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Caffeine Intake and Lupus | Staying Alert

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Should you drink that brew? Coffee and other caffeine-containing foods are a mixed bag – both good and bad – for people with lupus.

Fatigue is a common symptom of lupus, and it can come along with brain fog and depression. These feelings of malaise and tiredness are some of the neuropsychiatric symptoms of lupus. You can read more about these symptoms here.

It’s also common to feel upset or sad about symptoms and the impact of lupus on your life. It is perfectly reasonable to reach for comforting foods and beverages. Some of these are just that – comforting and pleasant. Others provide a ‘rush’ of energy and good feelings.

Not all of these are good things for people with lupus, however. For example, sugared foods may appear to help with energy and mood. But, they actually increase inflammation and lead to flares. They also contribute to tooth decay. But what about that other popular stimulant – the much-loved caffeine?


What Is Caffeine?

Caffeine is a water-soluble chemical that is classed as a stimulant. Contrary to popular opinion, it does not give someone “more energy.” Instead, caffeine spurs the nervous system into a higher level of activity.

Caffeine readily crosses the blood brain barrier and is easily filtered by the kidneys. Technically speaking, caffeine is an adenosine inhibitor. It blocks the adenosine receptors on neurons and muscle cells. It also affects how calcium is used in the nervous and muscular system, and blocks benzodiazepine receptors. In short, caffeine increases one’s metabolism and nervous system activity. This pushes the brain – and the body – into a state of increased alertness resulting in a more positive, focused mood.

Many people use caffeine for this purpose, or for weight loss as the increased use of energy can help work off fat. Caffeine can also act as a diuretic (encourages urination).

In many Western countries, caffeine is easy to buy (and not just in the form of coffee or tea). It also works fast. It enters the bloodstream within an hour of being consumed and lasts for up to 7 hours. However, caffeine has a cost.

The body actively clears caffeine from its system. Once the caffeine is removed from the body, the nervous system has to recover from its increased activity. As a result, mood, energy levels, and alertness drops suddenly, a state known as a “crash.” Even for otherwise healthy people, this crash can come with the symptom known as “brain fog” and crankiness.


Intake, Consumption, and Sensitivity Levels

Different people have different sensitivity levels to caffeine, but it is generally safe.

Toxic levels of caffeine begin at 1 gram, with a lethal dose leveling out at 10 grams. Reaching that level would would take thousands of cups of coffee (100-200mg of caffeine per drink) or energy drinks (50-300mg) all consumed at the same moment. By the time someone was able to consume that much caffeine, it would have already been processed and excreted from the body (or thrown up! 🤮). However, caffeine can be administered in tablet or powder form. This is slightly more dangerous, though toxic doses or overdoses are still rare. Over-consumption can cause dangerous side effects, however:

As a part of its effects on metabolism, caffeine also increases heart rate. This can lead to cardiovascular risks and higher blood pressure. Rapid or abnormal heart rates, such as heart palpitations, are not uncommon. These problems can persist even after the crash.

Unsurprisingly caffeine intake can wreak havoc on one’s sleep schedule. Switching to decaf after lunch and not drinking coffee close to bedtime can help. But, some people are very sensitive to the effects of caffeine.


Side Effects of Caffeine

Here are a few other notable side effects of caffeine:

  • The diuretic effect can lead to dehydration, which can harm the kidneys. Avoid this by drinking lots of water.
  • Since it ramps up brain activity, it is not uncommon for people to feel anxious or stressed due to caffeine. This can effect both sleep and inflammation.
  • Caffeine increases acid secretion in the stomach, which can lead to heartburn and other gastrointestinal issues.
  • Caffeine is also an appetite suppressant

People build up a resistance to caffeine over time. Heavy users of caffeine need to consume more and more of it in order to gain the same level of alertness. Reducing or stopping coffee use without tapering down the amount can lead to caffeine withdrawal, which has many symptoms including malaise, headaches, and poor mood.

So, is caffeine all bad? It’s hard to say. Studies yielded mixed results.

Caffeine and Lupus: The Positives

Due to the way people commonly consume caffeine (plant-based beverages and high sugar foods) and study designs, studies on caffeine’s effect on SLE are mixed. A study in the Lupus Journal published July 2020 found that patients with low caffeine consumption had more severe disease. They tested 89 people with SLE and compared self-reported caffeine consumption (via a survey) with blood tests that assessed cytokine levels. Cytokines are important proteins in the immune system, both for ramping up and tamping down the immune system. While not a surefire way to test for lupus symptoms, the study also assessed their other symptoms. So it had a fairly accurate picture of these people’s diseases.

