brett – LupusCorner

Measuring Lupus Disease Activity Over Time

brett — Mon, 10 Apr 2023 06:04:11 +0000

Some say that the only thing constant is change. This can feel especially true for Lupus Warriors. Despite the value of tracking disease activity, measuring lupus disease activity remains a challenge.

Accurate, reliable measurements of disease activity are a crucial element of healthcare and research. Identifying changes in lupus disease activity can help people with lupus and their clinicians:

Identify baseline levels of lupus involvement
Evaluate effectiveness of treatments
Develop optimal treatment roadmaps
Discuss care decisions and participate in Shared Decision Making
Track lupus over time

Researchers have worked to develop scales or laboratory tests for lupus but there are two main challenges:

The complicated, multi-system nature of lupus and the presence of flares
There is no “gold standard” and many scales are based on physician visual rating scales
- Many scales are based on physician visual analog scales which include some level of bias due to variance in physician experience and opinion

Measuring lupus

Lupus can impact systems throughout the body, from the gastrointestinal tract to the skin. Many symptoms may not be easily seen or felt, such as kidney damage. And, the symptoms that are apparent may be hard to measure, like fatigue and pain.

Measures of lupus try to account for the elements that are indicative of future disease progression and give an accurate picture of the current lupus status. They are what is used as endpoints for clinical trials. The Outcome Measures Rheumatology group and the US Food and Drug Administration (FDA) recommend a rating scale that assesses 4 elements:

Disease activity
Cumulative organ damage
Health-related quality of life (QOL)
Adverse events

Lupus disease activity – measurement strategies

There are two main types of lupus activity measures: global score systems and individual organ/system involvement scales. As you would expect from the name, global score systems attempt to provide an overall assessment of lupus functioning. Examples of these scales are the Systemic Lupus Erythematosus Disease Activity Index (SLEDAI) and the Systemic Lupus Activity Measure (SLAM). In contrast, the British Isles Lupus Assessment Group Index (BILAG) provides breakdowns of the individual systems.

This is not an exhaustive list of measurement tools. For a full list and breakdown of the benefits and challenges with each (and clinical studies that used the different methods), check out this review.

The SLEDAI, SLAM, and BILAG measures correlate with one another. Additionally, they have been updated overtime to reflect more nuance or relevant factors.

Despite the work on these metrics, they are still used as research-grade or clinical measures only. The primary strategies for a Lupus Warrior to measure disease activity at home is to track symptoms using an app or journal.

Pros and cons of different lupus disease activity measures

Selecting the best measurement tool is often not an easy task. The different tools have strengths and weaknesses, varying price points, and administrative hurdles. For the scales listed below, a physician is required to perform and assessment. Below is an overview of the three measures listed here.

For an insight into the benefits and challenges of other tools, this chart published in the journal Arthritis Responsive Therapies provides a great overview.

SLEDAI

Systemic Lupus Erythematosus Disease Activity Index

Strengths:

Most commonly used for clinical and research purposes
Includes global disease activity and severity
Includes laboratory tests (objective measures)

Weaknesses:

Does not include severity in an organ system
SLEDAI without SELENA element does not include improvement or decline

Time to complete: ~10 minutes

Cost: $

SLAM

Systemic Lupus Activity Measure

Strengths:

Includes global disease activity and severity
Includes laboratory tests (objective measures)

Weaknesses:

Does not include severity in an organ system
Subjective scoring by patients can decrease consistency

Time to complete: ~15 minutes

Cost: $

BILAG

British Isles Lupus Assessment Group Index

Strengths:

Includes global disease activity and severity
Measures and rates individual organs/systems

Weaknesses:

Formal training is required for administration to get optimal results

Time to complete: ~50 minutes

Cost: $$$

What’s next

New measures of lupus disease activity are in development. New laboratory tests, including blood biomarker tests, may provide objective measures that do not require physician assessments. This would make it possible to compare disease activity across clinician visits, helping open the door for virtual clinical trials.

The post Measuring Lupus Disease Activity Over Time appeared first on LupusCorner.

Steroid Tapering, Health Benefits, & Lupus

brett — Tue, 01 Sep 2020 05:51:31 +0000

The best daily steroid dose for lupus can change. Strategic dosing is an important part of managing lupus. A new study shows that successful steroid tapering of prednisone has increased since 2000.

During a lupus flare, you want to feel better. But, the strategies that work to get symptoms under control are often very different than what is necessary for the day-to-day management of lupus.

Lupus treatment plans include doctor-prescribed medications like non-steroidal anti-inflammatory drugs (NSAIDs), antimalarials, immunosuppressants, and steroids. Of these, steroids can be particularly challenging to manage because they offer long-term risks, like organ damage, despite providing short-term relief from symptoms. We will explore steroids, the risks and challenges associated with the medications, and tips for tapering.

What Are Steroids?

The term “steroid” is used to describe medications having a particular molecular configuration. This core structure is composed of 17 carbon atoms fused into four rings. There are many different types of steroids including:

Corticosteroids
- Glucocorticoids
Sex steroids
- Estrogen
- Progesterone
- Testosterone
Secosteroids
- Vitamin D
Neurosteroids
- Dehydroepiandrosterone (DHEA)

People with lupus often take corticosteroids. These medications help regulate the function of the immune system and decrease inflammation throughout the body. Common corticosteroids are:

Cortisone
Prednisone
Prednisolone
Hydrocortisone
Methylprednisolone (Medrol)
Dexamethesaone (Decadron)
Triamcinolone IM

Corticosteroids can be taken in four different ways:

Orally
- Tablets, capsules, syrups
Topically
- Creams and ointments
Via Injection
Inhaled
- Inhaler or intranasal spray

Common Steroid Side Effects

Steroids cause many side effects. Because of this, you should work with your lupus treatment team to adjust dosing to minimize the impact on your health. Often this means trying to take steroids for short periods of time only. Side effects can vary by the method of ingestion, but common side effects include:

Weight gain
Acne
Infection
Irritability
Difficulty sleeping
Elevated pressure in the eyes
Fluid retention and/or swelling in the legs
High blood pressure
Problems with memory or mood

Additionally, long term use of steroids can lead to more serious medical conditions like osteoporosis, cataracts, glaucoma, or muscle weakness. To learn more about potential side effects, check out the Johns Hopkins Lupus Center.

What is Steroid Tapering?

Steroid tapering is the process of slowly decreasing the amount of steroid taken. For people with lupus, this process can take a few months. However, longer tapers may be necessary for prolonged steroid treatment (more than 1 year taking steroids).

According to a 1998 study published in American Family Physician, a stepped reduction is the recommended tapering schedule. Every 3 to 7 days, reduce the steroid dosage. Depending on the medication, the reduction amount and success threshold can vary. Be sure to develop a plan with your lupus treatment team.

The purpose of steroid tapering is to help your body adjust. Corticosteroids mimic the effects of hormones that your body naturally produces in your adrenal glands, like cortisol. However, when you are taking the medication, your body begins to decrease the natural production of hormones.

Suddenly stopping a steroid can trigger withdrawal symptoms including:

fatigue
muscle aches
weakness
nausea
loss of appetite

New Research: Weaning Off Glucocorticoids

148 people with lupus participated in a 2019 study that was designed to test the value of removing glucocorticoids from the lupus treatment plan

91 participants (61.5%) stopped taking glucocorticoids with the assistance of a doctor. When the medication was removed, less than half of these patients were in complete (48.9%) or clinical (39.6%) remission. The researchers tracked the participants’ progress over the course of 6 years.

