The bad news is there is currently no cure for Lupus. Treatment comes in the form of ‘self management’, rest, staying out of the sun, avoiding stress and knocking back an appetising assortment of different medications.
Your doctor should develop a treatment plan to fit around your specific symptoms and needs. The aim of this plan is to try to prevent flares from happening, treat the flares when they inevitably occur and reduce organ damage. Your treatment plan will need to be reviewed and modified on a regular basis to ensure it’s still helping, so it’s important you report any new symptoms so these can be taken into account.
Aside from learning to ‘pace yourself’ and ‘take it easy’ (which really isn’t as easy as it sounds), treating Lupus generally involves copious amounts of drugs. There are pills to prevent or reduce flares, pills to reduce swelling and pain, pills to help or suppress the immune system, pills to reduce or prevent damage to joints and pills to balance the hormones.
You may well reach a point where you start to rattle.
The most commonly used medications range from the over-the-counter Non-steroidal anti-inflammatory drugs (NSAIDs), to the rather more alarming ‘chemo’ drugs called immunosuppressants. Hydroxychloroquine and corticosteroids are also a staple for those with Lupus.
Before we crack on with the drugs, let’s take a quick side step and talk sun..
How to survive in the sun
Firstly, don’t panic, having Lupus doesn’t automatically mean you’ll spend the rest of your life living as a vampire. It does however mean you need to be a LOT more careful – no more dousing yourself in tanning oil and laying out on the beaches till you sizzle.
Some (but not all) people with Lupus can be very sensitive to sunlight; this is called photosensitivity. Exposure to sunlight can make symptoms (such as rashes) much worse. It can also bring on a ‘flare up’ and make you feel downright grotty. In my case, being out in the hot sun can sometimes bring on flu-like symptoms that can knock me out for days.
If you’re one such photosensitive Lupie, the answer is to PROTECT yourself. This means covering your skin as much as possible, wearing a wide-brimmed hat and sunglasses.
Going without sun cream is really NOT an option. A high SPF of 50+ is probably advisable. Thank heavens there are now plenty of creams out there that won’t make you look like a geisha, create an oil slick or block every single pore in your skin.
The problem with avoiding the sun completely is that sunlight helps your body to produce vitamin D, something which you need to keep your bones and teeth healthy, and to help you avoid getting osteoporosis (weakened bones).
The good news is you only have to be out in the sun for a short period of time. The trick is to have your forearms, hands or lower legs uncovered and without sunscreen for about 10 to 15 minutes (for most lighter-skinned people, longer for darker skins), with the optimum time for your vitamin D hit being from 11am to 3pm during March to October. Specific, I know! In the winter, sunlight hasn’t got enough UVB radiation to produce vitamin D, so during these months we get it from our body’s stores and food sources.
If you’re one of the really photosensitive types however and you can’t go out in it at all, the answer is to make sure you eat plenty of vitamin D rich foods, such as oily fish, eggs and fortified fat spreads and breakfast cereals. Your doctor might advise you take vitamin D supplements as well.
OK, so now let’s get on with the pill popping; I’ll start at the beginning and work my way through:
Non-steroidal anti-inflammatory drugs (NSAIDs)
Non-steroidal anti-inflammatory drugs (NSAIDs) are a common pain killing medication that help with joint or muscle pain and inflammation in the body. Chances are you already have some NSAIDs (such as ibuprofen) knocking around in your kitchen cupboard of drawer. If however these don’t even touch the sides of the pain, your GP can prescribe you something stronger. The main types of NSAIDs are naproxen, diclofenac, celecoxib, mefenamic acid, etoricoxib, indometacin and high-dose aspirin.
The problem with taking NSAIDs over a long period of time is that they can cause damage to your stomach lining. You will need to be monitored by your GP, and, if necessary, prescribed an additional medication called a proton pump inhibitor (PPI) to protect your stomach.
Another thing to bear in mind is that some NSAIDs can react unpredictably with other medications, either affecting how well they do their job or increasing the risk of their side effects. Always check with your doctor if you’re already taking other NSAIDs, low-dose aspirin, warfarin, ciclosporin, diuretics, lithium, methotrexate or a type of antidepressant medicine called a selective serotonin reuptake inhibitor (SSRI)
Hydroxychloroquine is a type of disease-modifying anti-rheumatic drug (DMARD) that is effective in treating some of the symptoms of SLE, such as rashes, joint and muscle pain, and fatigue as well as helping to prevent the development of more serious problems. This particular drug is taken in tablet form, but don’t worry, they’re normally small and easy to swallow).
