The treatment of lupus is complex and as a result there are many different medications used in the management of the disease, its symptoms, and drug side effects. A person with lupus is likely to experience several different treatment regimens during their lifetime.
Why have I been prescribed this treatment?
The types of drugs prescribed for patients with lupus can be broadly divided into those that treat the disease itself by dampening down inflammation, known as disease-modifying drugs and/or immunosuppressants (e.g. hydroxychloroquine, mycophenolate, azathioprine and prednisolone) and those that are used to treat the other problems that are sometimes associated with lupus (e.g. tablets for high blood pressure, osteoporosis, high cholesterol and tablets to thin the blood in patients with antiphospholipid syndrome (“sticky blood”) as part of their lupus). You can learn more about medications used in lupus in our factsheet, “LUPUS and Medication” HERE.
Your doctor will choose therapies based on their own personal training and experience. Not all therapies work the same in everyone, so sometimes a trial-and-error approach to different medications may be needed before the best combination is found. For example, one person who has lupus may respond completely to taking only hydroxychloroquine, while another may fail numerous trials of medicines before the best therapy is found. Unfortunately some people respond very poorly to most or all medicines, but this is uncommon.
“Know there is a chance it might not work and will need to be changed at some point.”
“Please do not read or listen to scary stories about medications and side effects as they are extremely rare or exaggerated. What may be of benefit to one lupus patient may not suit another. We are all different! Sometimes it can take a while to find an optimum drug regime to reduce our unpleasant symptoms.”
Generally, when doctors evaluate people who have lupus, they note the different symptoms it is causing and try to identify which is the most severe problem. They will also try to determine if any of the individual problems may require different therapies. Since everyone who has lupus is different, every treatment decision is also different.
“I’m afraid lupus treatments aren’t a one size fits all! Sadly the lupus journey is a long journey of discovery and every lupus patient presents differently. I wish anyone at the start of their journey, good luck and go with the flow.”
It is a normal reaction to be concerned about taking so many medications, especially if you have never been on any medications at all previously. Sometimes different individual problems caused by lupus must be treated using different medications. Sometimes doctors must also use additional medications to prevent or treat side effects of certain drugs. If you understand the reasoning for having so many medications, it can make it easier to accept the treatment plan.
“When considering or prescribed a new medication, your consultant and nurse specialist will talk about side effects, risks and other relevant aspects and when to report them; the specialist will go over a checklist when counselling you to ensure you understand and will answer relevant questions. Most Rheumatology/Lupus Units will have an advice line to answer questions about medications and possible side effects.”
If you are unsure why you have been prescribed a particular medication it can be helpful to ask your doctor to explain it for you. If you don’t manage to do this during your appointment, you could alternatively ask your local pharmacist (find yours HERE), read the patient information leaflet (PIL) provided with the medication, or look at a reliable source of information online (such as NHS Choices or Arthritis Research UK).
“When starting a new treatment, it is important to read the relevant drug medication leaflets. There are some excellent information sheets regarding the different drugs used for lupus and related conditions produced by Arthritis Research UK.”
“Don’t Google lupus…you always find the worst things. Contact LUPUS UK for booklets to help. Ask the experts questions. Everyone is different, everyone suffers differently.”
Things to consider when starting a new medication
Read the patient information leaflet (PIL)
It is very important to understand how to take your medication and the potential side effects it could cause. 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 give guidance on how best to take it as well as listing its known side effects and interactions. If you no longer have your medicine’s PIL, you can find a copy on the electronic Medicines Compendium (eMC).
“Ask lots of questions – don’t be afraid to. If you are not happy with the suggestion then don’t be afraid to say no. You are taking it after all and a good doctor will listen and help. Don’t believe all the side effects. They have to write them down but they don’t all apply to you.”
Check the best time for your dose(s) and stick to it
Some medications will specify a time of day to take them so that they can be as effective as possible, or to avoid some side effects. Your doctor or pharmacist may also give additional instructions about the timing of your medications to ensure you avoid any undesirable interactions between them.
It is best to try and schedule your dose for a convenient time when you will be able to take it predictably. Being able to take your medication consistently will help to ensure it is as effective as possible in controlling your symptoms.
If you have trouble remembering when to take your medication there are some helpful applications for smartphones and tablets which can remind you. You can find some examples of these in our article HERE.
“Take your medication every single day. I learnt by making mistakes; when I was well I did not take mine. You’re the CEO of your own body – make wise decisions, only you can know what you need. Take control and feel empowered.”
“If something’s not working, go back and see your consultant, don’t let it drift on, as our bodies often don’t behave how doctors predict”
Check for any possible interactions with other treatments you are taking
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 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!”
Start the medication when it can have the smallest impact on your routine
Some medications can potentially cause side effects that could have an impact on your daily life, especially when you first start them. It can be a good idea to start a new medication when you may have a couple of days off work (such as at the start of a weekend) and to avoid starting it just before any exciting plans you may have. Of course, this can be dependent upon the type of medication you are starting and the advice from your doctor.
“If you’re working, I’d start new medication over a weekend. It helped me to get to grips with any immediate side effects, especially with things like azathioprine and methotrexate. Don’t be afraid to say no if trying something doesn’t feel right. Listen to your gut instinct.”
“Don’t start just before an important event. Things generally upset your whole metabolism for a few days/weeks; with me it’s irritable/unpredictable bowel.”
Keep a diary of your symptoms/side effects
It can be a helpful exercise to keep a diary of the symptoms and side effects you may experience. When starting a new treatment it could help you identify any increases in symptoms such as headaches, nausea, diarrhoea, constipation etc.
“When one of my new medications (I’d trialled for six months) was causing some odd side effects, I kept a diary and photographic evidence to show the consultant. The medication was withdrawn.”
Be patient when waiting for improvements
When starting a new medication, it’s important to remember that it can take some time before you begin feeling better. Many of the disease-modifying drugs and immunosuppressants can take weeks or even months before reaching their optimal level – and for you to experience the full benefits.
“When starting a new medication I wouldn’t expect immediate results. Some can take a number of weeks to feel the benefit. Also, like lupus is not a one size fits all problem, the medication is the same. There are lots of different medications available so don’t be disheartened if the first one doesn’t help.”
Ensure you arrange your next prescription with plenty of time
This is especially important if you need have a follow-up appointment with your doctor to get the next prescription, because it can sometimes take a couple of weeks to get one booked. You don’t want to run out of doses and start to withdraw as a result.
What should I do if I experience side effects?
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 develop a side effect after starting a new medicine, it is important to let your doctor know so that they can give you instructions on whether it is safe to continue the course of treatment 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.”
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.
For more information and advice about coping with side effects from medications, please take a look at our article HERE.
***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.