Lupus Body Rash Update

Hello lupus warriors!  If you have been following my blog, you may have seen that I have been dealing with chronic urticaria since October 2018.  It is now June and I am currently experiencing another flare up of this dreadful lupus body rash.  When it first appeared, I was told it was Shingles.  After numerous visits with my healthcare providers, they believe they are hives of some sort.

If you have not ready my first post on my lupus body rash,
you can read it and see pictures here!

This rash produces hive like lesions that sometimes break open (this seems to only happen when their are hive like spots on my hands).  Sometimes they itch like crazy and other times they are just painful.  I have had swelling beneath these hives and they are incredibly uncomfortable.

These lupus hives each last around 3-4 days and leave an area of discoloration on my skin after the hives have subsided.  Over the past few months, I have had multiple outbreaks of these chronic urticaria and have had numerous tapers of Prednisone and also shots of steroids to help minimize the hives and swelling that I have experienced.

The steroids seem to help lessen the swelling and seems to help the hives go away a little quicker, but as soon as I am finished with my prescription, they start popping back up again!

I wish that I could say that I have found out a direct cause of these hives over the last 8 months, but unfortunately, I have not been given an answer to that just yet!  Over the past few months, I have seen my PCP, urgent care, the ER, my allergist, and am currently scheduled for a second appointment with a dermatologist in a few days.  All in regards to this lupus body rash.

My allergy doctor felt they were not related to my allergies (even though I do have many allergies and have had throughout my life).  He felt that if they were allergic hives, they would not last as long as they do (4-5 days usually for each hive) or leave a discoloration on my skin either.

I have met with the dermatologist about 2 weeks ago during the worst outbreak of chronic urticaria I have had so far.  He believes they may actually be related to either lupus itself or that my lupus has caused me to develop a stronger sensitivity to an allergy.  He then gave me a shot of steroids and prescribed me 3 different medications that he believes could help.

He also took some blood work that he says will help us determine if these recurrent hives are due to lupus or allergies.  I have not received the results of this lab work yet, but am hoping that he has some answers at my next appointment.

I have been taken these 3 medications for the past 2 weeks with hopes they would prevent these hives from appearing again.  They are a variety of different histamine blockers.  Unfortunately, they have not helped much.  They also cause extreme drowsiness that is almost worse than the pain and itching I am getting from this body rash.

I bet most of you can understand the frustrations of not knowing a trigger or ‘why’ and the struggle to deal with side effects of medications.  It seems to be a common thing when you have lupus and it sucks.

The medications I have been prescribed for my recurrent lupus urticaria include:

 

-Cyproheptadine 4mg 2x a day

-Hydroxyzine HCL 10mg 1x a night

-Cimetidine 200mg 2x a day

 

medicine for chronic urticaria
medicine for chronic urticaria

 

I will definitely update you guys once I go to my next appointment.  I am hoping that we can find some answers as to what is causing these hives and if it has anything to do with lupus.  I am including a number of pictures below of this rash.  Sometimes, I break out in only one or two areas on my body.  Other times, it can be over 20 different hives and swelling.  I feel extremely fatigued, nauseated, and increased joint pain many times I have a larger outbreak.

The photos include various stages of these hives.  Some are light and when they first begin to appear.  Others are when the swelling is pretty bad.  Some of the other pictures are marks that remain 2 weeks after the swelling has gone.  I hope these pictures help someone else who may be going through something similar.  I had some readers reach out to my by email and they are experiencing similar hives.  Let me know if you have gone through something similar and have been able to find out what is causing them!

 




Lupus Doctors in Alabama

If you currently reside in Alabama and are looking for a lupus specialist, please see our comprehensive list below.  If you are currently seeing a lupus doctor in Alabama and have had great success with that doctor, please comment below and we can update our list.  This list is intended to provide lupus patients with easy access to locating a lupus doctor in Alabama.

We try our best to update this list frequently, but please let us know if any corrections should be made at info@lupuslyfe.com.

Lupus Doctors in Alabama
Lupus Doctors in Alabama

Lupus Doctors in Alabama

 

The UAB Division of Clinical Immunology and Rheumatology

The UAB Division of Clinical Immunology and Rheumatology has consistently been ranked as one of the top 12 clinical rheumatology programs in the country by U.S. News & World Report.

 

Rheumatology Associates of North Alabama

The RANA Rheumatologists in both our Huntsville and Florence locations are internal medicine specialists who have completed additional years of training and have sub-specialized in the care of patients with rheumatic diseases.

 

-Rheumatology Associates, P.C. 

The practice was founded in 1976 and consists of six board-certified and highly trained physicians that treat rheumatologic diseases. The physicians of Rheumatology Associates are affiliated with St. Vincent’s Hospital, Birmingham.