People with lupus who stopped glucocorticoids experienced significantly lower disease activity, and over half (54.2%) were able to achieve complete remission. Despite noting the the withdrawal of the medication was possible, some people still experienced lupus flares. The researchers stressed that the withdrawal of glucocorticoids should only be attempted after long-term remission.

Researchers and clinicians are exploring new treatment plan strategies. You can read more about lupus medications, here.

The risks of stopping, or reducing the dose of, glucocorticoids vary from person to person. The main factor in such a decision should be your risk of relapse. For people at high risk, stopping prednisone, one of the main glucocorticoid medications, was associated with a four-fold risk of symptom onset.

When it comes to medications and all parts of your treatment plan, work with your lupus treatment team to identify what may work best for you.

Updated on August 31, 2020.

The post Steroid Tapering, Health Benefits, & Lupus appeared first on LupusCorner.

LupusCorner Insights | Learning with the Community

brett — Tue, 26 May 2020 09:04:43 +0000

May is Lupus Awareness Month and an opportunity to share learnings from LupusCorner Insights!

Lupus is an incredibly heterogeneous disease. That means that it manifests differently for nearly every Lupus Warrior. Some people will experience certain symptoms while others won’t. A medication can work wonders for some and not at all for others.

Despite this variability, it can be helpful to better understand the commonalities in both disease and experience. LupusCorner Insights is our quiz and survey platform. Whether you want to test your knowledge, contribute your experiences, or learn from others, it may fit your needs.

Below, we will highlight some of the interesting findings from these tools. Remember when looking at this data, this is just survey data from other LupusCorner members. The participant sample is not randomized. Anyone visiting the site can take the polls. Despite these limits, the following may help identify challenges or questions/solutions experienced by other people living with lupus.

Getting diagnosed with lupus

The process of getting a lupus diagnosis can be a long and arduous one. On average, research shows that it takes 6 years to get diagnosed and can require visits to multiple clinicians.

Over 67% of people of the 2,662 people surveyed reported being diagnosed with lupus between the ages of 20 – 49. The average age at patient-reported diagnosis was 38.4 years old.

Because the challenges with getting diagnosed, many people believe that they have lupus before it is confirmed by a clinician. Many Lupus Warriors turned to the internet to help them explore symptoms and confirm their suspicions. Also commonly used was the American College of Rheumatology lupus rubric.

One factor that makes diagnosing lupus a challenge is the ebb and flow of symptoms. It’s possible that the symptom that made you schedule a visit with your lupus treatment team is gone by the time of your visit.

The most common symptoms at the time of lupus diagnosis were arthritis, photosensitivity, and a positive ANA test. Interestingly, the telltale malar (butterfly) rash was reported by only 41% of people at the time of diagnosis.

Lupus Warriors with all experience visit and use LupusCorner Insights. While nearly 12% of people who completed the survey were diagnosed this year, nearly 53% of people were diagnosed 1 to 10 years.

And, it isn’t just newly diagnosed people who turn to LupusCorner for support. Over 16% of the community was diagnosed more than 20 years ago.

Working with a lupus treatment team

Even after getting diagnosed, managing lupus remains a challenge. There is no cure and many treatments come with their own benefits and risks.

A key factor in satisfaction and treatment plan adherence is a good working relationship with your rheumatologist. However, when surveyed, many Lupus Warriors felt that their clinicians could do more to support them. It is important to feel heard during visits and hav a clinician who can explain the intricacies of lupus, both the disease and treatments. But, those patient expectations were not typically being met.

On a scale of 1 – 5 stars, 31.4% of people rated their lupus treatment team 3 stars (n=968). Even when drilling down into the data, the top response for every single cohort (grouped on time since being diagnosed with lupus) was 3 stars.

Responses to subsequent question may provide some insight into the lack of satisfaction.

Keep up with LupusCorner Insights

Want to see more community data? Sign up the LupusCorner Insights Newsletter below!

And you can see the current list of quizzes and polls on LupusCorner Insights

The post LupusCorner Insights | Learning with the Community appeared first on LupusCorner.

Support from Caregivers That Works (& What Doesn’t)

brett — Tue, 12 Nov 2019 08:00:56 +0000

Managing the ups and downs, the twists and turns, of lupus is an on-going battle. What support do Lupus Warriors find most useful and what else can caregivers do to help?

No two people with lupus are alike. That doesn’t just mean that symptoms and disease fluctuations are different (though they are). It also means that personal preferences, desires, and how people choose to spend their spoons differ, too.

In this month’s LupusCorner Q&A Forum, Lupus Warriors share how their friends, family, and caregivers help support the lupus care journey.

Katie

My family, friends, and/or caregiver help me manage lupus

3/5 (neutral)

What are the most useful things your family, friends, and/or caregiver do to support you?

They don’t push me to do things during a flare/when I am not feeling well but they also (fortunately) don’t treat me differently (I am not my disease); my husband picks up my meds or flexes our plans to meet my needs; most importantly though, they all listen and continue to love me.

How could you be better supported by your care network?

I wish there was better public awareness and a higher level of understanding about what lupus is in the general population

Michelle A.

What are the most useful things your family, friends, and/or caregiver do to support you?

Helping me with physical tasks when I am unable to perform them during a severe flare.

Mental support in the form of always being a positive and understanding voice on the end of the phone line, WhatsApp or Facebook messaging when I want to grumble about my lupus.

And simply just offering up their time to visit me when I’m ill at home or in hospital, or the flexibility around moving work appointments and deadlines to accommodate me during times when I am unwell.

How could you be better supported by your care network?

It would be nice if there was a more official lupus forum supported by the public system here in New Zealand as opposed to a Facebook group where I can meet other individuals living with lupus. I know three people with lupus at this stage who’ve taught me a lot about living with the symptoms, and I know them only thanks to mutual friends introducing them to me.

It would be helpful if there was a support group readily available when I was diagnosed in the public system – admittedly there was a support group for people with connective tissue disorders, but the website was long disbanded when the nurse at the public hospital informed me about it.

Janell

My family, friends, and/or caregiver help me manage lupus

5/5 (strongly agree)

What are the most useful things your family, friends, and/or caregiver do to support you?

They help to keep stress out of life as much as possible, when I need to rest they know that I need to and allow it, no questions asked, at times they will even wait on me dinner in bed, juice in bed, rub my back, close the blinds, extra blanket. The little things make a difference when you feel bad.

How could you be better supported by your care network?

I don’t know that I could be, you always have people in your extended family that says “there is nothing wrong with her/him they do that for attention.” That is why they are considered “extended” family.

Living well within the limitations of lupus

My family, friends, and/or caregiver help me manage lupus

4/5 (agree)

What are the most useful things your family, friends, and/or caregiver do to support you?

My family and friends graciously accept the fact that I often “bug-out” of planned activities because of my unpredictable lupus “down” days. No one expects me to hold dinner parties, babysit or travel with them.

My husband reels me in when I start to overextend myself. I can get so wrapped up in something I enjoy and “use up” my low energy reserves – then need to rest for several days. He sees it happening when I don’t. Sometimes the joy from the activity is worth the following downtime.

The volunteer work that I can do for a couple of organizations is structured in ways that I do what I can when I am able, which helps me feel connected to my community.

How could you be better supported by your care network?

I live in an area with few specialists trained in treating the complexities of managing lupus. Fortunately, I know my body very well and get help before a flare gets out of hand.

