What is bone broth?

Bone broth is a liquid made from brewed bones and connective tissue. It can be made from the bones of cows, chicken, and even fish. To make the broth, bones are simmered with water and a bit of vinegar. The vinegar (plus the long simmering time) helps the bones release their nutrients.

Bone, and in particular bone marrow, are rich in a range of vitamins and nutrients. For example:

• calcium
• magnesium
• phosphorous
• iron
• vitamins A and K
• zinc
• selenium
• manganese

Additionally, cooking collagen turns it into gelatin, which is a source of amino acids. Amino acids are the building blocks of proteins.

A go-to recipe

You can buy bone broth at the grocer store (check next to the other broths)! But, it’s also possible to make your own at home. If you have a pressure cooker, like the Instant Pot, or a slow cooker, it can be super easy. However, it’s also possible to simmer it on the stove.

This recipe and tips from Wholefully can help with the process and even shows some troubleshooting tips. At a high level, the process is:

1. Bake the bones for ~30 minutes or until golden brown
2. Put the bones, apple cider vinegar, and some hearty vegetables (carrots, onions, celery) in a pot. Cover with water
3. Simmer or use the pressure cooking features
4. Strain

Has science found a link between the winter and lupus symptoms?

TL;DR: No

Few scientific studies measured the effects of cold temperatures on lupus symptoms. One of the better studies examined was published in the International Journal of Chronic Diseases in 2014 by Squance, M.L., et al. It didn’t find scientific proof of a connection but believes more studies are required.

“more directed studies are required to investigate and establish lupus flare and temperature change associations.”

Really? What about a scientific link between winter and rheumatoid arthritis?

TL;DR: Sort-of

You might have heard the classic truism: “Cold and wet is bad, warm and dry is good for RA.”

While there is scientific proof humidity has an impact on the symptoms of RA, scientists haven’t found a clear link between symptoms of rheumatoid arthritis and cold temperatures.

What can I do to tackle lupus brain fog?

Engage Your Care Team    

If there is one thing that we know about lupus, it is that it affects people differently. While there are medications that target brain fog, it could take time for you and your doctor to find the strategy or dose that works for you. Sometimes these medications will target treating the underlying lupus and other times it will target an associated problem such as depression or anxiety.

Make sure to partner with your doctor to get it right. That means being honest with your care team, tracking your symptoms, and taking your medications. Having a good rapport with your physicians and making sure they know your objectives and concerns is vital to battling lupus.

Workout Your Mind

Challenging your mind can help keep your mental health at its peak. Fortunately, it has never been easier or more fun to “train your brain.” There are hundreds of apps and online games that you can play to give yourself a cognitive challenge, from simple puzzles to more complicated mental agility tests. Rather not spend more time in front of a screen? Try to get into the habit of doing a Sudoku or your paper’s crossword.

Use Reminders and Apps

If you are experiencing lupus brain fog, you can use your smartphone as a powerful coping tool. You can use it to set alarm reminders, create lists, text someone your plans so they can help you remember, and take lots of notes. Of course, you can always go the less digital route and make lots of sticky notes.

Build the Right Emotional Environment

Regardless of what you do to tackle lupus brain fog, you should make sure you have a supportive environment both at home and work. While it can be easy to get frustrated when friends or family don’t understand, you can try forgiving them. You can also try forgiving yourself by reminding yourself, it’s not your fault.

Why are so many people talking about probiotics for lupus?

If you look all across the web, from message boards to articles, it can seem like everyone is pitching a new natural remedy for lupus. One of the latest trends in holistic medicine is probiotics.

They recently made big news in lupus after research was published that suggested that probiotics could help reduce kidney inflammation in females with lupus.

While it can be tempting to try holistic remedies, especially if your current treatment isn’t working, it is always important to do your research and bring up any treatment and/or diet changes with your lupus treatment team first.

What are other Lupus Warriors saying about probiotics?

