A Country of Drug Seekers (???)

Posted on May 23, 2017 

By Steve Ariens, PharmD., (LINK TO ORIGINAL ARTICLE HERE!)pain is inevitable

(Editor’s Note—For the past several years, retired pharmacist Steve Ariens has shared his thoughts about chronic pain from the perspective of both a pharmacist and a husband whose wife suffers from chronic pain. I received an email from him this past weekend which started an interesting discussion about whether chronic pain patients are “giving up”. Both of us sense a frustration. I asked for permission to republish this column he originally posted on his own site, pharmaciststeve.com. Please read it and then share your opinion on the “state of chronic pain” these days.)

There are about 4.5 BILLION prescriptions filled in the USA every year – in community pharmacies and via mail order pharmacies. –  We have some 320 million residents—doing the math that means that each person would have 14 prescriptions filled each year.

Most of the prescriptions are filled by people who are “seeking  to improve their quality of life”.

This time of year a lot of those “drug seekers” are known as ALLERGY SUFFERs–they seek out antihistamines, cortisone nasal sprays and other substances used to control their allergy symptoms and improve their quality of life.

No matter what disease state or condition/syndrome a person is dealing with.. all too many will seek out some medication(s) to help to control the undesirable symptoms from the disease.. basically.. the person seeks out to improve his or her quality of life.

Some groups try to draw a line between themselves as being chronic pain patients and those who abuse opiates.

If you take a step backwards and try to look at those who take/use opiates and controlled substances.. and consider those that take them legally and those who take them illegally– because our society will not allow them to obtain them legally you ask” Are they all that different ?

Both are typically suffering from depression, anxiety and physical and mental “pain”. Both are trying to “improve” their quality of life… just what their own opinion/definition of “improve” may be can be quite different.

Those who are suffering from the mental health issues of addictive personalities.. they have demons in their head and/or monkeys on their back. They are just “seeking” to improve their lives by attempting to silence those demons and monkeys. Their “high” is getting some solitude from those things causing them mental pain.

Those that suffer from chronic pain are also “seeking” their own particular “high”, but their high is to calm the pain that torments them and keeps them from participating in a “normal family life”.

IMO, there are those in the chronic pain community that want to point fingers at those who our society has labeled as “addicts” and continue to point out “that is not us/me”… it is “them”..

People with mental health issues have always been “looked down upon” ..  just told to “suck it up and get over it”… our health insurance system has normally had poor coverage for seeing mental health professionals.

Is this part of the puritanical thread in our societal fabric that is still part of the “witch hunts” from the late 17th century in our country ?

Are those in the chronic pain community doing themselves any favors by agreeing with the DEA that those with mental health addictive issues are “bad people” and CRIMINALS?

Recently our previous Surgeon General declared that addiction is a mental health issue and not a moral failing http://www.huffingtonpost.com/entry/vivek-murthy-report-on-drugs-and-alcohol_us_582dce19e4b099512f812e9c

Does it make any sense that two different major Federal agencies and members of the Presidential Cabinet (DOJ & Surgeon General) are on opposite sides of the same coin… in dealing with people that are suffering from chronic conditions that opiates and controlled substance can help people deal with their health issues?

(Thoughts on this? And the state of chronic pain these days?—Please share in National Pain Report’s commentary section HERE: (NatPainReportCOMMENTS)

 

My Reply:

Hi Pharmacist Steve!

I’ve often wondered about the term “Self Medicating”. It’s encouraged if you have an allergy and let’s say, use benedryl and calomine. It’s fine if you take an aspirin or tylenol for a headache. It’s just dandy if you take an antihistamine for hay fever or alka seltzer for a stomach ache. Got constipation? Sure, take a laxative! No problem!
But live with chronic pain and want relief? Want to self medicate for that? OH NO, Now you’re labeled an addict!