Sandra O.

My family, friends, and/or caregiver help me manage lupus

5/5 (strongly agree)

What are the most useful things your family, friends, and/or caregiver do to support you?

My Caregiver/Doctor listens to me and takes my discomforts seriously. My family tries to help me alleviate stress and they help me complete physical tasks, that might be too much for me to complete on my own. They check up on me and encourage me to rest when I need it.

How could you be better supported by your care network?

My care network does a good job of addressing any concerns I have regarding my health.

Holes in our care

My family, friends, and/or caregiver help me manage lupus

2/5 (disagree)

What are the most useful things your family, friends, and/or caregiver do to support you?

Helping me with heavier tasks, doing those I can no longer do. Cleaning up kitchen at end of day. Emotional support in dealing with problems related to [lupus]

How could you be better supported by your care network?

Those who are close to me, like sons who live locally, making themselves a little available verbally for rides to doctor on my off days, etc. Just showing more interest or concern for what I’m dealing with related to lupus.

Carol C.

My family, friends, and/or caregiver help me manage lupus

2/5 (disagree)

What are the most useful things your family, friends, and/or caregiver do to support you?

I don’t feel supported except for them asking how my doctor appointments go.

How could you be better supported by your care network?

I wish that they would come to some appointments and ask questions. Also, I wish that they would understand the limitations I face with lupus.

Early loopy blues

My family, friends, and/or caregiver help me manage lupus

3/5 (neutral)

What are the most useful things your family, friends, and/or caregiver do to support you?

Remind and encourage me to stop when I am too focused on something and don’t notice I’m pushing myself.

How could you be better supported by your care network?

If they followed through with help when promised – or just don’t offer to begin with.

BeyondBlessed!

My family, friends, and/or caregiver help me manage lupus

4/5 (neutral)

What are the most useful things your family, friends, and/or caregiver do to support you?

My mother is my rep-payee for my disability pay. She also acts as my memory for paperwork, appointments, meds, etc. My son drives me places, when I am unable to drive safely.

How could you be better supported by your care network?

I often feel as though I’d be better supported by my family being more understanding of how SLE affects me & why I make some of the choices that I do.

How those around me affect my lupus

My family, friends, and/or caregiver help me manage lupus

5/5 (strongly agree)

What are the most useful things your family, friends, and/or caregiver do to support you?

My husband always listens to me about my symptoms, medication changes, doctor appointments, and lifestyle modifications. He is my advocate when it comes to protecting my health and minimizing my symptoms in the midst of any kind of stress.

How could you be better supported by your care network?

Many people – family, friends, acquaintances, coworkers, employers, even other medical professionals – simply don’t understand how many symptoms there can be to lupus and how those symptoms can affect the lupus sufferer differently from one day to the next.

People in one’s care network can help by listening to those of us with lupus, accepting our struggles, and working with us to find possible ways to alleviate the symptoms.

Shakirah

My family, friends, and/or caregiver help me manage lupus

5/5 (strongly agree)

What are the most useful things your family, friends, and/or caregiver do to support you?

They make sure I get to all my appointments, make sure I eat properly and help me with anything I need. Example, bathing, washing clothes, housework and cooking.

How could you be better supported by your care network?

I think I have an excellent care team. All my doctors and nurses work together to help me manage Lupus SLE and ESRD. It’s not easy, but they keep me as healthy as possible.

WBW

My family, friends, and/or caregiver help me manage lupus

3/5 (neutral)

What are the most useful things your family, friends, and/or caregiver do to support you?

Keep in touch and understand when I am unable to participate in a planned event

How could you be better supported by your care network?

More help with everyday chores and help with meal prep on bad days

Rebecca B.

My family, friends, and/or caregiver help me manage lupus

5/5 (strongly agree)

What are the most useful things your family, friends, and/or caregiver do to support you?

Understanding of when I need to rest and take it easy during a flare. Also they accommodate outings and my need to stay out of direct sunlight.

How could you be better supported by your care network?

In my experience here in the northern Kentucky area rheumatologists don’t focus much on anything but the joint pain which is a small part of the symptoms. They don’t seem very familiar or up to date on therapies or tx let alone dx. It took years to get a dx which they constantly change and tx

Kelly

My family, friends, and/or caregiver help me manage lupus

2/5 (disagree)

What are the most useful things your family, friends, and/or caregiver do to support you?

Listen when I want to talk about my feelings

How could you be better supported by your care network?

If they could understand that I may look fine but inside I hurt

Lupette

My family, friends, and/or caregiver help me manage lupus

5/5 (strongly agree)

What are the most useful things your family, friends, and/or caregiver do to support you?

Cook, clean and shuttle me around

How could you be better supported by your care network?

I wish they would just read my records. They always start from the beginning and it is exhausting to have to try and remember it all to give an accurate picture.

Lisa J.

My family, friends, and/or caregiver help me manage lupus

2/5 (disagree)

What are the most useful things your family, friends, and/or caregiver do to support you?

Give me space and time…ease up on demands

How could you be better supported by your care network?

If they would take the time to learn more about lupus, so they could understand what I deal with on a daily basis a little better.

Kay

My family, friends, and/or caregiver help me manage lupus

5/5 (strongly agree)

What are the most useful things your family, friends, and/or caregiver do to support you?

Fortunately my hubby is a great cook, most the time I don’t feel like fixing meals.

How could you be better supported by your care network?

Doctors need to communicate with each other.

Liz A.

My family, friends, and/or caregiver help me manage lupus

1/5 (strongly disagree)

What are the most useful things your family, friends, and/or caregiver do to support you?

They let me rest when I need to.

How could you be better supported by your care network?

I have to care for myself.
My lupus has been stable for awhile now. I practice self-care in different ways.

Pam

My family, friends, and/or caregiver help me manage lupus

3/5 (neutral)

What are the most useful things your family, friends, and/or caregiver do to support you?

Remind me to pace myself

How could you be better supported by your care network?

If everybody would wash their hands to decrease viruses to help in my lowered immunity.

Lisa W.

My family, friends, and/or caregiver help me manage lupus

2/5 (disagree)

What are the most useful things your family, friends, and/or caregiver do to support you?

Help with house chores

How could you be better supported by your care network?

More understanding of lupus and what I am going though

Thanks to everyone who shared their experiences with lupus!

Interested in contributing to the LupusCorner Q&A Forum? Send an email to hello@lupuscorner.com to get added to the mailing list!

The post Support from Caregivers That Works (& What Doesn’t) appeared first on LupusCorner.

Home Remedies & OTC Treatments for Lupus

brett — Tue, 24 Sep 2019 08:55:39 +0000

Do Lupus Warriors turn to home remedies or over-the-counter solutions to help manage the fatigue, pain, and other symptoms of lupus?

Despite the fact that only 1 lupus medication has been approved in the last 60 years, there are many reasons to be optimistic. Anifrolumab, made by AstraZeneca, just met the clinical endpoint in a phase III clinical trial. And, lupus nephritis medication Gazyva (obinutuzumab), made by Roche, received the Breakthrough Therapy Designation from the FDA.

Still, as these and other treatments make their way to market, many Lupus Warriors use alternative treatments like aromatherapy and massage to manage symptoms.

In this month’s LupusCorner Q&A Forum, Lupus Warriors share their personal strategies & home remedies.

Ease lupus issues without RX

I have found successful home remedies or over-the-counter products that help with lupus

2/5 (disagree)

What home remedies or OTC products do you like best? What benefit do they provide?