 

-Baptist Health

Baptist Health has partnered with UAB to bring the highest level of care to Central Alabama and the River Region. The UAB Multispecialty Clinic at Baptist Medical Center South joins nurses and staff from Baptist South with specially trained doctors from UAB to offer advanced care in many specialties, including rheumatology.

 

-Grandview Medical Group

At Grandview Medical Group, we specialize in the diagnosis and treatment of arthritis and other diseases of the joints, muscles and bones. Our rheumatology services include the treatment of: Arthritis, Autoimmune diseases, Pain disorders affecting joints, Osteoporosis, Gout, Lupus, Tendinitis

 

-East Alabama Arthritis Center

Some of the most common conditions seen in her practice include rheumatoid arthritis, lupus, Sjogren’s syndrome, scleroderma, osteoporosis, vasculitides, back disorders, joint disorders, and disorders of the connective tissue.

 




Apple Cider Vinegar and Lupus: Plantars Wart Natural Treatment

For many years, I heard and read about the amazing benefits of apple cider vinegar.  I honestly felt it was one of those old- school home remedies and that it really could not do the things people on the internet said.  Flash forward to 2019 and imagine my amazement when I realized the benefits apple cider vinegar had on various lupus issues.

When it comes to living with lupus, I have quickly realized that my body can become a medical mystery.  Things that most people do not have an issue with, my immune system does thanks to lupus.  I had an issue with a plantars wart on the bottom of my right foot about 2 years ago.

This plantars wart stayed for a long time due to lupus, even though I did not really understand that at first.  The plantars wart was on the pad of my right foot and started out looking like a small callous.  For a month or so it kept getting larger and then it began to hurt as well.  It was just kind of an uncomfortable feeling at first, but that soon changed.

The larger the plantars wart got, I became to become a little worried.  I went to the store and bought a can of the freezing wart remover.  I was excited to get rid of this disgusting looking wart.  I froze the wart according to the instructions on the back of the can.  I waited…and waited.  The plantars wart remained, unknowingly to me, because of my lupus.

Lupus has been known to cause the body to take much longer to fight off viruses and bacteria.  The same viruses and bacteria that a person without lupus could fight off quickly.

Soon, the wart was beginning to grow larger and larger.  It was almost the size of a quarter and I had begun to experience significant pain when walking, due to the pressure of the wart.  I bought another can of wart remover and once again, tried to freeze it at home.  Once again, this wart treatment failed for my lupus plantars wart.

I then went and bought a small jar of salicylic acid.  I had read a few posts online about how the salicylic acid would work better at getting rid of my plantars wart than the frozen spray I had previously used.  I applied salicylic acid to my wart a few times a week over the course of about a month.

It was working in the sense that it was definitely peeling layers of skin away from the wart, I had actually had a deep pit where it was!  But once again, my lupus caused my body to not be able to fight the plantars wart effectively.

My doctor finally told me that I was most likely going to need to have the wart surgically removed because of it’s size and the fact that it was not able to be treated.  I knew that if the wart itself hurt that bad to walk, I could only imagine the pain I would have once they dug it out in surgery.

I remember coming home and scanning Google for home remedies for plantars warts.  I came across numerous articles and forum posts about people soaking their foot in organic apple cider vinegar for a few times and that their plantars wart vanished.

 

apple cider vinegar lupus plantars wart
apple cider vinegar lupus plantars wart

 

I had spent quite a lot of money and time attempting to remove this plantars wart with special treatments from the store.  I really felt that there was not a legit way apple cider vinegar could remove my lupus plantars wart.

But hey, it was a lot cheaper than surgery….so I gave it a shot.  I went to a local store and purchased a big bottle of organic apple cider vinegar.  I soaked my foot for about 5 minutes 1x a day for a week straight.  After a week of soaking my lupus wart in apple cider vinegar, I could not believe it!  I could literally see the wart going away and new skin being formed.

At this moment, I truly believed that it was just coincidental and that the wart would still remain under the skin.  But when I began to notice the pain literally disappear over the next week, I was truly astonished!

This cheap bottle of apple cider vinegar had done what my lupus body couldn’t, it cured my plantars wart!  I now speak about the benefits of apple cider vinegar to anyone who will listen.  I tell them that you can purchase it for so cheap, that it truly is worth a try.

If your lupus causes you to fight off plantars warts slowly, you may want to try soaking your foot in some organic apple cider vinegar.  You may be surprised to see it starting to disappear soon after beginning this apple cider vinegar treatment.

Let me know if you have had any success using apple cider vinegar in your lupus wellness plan!




