Side effects are unwanted symptoms caused by medical treatment. They’re also called “adverse effects” or “adverse reactions”. All medicines can cause side effects, particularly if they are not used as advised. This includes prescription medicines, medicines you can buy over the counter, and herbal remedies and supplements.
How likely am I to experience side effects from my medication?
It is very important to understand that your treatment can potentially cause side effects and to understand what they may be. Side effects can range from mild, such as drowsiness or feeling sick (nausea), to severe, such as life-threatening conditions, although these are rare. The risk of getting side effects varies from person to person.
The Patient Information Leaflet (PIL) supplied with your medicine will list its known side effects. If you no longer have your medicine’s PIL, you can find a copy on the electronic Medicines Compendium (eMC).
The PIL will show whether each side effect is:
- Very common: more than 1 in 10 people are affected
- Common: between 1 in 10 and 1 in 100 people are affected
- Uncommon: between 1 in 100 and 1 in 1,000 people are affected
- Rare: between 1 in 1,000 and 1 in 10,000 people are affected
- Very rare: fewer than 1 in 10,000 people are affected
When doctors prescribe medications they weigh the risk of potential side effects against the benefit that the medicine can provide. For example, if you develop pneumonia (infection of the lungs) and your doctor prescribes penicillin for your infection, you may read on the PIL that one of the potential side effects from the medicine is severe allergic reaction. Many people are allergic to penicillin and learn over their lifetime to never take it if they have had an allergic reaction, but the vast majority of those allergic reactions are not life-threatening. The important consideration is that the chance of dying or developing permanent body damage from an infection such as pneumonia is far greater than the chances of developing these severe side effects. In other words, the benefit of taking the antibiotic outweighs the potential side effects.
Today, new medications that are approved for use are studied far more extensively than at any other time in history. When a drug first comes on the market, you can be assured that it has been studied in more people and more intensely by doctors and scientists than older medications were. Medicines also continue to be carefully regulated after they’ve been licensed. This involves checking for problems and logging previously unknown side effects.
“It’s hard not to panic when you experience some side effects, but with some you have to stick with it and see if it settles down (unless you feel really awful, in which case a trip to the docs is in order). Resting also helps, and I never start a new med without support being in the house (my partner).”
Are there any side effects of lupus treatments I need to be aware of?
There are a very wide range of drugs used in the management of lupus. It is therefore not possible to cover everything in this article, but below we have highlighted a few important side effects from some of the medications most commonly prescribed for people with lupus;
Hydroxychloroquine is an antimalarial medication which is prescribed for most people with lupus as well as a number of other connective tissue diseases. It has a number of properties which make it useful in treating lupus and is widely considered one of (if not THE) safest treatment for the condition.
One of the most discussed side effects of this treatment is retinopathy, which can cause blurred vision, difficulty reading, intolerance of bright light, and sometimes episodes of flashes of light. Studies suggest that it probably occurs in around 1% to 7% of people who have taken the drug for more than five years and most cases resolve after stopping the medication. To reduce the risk of permanent impairment to vision people taking hydroxychloroquine are advised to have their eyes checked annually, including tests that are very sensitive for retina problems. You can get more information about the tests HERE.
Some people may experience adverse effects such as gastrointestinal upset, nausea or general ‘flare’ symptoms when they have hydroxychloroquine tablets produced by certain manufacturers. We are aware of a lot of anecdotal evidence from people with lupus who experience adverse effects from Quinoric® branded hydroxychloroquine tablets. This is not the experience of everyone, but if you would like to read more about this and how to potentially resolve the problem, please read our page HERE.
“It is important to have an eye test to check that your retina is healthy prior to starting hydroxychloroquine and to have an annual eye test whilst taking the tablets. When I started taking them, I experienced abdominal discomfort, diarrhoea and flatulence but please be reassured this will pass after about a month. Depending on what brand you are prescribed, some can be very bitter and I always take mine with yogurt; this helps to reduce bitterness.”
Non-steroidal anti-inflammatory drugs (NSAIDs)
These are the standard drugs used for joint pains such as ibuprofen or naproxen. Unfortunately these drugs are prone to cause indigestion. They may cause peptic ulcers and bleeding from the gut and may increase the risk of heart attacks and stroke if taken regularly for long periods of time (e.g. years).
Corticosteroids (e.g. prednisolone)
Steroids are potentially life-saving drugs for moderate and severe lupus but modern treatment is geared to reduce the dose as soon as possible so that patients can be maintained on a low dose or weaned off altogether. The side effects of high dose steroids long-term are well known and include weight gain and “moon” face, diabetes, infections, raised cholesterol, muscle weakness and bone softening (osteoporosis).