Epsom salts bath
- Pain relief
Vitamin B-12 oral drops
- Energy
Sephora skin care products (cleanser, hydrated, and moisturizer)
- Diminishes butterfly rash
New Balance athletic shoes with inserts
- Ease foot discomfort
TENS machine or massage
- Relax to relieve tension issues and associated pain
CBD balm
- Relieves joint pain
Biotene gel
- Soothes mouth sores and dry mouth
Yoga

Sandra O.

I have found successful home remedies or over-the-counter products that help with lupus

4/5 (agree)

What home remedies or OTC products do you like best?

Benadryl Anti-Itch ointments
CERAVE Lotion (Anti-Itch)
Ben-Gay Tiger Balm
Icy Hot with Lidocaine
Chamomile Mint Tea with OTC Melatonin.

What benefit do they provide?

I get some pain relief from the pain cream rubs, itch relief from the Anti-Itch ointments and Lotions. The tea and melatonin help me get some sleep.

Without a prescription

I have found successful home remedies or over-the-counter products that help with lupus

1/5 (strongly disagree)

What home remedies or OTC products do you like best?

Hand warmers (ordered through Amazon) help with the discomfort of Reynaud’s in cool weather. Licorice tea can be comforting in cool or rainy weather, when the joints are bothersome. In hot weather, Pedialyte popsicles help replace electrolytes lost through sweating, as well as keeping me hydrated (a particular problem with Sjogrens).

What benefit do the provide?

Nothing I’ve found changes the basic facts of lupus. But, hand warmers lessen the discomfort of cold hands, herb tea can be comforting, and its pleasant to eat popsicles.

Janell

I have found successful home remedies or over-the-counter products that help with lupus

2/5 (disagree)

What home remedies or OTC products do you like best?

Nothing, sometimes a hot shower, helps feel better.

What benefit do the provide?

Just to help feel a little better, takes the strain off, and stress reliever.

Unwind

I have found successful home remedies or over-the-counter products that help with lupus

2/5 (disagree)

What home remedies or OTC products do you like best?

Vicks rub, CBD Lotion applied everywhere within reason, covered arms and legs and tucked into bed.

What benefit do the provide?

Relaxation, and a calming feeling to help unwind a bit when symptoms get overwhelming. A good movie helps too.

Lisa B.

What home remedies or OTC products do you like best? What benefit do the provide?

Biotene mouth spray for dry mouth
NeilMed nose spray for dry nose
Hylo eye drops for dry eyes

All help with Sjogrens symptoms.

Gail S.

I have found successful home remedies or over-the-counter products that help with lupus

3/5 (neutral)

What home remedies or OTC products do you like best?

Penetrex helps my swollen finger joints.

What benefit do the provide?

It takes some of the swelling down and cuts some of the pain.

Elizabeth A.

I have found successful home remedies or over-the-counter products that help with lupus

1/5 (strongly disagree)

What home remedies or OTC products do you like best?

I don’t use home remedies or OTC products for my lupus

Lisa

I have found successful home remedies or over-the-counter products that help with lupus

4/5 (agree)

What home remedies or OTC products do you like best? What benefit do they provide?

I take vitamin supplements to help lower my inflammatory responses. They are Vitamins D-3, E, Omega 3’s, Curcumin, Tumeric.

Cathy

I have found successful home remedies or over-the-counter products that help with lupus

2/5 (disagree)

What home remedies or OTC products do you like best? What benefit do they provide?

I use a ton of probiotics to help heal my gut – poor gut health is believed to be a key contributor to lupus.

Lisa J.

I have found successful home remedies or over-the-counter products that help with lupus

2/5 (disagree)

What home remedies or OTC products do you like best?

Heating pad & stretching bands

What benefit do they provide?

Relax my muscles & tendons

aliS

I have found successful home remedies or over-the-counter products that help with lupus

2/5 (disagree)

What home remedies or OTC products do you like best? What benefit do they provide?

Bio freeze, ice, hottub, roller ball, epsom salt baths, weed, bible study/meditation

Suz

I have found successful home remedies or over-the-counter products that help with lupus

5/5 (strongly agree)

What home remedies or OTC products do you like best?

CBD

What benefit do they provide?

Pain relief
Sleep
Emotional well-being

Joanna Sparks

I have found successful home remedies or over-the-counter products that help with lupus

1/5 (strongly disagree)

What home remedies or OTC products do you like best? What benefit do they provide?

Nothing works over-the-counter for me

Krys E.

I have found successful home remedies or over-the-counter products that help with lupus

3/5 (neutral)

What home remedies or OTC products do you like best? What benefit do they provide?

Electrolytes help reduce POTs symptoms (dizziness/presyncope) moderately.

igor

I have found successful home remedies or over-the-counter products that help with lupus

1/5 (strongly disagree)

What home remedies or OTC products do you like best?

None

When medicine is not enough

I have found successful home remedies or over-the-counter products that help with lupus

1/5 (strongly disagree)

What home remedies or OTC products do you like best?

Essential oils

What benefit do they provide?

Relax and give courage

Rosella F.

I have found successful home remedies or over-the-counter products that help with lupus

5/5 (strongly agree)

What home remedies or OTC products do you like best?

CBD Oil
Turmeric
Ginger
Fish oil

Mellon

What home remedies or OTC products do you like best? What benefit do they provide?

Essential Oils like Peppermint (for pain) Lavender (relaxation), Immune Support, Eucalyptus, etc. I use a lot of these in conjunction with Epsom salt baths.

I also found a spa with a sauna.The dry heat sessions are not the cure but do help temporarily.

Thanks to everyone who shared their experiences with lupus!

Interested in contributing to the LupusCorner Q&A Forum? Send an email to hello@lupuscorner.com to get added to the mailing list!

The post Home Remedies & OTC Treatments for Lupus appeared first on LupusCorner.

Frustrations (and Remaining Optimistic) with Lupus

brett — Tue, 06 Aug 2019 06:15:00 +0000

Living with lupus brings plenty of frustrations. Finding moments of optimism when you’re feeling down is a key part of the battle.

Fatigue, flares, medication side effects, physical challenges… there are plenty of frustrations to overcome when living with lupus. Remaining optimistic can be hard, but it’s worth it.

Research has even shown that optimism can be good for your health, lowering blood pressure and decreasing the risk of heart disease. Still, it doesn’t change that sometimes you just want to scream or cry ????

Also, if you’re feeling particularly down, consider connecting with a mental health professional. Check out the FAQ answered by a licensed clinical social worker.

In this month’s LupusCorner Q&A Forum, Lupus Warriors share their personal challenges and the parts of life that help them overcome.

Ups, downs, and roundabouts of lupus

I am usually optimistic about the future of my battle with lupus

4/5 (agree)

What frustrates you the most about living with lupus?

Not knowing when and how disability benefits work in the case that I need it. What to do in the mean time so I’m not left financially devastated.

What picks you up when you are feeling down? How do you remain optimistic?

Getting up and going to work a shift at Starbucks. And my pup!

Katie G.

I am usually optimistic about the future of my battle with lupus

4/5 (agree)

What frustrates you the most about living with lupus?

Flares typically slow me down from my average pace of life and are an inconvenient reminder that I must be vigilant in minding my stressors, sleep, and triggers. I am used to “doing what I want” without thinking about how it will affect me, but now I have to and that slows me down (and if it doesn’t, it usually leads to a flare). I get frustrated with myself mostly and having to do things that are opposite my instinct/desire.