Most of us chronic pain patients aren’t looking for a high. Like you said Steve, we’re just looking for quality of life, same as every “self-medicating” person is doing for their “acceptable” conditions. Studies say actual chronic pain patients don’t become mentally addicted…And so you gotta ask yourself..does a person with a bad cough get mentally addicted to their cough medicine they have to take to calm the cough?

In all honesty, I’m tired of the stigma attached to opiates and really tired of one set of people (who usually have never experienced chronic pain & have no medical training whatsoever) deciding for the rest of us what is good for us. We are individuals, should be reviewed individually and we should be allowed to live our lives the best way we can!

Sincerely, JJ (Lupus, TN+)

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Can’t Anyone Make a Sandwich Around Here?

sandwichI admit it.  I’ve been reduced to eating what I can reach some days.  If you get up & A) forget what you got up for, B) Get interrupted & asked for something else..and then C) find out your energy is gone after you do so and D) Sit back down…you likely have Lupus.

Let’s see- what can I reach from my bed-throne?  Coffee from this morning.  Warm.  At least it’s not cold.  Yet.  Old pop, peanuts in the shell (I choked on one last night) so no, a can of pringles….it’s not looking good.  There’s no sandwich, not old, not fresh, not EVER.

What is it that’s so hard about making someone a sandwich anyway?  Two pieces of bread and some meat and cheese slapped in the middle.  Heck- I don’t even need pesky condiments on it-that would take a real workhouse to figure out.  I’ll settle for just the basics.  But nooooooooo.  There’s no sandwich in reach, there’s never a sandwich and noone is going to make me one.  Not now.  It seems, not ever.

That’s what having Lupus is like.  You never know from one minute to the other when it will be too difficult to get up and make a sandwich..your body is tired from fighting itself…it’s fighting off something every day, every minute, big and small, and it’s draining.  Sandwich draining.  Stupid Lupus.

Are they thinking I’m a queen or princess wanting to be waited on-“Bring her majesty a sandwich right now”, or “Her majesty desires a sandwich”…& that they have been reduced to peasants of royalty, constantly being put upon to serve? Over a sandwich?  Really?  It’s that hard to slap those pieces of bread on either side of meat and cheese?

So they have said, “let her eat old chips and old pop and warm coffee” in their defiance of me and my lupus.  Is that fair?  What’s a Lupus Princess to do?  So I wrote this “decree” –

New Discoveries for Princesses With Lupus

1. Thou shall let others go out alone- What that really means is it’s a lot easier to care for your royal self if your only getting and taking care of your royal self and the peasants are not around.

2.  Thou shall criticize others to take excellent care of themselves or else.  Why, you ask?  Easy.  How can you expect them to take awesome care of the royal Lupus Princess if they are not healthy.

3.  Last on the decree.  Thou shall buy only lunchmeat, cheese and bread from the grocery store.  This insures that a sandwich can be made and only a sandwich can be made.

Lupus is alot like that.  It is unpredictable, One minute you feel fine, the next a nerve gets trapped, a rash begins, nausea comes on, heads ache, ears fill with fluid, digits swell or some form of inflammation causes symptoms below the surface- connective tissue is the padding that keeps the human body together.  When it is attacked, these symptoms come on immediately..it’s not like a cold that starts with a runny nose..or a flu that starts with a queasy stomach.  Lupus has no middle, no beginning and no end.

And that is what makes us Princesses (and Princes).  So take out your bells, find yourself new decrees and make this life with Lupus work for YOU.    JJ



As a caregiver, how do I handle the unpredictability of lupus?

The following is from Lupus.Org (The Lupus Foundation of America)

LIVING WELL WITH LUPUS

Lupus is a disease of flare and remission, meaning that disease may be active one day and quiet the next. Usually flares last more than a day, and usually an increase in medication dose, or a change of medication, will be necessary to suppress the symptoms.

Due to the unpredictable nature of lupus you may need to adjust your responsibilities and priorities at times. Neither you nor your loved one with lupus should feel guilty about these disruptions to activities that you cannot control, but it is important to find strategies to cope.

