Information for patients
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What is methotrexate?
Methotrexate is a medicine that reduces the activity of your immune system. This is known as an immunosuppressant.
Why am I being asked to take this medicine?
You have a long-term lung condition that is being caused by an overactive immune system. This causes inflammation or scarring in your lungs and airways.
The most common lung illnesses that methotrexate is used to treat are sarcoidosis and some lung scarring illnesses called fibrosis. It is very occasionally used in other conditions, such as severe asthma.
Your Doctor or team will explain in detail why they think you should take this treatment.
Is this a common treatment?
Methotrexate has been used for many years to treat other conditions that are caused by an overactive immune system or inflammation. It can work very well in conditions like rheumatoid arthritis, eczema and psoriasis.
There have been fewer studies in using methotrexate in chronic lung diseases. Currently, using methotrexate in lung disease is an unlicensed use.
What does unlicensed use mean?
Medicines are developed to be used in a certain illness or group of illnesses. They are granted a license for use in these conditions. As time passes, medicine may be tried to treat other conditions that are different from what they have originally been licensed to treat.
These treatments may be very effective in the new condition. It is up to the manufacturer to apply to have any additional conditions added to the license.
This can be time consuming and very expensive. If the new condition is rare and not likely to affect many patients, they may not consider this to be worth their while.
The medication can still be prescribed and used for the condition.
This is the case for methotrexate and lung disease.
For more information please see patient information leaflet “Unlicensed medicines”.
How will my doctor or team decide that methotrexate may be the right treatment for me?
You will have had a number of different tests before starting this treatment. This will included CT scans (3 dimensional X-ray tests), breathing tests and blood tests.
You may have had your breathing or X-ray tests done more than once and these have shown that your lung condition is getting worse.
Multi-disciplinary team decision
Your Doctor and team will have taken your case to a multi-disciplinary team meeting called an Interstitial Lung Disease meeting.
At this meeting your case, including your breathing tests, X-ray scans, blood tests and any biopsies you may have had will be discussed by a panel of experts. These will include:
- Chest consultants (specialists in lung conditions)
- Radiologists (X-ray doctors)
- Rheumatologists (specialists in inflammatory conditions)
- Pathologists (Doctors who are experts in looking at biopsies and body tissue under a microscope)
This team will have made sure the diagnosis is correct and will have recommended you start this treatment.
Will this cure my lung condition?
It is extremely unlikely that methotrexate will cure your lung condition.
The main aim of taking methotrexate is to stabilise your condition and stop it from getting worse.
Very rarely, some patients will have their lung condition improve significantly. This is more likely for lung inflammation rather than lung scarring.
What checks will I have before I start this treatment?
Your Doctor will have examined you and reviewed all of your tests. They will also have explained the aim of your treatment.
They will also check
- What medicines and supplements you take – This is to make sure that your current medicine doesn’t interact with methotrexate. You must also tell your Doctor about any over the counter medication, herbal remedies or health food supplements you are taking.
- Blood tests – The team will check your full blood count to make sure you are not anaemic and have a normal level of white blood cells. They will also check your kidney and your liver blood tests, to make sure these are normal.
- Vaccines – Your Doctor will check if you have had any recent vaccines. They will also ask if you have ever had chicken pox or shingles. If you haven’t, you (and anyone that lives with you) may be asked to have a chicken pox vaccine.
- Whether you are pregnant / trying for a child or are breast-feeding – Methotrexate should not be taken in these situations.
- Whether you have an infection – Methotrexate should not be taken when you have an infection.
- Whether you have chronic liver or kidney disease – Methotrexate can make these worse.
- Whether you have had severe mouth or stomach ulcers – Methotrexate can make these worse.
- How much alcohol you normally drink in a week
How will I take methotrexate?
You will take Methotrexate orally (by mouth) in tablet form.
You will take it once a week only; do not take methotrexate every day. Be careful to make sure you take it on the same day every week.
You should take the tablet in the evening, 1 hour after a meal. This reduces the chances of methotrexate making you feel sick.
Important – Methotrexate tablets come in two different strength tablets: a 2.5mg and a 10mg tablet. They are both yellow, but slightly different shapes. You will be issued only 2.5mg strength tablets.
Please check your tablets every time you get a new prescription to make sure you have not been given 10mg strength tablets. If you been mistakenly given 10mg tablets, take them back to the pharmacy so that you can be given 2.5mg tablets.