This study would seem to suggest that people with lupus could benefit from caffeine intake. But what part of the intake? The caffeine, or the coffee?

Caffeine itself may also have anti-inflammatory properties, according to some studies conducted on rats. Though whether it does this on its own, or by encouraging more exercise and physical activity is less certain. Coffee and tea, however, contain antioxidants and anti-inflammatory compounds. Other chemical compounds that affect the taste of coffee and tea can also change how caffeine interacts with the body. Coffee, in particular, has small amounts of magnesium and potassium, essential nutrients for human health. Not all teas contain these nutrients. It also includes compounds that interfere with the absorption of iron into the body, which can contribute to anemia.


Caffeine Substitutes for People with Lupus

For some people with lupus, cutting back on caffeine – or cutting it out entirely – may be the best way to go. But what do you do about the need for energy and mood boosts?

  • Herbal teas (without caffeine) can help make you feel more wakeful or less sick, depending on the tea.
  • Bone broth is a very good morning drink. When warmed up, it hits you with an aromatic liquid that is full of nutrients. The brain gets a little surge of energy and you end up taking in both water and nutrition.
  • Eating a diet that is right for you can work wonders on your energy levels! The AIP diet is one such diet, and is designed to be both nutritious and anti-inflammatory. You may have other nutrient needs, however, so check with your doctor or a nutritionist before making any big changes.
  • Exercising releases endorphins, which are natural painkillers, into your body. These endorphins also improve mood. Exercising increases energy levels, improves focus, and aids in sleep. It also helps with many of the risk factors of lupus and can keep a flare at bay. Read more here to learn some good exercises that you can do even when fatigued or in pain.
  • Sleep is very important for improving energy levels, reducing fatigue, and mitigating many of the symptoms of lupus. It’s also just a good thing to have in general! You can read more about sleep and lupus here. Sleep problems are common for people with lupus, both “too much” and “too little”. Sleeping and waking at set times, and not eating too much (or too little,) near bedtime can help. As well as exercising regularly, turning off bright lights, and avoiding caffeine and alcohol.

These are just a few of the alternatives to caffeine! Try them out as you begin to cut back, and make your transition seamless.


A Lupus Warrior’s Takeaway

So, is caffeine good for your lupus? Should you drink coffee or take caffeine pills to fight fatigue? It’s complicated – if you are taking caffeine or thinking about quitting, definitely consult your doctor or treatment team.

A good rule of thumb may be that, if you have kidney problems, cardiovascular disease, are suffering from high levels of stress or anxiety, you should cut back or stop your caffeine intake. If you are having trouble sleeping, this is also something to think about.

Otherwise, it is up to the individual and their needs!

Comments (5)

5 thoughts on “Caffeine Intake and Lupus | Staying Alert

  1. I definitely do better without coffee. The little bit of caffeine that’s in green tea is more my speed. But I just really really LIKE coffee!

  2. I feel way better with the caffeine . If I don’t have my caffeine I get super tired after only. Ring for about 2 hours and find it very hard to function. With caffeine I can make it a full day at work plus still do my chores at home .

  3. I drink one mugful first thing in the morning by myself in bed (my husband wakes before me). I open the shades to let light in and find that this combination is a nice way to wake up. I do have high blood pressure and kidney disease so I take BP medication. I cannot have anymore caffeine the rest of the day or it affects my blood pressure, sleep and sometimes even makes me feel ill. I have learned to switch to herbal teas, both hot and cold depending on the time of year. If my blood pressure lowers enough to go off pills, I imagine that I will have to give up my coffee ritual and replace it with something else. I read a suggestion to drink a glass of lemon water before having coffee in the morning. I’m going to give that a try because I do tend to not hydrate myself with enough water during the day. This will give me a jump start.

  4. Hi, I’ve had Lupus for many years-diagnosed officially 10 years ago
    but living with it undiagnosed for at least5 to 6 years before that.
    I’ve been a tea drinker my whole life, up until two years ago at 51
    started to drink coffee once in a great while. However, much more
    recently, this year in fact, I discovered that drinking coffee daily (almost 1 cup)
    actually helps my inflammation and pain I have lived with daily. Although I
    don’t love the coffee, because it does help decrease my pain, I have grown
    to including it in my lifestyle to help navigate my health challenges. For
    someone like myself who doesn’t take prescription meds for my lupus
    (or the other 4 autoimmune disorders I have) this is an added and very
    unexpected bonus to helping me along my health journey.

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