In order to prepare for unpredictability it is important to build a contingency plan in addition to communication, smart planning, and strong disease management skills.

Educate

  • Understand and accept the unpredictable nature of lupus.
  • Explain lupus to your support system of family, friends, and co-workers so they are aware how this can translate into changes in plans and daily activities.
  • Provide your support system with educational materials and trustworthy websites on lupus; these efforts will allow them to understand the disease and how they can help.

Communicate

  • Get to know the point of contact for each physician who treats your loved one for lupus and any related health complications. This will help you keep in regular touch with them and will help in case of an emergency.
  • Be sure your support system knows about changes in your loved one’s health status, perhaps through a website or email thread, so that you can efficiently update everyone.

Prepare

  • Schedule home delivery of groceries to ensure there is food in the house when you cannot make it to the store.
  • Arrange for medications and other supplies to be delivered from the pharmacy so that no prescriptions lapse, and your loved one always has the necessary supplies without you having to go get them.
  • Have a babysitter or house-sitter on call to look after children and household responsibilities in case of an emergency.
  • Establish a carpool group to make sure younger family members can continue to participate in their regular activities.
  • Educate yourself about the disease to better understand what situations or triggers have led to a flare in the past.
  • If you are employed at an office job, try to bring home important documents you are working on, and if possible, arrange for remote access to your work computer system. This will allow you to stay connected in case your loved one with lupus needs you to stay home with them or needs to be taken to an unexpected appointment.
  • Help your loved one to keep a list of current medications, laboratory test results, physician contacts, and emergency numbers. See the article on Emergency Preparedness for specific tips and suggestions.
  • Encourage your loved one, based on their age and health status, to engage in proper self-care and disease management skills. This can mean better awareness of their lupus and a more effective tracking of symptoms in times of flare.

A Win- Win – WIN! #LUPIES – YOUR ANA is VALUABLE!

antibodies

A Credible $ Opportunity for Lupus Patients!  No kidding!

I met Shannon Coates-Layne at Access Clinical / Access Biologicals over a year ago-and found we were uniquely connected. Why?

Through ‪#‎Autoimmune‬ Disease- & through ‪#‎LUPUS‬!

But not because Shannon has lupus. Because Shannon has an opportunity for patients with lupus.

One of the most important aspects of treating autoimmune disease is to catch it as soon as possible. And that means better TESTING for autoantibodies. Something Shannon knows alot about!

And it makes perfect sense! It makes sense that patients like you & me with autoimmune disease produce the very antibodies that companies like Access Biologicals NEED to make better tests! Our plasma is VALUABLE.

So here is a unique opportunity for us to help others. We can’t usually “give blood or plasma”-except for reasons like THIS, the ones Access uses. Shannon has explained the process to me in laymans terms-she is non-assuming and efficient. She can explain the process to you as well!

Through ‪#‎plasmaphoresis‬ we have a WIN-WIN-WIN situation! Access Biologicals pays us for testing and plasmaphoresis-and we get an fda approved treatment (plasmaphoresis) to help control our autoimmune symptoms! And Access Biologicals is one step closer to developing better autoimmune condition testing!

You can write Shannon here on this page if you are interested! I would do it in a heartbeat if I could! It’s really a neat opportunity-don’t let it pass you up!
Hugs, JJ

https://www.facebook.com/AccessClinical

“Ur In” Luck- UTI’s and Autoimmune Conditions

image

With Reactive Arthritis and Systemic Lupus-UTI’s are common.  So is inflammation in your kidneys (glomerular nephritis), bladder (interstitial cystitis), and pretty much any mixed connective tissue anywhere is fair game.

After many years of being in remission from lupus nephritis (chronic kidney disease stage 3b)- I seem to be having issues again.  My doc thinks kidney infection but I’m not convinced.   With lupus it’s possible to have a crazy amount of white blood cells in your urine but no signs of infection (fever, vomiting, no nitrates or bacteria in your urine, etc) and that can mean simply destructive inflammation.