What picks you up when you are feeling down? How do you remain optimistic?

Sleep, friends, my husband, my dog, gardening, and alone time. I often just need to “reset” my perspective and remind myself that I am not my disease and slowing down/considering the impact things (e.g. staying up late, having that extra glass of wine) have on my health is not a bad thing…they are just new things.

Diana G.

I am usually optimistic about the future of my battle with lupus

2/5 (disagree)

What frustrates you the most about living with lupus?

Having to live day by day, without planning ahead – future is too uncertain – or looking back – memory is too poor.

What picks you up when you are feeling down? How do you remain optimistic?

I try to focus on some fun activity which for me is walking (usually just around the block) and taking pictures of flowers, or doing art (drawing, painting, or just coloring), or something with music (singing, playing the piano, or just listening).

Predict the unpredictable

I am usually optimistic about the future of my battle with lupus

5/5 (strongly agree)

What frustrates you the most about living with lupus?

The unpredictability of a flare. That not a lot of people understand lupus and that you may look fine but there is a civil war going on inside of you

What picks you up when you are feeling down? How do you remain optimistic?

My family and friends. Funny shows/movies

Janell

I am usually optimistic about the future of my battle with lupus

4/5 (agree)

What frustrates you the most about living with lupus?

When I do have to go to ER due to issues, the doctors here look at you as if you have some disease that they are going to get. They have no idea how to help (I wonder why I even go – normally I don’t). Plus the everyday just not “feeling good.” I want to feel “normal” without all the medicine everyday..????but put a smile on to the next day..most of all..LIVE LIFE TO THE FULLEST, life is short.

What picks you up when you are feeling down? How do you remain optimistic?

Friends, and my dog Abby she is a 13 year old Golden Retriever..
Remaining, I don’t know that I do. I live one day at a time, have more than lupus in my health basket & it’s the only way to live. If my feet are on the floor every morning, it’s going to be a good day.

Sandra

I am usually optimistic about the future of my battle with lupus

3/5 (neutral)

What frustrates you the most about living with lupus?

Physical limitations and fatigue. I don’t have much desire to socialize.

What picks you up when you are feeling down? How do you remain optimistic?

Music and my job. I like that my job allows me to have somewhere to go each day outside of my home. It also allows me to live independently.

Jasrene

I am usually optimistic about the future of my battle with lupus

5/5 (strongly agree)

What frustrates you the most about living with lupus?

Going through all the pains and tiredness and looking perfectly fine to others.

What picks you up when you are feeling down? How do you remain optimistic?

Being able to still live like a normal person, walk, run, play, travel, I am so much more fortunate than many others.
Look forward to outings, make travel plans and look forward to them!

Courage under fire

I am usually optimistic about the future of my battle with lupus

2/5 (disagree)

What frustrates you the most about living with lupus?

Meds only provide some control – it’s so unpredictable. Plans and commitments fall through. And I get tired of hurting all the time. And pretending I’m OK.

What picks you up when you are feeling down? How do you remain optimistic?

I know I was really strong before the lupus, and brave. It hasn’t beaten me yet. I make myself get up and do something that reminds me I’m alive and life is beautiful. And I love my family too much to give up.

Lisa B.

I am usually optimistic about the future of my battle with lupus

4/5 (agree)

What frustrates you the most about living with lupus?

The unpredictability of the symptoms and related illnesses.

What picks you up when you are feeling down? How do you remain optimistic?

Laughing with my husband, cuddling my dog, praying and meditating. Plus, reminding myself that I have had better days before, and will again.

Reality with lupus

I am usually optimistic about the future of my battle with lupus

5/5 (strongly agree)

What frustrates you the most about living with lupus?

The surprises it pulls on me. I’ll be doing just fine working, living life, etc., then boom (!) I’m in the hospital!
And then recovering…

What picks you up when you are feeling down? How do you remain optimistic?

Lots of good night rest.

Cindy J.

I am usually optimistic about the future of my battle with lupus

5/5 (strongly agree)

What frustrates you the most about living with lupus?

The fact that others don’t really understand the disease.

What picks you up when you are feeling down? How do you remain optimistic?

I generally don’t get down very often. It is what it is. I had a very influential grandma who battled two types of cancer and always maintained a positive attitude and the mentality that someone has it worse than you. So I try to remember that and how blessed I truly am.

Becky D.W.

I am usually optimistic about the future of my battle with lupus

3/5 (neutral)

What frustrates you the most about living with lupus?

Never knowing how I’ll feel from one day to the next. Or when I have anything go on in or on my body wondering if the cause is lupus or not.

What picks you up when you are feeling down? How do you remain optimistic?

My husband is reassuring and my grandkids love make me feel so warm and confident that I can face anything lupus throws my way.

Shakirah J.

I am usually optimistic about the future of my battle with lupus

5/5 (strongly agree)

What frustrates you the most about living with lupus?

The crazy flare ups and joint pain.

What picks you up when you are feeling down? How do you remain optimistic?

God has a plan for my life. I remind myself everyday of this. Have to keep pushing to find out what is is.

Robin M.

I am usually optimistic about the future of my battle with lupus

1/5 (strongly disagree)

What frustrates you the most about living with lupus?

The constant pain and never-ending exhaustion. Also not being able to run around playing with my youngest child, he’s only 6 and he will never know what it is to have a healthy “normal” mom

What picks you up when you are feeling down? How do you remain optimistic?

My son, reaching out to other lupus survivors and reading

Cathy

I am usually optimistic about the future of my battle with lupus

2/5 (disagree)

What frustrates you the most about living with lupus?

The “unknown” and unpredictability of the disease.

What picks you up when you are feeling down? How do you remain optimistic?

Knowing that how I feel right now will pass with time, rest, and self-care. I try to stay optimistic by staying grateful for what I have and focusing on what I can do.

L W

I am usually optimistic about the future of my battle with lupus

3/5 (neutral)

What frustrates you the most about living with lupus?

Pain and no one understand what I am going though. Lack of support.

What picks you up when you are feeling down? How do you remain optimistic?

Playing with my Yorker. I look on the bright side of things, like being able to get out of bed in the morning and move. Makes for an optimistic day.

Okiesane

I am usually optimistic about the future of my battle with lupus

3/5 (neutral)

What frustrates you the most about living with lupus?

Not knowing when flare will happen and immunosuppression.

What picks you up when you are feeling down? How do you remain optimistic?

Just keep on swimming and trying to raise my 9yo daughter.

Anonymous

What frustrates you the most about living with lupus?

Days when I have to cancel plans due to being too fatigued

What picks you up when you are feeling down? How do you remain optimistic?

I try to meditate. I also listen to music. And I try to focus on what I can do vs what I can’t.

A bright future?

I am usually optimistic about the future of my battle with lupus

2/5 (disagree)

What frustrates you the most about living with lupus?

Fatigue and cognitive issues. Also the lack of control over when I have flares.

What picks you up when you are feeling down? How do you remain optimistic?

Talking and laughing with friends. I am not feeling optimistic right now

Anonymous

I am usually optimistic about the future of my battle with lupus

2/5 (disagree)

What frustrates you the most about living with lupus?

Fatigue. Knowing that I won’t die of lupus but of some failure caused by lupus and that lupus won’t be listed as the cause of death…

What picks you up when you are feeling down? How do you remain optimistic?

Feeling less tired some days. Other days I wonder if fighting this hard is worth the trouble.

Thanks to everyone who shared their experiences with lupus!