LupusCorner conducted a survey of people with lupus to better understand the value of diet changes and supplements. The survey has been taken by 792 people.

Results: Of the 442 people with lupus that have used supplements to battle lupus, 25% have tried probiotics. And, 75% of people that used probiotics found them valuable.

You can see the complete results and add your own experiences here:

What does the research say about probiotics for lupus?

There has been limited research conducted on the effectiveness of probiotics for managing lupus in humans. However, a study was recently published exploring their value in mice with lupus nephritis.

A study recently published in the journal Microbiome explored the impact of adding lactobacillus, a probiotic found in yogurt, to the diets of mice with lupus nephritis. The study found that the probiotics led to improvement in kidney function and increased survival for female mice and males who had been castrated. Interestingly, no improvement was found in male mice with fully functioning sex organs — suggesting an interaction between sex hormones and gut microbiota.

Future studies, and future studies in humans, are needed to further explore these potential benefits.

How can I add probiotics to my diet?

An easy way to add probiotics to your diet is with yogurt. One thing to consider: Not all yogurt is created equally. Brands with fruit or fruit flavoring can have a lot of added sugar, which can have a negative impact.

Be sure to bring up any diet or treatment options with your doctor before making any major changes as they may be aware of alternative treatments or potential interaction effects.

Is self-injectable Benlysta a game-changer?

According to our poll about 5% of our community has tried the IV form of Benlysta. These patients now have a new option, and other patients considering the drug before, might be more open to a medication they can take at home. But does that make it a game changer?

How will self-injectable Benlysta work?

After training from their health care provider, patients will be able to administer the medicine as a once weekly injection of 200mg, from either a single-dose pre-filled syringe or from a single-dose autoinjector.

When will self-injectable Benlysta be available?

GSK hopes it will be available in specialty pharmacies in the US in late August 2017.

Is self-injectable Benlysta effective and safe?

The approval was based on an 836-person clinical trial. 556 patients were given weekly subcutaneous (SC) belimumab 200mg for 52 weeks and compared 280 patients that were given a placebo for the same time frame.

At week 52, the two groups were measured on 3 metrics. The main metric, called the primary endpoint, was the SLE Responder Index (SRI4), which is a complex measure of disease activity. The other two metrics, called secondary endpoints, were reduction in corticosteroid dosage and time to severe flare.

The study concluded: “In patients with moderate-to-severe SLE, weekly SC doses of belimumab 200 mg plus standard SLE therapy significantly improved their SRI4 response, decreased severe disease flares as compared with placebo, and had a safety profile similar to placebo plus standard SLE therapy.”  

You can see all the details and data from the study here.

Results

Click below to see the results of the survey in real time.

As more people complete the survey we will use analytics to extract community insights from the data and share them in the section below.

Community Insights

Coming soon!

In order to protect the privacy of our community, we will not display community insights until over 100 people have completed the supplements poll. Don’t worry, it shouldn’t be more than a few days.

In the meantime, fill out the survey and share your experiences, explore our other content, or send an email to hello@lupuscorner.com with suggestions for other polls, surveys or content you would like to see!

What does the research say about the benefits of fish oil for lupus?

A 2015 study evaluated fish oil’s impact on:

• fatigue
• quality of life
• lupus (SLE) disease activity

To begin, 50 patients took one of the following treatments:

1. A daily fish oil supplement (Metagenics)
   • comprised of six capsules/day equaling 2.25g EPA and 2.25g DHA,
2. A visually identical olive oil capsules (to account for the placebo effect)

After 6 months, each researchers measured how the above factors changed. Finally, the study concluded that the group that took the marine oil supplements showed statically significant improvement on key indicators compared to the group taking the olive oil supplements.

Potential risks

Marine oils have few risks associated with them. This 1991 study found “no major side effects.” Note: This study also used a low-fat diet in conjunction with the dietary supplements.

Minor side effects occur for some people. For example:

• belching
• bad breath
• heartburn
• nausea
• loose stools
• rashes
• nosebleeds

What does the research say about turmeric for lupus?