In cases like mine (and I’m certainly not alone with this issue) -further testing is indicated.  That flank pain and lower pelvic pressure can have several causes.  This coming up week I’ll have a cat scan and kidney biopsy and that will tell us more.

So if your having many UTI’s without bacteria showing up-your likely looking at inflammation!

Here’s some info on pelvic inflammatory conditions:

Interstitial Cystitis Facts:
From medicinenet.com

PBS/IC is an inflammatory disease of the bladder that can cause ulceration and bleeding of the bladder’s lining and can lead to scarring and stiffening of the bladder.The symptoms of PBS/IC are pelvic pain as well as urinary frequency and urgency.

PBS/IC has a variable clinical course, meaning that symptoms can appear and disappear over time. Moreover, the intensity of symptoms varies among individuals and even within the same individual over time.

The cause of PBS/IC is unknown, but abnormalities in the leakiness or structure of the lining of the bladder are believed to play a role in the development of PBS/IC.

The diagnosis of PBS/IC is based on the symptoms, an abnormal potassium sensitivity test (PST), and elimination of other conditions that may be responsible for the symptoms.

Treatment for PBS/IC most commonly utilizes heparinoid drugs to help restore integrity of the bladder lining along with other oral medications. Bladder distension and intravesical drug therapy are other treatments that may provide relief in PBS/IC.

Kidney Inflammation Facts:

There are different kinds of kidney inflammation.   Here are a few from Healthline.com:

Think of your kidneys as your body’s filters, a sophisticated waste removal system comprised of two bean-shaped organs. Every day, your hard working kidneys process 200 quarts of blood in a day and remove two quarts of waste products and excess water. If the kidneys suddenly become inflamed, you will develop a condition called acute nephritis. Acute nephritis has several causes and can lead to kidney

Interstitial Nephritis

In interstitial nephritis, the spaces between the renal tubules that form urine become inflamed. The kidneys swell from the inflammation.

Pyelonephritis

Pyelonephritis is an infection in the bladderthat travels up the ureters and spreads into the kidneys. Ureters are two tubes that transport urine from each kidney to the bladder, the muscular organ that holds urine until it passes out of the body through the urethra.

Glomerulonephritis

This type of acute nephritis produces inflammation in the glomeruli. Glomeruli are the tiny capillaries that transport blood and behave as filtering units. Damaged and inflamed glomeruli may not filter the blood properly.

In any case, with autoimmune disease be aware of your symptoms,  get regular urinalysis and blood work done, and see your doctor regularly.   🙂

Here’s a good video on Glomerulonephritis-

Glomerulonephritis:

Going Down the TUBES with “Reactive Arthritis”-

Fallopian tubes that is!

salpingitis

Salpingitis-Inflammation in Fallopian Tubes

Uveitis

See the red circle around the color part of my eye (the iris) . That indicates uveitis-which is inflammation of the iris. There are two types, posterior & anterior. Mine is anterior, which is the one that causes lesser damage.

20140811_165011

Conjunctivitis- Every six weeks-sometimes it’s so bad I have to rest my eyes with cold compresses for two or three days at a time. Ya never realize how valuable your sight is until something interferes with it!

julie wbc eyesjulieeyestwo

 Spondyloarthropathy.  It’s flared much more often than it used to.  Dx’d with it Dec 2012.  Positive for the HLA-B27 Antigen.  Was a matter of genetics and environment & I got LUCKY!  While on immunosuppressants an infection slipped in-and although the infection was just a matter of noticing unusual blackened stool and some unusual stomach and colon-type discomfort-what came on in the following weeks that December was horrendous.  Two full weeks of full blown sacroilliitis.  I could not sit up or get up on my own.  I could not lay on either side.  You could not touch my lower hips (si joints) without me yelping like a hurt puppy.  Walking was SO painful I could not walk at all for almost a week.  I’ve had recurrent flare ups of varying degrees of sacroilliitis since, but it has never gotten as bad as it was that December.  I get regular cortisone shots into my si joints and L5-S1 spine-and it is my saving grace!  TY Dr. Todd Turley.  Not only does he keep me mobile by giving me cortisone & glycol right into the plantar of my feet for plantar fasciitis, but he keeps the really nasty can’t walk wanna cry sacroilliitis AWAY.  TY TY TY!