Interested in contributing to the LupusCorner Q&A Forum? Send an email to hello@lupuscorner.com to get added to the mailing list!

The post Frustrations (and Remaining Optimistic) with Lupus appeared first on LupusCorner.

Butterfly Rash (Malar): Telltale Lupus Symptom?

brett — Mon, 08 Jul 2019 10:41:31 +0000

The butterfly rash is a reddish purple facial rash that appears on the faces of many Lupus Warriors. 31% – 65% of people with lupus experience the skin symptom.

Many associations, funds, bloggers, and lupus advocates include a butterfly in their logos. This symbol is common as a reference to the butterfly rash (also known as the malar rash). Named from the Latin word ‘mala’ meaning jaw or cheek-bone, the rash takes the shape of a butterfly. It appears on the:

cheeks
bridge of the nose
NOT on the smile/laugh lines on the side of the nose that run to the corner of the mouth
- called the nasolabial folds

The rash can be raises or flat, blotchy or solid. In severe cases, the butterfly rash can be painful. Typically, it is a slightly itchy rash that may feel “hot.”

The American College of Rheumatology lupus diagnosis rubric includes the butterfly rash. So it is part of the evaluation for getting a lupus diagnosis. However, not all Lupus Warriors will experience the rash. How common is the rash? Because the answer was not clear after reviewing the existing research, LupusCorner conducted a poll.

LupusCorner butterfly rash poll methods

The poll was posted on LupusCorner and our Facebook page in 2016. There were 2 ways to answer the poll:

From the poll widget
- Do you ever experience the butterfly rash (malar rash): Yes/No/I do not have lupus
In free-text responses in the Facebook comments
- Any comments that could not be coded were removed from the sample

Poll results

There were 969 total responses. 53.4% of people with lupus experienced the butterfly rash at some point in their battle. Ten people did not have lupus and were removed from the calculation.

As a result of this poll, we have some knowledge of the self-report baselines for the LupusCorner community. While this is useful, it does not take additional lupus factors into consideration.

Prevalence of Butterfly Rash in People with Lupus - All Responses

Experienced Malar Rash
No Malar Rash
I don't have lupus

Butterfly rash & lupus: current context

The goal of the poll was to replicate current studies with patient-volunteered information. Because of this, some potentially relevant factors were not added the poll (or to existing research) including:

disease severity
racial/ethnic background
age of lupus onset

There is some current research suggesting that the above factors may be relevant to the butterfly rash prevalence. For example, late-onset SLE (defined as onset of the disease after age 50) was more benign, with a significantly lower incidence of the malar rash according to one study conducted with a Chinese cohort of participants.

So, how does this poll compare to other prevalence statistics? Wikipedia reports that the butterfly rash is “present in approximately 46-65% of lupus sufferers and varies between populations.“

Butterfly rash prevalence in 2 distinct US Hispanic subpopulations

A study by Vilá, L. M., et al., examined two US Hispanic subgroups – focusing on 105 Hispanic SLE patients from Texas and 81 SLE patients from Puerto Rico. The average ages, in years, were 33.1 and 37.5 for the Texas population and Puerto Rican population respectively.

These two groups of participants has significant differences between them. The Texas cohort experienced the rash in 45.7% of participants while the Puerto Rican cohort experienced the rash in 65.4% of participants. Wikipedia uses these numbers to describe the butterfly rash prevalence.

While this finding is interesting, the researchers also found 7 other clinical differences were and 3 different autoantibody measures between the groups. Additional research is necessary to better understand why these differences exist — with particular interest paid to nature/nurture differences and access to healthcare services.

Malar Rash in Texas Subpopulation

Had Malar Rash
No Malar Rash

Malar Rash in Puerto Rican Subpopulation

Had Malar Rash
No Malar Rash

Combined TX and PR Responses

Had Malar Rash
No Malar Rash

Though not completed in the original study, we combined the population subgroups to find the total prevalence percentage, regardless of cohort. Interestingly, the prevalence was 54%, nearly identical to the finding of our poll

Malar rashes in Tunisian populations with lupus

This study by Houman, M H., et al., focused on a Tunisian population. The authors noted at the time of publication (2004) there were few studies on Arab populations and effectively 0 studies on North Africans/Tunisians.

First, the researchers retroactively enrolled 100 SLE Tunisian participants (92 women and 8 men) into the study. The average participant age was 32 years old. 19 of the patients were over 50 upon diagnosis, but age-of-onset figures do not appear in the results section for variability of butterfly rash.

Malar Rash in Tunisian Cohort

Had Malar Rash
No Malar Rash

This study found that 63 of the participants experienced the butterfly rash (63%). Also, Wikipedia cited this figure.

Cutaneous and non-cutaneous lupus symptoms

Malar Rash in 81 Patient Cohort

Had Malar Rash
No Malar Rash

A study published in 1992 by Wysenbeek, A. J., et al., focused on all types of rashes. The study followed 81 patients with lupus at the Beilinson Medical Center in Israel. No additional information regarding the demographics of the participants was provided. Still, this study identified that 40 of the 81 (49%) people with lupus experienced a malar rash.

So there’s a consensus on prevalence of the butterfly rash? Not so fast.

While the top two studies are referenced by Wikipedia and the third is discoverable via a Google search, they are not exhaustive reviews of the research. The goal of these studies was not to determine the prevalence of the butterfly rash, though it was included in the analysis. Contradicting these findings, a larger study found a lower prevalence of the lupus symptom.

Cervera, R., et al. (2003) conducted a multi-center research study that lasted 10 years. 1,000 people participated from 7 European countries. “A total of 350 patients were from Spain, 250 from Italy, 248 from the United Kingdom, 50 from Poland, 50 from Turkey, 37 from Norway, and 15 from Belgium.” In addition to being comprised of varying ethnic and racial populations, these countries have varying cultures and availability of healthcare. These factors can change findings. So future studies should include these elements. Despite this consideration, the results presented are determined by combining all of these groups into a single cohort.

Malar Rash Prevalence in 1000-Person European Cohort

Had Malar Rash
No Malar Rash

During the course of the 10-year study, 311 of the 1000 (31.1%) participants with lupus experienced the butterfly rash. Also, the study noted that the presence of malar rash, as well as other clinical manifestations like arthritis, was higher during the first 5 years of the study as compared to the second 5 years.

So the true prevalence of butterfly rashes in lupus is…

Rashes may appear in anywhere between 31% and 65%. But, there may be more to the question.

For this reason, future research should consider additional personal and disease-history factors to better identify potential causes or risk factors for the malar rash.

The butterfly rash is not sufficient for a rheumatologist to confirm a lupus diagnosis. So, if you believe you have lupus but do not experience the rash, continue tracking other symptoms.

Updated July 8, 2019

The post Butterfly Rash (Malar): Telltale Lupus Symptom? appeared first on LupusCorner.

Affording Medications for Lupus: Programs & Assistance

brett — Mon, 10 Jun 2019 15:37:40 +0000

The pain and fatigue of lupus doesn’t just take a toll on your body. Affording medications can hurt your wallet.

Out-of-pocket costs for medications and uncovered portions of clinical visits can be a major headache — and cause some people to forego potential treatments altogether. While research and development of new medications is exciting, are the medications actually valuable if they are unaffordable to the people that need them? Rather than focus on this question, perhaps it’s better to ask this question: What tools exist to help with affording medications and medical treatments?

Studies have confirmed that financial strain negatively impacts health. One 2-year long study looked at the interaction of financial strain and the loss of personal control, which caused depression, impaired functioning, and decreased health.