Handle the tablets as briefly as possible and wash your hands after picking them up.
What dose of methotrexate will I be taking?
You will usually start at 2.5 – 5mg (1 – 2 tablets) a week.
The dose will gradually be increased every 2 weeks by 2.5 – 5mg (1 to 2 tablets). The target dose is slightly different for everyone but is usually somewhere between 10 – 25mg (4 to 10 tablets) per week.
How will I be monitored while I am taking methotrexate?
Blood tests – You will have a blood test to check your blood count, kidney and liver function every two weeks, until you reach your target methotrexate dose. After this, you will have a blood test every month for 4 months.
If things are stable and you are coping well with your treatment, you will have a blood test every three months while you are taking the treatment.
If you become unwell, or the team change your methotrexate dose, you will need to have your blood tests more often.
There is no specific blood test to check the level of methotrexate in your blood.
Clinic visits and tests – You will be seen regularly in the outpatient clinic. The team will check that you are coping with the treatment and will ask you questions about your lung condition. You will also have regular follow up breathing tests and X-ray scans.
Will I need any other treatment while I am taking methotrexate?
Yes, you will need to take other medicine while you are taking this treatment.
Folic Acid – This is a vitamin supplement. It can help cut down the side effects such as nausea, stomach upset and liver inflammation.
You should take it 2 days after your methotrexate. Do not take it in the same day as your methotrexate. Some patients may need to take it every day (apart from the day they take methotrexate).
Other treatments for your lung condition – Depending on the lung condition you are taking methotrexate for, you will very likely need to take other treatment, such as regular steroid tablets or inhalers.
Your Doctor or team will explain to you what other treatments you will need and if the doses of these will need to change.
How do you know if methotrexate is working?
Methotrexate takes several weeks to start to have an effect and it may be up to 3 months before any noticeable change.
The team looking after you will use a combination of how you are feeling, breathing tests and X-rays to check if the methotrexate is working.
For how long will I need to take methotrexate?
If the methotrexate is effective and you are not having any worrying side effects, you would stay on this medicine.
If your lung condition has improved or been stable for a long time, your Doctor and team may wish to slowly reduce the dose of methotrexate, or even stop it completely. This would be done very carefully and only after a discussion with you.
New medicines and treatments are being developed all the time. If a medicine is developed which is better for your condition, then you may stop taking methotrexate.
What side effects could I have while taking methotrexate?
Most patients who take methotrexate have no side effects, or have mild side effects that are easily managed
Some side effects can happen immediately or within a few hours. Some can take weeks or months to develop.
Immediately or within 48 hours:
- Sickness and Diarrhoea
- Skin rashes
Within a few weeks:
- Mouth ulcers
- Hair loss
Long-term side effects (these side effects are rare):
- Inflammation and scarring of the lung – This can make you breathless or cause a persistent cough. Report these symptoms immediately and stop the medication until you receive further advice.
- Suppression of your bone marrow – This can cause severe anaemia, which can make you breathless and very tired. It can also cause your white blood cell count to fall. This could cause severe infections. It can lower your platelet cell count, which cause easy bleeding and bruising.
- Inflammation and scarring of the liver
There are some signs of developing very serious side effects. They are rare. If you notice any of these, stop taking methotrexate and report them to your doctor immediately:
- frequent fevers, chills, sore throat or infections
- bruising very easily
- bleeding very easily
- chest pain or breathlessness
- long term dry cough
- yellowing discolouration of the skin or whites of your eyes OR very dark urine (signs of liver problems)
- severe nausea, vomiting or stomach discomfort
- severe itching of the skin (may be signs of liver problems)
- severe and continuing diarrhoea or vomiting
- severe or blistering rash / mouth or gum ulcers
- if you are female, soreness or ulcers of the vagina
What will happen if I forget to take my tablet?
If you forget to take the tablets and remember within 1 or 2 days the day you usually take them, you should take them at this point.
However, please remember that whatever day of the week you have remembered to take it on will now be your methotrexate day from now on.
If it has been more than 1 or 2 days from the day you usually take your tablets, you should miss that week’s dose of methotrexate and reset it again on your usual day the next week.
DO NOT take double your normal dose the following week to “make up” your dose. This could result in severe or even fatal side effects.
Your lung disease is extremely unlikely to flare up or worsen with a single week of missed methotrexate dose.