I’ve got the Reiter’s Trifecta AGAIN.  With the addition of a new symptom-salpingitis.  Aka-inflammed fallopian tubes.  Hot lower insides on fire aching period-like cramping sort of pain.  Sex is very painful and there is a slight discharge that is uncomfortable.  The Reactive Arthritis Trifecta – First came sacroilliitis, then came conjunctivitis (no uveitis this time, thank goodness!) and now for the finale-salpingitis.  Yep-that’s how my spondyloarthropathy rolls.

Approximately every six weeks I get conjunctivitis.  It’s a real PITA (pain in the as_)  Dry eye drops are usually sufficient unless it’s uveitis (and I always know-you can tell the difference in the way it feels and looks).  And for uveitis I take prescription steroid eye drops.  One time my opthamologist had to give me shots in my EYES.  That was horrible.

The fallopian tube inflammation requires surgery to have the tubes out and I’m waiting for a surgery date and insurance approval now.  I hope it comes soon.  It’s very stubborn and I’ve been a bit crabby.

For all you guys out there with Lupus-I “get” YOU and identify with YOU!  Reiter’s is a man’s disease-so I know how you feel when you tell people you have systemic Lupus.

I will likely need to be on biologicals according to my rheumatologist.  I avoided them so far-I’ve been on Cellcept (plaquenil, meloxicam & prednisone) for Lupus-which up until now has worked out pretty well for me.  Definitely minimizing my photosensitivity, hives, rashes, and other lupus symptoms.  I’ll update this post when I’m on biologicals so you can see what works for me.  Ya never know when someone will say- “Eureka!  Maybe that’ll work for me too!”

Personal Note:  How the heck an infection gets into your si joints and effects your EYES, joints and fallopian tubes boggles my mind.  You’d think with systemic lupus I’d be very coherent of how the immune system can attack ITSELF.  But these “targeted” attacks are really bizarre to me., lol.

I likely haven’t said so lately, but if you made it this far down the post, I thank you for reading it.  If even one person sees it and says “Me Too” and can get to feeling that they are not alone with these strange autoimmune diseases, then it’s all worthwhile.

SUN is out, Wind in My Face-Absolutely Awful! -Life Above Zero-

 

lupusgrumpycat

Not only vampires go out at night-LUPUS patients do too!

While these things are true-UV Hypersensitivity is prevalent with Systemic Lupus Erythematosus – it doesn’t have to mean ISOLATION in this day & age!

With lupus, our bodies aren’t just “allergic” to itself (white blood cells attacking healthy tissue by mistake causing central nervous system damage, kidney damage, skin damage including hives, solar urticaria, discoid, pemphigoid, and cutaneous porphyria rashes, lesions & vasculitis, inflammation around the heart-pericarditis, around the lungs-pleurisy, blood disorders (clotting issues and anemia), nerve damage and a myriad of other symptoms and conditions.  So what do you do?  You manage.  You CONFORM!

I can tell you what I do-

My windows have double black-out drapes.  I go out mostly at night only.  After many years of neutragena helioplex 360 and 120 proof sunscreen-rashes and lupus flares anyway-I discovered the true way to be less sick is to just plain STAY INSIDE.  In the dark.  No UV lights, no sun at all.  Is it isolating?  I don’t think so thanks to modern technology-but that’s me-it’s all in how you see it.  “Housebound is no worse than earthbound it’s what you make of it.”