While it can be overwhelming and psychologically tiring to manage the healthcare system (but hopefully these strategies may help!), it is important to attempt to minimize stress. A 2003 study (cited 64 times) found that psychological stress, in particular the daily stress of social duties and social relationships, may be associated with lupus flares. These tips may not help you explain what it’s like to have lupus to friends or acquaintances, but hopefully it can help you save a few spoons!

1. Talk to your doctor

The first tip for affording medications is one that you can and should do every time you visit your clinician. Bringing up your financial concerns with your doctor, nurses, patient advocates, and/or pharmacists is useful as they may know of assistance programs or discount cards.

Generic drugs

Your doctor may be able to prescribe generic drugs, as opposed to name brand drugs. Generic drugs are copies of brand name drugs in dosage form, safety, strength, route of administration, quality, performance characteristics and intended use. Generic medications are also approved by the FDA.

Why are generics cheaper? Drug companies have to get patents on new drugs. Those patents last for 20 years and give the companies exclusive rights to make and sell a specific drug. When the patents expire, generic drug companies can make chemically identical medications (as evaluated by the FDA). Then generic companies can sell the drugs at a considerably cheaper price. R&D costs for new medications are incredibly high, but generic drug companies do not have these costs. This is how generic drugs can be effective, approved medications at a cheaper price.

Insurance formularies

Additionally, the electronic medical record (EMR) your doctor likely uses to order medications may have additional information about the drugs covered by your insurance. Different insurance companies work with pharmacy benefits managers to create a formulary, or lists of approved medications. By working with your doctor, it may be possible to find treatment methods that are covered!

Drug samples

Samples: Not just at Costco and Sam’s Club! Drug representatives will drop off samples of medications at doctor’s offices. Samples are provided for free. While this may not be a longterm solution, it may help! This can be a great option to help with affording medications that are new to the treatment plan.

2. Prescription assistance programs (PAP)

Regardless of your insurance (or if you receive any pharmacy benefits) you are able to use prescription assistance programs. These programs can sound too-good-to-be-true — but they are valid programs that aim to help lower prescription drug costs for all people. Essentially, PAPs or drug cards work by providing you a coupon number for specific medications. They then promote smart shopping by letting you see the price of your medication, with the discount, at local pharmacies.

Two examples of this are:

FreeDrugCard.us
- Ranked #1 by RxResource.com
- Sponsored by a non-profit
- Works at 68,000 national and regional pharmacies
GoodRx.com
- Start-up company
- Provides a mobile app as well as website
- Compare prices on every FDA-approved med at 70,000 US pharmacies – shows lowest prices
- Lists additional saving tips including patient assistance programs

3. Pharmaceutical assistance programs

Pharmaceutical companies offer medication-specific programs that may help with affording medications. Often, these programs require enrollment and there are some criteria for eligibility. These programs can vary, and may not be available for every medications.

Finding these programs is easier than ever thanks to tools like GoodRx (see above) and NeedyMeds.org. On NeedyMeds, you can simply search for a given drug name and it will display all the available assistance programs. It also displays some eligibility information on the same webpage so you won’t have to spend hours and hours visiting pages all over the web!

Benlysta has a financial support program set up by GlaxoSmithKline, the maker of the drug. This program provides contact information to help sort out insurance coverage questions as well as to see if you may be eligible for additional support.

With Benlysta, GSK also offers a $0 Co-Pay Program. Approved individuals will have 100% of out-of-pocket costs covered for Benlysta up to $9,000 each year (this just covers the medication and not any doctors visits or medication administration costs). This program is for people with commercial insurance (NOT Medicare or Medicaid) that doesn’t cover Benlysta or those who are uninsured. You can learn more about the program here.

4. Diagnosis-specific patient assistance

NeedyMeds also provides diagnosis-specific assistance programs. They have multiple tiers such a Lupus Assistance and Autoimmune Disease Assistance. This will display national and state level grants or funding sources that may support some or all of your health care.

Some of the groups that showed up in the search are foundations, such as the HealthWell Foundation and Lupus Foundation of America, while others are more specific and may also support your needs.

5. State pharmaceutical assistance programs

Some states in the USA offer help with drug plan premiums and drug costs. The eligibility requirements vary by state, so you’ll need to check for your specific location.

This tool is put together by Medicare.gov but reveals all the information for the programs in each state.

State Pharmaceutical Assistance Programs search

6. Medicare Extra Help program

Extra Help is a Medicare and Social Security program to help people with limited income and resources afford prescription drugs. If you qualify, you may pay no more than $3.30 for generic medications and $8.25 for each brand name drug in 2017.

Check to see if you are eligible — or if you automatically qualify.

7. Organizations and Associations

There are entire organizations dedicated to supporting people with chronic and/or rare diseases. And others that are dedicated to helping with affording medications.

National Organization for Rare Disorders (NORD)
- NORD offers patient assistance through RareCare and other programs
- Medication-specific, diagnosis-specific, and clinical-trail programs here
BenefitsCheckUp.org
- BenefitsCheckUp can help you find available programs that you are not using.
- They offer an easily searchable benefits database for medications, health care, income assistance, tax relief, and more!
PAN Foundation FundFinder
- The PAN Foundation’s mission is help provide financial assistance to underinsured patients
- Fundfinder is a tool that makes finding and monitoring disease funds easier

Updated: June 2019

The post Affording Medications for Lupus: Programs & Assistance appeared first on LupusCorner.

Flare Triggers and Early Lupus Symptoms

brett — Tue, 04 Jun 2019 09:00:40 +0000

Recognizing flare triggers makes it possible to predict changes in lupus disease activity before the symptoms begin.

Living with lupus can feel like a roller coaster. Over night, symptoms can show up or disappear and inflammation can rise and fall. Internal factors, like stress, and external factors, like air pollution, both contribute to disease fluctuations.

This week, in the LupusCorner Q&A Forum, Lupus Warriors share the environmental and physical triggers for lupus flares. And, the first symptoms that they experience with a flare begins.

Diana G.

I can tell when a lupus flare is coming on before it starts

2/5 (disagree)

What are your lupus flare triggers? What symptoms do you experience first?

Not sure about triggers other than stress & too much sun. Symptoms are inability to think, remember, plan, or decide things; skin develops itchy, raised, red spots. Then weariness sets in.

SPM

I can tell when a lupus flare is coming on before it starts

4/5 (agree)

What are your lupus flare triggers? What symptoms do you experience first?

Worsening joint pain, possibly with swelling, that doesn’t go away. Increased need for sleep with increased fatigue.

Lisa B.

I can tell when a lupus flare is coming on before it starts

2/5 (disagree)

What are your lupus flare triggers? What symptoms do you experience first?

Stress is the biggest trigger. First symptoms are extreme fatigue and brain fog.

Katy G.

I can tell when a lupus flare is coming on before it starts

1/5 (strongly disagree)

What are your lupus flare triggers? What symptoms do you experience first?

Triggers are largely too little sleep, too much sugar, too much stress, and not enough exercise.

Insomnia, fatigue, joint pain, nausea are my early symptoms. Oral ulcers, vomiting, worsening joint pain and rash are late symptoms.

Janell E

I can tell when a lupus flare is coming on before it starts

5/5 (strongly agree)

What are your lupus flare triggers? What symptoms do you experience first?

Tired, but the biggest thing is my face feels like it has/had fiberglass insulation rubbed all over it.

