Hey! Chronic Pain Patients- Fight Back!

painknuckles

My little-ole story really isn’t much.  There’s lots of pain patients just like me!

What matters is that my quality of life has improved thanks to a combo of meds & procedures. and I’m not alone! Our meds are working!  None of us expects to be pain-free. But managing is power!

Since I was recently asked my personal story- I’ll do my best not to bore you’all and share it here too.

I’m a lupus patient with multiple nerve entrapments from inflammed blood vessels and nerves-which leads to recurring uveitis, scleritis (painful eye issues), trigeminal neuralgia (cranial neuropathy), multiple peripheral neuropathies (ulnar, radial, medial & pereanol) that flare up..also degenerative discs, narrowed cervical spine issues, a slipped vertebrae at S1 L2 that causes sacroillitis, severe plantar fasciitis, extreme photosensitivity from lupus (UV causes hives and rashes-the sun is not my friend) osteoarthritis, tons of mouth sores & nose sores from lupus, and I’m sure I’m forgetting a few.

Oh yeah, brain fog too from cns issues from lupus, but nothing major. Like my father used to tell me, “Well how is everything ELSE?” LOL- “Fine” I’d say! Actually I’d have to say my achilles heel is actually my heel- I’ve had 3 nerve surgeries and a toe amputation to try and stop the horrid pain in my right foot- feels like someone is lighting a match under my toe (not a neuroma-but a pereanal nerve entrapment-who knew! lol) and like someone is cracking me on top of the foot with a ruler. Relentlessly. Sometimes for days. Only relief is strong pain medication and hot water beating down on it.

That all said (and it was a whopper, I know) you get the gist of it. I am not afraid to tell anyone that I take 23 meds a day (mostly for lupus) but that it includes the max of tramadol (2 50mg every 4 hours-8 daily) and that it pretty much works in the background-(I don’t even know it’s there!) and I take opiates 4 times a day for short term pain. I’d like to add that I have taken this same medication, same dosages for almost TWENTY years without an increase or a need for one & that I worked a full time job THANKS TO THE MEDS for most of those years.

I’ve worked with many doctors, and felt the sting of the stigma that comes with being a chronic pain patient. Unruly, judgemental pharmacists & techs who have stamped VOID on my prescriptions to pain docs that welcomed me to their office by saying, “if you’re here to get something to feel good you might as well walk out that office door right now”.

I’ve signed pain contracts, unsigned pain contracts, had surgeries and procedures and I completely understand if you are going through a hard time finding a pain management doctor who truly understands you!  You gotta kiss a lot of doctor frogs before you find a prince!  Don’t be afraid to find one that you have the right fit with!

My honest opinion- pain doctors are like night and day. Some are sympathetic, some empathetic, some not so much and some down right mean spirited and can treat you like a criminal or addict looking for a fix.

Lucky for me though I’ve had an anesthesiologist pain doc who gives me epidurals, radio-frequency ablations, cortisone shots and has prescribed me the pain meds that work for me for over TEN YEARS now!  He’s given me quality of life and I am grateful for his expertise.  He’s offered me procedures I didn’t even know existed!  Thanks to him I am mobile.  I had plantar fasciitis so severe I couldn’t walk without sleeping in an orthotic PF boot all night just to get a few hours to be able to be on my feet., and low and behold my favorite doc who was treating me for cervical spine issues said, “Hey, I can FIX THAT!”  WHAT?  And he DID!  Regular cortisone shots right into the connective tissue on the bottom of my feet was a miracle cure!  NO kidding!  Goes to show that you never know what one doctor knows that another one doesn’t!

A good doctor can make all the difference. I can’t say that enough to people who ask me. If you aren’t getting results with your physician, talk to him or her and if that doesn’t work- FIRE THEM and find another.

Chronic pain patients who are able to function thanks to medications aren’t who the DEA and FDA should be worried about. (why make the honest ones suffer?).. go out and catch the drug dealers of the illegal drugs and make sure teens are informed about the danger of taking drugs. Leave the chronic pain patients alone, especially the ones who are functioning thanks to the medications that give them quality in their lives. Most studies I’ve read say that true chronic pain patients do not become addicted.

Kudos to all you do to get our voices heard!

If you want to help out-here’s a petition shared with me from JGF Advocacy Project: CHRONIC PAIN PETITION-SIGN HERE!

And here’s a link to JGF Advocacy Group on fb:  Pain Is Not Addiction FB Site!

Sincerely, JJ

WHAT’S YOUR STORY?  Plz share in comments!

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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+)

How To Find a New NORMAL & Change Your Game!

otherside
What you once took for granted (walking, working, taking care of family & yourself) can suddenly become difficult when faced with any chronic disease & chronic pain.  What you once did effortlessly can start to look like a mountain to climb when managing illness-so what do you do?

Well, first you examine your status honestly.  You assess your abilities. Here’s some of those questions you may be asking yourself-and some suggestions to help you find a NEW GAME to make them happen!  After all, life isn’t going to stand still-the kids still need to eat, the house still needs cleaning & stocking, and very likely-this means you MUST adapt.

FINANCIALLY SPEAKING!

Can you work, but not reliably?  You may not be able to punch a clock any longer-but you’ve got some energy and love for keeping some part of your career in your life? You HAVE OPTIONS but you must make them happen!  They aren’t going to come to you-you must prepare!

