleft lip or palate: There is a very small risk of your baby developing a cleft lip or palate if you have to take high doses of steroid treatment during the first trimester of your pregnancy.

• Slowing the growth of your baby: If you have to take high doses of steroid treatment during your pregnancy, this can slow the growth of your baby. This is called infra-uterine growth retardation. The obstetric team looking after your pregnancy would usually keep more frequent checks on the growth of your child.

Prednisolone is usually used in mothers who are breast feeding as there is sufficient information available to know it is safe.

A very small amount of prednisolone can cross into your milk and to your baby. This has not been shown to cause any problems for your child at doses of prednisolone up to 40 mg a day. If you are taking doses higher than 40 mg per day, this could suppress your baby’s adrenal glands, though this is very rare. Your baby would be checked for this.

What happens if I need an operation?

If you need an elective or scheduled operation, then your chest team will discuss your case with the surgical team and plan what to do about your steroid treatment.

If you need an emergency operation, then this will go ahead without delay.

Can I drink alcohol while taking treatment?

The combination of both alcohol and steroid treatment can cause stomach problems. Ideally, you would avoid alcohol or try and drink no more than 14 units per week.

Is exercise safe during steroid treatment?

Yes. We strongly encourage you to continue doing as much exercise as you are able. This will help to keep you fit and helps to reduce the chance of side effects of the steroid treatment like muscle weakness and osteoporosis.

You will be more prone to bruising and for cuts or wounds to heal more slowly. This may make contact sports less advisable.

What should I do while I’m taking steroid treatment?

• Take your steroids every day with food.

• Don’t adjust the dose yourself unless you have been given instructions how to do this.

• Never miss a dose. Be aware of the symptoms of adrenal insufficiency. If you start to notice any of these, report this to your doctor or team.

• Always carry your steroid alert card

Contact numbers

Lung Health
Telephone: 01642 624270

Department of Respiratory Medicine
Monday to Friday
09:00am-05:00pm
Telephone: 01642 624936

Emergency Department
24 hours a day, 7 days a week
Telephone: 01642 382899

Comments, concerns, compliments or complaints

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Leaflet feedback

This leaflet has been produced in partnership with patients and carers. All patient leaflets are regularly reviewed, and any suggestions you have as to how it may be improved are extremely valuable. Please write to the Clinical Governance team, North Tees and Hartlepool NHS Foundation Trust, University Hospital of North Tees, TS19 8PE or:

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Leaflet Reference: PIL1213
Date for Review: 28/08/2023