According to this study of studies, Curcumin (a compound found in turmeric) has been demonstrated to be safe in six human trials and has demonstrated anti-inflammatory activity. Research specific to turmeric for lupus has been done on patients with lupus nephritis. This study of 24 people, concluded that “short-term turmeric supplementation can decrease proteinuria, hematuria, and systolic blood pressure in patients suffering from relapsing or refractory lupus nephritis.”

Overall, while there is some evidence that turmeric can help with lupus symptoms, the research is far from conclusive.

How can I try turmeric?

It is important to talk to your doctor before trying anything for lupus. If you and your doctor agree to try turmeric you have a couple different options. One way is by taking a pill, which you can purchase online or at your local pharmacy. Another popular way is to add turmeric to your tea or coffee

*Image via Coffee Reviews

Simple ginger-turmeric tea:

boiling water  |  1 cup
fresh turmeric root, grated (1/3 tsp. if using dried)  |  1 tsp.
fresh ginger root, grated (1/3 tsp. if using dried)   |   1 tsp.
Honey to taste
Fresh lemon wedge

You can also add a little bit of turmeric, cinnamon & ginger to your coffee with creamer for a chai-like taste

Apps that measure and track sleep

Sleep Cycle (iOS). Sleep Cycle uses the microphone on your smartphone to analyze your sleep. It uses that data to determine the perfect time to wake you up. This helps  you feel more rested and relaxed (according to their website).

More importantly, it gives you a measure of your sleep quality. So what’s keeping you awake? Was it  dinner with the in-laws or a new medication?

SleepBot – Available for iOS or Android. SleepBot offers:

• tracking
• soothing sounds
• smart wake up capabilities
• great charts and graphs to help you find trends

It also lets you export all your data so you can bring your journal with you to the doctor.

Gadgets that measure and track sleep

If you really want to get serious about tracking and measuring your sleep, check out these advanced sleep tracking gadgets. However, they are more expensive

Beddit – For $150, you get a thin device that goes under your sheets. Beddit measures your sleep quality, heart rate, breathing, and snoring. Best part: Set it and forget it. Nothing to remember at night!

Withings Aura – For $300, you get everything that comes with the Beddit but you also get a color-changing light and speaker. This allows the Aura to create a simulated sunrise for a gradual wake up which they claim “leaves you feeling energized and refreshed.”

The best part. It connects to Spotify, which means you can stream your favorite playlists or listen to wake-up programs.

Okay, I am tracking… Now What?

Most of the apps and devices come with recommendation engines. So, while you are tracking, you will be given suggestions on other ways to improve your sleep hygiene.

Here are a few other things you can try:

Eye Mask and Ear Plugs. One of the best ways to get a good night sleep and fend off fatigue and lupus flares is to invest in an eye mask and some ear plugs. Light and noise make it harder to fall asleep and stay asleep. While it might take a little time to get used to, and it might seem like an overly simple solution, eye masks and ear plugs can make a world of a difference.

Don’t lie awake in bed. Thinking about not being able to sleep can actually make it harder to fall asleep. Instead of staying in bed and getting anxious, consider:

• reading a book
• practicing meditation/mindfulness
• getting another (quiet) chore done

But, be sure to avoid blue light (smartphone/tv screens) as it can make getting to bed harder.

Create a bedtime routine. This is a lot easier said than done, but can make a huge difference. The apps and devices above can also make sure you are sticking to it. Try going to bed at the same time everyday and waking up at the same time everyday (yup, even the weekends). Do the same relaxing activity before you go to sleep. Read 30 pages of a book or take a warm bath. This is signal to your body it’s time to wind down. A warm bath can also go a long way to help the pain.

Talk to your doctor. If nothing is working, make sure to have an open and honest conversation with your doctor. Sleeping aids like melatonin can have a negative impact for people with autoimmune conditions, so it’s important to work with your doctor to find a treatment plan that is best for you.