SPF Clothing for Lupus Warriors

Do you have lupus and struggle to get adequate SPF protection for the sun’s harmful rays?  If you are like a majority of people who suffer from photosensitivity with your lupus, you probably already work hard to wear a broad spectrum SPF sunscreen daily.

But were you aware that you can actually buy SPF clothing that can help protect your lupus skin from the sun? 

spf_uv clothing that protects your skin

If you find your photosensitivity is causing your lupus to flare, you may want to consider purchasing some high quality clothing that offers great SPF protection.  By eliminating the sun as a trigger, you may be able to better manage lupus flares.

We have created a list of 5 SPF clothing that can help lupus warriors protect their skin.

If you are looking for the best sunscreen for lupus, check out our post here!

 

1. Vapor Apparel Women’s UPF 50+ UV/Sun Protection Long Sleeve T-Shirt




Lupus Mouth Sores

One of the symptoms I get with lupus are mouth sores.  According to Kaleidoscope Fighting Lupus, Mouth sores (also referred to as oral lesions or ulcers) occur in approximately 40-50% of lupus patients and are one of the most common symptoms of lupus. While many resources online say that lupus related sores are mostly painless, I have had a few that were really painful!

I have always gotten canker sores in my mouth along my gums, tongue, and cheeks.  The mouth sores I get from lupus are usually in the roof of my mouth.  I have noticed a cycle to these lupus mouth sores in the roof of my mouth.  They usually start out without pain as a bump in the roof of my mouth.

I can usually feel when they start because it feels kinda swollen.  Almost like how it would feel if you stabbed the roof of your mouth with a sharp chip or something.  Taking a picture of the lupus mouth sore in the roof of my mouth usually appears like a red spot at this time.

 

Lupus mouth sore at the roof of my mouth.
Lupus mouth sore at the roof of my mouth.

 

Then it goes through a stage where I can actually feel the layer of skin sloughing off.  Once it starts doing this is usually when the lupus mouth sore starts to hurt.  If I were to see a picture of it in this stage, it looks more like how a canker sore would look with a white center and red ring around it.

I have used things like Blistex and Oragel to numb these mouth sores when they hurt.  Many lupus warriors I have spoken with also use a prescription grade “Magic Mouthwash” they get from their doctors.  I have not tried this, but have heard it works wonders for lupus mouth sores that are incredibly painful.

If you suffer from painful mouth sores and lupus, you should ask your rheumatologist about this numbing “Magic Mouthwash” to see if it could help you.

If you are looking for the type of Blistex I use on mine, you can find it here.

I like this brand because it offers an easy application process.  This professional strength gel really helps numb the mouth sore pain and with it’s soft brush, it makes application to the roof of your mouth really easy.
Feel free to comment any products or home remedies you use for your lupus mouth sores in the comments below.




Relax! 5 Natural Ways to Reduce Stress

Okay…okay!  We all hear that we need to relax sometimes, but are you taking your relaxation sessions seriously?  Chronic stress can induce a ton of problems within the body.

Check out these 5 natural ways to reduce stress and start relaxing!

 

05 ways to reduce stress naturally
05 ways to reduce stress naturally

Natural Stress Relief #1

Use Lavender

One of my favorite natural ways to reduce stress is by using lavender in my home and on my body.  Lavender is one of the oldest natural stress relievers in the world. Lavender is known to be uplifting, as well as soothing and helpful for reducing stress, anxiety, depression, and insomnia.

A study was conducted that measured the effects of lavender on stress in people that were being pricked with a needle.  Lavender aromatherapy in this study provided a significant decrease in the stress levels of those in the study compared to the others who received only oxygen and not lavender aromatherapy. In addition, it significantly reduced the pain intensity of needle insertion.

If you suffer from a chronic illness like lupus, lavender may be even extra beneficial if it is able to reduce anxiety and pain.

There are many ways that you can incorporate lavender aromatherapy into your natural stress relief wellness plan.

 

One of my favorites is by placing lavender sachets pretty much everywhere in my house!  The smell of lavender is so pleasantly soft and romantic, it literally is so comforting!

Another great way to use lavender is in your daily tea and lemonade!  You can purchase a bag of this amazing organic dried lavender flowers that are perfect for tea, baking, and lemonade!

 

 

 

Natural Stress Relief #2

Yoga

Many of us have heard about yoga and maybe even practiced poses over the years.  But did you know that regular yoga can help you keep your mind less stressed and your body more relaxed?

If you are not practicing yoga a few times a week and you are dealing with crazy amounts of stress, you may want to consider making yoga a more routine part of your life.

My favorite way to get a daily dose of yoga is on Youtube.  There are many awesome yoga instructors who can help you with building a healthy and de-stressing yoga routine.