Here’s some of my rashes from UV-if you had these I’m sure you’d come to the same conclusion!

discoid-rash-400x400 malarrash - Copy IMG_20130130_164207(4) headrash1 juliefacerash vasculitislegs vascularlesion june2013rashjulieshingles1

That would drive ya inside-yes?  LOL..And my point?  It doesn’t have to BE isolating or feel isolating..

The internet has given us many advances-immediate chat, visuals like skype, and the ability to find info, give info, and reach out without having to take one step outside into that debilitating sun.  I can watch my son’s chorus concert from bed, talk to people on the other side of the world-make appointments, talk to doctors and do relatively anything but reach out and touch someone!  So isolating?  No-it’s the opposite for people like me!!!  It’s FREEING!  And I’m thankful for it everyday!  Even after a small TIA June 2012-I was relatively a “head in a bed” while I recouped…but I was happy and I was anything but bored or isolated!  So again-Housebound is what you make of it!  Is a wheelchair a good or a bad thing?  Ask someone who is in one?  It’s a great thing!  It’s mobility!  Just a different way-and so what!

On a personal note – I enjoy watching reality shows-specifically shows about Alaska-the last frontier.  Why- I wonder?  Because we LUPUS patients share something with these people-we are isolated.  We are literally in the dark most of the time.  Plus of course-they are exciting!  There’s gold miners, hunters, and people who are solely responsible for their own food and water sources-and live in the most extreme of circumstances.  And they succeed.  They flourish.  They give us HOPE.  They tell us that life is precious-and to be lived-  There is a woman you might have all seen-Susan Aikens on a National Geographic show called “Life Below Zero”, who owns and manages a remote fueling station near the Arctic Circle-she is alone 8 months of the year.  She is the strongest, toughest woman I have ever seen.  She was attacked by a bear, left for dead, sewed up her own head, hunts for food and braves temperatures so freezing- she doesn’t just persevere-she flourishes.   I designed the pic of Sue & Alaska to say Thank You for the Inspiration!

lighthousesusanaikens

Pic of Susan Aikens from “Life Below Zero” on National Geographic channel

Susan said that she knows due to her remoteness and the difficulty especially in winter for planes and helicopters to reach her that she and people like her understand that if something happens, if they get hurt-that there is always the chance that noone will come and they will die out there.  People with chronic illness know the same fear.  It is freeing to accept what might happen-what could happen-it takes the fear out of it!  Still-I think Susan has another message-one she might not even realize-

When Susan Aikens was asked why she is alright to stay out there in remote Alaska alone and be isolated so much of the year-she said it is because when she was little all she wanted to be was a lighthouse keeper.  Well-she IS a lighthouse keeper.  She’s a beacon of what life without fear means for those with chronic illness.  She’s an inspiration.

“We are told to let our light shine, and if it does, we won’t need to tell anybody it does. Lighthouses don’t fire cannons to call attention to their shining- they just shine”., Dwight L Moody
from Wiki on Solar Urticaria:

Solar urticaria (SU) is a rare condition in which exposure to ultraviolet or UV radiation, or sometimes even visible light, induces a case of urticaria or hives that can appear in both covered and uncovered areas of the skin.[1][2] It is classified as a type of physical urticaria.[3] The classification of disease types is somewhat controversial. One classification system distinguished various types of SU based on the wavelength of the radiation that causes the breakout; another classification system is based on the type of allergen that initiates a breakout.[4][5]

The agent in the human body responsible for the reaction to radiation, known as the photoallergen, has not yet been identified.[6] The disease itself can be difficult to diagnose properly because it is so similar to other dermatological disorders, such as polymorphic light eruption or PMLE.[7] The most helpful test is a diagnostic phototest, a specialized test which confirms the presence of an abnormal sunburn reaction. Once recognized, treatment of the disease commonly involves the administration of antihistamines, and desensitization treatments such as phototherapy.[1] In more extreme cases, the use of immunosuppressive drugs and even plasmapheresis may be considered.[8]

The initial discovery of the disease is credited to P. Merklen in 1904, but it did not have a name until the suggestion of “solar urticaria” was given by Duke in 1923.[6][9] However, their research contributed to the study of this uncommon disease. More than one hundred cases have been reported in the past century.[10]

from the Lupus Foundation of America on Lupus Rashes:

Approximately two-thirds of people with lupus will develop some type of skin disease, called cutaneous lupus erythematosus. Skin disease in lupus can cause rashes or sores (lesions), most of which will appear on sun-exposed areas such as the face, ears, neck, arms, and legs.