“I’ve taken very high doses of prednisolone. It is important to eat a healthy diet and check weight weekly. I found cutting down on salt and sugar helped to maintain my weight. It is wise to check blood pressure at least monthly and ensure the GP checks blood sugar levels too.”
Immunosuppressants (such as azathioprine, methotrexate, mycophenolate mofetil and cyclophosphamide)
These drugs are used to reduce the need for steroids to control moderate and severe lupus.
With the exception of azathioprine, none of these treatments are safe to use during pregnancy (due to risk of congenital abnormalities) or breast-feeding. You can read more about this in our booklet, ‘LUPUS: A Guide to Pregnancy’, HERE.
These treatments can possibly cause a reduction in your white blood cell count and increase risk of infections. You will usually have regular blood tests whilst on these treatments to monitor your white blood cell count and check for any toxicity caused by the drugs.
Cyclophosphamide also carries a risk of causing failure to the ovaries or sperm-producing cells, making patients infertile (unable to have children). Your consultant would outline this risk before beginning treatment to discuss the possibility of freezing ova or sperm if you wish.
Biologic infusions (such as rituximab and belimumab)
These drugs have been developed to target certain pathways in the immune system that are associated with inflammation and active lupus.
It is currently advised not to use these treatments during pregnancy or breastfeeding because their safety hasn’t been sufficiently investigated.
Whilst the drug is being administered into the vein, you may experience an ‘infusion reaction’. If this occurs you may notice that you start to shiver, develop a rash, start to wheeze, or develop swelling of the lips. It is not possible to predict who will experience this side effect. If these symptoms occur, then tell the nurse/doctor immediately. The infusion will be temporarily stopped and when your symptoms have settled, the treatment can usually be restarted at a slower rate.
How do I know if I am experiencing medication side effects, or if it is symptoms of lupus?
It can sometimes be difficult to tell whether a symptom you are experiencing is caused by a medication you are taking, by lupus, or by an associated condition. Due to the varied nature of lupus and the many symptoms it can potentially cause, there is often an overlap with the side effects listed on the PILs provided with your medication.
“It can sometimes be hard to know if it’s the drug, illness or infection causing problems.”
Some ways that you can possibly help to distinguish lupus symptoms from medication side effects is to consider;
- Have you recently started a new medication or changed the dose?
- Have you recently been exposed to any triggers that could cause your lupus to flare (such as UV light, stress or a viral infection)?
- Have any of your other lupus symptoms also flared-up when this new one developed?
It is generally best to make your doctor aware of any new symptoms or side effects that you may be experiencing, whether they may be caused by your medication or the condition.
You may wish to chat to other people with lupus who are on the same medication to see if they have had any similar experiences. A great place to do this is the LUPUS UK HealthUnlocked Community Forum. You can read more about the forum and how to join HERE. It is important to remember that everyone with lupus is different and the experiences of others may not reflect yours. Chatting with other members of the forum is not a substitute for advice from your medical team.
What should I do if I think I’m experiencing side effects from my treatment?
If you think that you may be having a serious allergic reaction to a medicine, phone 999 and ask for immediate medical help.
You should contact your GP or pharmacist immediately if:
- you think you have a side effect that is listed as severe in your medicine’s patient information leaflet (PIL).
- you have a side effect you think is serious.
If you ever get a side effect to a medicine, it is important to let your doctor know so that they can give you instructions on whether it is safe to continue taking the medicine or not. It is best not to determine how mild a side effect of a medicine is on your own. It is always better to contact your doctor for advice instead.
Never stop a medicine or change your dosage without your doctor’s approval. You need to take some medicines, like antibiotics, for a full course to avoid getting sick again. Others don’t work as well if you skip a dose, cut it in half, or take it with or without food. It can also be dangerous to stop certain treatments (such as steroids) suddenly.
When you talk to your doctor, have a list of all other medications or supplements you’re taking — both prescription and over-the-counter. Sometimes, side effects are caused by two or more drugs reacting negatively together. The LUPUS UK Progress Diary (which you can order HERE) includes pages to fill in your medication list. You can alternatively download and print these pages separately HERE. There are also a range of smartphone apps that have this feature – you can find examples of these in our article HERE.
“My tip for coping with drug side effects is talk to your GP about any concerns you have as a lot of pills can be changed or doses adjusted to help mitigate them! It’s a juggle of risk versus benefit for us all the time.”
“I always check with the pharmacist when I get a new prescription. I’d recommend going through all meds with a pharmacist every now and again, especially if you have quite a few, as that helped me get rid of stomach aches. Apparently I was taking things at the wrong time and some meds were interacting together and these meds were given to me by nurses at hospital!”