Jasrene

What are your lupus flare triggers? What symptoms do you experience first?

Usually I will start to have bad joint pain that occurs every day that starts earlier and earlier in the day. Followed by feeling fatigue.

Sylvia F.

I can tell when a lupus flare is coming on before it starts

3/5 (neutral)

What are your lupus flare triggers? What symptoms do you experience first?

Pain in joints
Swelling
Rashes spread on face

Cathleen T.

I can tell when a lupus flare is coming on before it starts

5/5 (strongly agree)

What are your lupus flare triggers? What symptoms do you experience first?

I get very tired. Then, I start to swell and have pain

Susie

I can tell when a lupus flare is coming on before it starts

3/5 (neutral)

What are your lupus flare triggers? What symptoms do you experience first?

Malaise, chills, and headache
Light butterfly rash

Lose the Stress

I can tell when a lupus flare is coming on before it starts

5/5 (strongly agree)

What are your lupus flare triggers? What symptoms do you experience first?

Stress compounded with heat exposure

Gail L.G.

I can tell when a lupus flare is coming on before it starts

4/5 (agree)

What are your lupus flare triggers? What symptoms do you experience first?

Sores in my mouth and throat. Triggers are being in the sun or heat and getting ready for anything important in my life.

Rose

I can tell when a lupus flare is coming on before it starts

1/5 (strongly disagree)

What are your lupus flare triggers? What symptoms do you experience first?

Fatigue
Fever
Joint pain
Headaches
Mouth/nose ulcers
Photosensitivity
Rash

Mike W.

I can tell when a lupus flare is coming on before it starts

4/5 (agree)

What are your lupus flare triggers? What symptoms do you experience first?

Stress and sunshine

Thanks to everyone who shared their experiences with lupus flares and triggers!

Interested in contributing to the LupusCorner Q&A Forum? Send an email to hello@lupuscorner.com to get added to the mailing list!

The post Flare Triggers and Early Lupus Symptoms appeared first on LupusCorner.

Low-Dose Naltrexone, Receptors, & Lupus

brett — Tue, 21 May 2019 13:54:40 +0000

Naltrexone is best known for helping treat drug and alcohol addiction. But, low-dose naltrexone treatment may also reduce lupus pain and inflammation.

Medications are designed to impact the body in a particular way, towards a particular goal. What they do in the body, the drug action, is known as pharmacodynamics. Generally speaking, there are 2 ways that a medication can cause a change. A medication can be an:

Agonist
1. Stimulate and activate receptors
Antagonist (blockers)
1. Stop agonists from activating receptors

Active receptors either trigger a particular response from the body or trigger the release of hormones (which in turn trigger the desired response). Receptors are located in the cell membrane or inside a given cell. The active ingredient in a medication attaches to the receptor using a specific type of chemical bond depending on the drug (covalent, ionic, hydrogen, hydrophobic).

How naltrexone works

Naltrexone is an opioid antagonist, so it attaches to the opioid receptors in the body. Unlike methadone or suboxone, naltrexone doesn’t do the opioid’s job. Instead, it blocks opioids from binding to these receptors, preventing them from having any effect.

Opioids and their receptors are involved in pain relief and feelings of pleasure. These feelings are very strong and are a part of why it can be very difficult to quit using opioids or alcohol (which is linked to the endogenous opioid system).

Naltrexone is usually taken in doses of 250-300mg. At that dosage, it prevents the pain-relieving and pleasant effects of drugs and alcohol by competing for, and then blocking, the opioid receptors in the brain. This reduces the positive effects of opioids or narcotics (though the precise mechanism of action is unknown) and some side effects.

Low-dose naltrexone and lupus

Small doses of naltrexone have been taken by people with lupus to help reduce pain and regulate the immune system.

We naturally produce neuropeptides that bond to the opioid receptors in the brain. They are endorphins and enkephalins. A lot of endorphins and enkephalins are produced during exercise, which is why exercise can be so good for Lupus Warriors in pain. They are also produced when you are injured, happy, relaxed, or believe that something can help you. (In fact, that is a part of how the placebo response works!)

At a low dose, naltrexone blocks a few of the opioid receptors in the body. This make the body less sensitive to the pain-relieving and other effects of endorphins and enkephalins. While the blocking isn’t usually enough for you to feel, it is enough for your body to detect. In response, the body tries to make up for it by producing more endorphins and enkephalins and, also, producing more opioid receptors. When the small amount of naltrexone wears off, the combination of higher amounts of natural painkillers and more-sensitive cells reduce the sensation of pain.

More than pain management

The small flood of endorphins and enkephalins also trigger receptors throughout the cells of the immune system and help to reign it in. Endorphins and enkephalins are a major part of how the immune system functions. They are involved in antibody creation and the ability of the body to hunt down and kill cancer cells. They might also help “police” the immune system, preventing it from attacking the body’s own cells inappropriately — the basis for autoimmune disease.

Low-dose naltrexone also interacts with glial cells, the “glue” of the brain, to stop pain. When these cells are activated, they help promote inflammation and are also involved in chronic pain, including fibromyalgia. Low-dose naltrexone may protect glial cells from irritation and prevent them from activating.

The research on low-dose naltrexone

A 2014 review in the journal Clinical Rheumatology reviewed the use of low-dose naltrexone (LDN). They looked at the trials that have been published so far and, despite finding mainly small trials with low sample sizes, they determined that LDN holds a lot of promise for people with lupus, and others who suffer from autoimmune disease and chronic pain.

Naltrexone is already approved by the FDA and safe at high doses – it’s been tested at up to 600mg a day for a week. Because it is given at such tiny doses, low-dose naltrexone will have fewer side effects than the usual dose while still providing a pain-relieving and immune-boosting benefits. As an anti-addiction drug, naltrexone doesn’t create dependence, either.

This means that low dose naltrexone can give Lupus Warriors an option for treatment that doesn’t increase disease vulnerability, has a low risk of side effects and helps with pain.

Researchers suggest that the best use of LDN may be before a flare (or during times of lower symptoms) or before serious damage to organs. This is because it may help to prevent flares or more severe symptoms. LDN is likely less effective at treating more severe or progressed lupus

Things to know before starting low-dose naltrexone

Naltrexone does have side effects. Normal dose or high dose naltrexone can lead to both minor side effects and more serious ones.

Minor side effects include:

nausea
decreased appetite
abdominal pain and/or constipation
headaches
fatigue
insomnia
dizziness
anxiety
depression

Major side effects to be aware of include:

confusion
hallucinations
blurred vision
vomiting
diarrhea

Low-dose naltrexone interferes with opioid medications, preventing them from working properly and making them less effective. Though low dose naltrexone is a painkiller, it will have the opposite effect if taken with opioid analgesics.

Low dose naltrexone also requires a functioning and healthy liver and kidney to be processed properly. If the organs are weakened, it can cause damage to those organs. Already existing organ damage from systemic lupus erythematosus or lupus nephritis can make it unsafe to take naltrexone, even at low doses.

Updating the regimen?

As with any medication or treatment, speak with your lupus treatment team to see if LDN may be right for you. If you aren’t taking an opioid painkiller and have a healthy liver and kidneys, it may be a good option for you.

Even with the risks, low-dose naltrexone is a potential aid for chronic pain and inflammation. It may be able to help keep flares at bay without leaving you open and vulnerable to other diseases, and with a low risk of side effects.

The post Low-Dose Naltrexone, Receptors, & Lupus appeared first on LupusCorner.