40-70 percent of people with lupus will find that their disease is made worse by exposure to ultraviolet (UV) rays from sunlight or artificial light.

A dermatologist, a physician who specializes in caring for the skin, should treat lupus skin rashes and lesions. He or she will usually examine tissue under a microscope to determine whether a lesion or rash is due to cutaneous lupus: taking the tissue sample is called a biopsy.

The Forms of Cutaneous Lupus

Lupus skin disease can occur in one of three forms:

  1. Chronic cutaneous (discoid) lupus
  2. Subacute cutaneous lupus
  3. Acute cutaneous lupus.

Chronic cutaneous lupus (discoid lupus) appears as disk-shaped, round lesions. The sores usually appear on the scalp and face but sometimes they will occur on other parts of the body as well.

Approximately 10 percent of people with discoid lupus later develop lupus in other organ systems, but these people probably already had systemic lupus with the skin rash as the first symptom.

Discoid lupus lesions are often red, scaly, and thick. Usually they do not hurt or itch. Over time, these lesions can produce scarring and skin discoloration (darkly colored and/or lightly colored areas). Discoid lesions that occur on the scalp may cause the hair to fall out. If the lesions form scars when they heal, the hair loss may be permanent.

Cancer can develop in discoid lesions that have existed for a long time. It’s important to speak with your doctor about any changes in the appearance of these lesions.

Discoid lupus lesions can be very photosensitive so preventive measures are important:

  • Avoid being out in the sunlight between the hours of 10 a.m. and 4 p.m.
  • Use plenty of sunscreen when you are outdoors
  • Wear sun-protective clothing and broad-brimmed hats
  • Limit the amount of time spent under indoor fluorescent lights

Subacute cutaneous lesions may appear as areas of red scaly skin with distinct edges or as red, ring-shaped lesions. The lesions occur most commonly on the sun-exposed areas of the arms, shoulders, neck, and body. The lesions usually do not itch or scar, but they can become discolored. Subacute cutaneous lesions are also photosensitive so preventive measures should be taken when spending time outdoors or under fluorescent lights.

Acute cutaneous lupus lesions occur when your systemic lupus is active. The most typical form of acute cutaneous lupus is a malar rash–flattened areas of red skin on the face that resemble a sunburn. When the rash appears on both cheeks and across the bridge of the nose in the shape of a butterfly, it is known as the “butterfly rash.” However, the rash can also appear on arms, legs, and body. These lesions tend to be very photosensitive. They typically do not produce scarring, although changes in skin color may occur.

Other Skin Problems

There are several other conditions that can occur with lupus:

Calcinosis is caused by a buildup of calcium deposits under the skin. These deposits can be painful, and may leak a white liquid. Calcinosis can develop from a reaction to steroid injections or as a result of kidney failure.

Cutaneous vasculitis lesions occur when inflammation damages the blood vessels in the skin. The lesions typically appear as small, red-purple spots and bumps on the lower legs; occasionally, larger knots (nodules) and ulcers can develop. Vasculitis lesions can also appear in the form of raised sores or as small red or purple lines or spots in the fingernail folds or on the tips of the fingers. In some cases, cutaneous vasculitis can result in significant damage to skin tissue. Areas of dead skin can appear as sores or small black spots at the ends of the fingers or around the fingernails and toes, causing gangrene (death of soft tissues due to loss of blood supply).