Some side effects go away over time as your body gets used to a new drug, so your doctor may recommend you stick with your current plan for a little longer. In other cases, you may be able to lower your dose, try a different drug, or add another one, like an anti-nausea medicine, to your routine.
“Methotrexate was not the medication for me! It is a good medication for many with lupus but it has made my symptoms worse! After an in-depth discussion with my rheumatologist it was agreed that the medication must be stopped. I’m awaiting another consultation with the doctor and other immunosuppressive drugs are being considered.”
Yellow Card Scheme
You can help the Medicines and Healthcare Regulatory Agency (MHRA) to monitor the safety of medicines by reporting any suspected side effects you experience to the Yellow Card Scheme. Reports can be made for all medicines including vaccines, blood factors and immunoglobulins, herbal medicines and homeopathic remedies, and all medical devices available on the UK market.
It is important for people to report problems experienced with medicines or medical devices as these are used to identify issues which might not have been previously known about. The MHRA will review the product if necessary, and take action to minimise risk and maximise benefit to the patients.
To learn more about the Yellow Card Scheme or to report a suspected side effect you have experienced, go to https://yellowcard.mhra.gov.uk/
Is there anything I can do to self-manage some of the side effects I experience?
Some medication side effects can potentially be avoided or relieved by things you can do yourself. Examples include;
Knowing how to take your medication(s) correctly
Some medications are best taken without food; some are better taken with food for better absorption. Some medicines should not be taken at the same time as other medicines. These instructions will often be included in the patient information leaflet provided with the medication. If you are taking lots of medications then it can be a helpful exercise to review this with your pharmacist and get their advice about the best way to take them all.
“I used to take mine all together but always ended up with stomach and sickness issues. I’ve now learnt to take half in the morning and the others in the evening. I also make sure I take them all after food.”
Making lifestyle changes
You may be able to prevent some side effects by avoiding alcohol or certain foods, or by making other small changes to your diet or lifestyle. Your doctor and/or the PIL will usually tell you if you need to avoid/limit any substances, including alcohol, for the duration of the treatment. If you are taking a medication which causes you to gain weight, you may have to pay more attention to your nutrition and exercise plan. You may have to add a supplement to reduce the risk of some side effects, such as taking calcium and vitamin D to reduce the risk of osteoporosis if you are on steroids.
Grapefruit juice affects how some medicines (such as cholesterol drugs and blood thinners) are changed (metabolised) in the body for eventual elimination, and can alter the amount of drug in your blood. Therefore, you may need to avoid grapefruit if you are taking one of these treatments. Read more about this and find which drugs are affected HERE.
“I am taking methotrexate and it started to make my skin flake. Nothing was working; I switched my body wash/lotion and nothing helped. I asked my mum and she said the only thing that helped for her (while going through chemo) was a product called Rainbath by Neutrogena. So I tried that, paired with the body oil and bam! It’s been working! No more flaky dry skin!”
Coping with nausea (sickness)
Try to eat small meals more often or suck on hard sweets. Staying hydrated is important and can also help. Herbal teas with peppermint, ginger or liquorice can help settle your stomach and may help with feelings of nausea.
Lots of advice for coping with nausea can be found HERE.
“I take my medication at night so I don’t experience the nausea.”
Coping with insomnia
Some treatments may affect your sleep pattern. Practicing good sleep hygiene such as avoiding caffeine and not looking at screens late at night may help towards returning to a normal routine. For more tips on sleep hygiene go HERE.
“My tip for steroids is taking them at breakfast as they are less likely to give you insomnia.”
Overcoming sexual dysfunction
Side effects such as sexual dysfunction tend to be temporary but can be distressing. Creative approaches to sexual intimacy can help you enjoy yourself and stay connected with your partner even while you continue your treatment. Consider sex therapy as a way to get some new ideas for sex. Learn more HERE.
Coping with hair loss
For information and advice about coping with hair loss, please take a look at our article HERE.
LUPUS and Medication
LUPUS UK’s Factsheet about the treatments used in the management of lupus.
electronic Medicines Compendium (eMC)
Up to date, approved and regulated prescribing and patient information for licensed medicines –
Arthritis Research UK – Drugs
Patient information about various drugs used in the management of arthritis and other musculoskeletal conditions
Find your local Pharmacist
Find local health services such as pharmacists using the NHS website.
***Please note that this article is written for informational purposes only and should not be a substitute for professional medical advice or treatment. Do not delay seeking or disregard medical advice based on information here. Always seek the advice of your local family physician or other qualified health professional before starting any new treatment or making any changes to existing treatment. It is also advisable to consult a medical professional before making any changes to diet or starting complementary remedies, which may interact with other medications.***
Thank you so much to everyone who submitted their tips and experiences for this month’s topic. We’re sorry if we weren’t able to use your comment in the article this time.