I also recommend buying “The Yoga Bible“!  If you are serious about starting to relax your mind and body with yoga, you should check this book out!  They don’t call it “The Yoga Bible” for no reason!

 

 

Natural Stress Relief #3

Deep Sleep Music

Many times when we are dealing with a lot of stress, we find it difficult to sleep.  Our minds will race a thousand miles per minute and not calm down enough for us to fall asleep.

Some people with high stress levels can also experience periods of insomnia, making it even more difficult to rest our minds and bodies.

Using deep sleep music to help calm your mind can help you relax enough to fall into a sweet slumber.  This natural stress relief can provide refreshing sleep while only using the sweet sounds of nature.

I find nature to be extremely calming and relaxing.  If you like natural ‘white noise’ you should try out this music download of “101 Healing Sleep Songs with the Sound of Nature”. 

This music download provides a great length of nature sounds that can help you naturally relieve stress and help you get the sleep you have missing due to lingering stress.

 

 

Natural Stress Relief #4

Stress Management Device

 

Have you ever considered using a stress management device to help you monitor and work yourself through periods of stress?  Using a stress management device like PIP, is a great way to naturally relieve stress.  The PIP stress management device allows you to ‘visually’ see your stress levels as they are occurring.  Combined with feedback and training provided in their special apps, PIP will train you not only how to recognize stress but how to manage stress, be calmer and unlock a more relaxed and mindful state of living in your day to day life.

Using PIP takes only 5 minutes and is an enjoyable way to de-stress and refocus at home, in the office, or on the go naturally.

Natural Stress Relief #5

Meditation Coloring

Yes, even as an adult, coloring can bring great joy and calming effects into our hectic lives.  If you have not caved into the adult coloring movement, I encourage you to give this natural stress relieving art a try!  You may be pleasantly surprised at how mentally rewarding coloring can be when you are looking for ways to reduce stress naturally.

It is inevitable that our brains get overwhelmed at times by information overload, but it is essential for our health and well-being to be able to draw upon our own resources to deal with that stress.  “Anti-Stress: Meditation Through Coloring” is a great and affordable way to naturally reduce stress!

 

 





Is Lupus Genetic?

Lupus is a complex autoimmune disease that plagues millions of people around the world.  While lupus was first discovered and named in the thirteenth century by a physician named Rogerius.  He coined the term ‘lupus’ because it is the latin word for ‘wolf’ because he believed the malar rash resembled that of a wolf bite.  Over the years, many researchers and physicians have made great scientific stride in learning about lupus.

Although lupus was medically discovered generations ago, it is still lagging behind many other diseases in terms of research and treatment.  There is still an undecided community of medical professionals and scientific researchers on understanding what exactly causes lupus and if lupus is genetic or hereditary.  Today, we want to focus on the long held question, is lupus genetic?

What is Lupus?

 

Lupus is a systemic autoimmune disease that occurs when your body immune attacks your tissues and organs. Body systems that can be affected by inflammation caused by lupus includes the joints, skin, kidneys, blood cells, heart, brain, and lungs.

Lupus can be hard to detect because its sign and symptoms are often similar to those of other ailments. Facial rash which is the most significant sign of lupus looks like the wings of a butterfly unfolding across both cheeks occurs in many but not all cases of lupus.

Some people tend to develop lupus right at birth and can be triggered by injections, sunlight or some particular drugs. While there might be no cure for lupus, the symptoms can be controlled by appropriate treatment.

 

 

 

Lupus Triggers

While cases of SLE can be found worldwide, it has increased 10x over the last 50 years in Western countries.  While this post focuses on lupus genetics, it is important to understand the difference in triggers and genes.  While a person may have lupus genetic markers, it is usually a trigger that causes lupus to become activated. There are many environmental factors in which a person’s lupus can be triggered.

An overwhelming majority of lupus patients are women (an astonishing 9 out of 10 SLE patients), which has led some to believe in hormonal causes of lupus.  Other lupus researchers believe that physical and emotional trauma can also be the cause of lupus becoming active in a person.  Infections and viruses have also been named possible triggers for SLE.  There is also evidence of sunlight and chemical exposure being named as triggers for lupus.  Drug induced lupus occurs in around 10% of people diagnosed with lupus and there have been over 80 various medications responsible for drug induced lupus.

 

So…is lupus genetic?

Normal variations in various genes can affect the risk of developing SLE, and in most cases multiple genetic factors are thought to be involved.

Lupus is a complex disease that is possibly caused by several interacting features, which includes inherited genes, environmental factors (such as certain medications, severe exposure to ultraviolet rays of the sun, and likely viral exposures at key times), and female hormones.