Hair loss can occur for other reasons besides scarring on the scalp. Severe systemic lupus may cause a temporary pattern of hair loss that is then replaced by new hair growth. A severe lupus flare can result in fragile hair that breaks easily. Such broken hairs at the edge of the scalp give a characteristic ragged appearance termed “lupus hair.”

Raynaud’s phenomenon is a condition in which the blood vessels in the hands and/or feet go into spasm, causing restricted blood flow. Lupus-related Raynaud’s usually results from inflammation of nerves or blood vessels and most often happens in cold temperatures, causing the tips of the fingers or toes to turn red, white, or blue. Pain, numbness, or tingling may also occur. People with Raynaud’s phenomenon should try to avoid cold conditions, and, if necessary, should wear gloves or mittens and thick socks when in an air-conditioned area.

Livedo reticularis and palmar erythema are caused by abnormal rates of blood flow through the capillaries and small arteries. A bluish, lacelike mottling will appear beneath the skin, especially on the legs, giving a “fishnet” appearance. Like Raynaud’s phenomenon, these conditions tend to be worse in cold weather.

Mucosal ulcerations are sores in the mouth or nose or, less often, in lining of vaginal tissue. These ulcers can be caused by both cutaneous lupus and systemic lupus. It is important to differentiate lupus ulcers from herpes lesions or cold sores, which may be brought on by the use of immunosuppressive drugs. Lupus ulcers are usually painless and signs of inflammation will show up in the biopsy.

Petechiae (pah-TEE-kee-eye) are tiny red spots on the skin, especially on the lower legs, that result from low numbers of platelet in the blood, a condition called thrombocytopenia. Although thrombocytopenia is common in lupus, serious bleeding as a result of the low number of platelets usually does not occur.

Treating Cutaneous Lupus

The medications used to treat lupus-related skin conditions depends on the form of cutaneous lupus. The most common treatments are topical ointments, such as steroid cream or gel. In some cases liquid steroids will be injected directly into the lesions.

A new class of drugs, called topical immunomodulators, can treat serious skin conditions without the side effects found in corticosteroids: tacrolimus ointment (Protopic®) and pimecrolimus cream (Elidel®) have been shown to suppress the activity of the immune system in the skin, including the butterfly rash, subacute cutaneous lupus, and possibly even discoid lupus lesions.

In addition, thalidomide (Thalomid®) has been increasingly accepted as a treatment for the types of lupus that affect the skin; it has been shown to greatly improve cutaneous lupus that has not responded to other treatments.

Preventative Treatments

  • Avoidance/protection from sunlight and artificial ultraviolet light
  • Seek shade
  • Sunscreens — physical and chemical

Local/Topical Treatments

  • Corticosteroid creams, ointments, gels, solutions, lotions, sprays, foams
  • Calcineurin inhibitors
    • tacrolimus ointment (Protopic®)
    • pimecrolimus cream (Elidel®)

Systemic Treatments for Mild to Moderate Disease

  • Corticosteroids — short term
  • Antimalarials
    • hydroxychloroquine (Plaquenil®)
    • chloroquine (Aralen®)
    • quinacrine (available from compounding pharmacies only)
  • Retinoids
  • synthetic forms of vitamin A—isotretinoin (Accutane®), acitretin (Soriatane®)
  • diaminodiphenylsulfone (Dapsone®)
  • Sulfones

Systemic Treatments for Severe Disease

  • Corticosteroids — long term
  • Gold
    • oral—auronofin (Ridura®)
    • intramuscular—gold sodium thiomaleate (Myochrisine®)
  • Thalidomide (Thalomid®)
  • Methotrexate
  • Azathioprine (Imuran®)
  • Mycophenolate mofetil (CellCept®)
  • Biologics
  • efalizumab (Raptiva®)

It should be noted that most of the above treatments are not approved by the Food and Drug Administration for cutaneous lupus.

The Lupus Foundation of America would like to thank Richard Sontheimer, MD, for this information.

Medically reviewed on July 12, 2013