Hydroxychloroquine works by regulating the activity of the immune system, which may be overactive in conditions such as Lupus (SLE). Rather than simply treating the symptoms, it tries to battle and modify the underlying disease process.
This seems to be the long-term, go-to drug of choice for most people with Lupus (SLE) as it can be used in alongside other drugs, such as methotrexate (see below). A degree of patience and perseverance is required when you first start Hydroxychloroquine as it may be as long as 12 weeks before you notice any benefits at all.
You may have heard about Hydroxychloroquine being an antimalarial drug. This means it is a medicine that has also been used to treat malaria. Sadly taking this drug doesn’t keep you safe from pesky mosquito bites, or stop you catching malaria itself. Wouldn’t that have been a nice little perk!As with every drug there are some possible side effects – indigestion, diarrhoea, headaches and rashes, although these are uncommon. And yes , having a rash as a side effect of a drug that is used to treat rashes, does seem a little unfair! A more serious side effect (in a small number of people) is eye damage. Regular check ups at your opticians are required to keep an ‘eye’ on things. Try and find a good optician who is at least aware of disease-modifying drugs and what they can do.
On the subject of eyes, Hydroxychloroquine won’t usually be prescribed if you have existing maculopathy (problems with the central part of the retina).
Hydroxychloroquine can be taken during pregnancy and during breastfeeding, but as ever, talk to your doctor about this if you’re planning on popping out a sprog.
To clear up any possible confusion: steroids used for autoimmune diseases are not the same as the anabolic steroids used by bodybuilders, weightlifters and rule-breaking athletes. The use of this drug will not help to secure you a place in the German Olympic shot put team, or put you on the blocks next to Usain Bolt in 100m sprint.
Corticosteroids (also known as glucocorticoids, cortisone or steroids) are however very effective in treating symptoms of SLE, as they lessen the immune system’s response, and in doing so, help to reduce the swelling, warmth, tenderness and pain that comes from inflammation.
Here’s the sciency bit: Corticosteroids are synthetic (man-made) drugs that are designed to work like the body’s naturally occurring hormones produced by the adrenal glands, in particular cortisol. Hormones are the body’s chemical messengers that regulate most of the body’s functions. Cortisol helps regulate blood pressure and the immune system and it is the body’s most potent anti-inflammatory hormone.
The most commonly prescribed steroid for Lupus is Prednisone. Prednisolone and methylprednisolone (Medrol®) are similar to prednisone, and often prescribed if you have liver problems.
Corticosteroids are usually taken daily in pill form, but liquid steroids can also be injected directly into muscles or joints. Topical creams or gels are often used to treat cutaneous (skin) lupus. If you’re experiencing a really bad flare-up, or the inflammation, pain or exhaustion is out of control, a nice, big dose of injectable corticosteroids can be just the ticket. They can bring things back under control and leave you feeling an awful lot better in a very short space of time – and the beneficial effects can be felt for quite a few weeks. These ‘pulse steroids’ are sometimes prescribed to control a Lupus flare or for people who cannot tolerate steroids in pill form.
I’ve had a few encounters with such corticosteroids treatments, and they’ve always worked well for me. Twice I’ve had them (by way of an injection into my bum) when the fatigue got out of control, and twice I’ve had them in both hips (by way of an ENORMOUS, ultra sound guided needle) when the inflammation and fluid build-up made walking very far a painful impossibility.
With all things that help there’s always a catch, and in this instance it is that high doses, overuse or long-term use of corticosteroids come at a price. Side effects can include thinning of your bones and skin, weight gain and high blood pressure. In my experience doctors seem understandably reluctant to hand over the goods. In fact I’ve had to weep, wail and prostrate myself across my rheumatologist’s desk just to get a shot.
All of this said, corticosteroids are a safe and effective form of treatment, as long as they are provided under the care of your cautious doctor and the lowest effective dosage is given to minimise side effects while still effectively controlling the condition.