Lupus is not contagious; it is an autoimmune disease which affects the functioning of your immune system. Therefore, lupus is not a viral or bacterial disease that can be transmitted to other people. Also, the disease is not transmitted through sexual intercourse, and it’s possible to have children even if you have lupus. An example is the pop singer Seal, who is diagnosed with discoid lupus but was still able to father three healthy children.

 

Is lupus genetic?
Is lupus genetic?

See lupus genetic markers here

Is Lupus Hereditary?

Lupus can be considered a hereditary disease. Recent studies carried out among lupus patients with an identical twin have revealed that there is a 25 percent possibility for the other twin to develop lupus. While for a patient with a fraternal twin, the chance of the other twin to get the disease is 2 to 3 percent.

Current evidence shows that genetics are known to play a role in the development of lupus, but there are several other factors to consider. There is a possibility of developing lupus even if you have no twin or relatives that don’t have any autoimmune disease.

No particular gene or group of genes have been proven to cause lupus, however when lupus appears in individual families, and when one of two identical twins has lupus, there is a high probability that the other twin will also be affected by the same disease.

Thus these findings as well as several others, strongly suggest that genes are involved in the development of lupus.

Sporadic which is the most common lupus cases develop means that no known relative has the diseases, however when lupus develops in people with no family history of lupus, it’s likely other family members have an autoimmune disease.

Certain ethnic groups such as people of African, Asian, Hispanic/Latino, Native Hawaiian, Native American, or Pacific Island descent have a higher possibility of developing lupus, which may be attributed to genes they have in common.

 

Conclusion

It can be concluded that while lupus is caused by certain factors such as environmental exposures (like medications, exposure to ultraviolet rays and also specific viral exposures at key times), and female hormones. Inherited genes have even known to cause the disease especially in a set of twin in which one is affected by the disease, there high chance that the other will develop the disease as well. Another instance is when an individual has some of his family members suffering from autoimmune disease, there is also the possibility such individual develop lupus disease.

 




Lupus Genetic Markers

Lupus is an autoimmune disease that causes chronic inflammation and destruction of multiple body organs. The antibodies get activated against its body organs and start destroying them. It has clinical heterogeneity which means that it has a variety of disease manifestations. It may involve one body organ in one person and multiple organ systems in the other. It shares its signs and symptoms with other autoimmune diseases like rheumatoid arthritis. Same is true regarding its severity.

 

Lupus and Genetics

Lupus is a multifactorial disorder with an elusive etiology; it has a strong association with multiple factors, genetic and non-genetic factors. Clinical studies have established that ultraviolet radiation, specific drugs(isoniazid, hydralazine, procainamide) and infections (Epstein-bar virus) can also lead to SLE (systemic lupus erythematosus).

Currently, there is an explosion of information regarding the possible role of genetic markers in this disease. Hundreds of studies are being done in many parts of the world to establish its genetic predisposition. This new evidence has profound effects on understanding the etiology and planning an effective remedy.

 

What makes Lupus a genetic disease?

Lupus has been found to exert some typical etiological features similar to the known hereditary disease. It has a clear predilection for affecting women in their young ages. It is so common in females that it is being labeled as a women disease. About 9 out of 10 lupus patients are young women. Apart from having a strong link with a specific age and gender, its runs in families too. About 10% of lupus patients have some relevant bearing the same disease. It was found to have a remarkable 40% concordance in monozygotic twins and 4% concordance in dizygotic twins. In addition, it is prevalent in certain races like Hispanic, African-Americans, and Asian-Americans. All of these factors make it clear that lupus has a strong genetic predisposition; faulty genes being the real culprit.

 

Study approaches for complex genetic causes:

In order to understand the genetic side of lupus, you must also have an idea about methods that are being applied to find the truth. Currently, two major approaches are being used:

  • Linkage studies
  • Association studies

 

Linkage studies involve gathering of families in which 2 or more than two persons have lupus. The genome of such families is scanned using microsatellite markers and their genetic makeup is studied. In association studies, one single gene is selected and hypotheses are formed against it. Most common practice is to study a single code using case-control cohort method. In order to refine results, trio design is being formed which includes testing of both patient and his/her parents. With the latest advances in technology, these methods are also getting quick, easy and improved.

 

 

lupus genetic markers
lupus genetic markers

 

Important Genetic markers in Lupus:

Before naming the exact genes related to lupus, it is important to know that lupus is a genetically complex trait. It means that several genes, coding regions or loci are involved in causing susceptibility in this disease. There are no single genes but a group of many loci implicated in lupus. There is also the possibility of their mutual interaction and interaction with hormonal or non-genetic factors. The important lupus genetic markers can be listed as:

  • HLA region genes:

HLA (human leukocyte antigen) genes are a topmost group of genetic markers that are strongly associated with lupus. These genes maintain the body immune system. The deletion of C4A allele has been found closely related to increased risk of lupus for many years. However, HLA region contains hundreds of genes and it has not been possible to pinpoint a single culprit gene yet. It is quite clear that HLA is the strongest genetic association of lupus among all other genes. HLA class 1&2 have been shortlisted and further studied for finding exact code.