What should I do if I accidentally take too much of my methotrexate?
This can be extremely serious and even fatal. If you have taken too many tablets, or you are just not sure, speak to your lung Doctor or GP immediately. If they are not available, or it is the weekend, you will need to go to Accident and Emergency immediately.
Will this affect any other medications I am taking?
Your team will check all of your normal medication to make sure there is not a problem with taking it with Methotrexate.
If you are prescribed a new medicine or you want to start taking a new supplement/herbal remedy, you should tell your Doctor so that this can be checked.
You should be very careful about the following medicine:
- Aspirin, ibuprofen and non-steroidal anti-inflammatory drugs
- Antibiotics that include trimethoprim and co-trimoxazole
- Omeprazole and other proton pump inhibitors (PPI’s)
- Theophylline (Uniphyllin, Slo-Phylin)
This is not a complete list and every medicine should be checked.
Is it safe to have vaccinations?
The pneumonia vaccine and the flu vaccination are safe and you should take these.
Live vaccines – Live vaccines such as Measles, Mumps and Rubella (MMR), Typhoid, Yellow Fever, BCG and live polio vaccines should be avoided. If you have a very urgent need to have one of these vaccines, speak to your Doctor about what could be done.
You should avoid contact with anyone who has had the oral polio vaccine within the last 6 weeks.
Chicken pox – If you have not had chicken pox, you may be asked to have the chicken pox vaccine. If you live with anyone who has not had chicken pox, that person may also be asked to have the vaccine.
What should I do if I think I have chicken pox?
If you believe you have chicken pox, you should tell your Doctor immediately. This is because you may need special treatment.
If you have not had chicken pox or been vaccinated and you are in contact with someone who has chicken pox or shingles, you should tell your Doctor immediately.
What if I am trying for a baby / I am pregnant or I am breastfeeding?
Methotrexate can reduce fertility in both men and women.
Contraception – If you are taking methotrexate and you are sexually active, we recommend that you use two methods of contraception.
Trying for a baby – Women and men should both stop taking methotrexate for at least three months before trying to become pregnant.
Pregnancy – Methotrexate can cause serious harm to a developing unborn baby. It should NOT be taken during pregnancy. If you become pregnant while taking methotrexate, you must tell your Doctor immediately and stop taking the medicine.
Breast-feeding – Methotrexate should not be taken while breast-feeding.
Can I have an operation if I am taking methotrexate?
If you need to have an elective operation for any reason, please let your team know so that they can plan what to do about your methotrexate use before and after your operation.
Can I drink alcohol while taking methotrexate?
Methotrexate and alcohol can both affect the liver. We recommend that you do not drink alcohol at all. If you still wish to drink alcohol, we would advise sticking to the recommended safe weekly levels.
This is 14 units per week or 2 units per day. If possible, try to avoid binge drinking, even if this works out as being less than the recommended safe weekly limits
Should I be careful about what food I eat?
The main concern while taking methotrexate is being more susceptible to picking up infections. Most food that we eat is cooked or treated, which reduces the number of harmful bacteria and germs in it.
You should be careful about eating foods made from unpasteurised milk, such as soft cheeses. You should also be very careful about eating uncooked meat or fish, such as pâté and some sushi.
You should avoid these foods and always read food labels. If you are eating out, you should ask about any meals you are ordering.
Is it safe to travel while I am taking methotrexate?
Yes, it is safe to travel. If you are planning to spend a long time abroad, you should make sure that you have arranged a supply of all of your medication to cover your whole trip.
Have a plan for how you will arrange a further supply if you lose your medication or your return home is delayed.
If your holiday is happening when you would be due a blood test for monitoring of your methotrexate, please speak to your Doctor or team as to what you should do.
It is a good idea to carry a clinic letter or a detailed note describing why you have been prescribed methotrexate. If something unexpected happened and you need to be admitted to hospital, especially if you were unconscious, this would help the team looking after you.
This would help them to plan any treatments you might need.
Is it safe to exercise while I am taking methotrexate?
Yes, exercise is safe and it will help your lung condition.
If you have a hobby or take part in a sport that results in cuts or scrapes, or if it takes you into very dirty or contaminated environments, you will have to be very careful to avoid infection.
Make sure you clean any wounds with antiseptic and report any signs of infection as soon you notice them.
Comments, concerns, compliments or complaints
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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: PIL1337
Date for review: 11 August 2024