Immunosuppressants are the big guns – the treatment that people (me included) get into a panic about. These are the chemotherapy (a word that fills most with fear) drugs that work by suppressing your immune system.
It took me a while to get my head around this one, but here’s how I think it all works: Lupus by nature is all about having an over active immune system; a system that has far too much time and energy on its hands and therefore goes out to systematically attack healthy parts of your own body. By suppressing your immune system with these drugs, the Lupus itself is calmed or dampened down. This in turn stops your immune system going into full attack mode and thus limits the damage. It’s a bit of a simplistic explanation I know, but does that make sense? It did in my head at least!
Commonly prescribed immunosuppressant medicines include azathioprine, methotrexate, mycophenolate mofetil and cyclophosphamide. They are often used alongside Hydroxychloroquine, and when used with corticosteroids because combined they are more effective at easing symptoms. Using immunosuppressants can also allow the dosage of corticosteroids to be reduced.
Immunosuppressant medication is pretty powerful stuff, so it’ll come as no great surprise to you that they come with a long list of side effects. These can include loss of appetite, vomiting, diarrhoea, swollen gums, bruising or bleeding more easily, headache, acne, extra hair growth, weight gain and liver damage. Oh dear god, you may be thinking, that does not sound pleasant. You may also be wondering how on earth it’s possible to gain weight when you’ve lost your appetite and are losing it from both ends…
There is one side effect that is too important to stick on the end of a list; it deserves an entire paragraph all to itself.
Taking immunosuppressant medication can massively increase your risk of developing an infection. The very job of the drug is to suppresses your immune system, so while this helps to keep the Lupus in check, it also means your body is no longer going to be fighting off every germ, infection and virus that comes a knocking. This can become a major issue as otherwise manageable infections can very quickly become life-threatening, resulting in organ damage.
To make things trickier still, symptoms of infection can mirror that of a flare up. So to play it absolutely safe, if you experience a fever, a cough or breathlessness, burning when passing urine or passing blood in your urine or diarrhoea, you need to contact your GP quick smart. I’ve personally never had as many home calls from my doctor as when my blood results were out of whack and my body was ripe for infection.
It’s also helpful to try to avoid sick and infectious people, especially those with chickenpox and measles. This is easier said than done, especially if you have children or visiting friends with small kids. Speaking of kids, if you’re thinking of getting pregnant then some of the immunosuppressant meds (namely methotrexate, mycophenolate mofetil and cyclophosphamide) are not the drugs for you; azathioprine would be a safer way to go.
Some people get nausea or feel pretty terrible when they first start taking immuniosuppressants, and it can take a while for the benefits to kick in. I think they say give it three months at least, though it can take six months to a year to get the full effects.
You read my all about my progress with azathioprine here.
Rituximab is a new drug to the scene that was also originally used to treat some forms of cancer. While not currently licensed for treating Lupus in the UK, Rituximab can be used in severe cases where other treatments haven’t worked.
Given as an infusion (injected into your veins), Rituximab locks on to and kills ‘B-cell’ – the cells which produce antibodies responsible for the symptoms of SLE
There are still some uncertainties about how effective or safe Rituximab is in treating SLE. Side effects include flu-like symptoms, such as chills and a high temperature, dizziness and vomiting. It can also cause a more serious allergy-like reaction during or shortly after the treatment, so you’ll be monitored closely.
Belimumab is a similar medication for those whom other treatments didn’t work.
It is also given as an infusion (injected into your veins), and it works by binding to growth factors that are needed for the survival of B-cells. The first three doses are given 14 days apart, and the medication is usually given once a month thereafter.
Unlike Rituximab, Belimumab is licensed for treating SLE in the UK, but there are still some uncertainties about how effective or safe it is in treating SLE. Side effects include flu-like symptoms, such as chills and a high temperature, nausea and diarrhoea, headaches, insomnia, a cough, sore throat and blocked or runny nose, joint pain, an increased risk of infections and changes in blood pressure. It can also cause a more serious allergy-like reaction during or shortly after the treatment, so you’ll be monitored closely.
Please Note: I have tried to make all the information above as comprehensive and accurate as possible, but please remember folks, I’m a patient (with brain fog) not a doctor. So if in doubt, please ask someone with a medical diploma and letters after their name!