  • FCγR 2A and 3A:

The Fc receptors for immunoglobin G protein are located at membranes of certain immune cells. These are responsible for the clearance of immune complexes and have been found to be linked with lupus. Several meta-analyses have shown their presence in patients of kidney lupus.

  • STAT4:

STAT4 is a newly discovered agent and polymorphism in these genes is related to lupus and rheumatoid arthritis both.

  • IRF-5:

Interferon regulatory factor 5 is a part of innate immunity and is said to increase the risk of lupus according to many cohort studies. Many groups of successive cohort studies established its possible role in causing lupus and other autoimmune diseases.

 

Conclusion

Unfortunately, no genetic marker or group of genes has been finally confirmed and are being further investigated. Much has to be done yet to solve the genetic mysteries of lupus. After years of studies, we have an idea about the possible culprit genes and their mechanisms. With advancing technology and refined tools, we should be hoping for some breakthrough in the future.




Best Youtube Videos for Beginners Yoga for Lupus and Fibromyalgia

One of my favorite and sometimes only way to stay active, is to do yoga.  Most people have heard of yoga and may think it is just some kind of health fad that does not provide any real benefit.  The truth is, if I do not do some sort of yoga or stretching daily, my body will get ‘stuck’ and it becomes a lot harder to get my body moving again.  I started looking on Youtube for various yoga videos aimed at those with fibromyalgia and other diseases with chronic pain.

Naturally, I was looking for videos aimed at those who were new to yoga.  Surprisingly, after doing many sessions over the last year or so, I am still on the beginner videos! I try to do some poses and stretches as soon as I wake up to help my joints and muscles ‘warm up’ for the day.  Then, I try to incorporate a few more stretches in the afternoon to keep my joints and muscles engaged.  While the mornings are the hardest times for me, I have found that doing even a few light moves will help my body make it through the day.

I always take things slow and modify certain poses and stretches to fit what needs I have for the day.  As many of you know, with lupus and fibromyalgia, you can be fine one day and not the next.  I use this unreliable body schedule to figure out which poses I will focus on for the day and where I may need to modify the exercises a little more.

For example, if  woke up to a stiff back and lower back pain, I would look for poses that can help with that symptom.  The next day, I could be having knee issues, so I would look for a new video that focuses on kneed pain.

The best part of this is that it can be tailored to your specific needs daily…and it’s completely FREE!

If you have been looking for a way to start becoming more active with lupus or fibromyalgia, I highly recommend checking out some of these beginner videos below.

If you find a channel you really like, make sure you subscribe to them on Youtube so that you can follow when they post new videos.

Yoga is a great way to stretch your body while also focusing on better breathing and a calmer mind.  Stress is a major flare trigger for me, so yoga really helps me to practice better mind health as well.

 

the best videos on youtube for
the best videos on youtube for

 

 

#1: Sleepy Santosha and GENTLE YOGA FOR FIBROMYALGIA

 

 

#2 YogaYin with YOGA for MUSCLE PAIN & FATIGUE & FIBROMYALGIA

 

#3 Shima Flow Yoga and Yoga for Fibromyalgia I Fibromyalgia Pain Relief I Exercise for Fibromyalgia

 

#4 Yoga With Adriene with Morning Yoga for Beginners – Gentle Morning Yoga

 

#5 Chaz Rough with Yoga for Fibromyalgia

 

#6 Dr. Swamy Venuturupalli, MD, FACR and Yoga For Lupus (entire video)

 

#7 Dr. Connie Jeon with Beginner’s Yoga for Lupus

 

#8 Yoga Lifestyle with Melissa with Yoga with Lupus

 

#9 Cody Kennedy and Beat Lupus Naturally

 

#10 The Yoga Room (Round Rock, TX) with Yoga for Fibromyalgia

 

 




Lupus Body Rash

Most of us are aware of the Malar rash and rashes we may get when exposed to the sun or even UV lights.  I experienced rashes after the sun that looked similar to “sun poisoning” (and was told that is what it was for many years).  Just recently, I have begun to develop wheals of incredibly itchy and burning spots that resemble hives (urticaria).  These spots pop up when I start flaring and are quickly resolved once I start on a high Prednisone taper.  The thing about these lupus hives are that they last longer than 24 hours compared to allergic hives you may have had in the past.