You may want to apply for social security disability.  You are entitled to the money you put into the system if you can no longer work or earn what you used to because of chronic illness.  You can apply even if you still work as long as you do not make over $1020 monthly. It’s time-consuming but do-able.  You can apply online at http://www.ssa.gov.  You don’t need a lawyer to apply-and most lawyers actually want to wait until you get your first denial to take your case-so applying is the first step.  Remember-this isn’t an easy or immediate solution.  This is thinking ahead for your future-it may take up to 3 years to get approved (no guarantees either) but stay vigilant. It’s usually a matter of WHEN, not IF that you will be awarded SSDI. So hang in there-and get started!

Now that your thinking long term-you can think short term.  What about NOW, what about the sick days, the doctor appointments, the unreliability factor in your work or job performance & attendance.  Well-I suggest take it head on.  Ask for part time and keep records of your physical health and lack of work ability.  This will be important to your SSDI case if you have applied.  

Asking for less hours is a necessary tool to keep your stress levels down and your disease symptoms minimized.  It’s a MUST.  You may end up surprised that working less hours brings you better health management.  If you can take your work home, ASK!  You never know unless you bring it to your boss’s attention-if you are working in an occupation that you can be productive from home-making your own hours can take away that issue of not being able to do a 9 to 5!  It’s always worth a try!  If possible, you may want to consider working as an independent contractor-this way you can continue your work at your own pace-and from home, where it can be much easier to manage your health, it keeps you in the career you love, and continues to bring in an income!  If there was ever a time or reason to give being independent a shot, THIS IS IT! If the company you work for or your occupation doesn’t offer a “work from home” alternative-maybe spend this time looking for one.

For immediate financial needs if you reduce your hours or find yourself out of work due to health issues is to apply for state help.  Food stamps are usually available on an emergency basis, you can apply online in most states and many cities have community services that might be able to help pay rent and utilities.  Churches and synogogues can be very helpful assets as well.  You may be able to find roomates to share expenses, caregiving opportunities or bartering options!

Once you’ve got your long term and short term financials down-it’s time to manage your home, your family and your disease.  Once again, you’ve got to change your game!

MANAGING YOUR HEALTH!

Get your doctors and specialists in order.  Make a folder for all your medical records (labs, doctors notes, etc) and keep it updated. This is two-fold. One-it will be necessary for your disability case later on, and Two-you can better coordinate your healthcare this way.  Bring your newest labs, tests, dx’s & list of meds to all your appointments.  This shows your docs you mean business and your taking your care seriously.

Ask questions!  If you need better pain control, it’s time to get that referral to a pain management specialist.  They can offer ways to manage pain that go beyond simply taking medications. There are procedures, cortisone shots, nerve blocks, and surgeries that can make your quality of life BETTER!  Now’s the time to take care of YOU!

Get all your specialist appointments caught up, see your general practitioner and get all the referrals you need to your specialists!  Now is the time.  Again, this will help you manage your chronic disease & give you the paperwork and info you need for your disability case.  Remember ASK QUESTIONS at your appointments!  If you are undertreated, or suffering, SAY SO, and ask.  It might be time to change your medications!  If your not feeling that your doctor is “on your team”-FIRE HIM/HER!  Docs are like night & day.  A good fit is very important. It can mean the difference in your attitude, your pain level, the very basis of how you feel about your disease can change with better quality control of your healthcare. Make those good choices NOW!

And lastly- HOW TO BRING IT HOME!

Time to manage your household.  The players have changed so your game must change too!  You must try to take control of the house by managing your time and abilities!  DELEGATE CHORES!  It’s all about the organization of the household and family working as a TEAM!

Cook meals in advance if you can and freeze them for another day.  Take your time preparing meals, doing the prepwork in stages.  (Cut up the veggies, then go sit down.  Go back & do some more, etc)  Get family to help out with the everyday homecare things like washing clothes, putting them away, walking the dog, doing the dishes, straightening the house!  You can no longer do it all.  You can even arrange a meeting with family and your doctor to discuss what he/her thinks of your abilities-having a knowledgeable professional to relate your needs to your family can go a LONG WAY!  This could be your doctor, your parents, anyone other than you!

It’s all about QUALITY OF LIFE and FINDING that QUALITY!   You may still be able to do the things you love, keep the career you’ve worked so hard for and wanted but in a different way!  You won’t know until you try, and you really have no choice if your taking care of a family!  Make it easier on YOURSELF!  You deserve it!

JJ

Fantastic Little Snowflakes, Each and Every One

painshare

We are all as different as snowflakes-Tala has such a command of the “right words” to express what all us “chronics” feel. Managing life with any chronic disease is stressful enough-but before you decide what someone ELSE should do for their conditions, please READ THIS! You Go Tala!

Tala's Reflections

Just in case anyone thinks that Lupus patients have the market cornered on “stupid” or “crazy” things said to them about disease…. ya don’t!  The uneducated masses out there socialize with other people too, and they have ridiculous ideas for everyone if they have them at all.  We’re not special.

Here are some remarks I ran into on a popular page this morning that set me off:

I switched all my food to organic 4 years ago. Since, I have lost 100 pounds without exercise, I am off the cholesterol meds, off high blood meds, off allergy meds, my eczema and psoriasis have completely disappeared along with my sleep apnea. 

[My thought on this is that someone is lying.  You NEED to exercise, and unless you are a quadriplegic, you have no excuses.  It doesn’t matter whether that means just taking a walk, or raising your arms over your head a…

View original post 1,922 more words

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