They also leave a residual dark spot once they have gone away.  I have had these pop up on my hands as well and actually blister.  These have left some very small scars.  This starts out as a circular rash that is incredibly itchy.  The first time these appeared, I was told that I have Shingles.  Most of them followed a dermatome, but I had a few on the other side of my body.  The ER doctor stated that because of lupus, it could cause a more widespread outbreak of Shingles.  I was given anti-virals.   The only ones that blistered were on my fingers.

When it appeared for the third time in a two month time frame, I went back to the doctor.  I was given a high steroid taper to help with the rash and reduce the flare symptoms I was feeling during this latest rash episode.  The steroids reduced the rash considerably within 24 hours of starting the taper.  I have not had the rash biopsied, but if it presents again I am going to have to do that.

 

See my June 2019 Lupus Body Rash Update HERE!

Here are pictures of my rash over the course of 3 separate outbreaks.

 

 

Lupus Rash or Shingles?
Lupus Rash or Shingles?

 

 

 

Lupus Body Rash- Itchy Hives and Welts - Shingles or Lupus?
Lupus Body Rash- Itchy Hives and Welts – Shingles or Lupus?

 

Lupus Body Rash- Itchy Hives and Welts - Shingles or Lupus?
Lupus Body Rash- Itchy Hives and Welts – Shingles or Lupus?

 

Lupus Body Rash- Itchy Hives and Welts - Shingles or Lupus?
Lupus Body Rash- Itchy Hives and Welts – Shingles or Lupus?

 

Lupus Body Rash- Itchy Hives and Welts - Shingles or Lupus?
Lupus Body Rash- Itchy Hives and Welts – Shingles or Lupus?

 

Lupus Body Rash- Itchy Hives and Welts - Shingles or Lupus?
Lupus Body Rash- Itchy Hives and Welts – Shingles or Lupus?

 

Lupus Body Rash- Itchy Hives and Welts - Shingles or Lupus?
Lupus Body Rash- Itchy Hives and Welts – Shingles or Lupus?

 

Lupus Body Rash- Itchy Hives and Welts - Shingles or Lupus?
Lupus Body Rash- Itchy Hives and Welts – Shingles or Lupus?

 

Lupus Body Rash- Itchy Hives and Welts - Shingles or Lupus?
Lupus Body Rash- Itchy Hives and Welts – Shingles or Lupus?

 

Lupus Body Rash- Itchy Hives and Welts - Shingles or Lupus?
Lupus Body Rash- Itchy Hives and Welts – Shingles or Lupus?

 

Lupus Body Rash- Itchy Hives and Welts - Shingles or Lupus?
Lupus Body Rash- Itchy Hives and Welts – Shingles or Lupus?

 

Lupus Body Rash- Itchy Hives and Welts - Shingles or Lupus?
Lupus Body Rash- Itchy Hives and Welts – Shingles or Lupus?

 

Lupus Body Rash- Itchy Hives and Welts - Shingles or Lupus?
Lupus Body Rash- Itchy Hives and Welts – Shingles or Lupus?

 

Lupus Body Rash- Itchy Hives and Welts - Shingles or Lupus?
Lupus Body Rash- Itchy Hives and Welts – Shingles or Lupus?

 

Lupus Body Rash- Itchy Hives and Welts - Shingles or Lupus?
Lupus Body Rash- Itchy Hives and Welts – Shingles or Lupus?

 

See my June 2019 Lupus Body Rash Update HERE!

If you have been following my blog, you may have seen that I have been dealing with chronic urticaria since October 2018.  It is now June and I am currently experiencing another flare up of this dreadful lupus body rash.  When it first appeared, I was told it was Shingles.  After numerous visits with my healthcare providers, they believe they are hives of some sort.

This rash produces hive like lesions that sometimes break open (this seems to only happen when their are hive like spots on my hands).  Sometimes they itch like crazy and other times they are just painful.  I have had swelling beneath these hives and they are incredibly uncomfortable.

These lupus hives each last around 3-4 days and leave an area of discoloration on my skin after the hives have subsided.  Over the past few months, I have had multiple outbreaks of these chronic urticaria and have had numerous tapers of Prednisone and also shots of steroids to help minimize the hives and swelling that I have experienced.

The steroids seem to help lessen the swelling and seems to help the hives go away a little quicker, but as soon as I am finished with my prescription, they start popping back up again!

I wish that I could say that I have found out a direct cause of these hives over the last 8 months, but unfortunately, I have not been given an answer to that just yet!  Over the past few months, I have seen my PCP, urgent care, the ER, my allergist, and am currently scheduled for a second appointment with a dermatologist in a few days.  All in regards to this lupus body rash.

My allergy doctor felt they were not related to my allergies (even though I do have many allergies and have had throughout my life).  He felt that if they were allergic hives, they would not last as long as they do (4-5 days usually for each hive) or leave a discoloration on my skin either.

I have met with the dermatologist about 2 weeks ago during the worst outbreak of chronic urticaria I have had so far.  He believes they may actually be related to either lupus itself or that my lupus has caused me to develop a stronger sensitivity to an allergy.  He then gave me a shot of steroids and prescribed me 3 different medications that he believes could help.

He also took some blood work that he says will help us determine if these recurrent hives are due to lupus or allergies.  I have not received the results of this lab work yet, but am hoping that he has some answers at my next appointment.

I have been taken these 3 medications for the past 2 weeks with hopes they would prevent these hives from appearing again.  They are a variety of different histamine blockers.  Unfortunately, they have not helped much.  They also cause extreme drowsiness that is almost worse than the pain and itching I am getting from this body rash.

I bet most of you can understand the frustrations of not knowing a trigger or ‘why’ and the struggle to deal with side effects of medications.  It seems to be a common thing when you have lupus and it sucks.

The medications I have been prescribed for my recurrent lupus urticaria include:

 

-Cyproheptadine 4mg 2x a day

-Hydroxyzine HCL 10mg 1x a night

-Cimetidine 200mg 2x a day

 

medicine for chronic urticaria
medicine for chronic urticaria

 

I will definitely update you guys once I go to my next appointment.  I am hoping that we can find some answers as to what is causing these hives and if it has anything to do with lupus.  I am including a number of pictures below of this rash.  Sometimes, I break out in only one or two areas on my body.  Other times, it can be over 20 different hives and swelling.  I feel extremely fatigued, nauseated, and increased joint pain many times I have a larger outbreak.

The photos include various stages of these hives.  Some are light and when they first begin to appear.  Others are when the swelling is pretty bad.  Some of the other pictures are marks that remain 2 weeks after the swelling has gone.  I hope these pictures help someone else who may be going through something similar.  I had some readers reach out to my by email and they are experiencing similar hives.  Let me know if you have gone through something similar and have been able to find out what is causing them!

 

 

Lupus Body Rash: August 2019 Update

 

If you have been following my blog for a while, you probably know that I have been battling a chronic rash since last fall.  You can see many of the hive like welts that I have been getting over the last year.  I have recently been seeing a dermatologist who tried many on many different antihistamines and increased the dosages many times over the last few months.  None of these seem to help this rash.  I have had to be on high Prednisone tapers many times over the last few months when the hives get really out of hand.  Currently, I have been diagnosed with Chronic Idiopathic Urticaria and currently they have not found a cause.

My current dermatologist has prescribed me a monthly shot for these chronic hives called Xolair.  Xolair is a biologic shot that is given once a month at the doctor’s office.  I have had one injection so far and it has not helped with my rash at all.  I want to say that it doesn’t seem as itchy as it once did, but maybe I have just gotten used to the itching?!  I was extremely fatigued and worn out for a day after the shot, much like how I was when I was on Benlysta last year.

This dermatologist does not believe its connected to lupus (my ANA came back negative the one time he tested it and he actually told me he was unsure if I even had lupus…insert eye roll here).  After finally making it to my rheumatologist, they have decided to refer me to a different dermatologist because they feel that the only real way to know what is causing these hives is to have them biopsied.

My rheumatologist also quickly dispelled the idea that I do not have lupus based off of the one ANA test my dermatologist conducted.  He told me that being on treatment (currently I am on methotrexate) and disease activity can reflect changes in ANA.  He also said that some tests are not as sensitive.  I had labs drawn at this appointment and my ANA and anti-DSDNA were a low positive this time around.  Over the 3 years since I have been diagnosed, my labs have gone up and down and even negative to positive over this time.  Whether this rash is because of lupus or something else, I’m hoping to find out more at my new dermatologist.  I would be lying if I did not say that it has been extremely frustrating trying to find a cause or even a trigger for this rash.  I feel like a biopsy or more testing may help provide further insight into this chronic urticaria.

I am still feeling systemic effects when these welts decide to pop up.  I am hit with an unbearable amount of fatigue and joint pain.  I am also having extremely painful and tender muscles.  I really just have no idea what is what anymore when it comes to all my health issues.  I’d like to say that once you get a lupus diagnosis that things make a lot more sense, but honestly, I am still having issues with symptoms and other weird things going on and have not been able to get any clear answers.

I will be seeing this new dermatologist in the next month and am hoping to have some answers.  HOPE seems to be a huge word a lot of lupus warriors seem to hold onto.    The good news is that I will FINALLY starting back on Benlysta injections next week.  I will post some of my recent lupus rash pictures below in case any of you are dealing with something similar.  It is weird how the rash can present itself in different forms and sizes and different locations on my body.  I hope to have a positive update soon!