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+)


Muscle Pain, Stiff Fingers & Gastro Issues, Oh My…. WHICH Autoimmune Disease Could It Be?!!!

autoimmune-picture-treeCould This Be An Autoimmune Disease?

Someone asked the following QUESTION:

My entire life has been on pause for 3.5 years, I went from being the most active person I know to someone who even getting dressed or taking a shower is a big painful struggle. I’ve seen dozens of doctors and spent thousands and thousands of dollars and hundreds of hours researching, and so far the only thing I get is all blood tests being normal and I’m told it’s no big deal. I would so so so so grateful if you can help in any way – I literally do not have a life or a future right now and spend about half my awake time in too much pain to do anything.

Symptom summary:

– muscle pain in left flank almost 24/7

– pain in left SI joint almost 24/7

– pain in lower left ab

– gastro issues (diarrhea, bloated 24/7, gasy ALL the time, stomach aches daily)

– distended areas in stomach

– right knee and right shoulder almost unuseable

– all joints popping constantly from any movement

– very cold right hand fingers and stiff fingers

– tremours/shaking in all muscles when not in rest

– different pains in different body parts daily, seemingly random


I’m not a medical pro- just someone with systemic lupus & reactive arthritis.  But here’s my best guesses & suggestions:

Have you had an MRI or cat scan during a flare-up of your si joint?  I’d get that done during a flare and see if it shows inflammation.  Your gastro symptoms and si joint (sacroillitis) could be related to reactive arthritis or ankylosing spondylitis (and yes, it can be chronic) (& painful).  You can get checked specifically for the HLA-B27 gene by a rheumatologist who knows what to look for.  Here’s some info:  How Is Ankylosing Spondylitis Diagnosed?

A diagnosis of ankylosing spondylitis is based largely on the findings of a medical history and physical exam. Radiologic tests and lab tests may be used to help confirm a diagnosis, but both have some limitations.

Medical History

The medical history involves answering questions, such as the following:

How long have you had pain?

Where specifically is the pain in your back or neck? Are other joints affected?

Is back pain better with exercise and worse after inactivity, such as when you first get up in the morning?

Do you have other problems, such as eye problems or fatigue?

Does anyone in your family have back problems or arthritis?

Have you recently suffered from a gastrointestinal illness?

Do you have any skin rashes such as psoriasis?

From your answers to these questions, your doctor can begin to get an idea of the diagnosis.

Physical Exam

During the physical exam, the doctor will look for signs and symptoms that are consistent with ankylosing spondylitis. These include pain along the spine and/or in the pelvis, sacroiliac joints, heels, and chest. Your doctor may ask you to move and bend in different directions to check the flexibility of your spine and to breathe deeply to check for any problems with chest expansion, which could be caused by inflammation in the joints where the ribs attach to the spine.

Radiologic Tests

X rays and magnetic resonance imaging (MRI) may be used in making or confirming a diagnosis of ankylosing spondylitis, but these tests have limitations. X rays may show changes in the spine and sacroiliac joints that indicate ankylosing spondylitis; however, it may take years of inflammation to cause damage that is visible on x rays. MRI may allow for earlier diagnosis, because it can show damage to soft tissues and bone before it can be seen on an x ray. Both tests may also be used to monitor the progression of ankylosing spondylitis.

Lab Tests

The main blood test for ankylosing spondylitis is one to check for the HLA-B27 gene, which is present in the majority of Caucasians with ankylosing spondylitis. However, this test also has limitations. The gene is found in much lower percentages of African Americans with ankylosing spondylitis, and in ankylosing spondylitis patients from some Mediterranean countries. Also, the gene is found in many people who do not have ankylosing spondylitis, and will never get it. Still, when the gene is found in people who have symptoms of ankylosing spondylitis and/or x-ray evidence of ankylosing spondylitis, this finding helps support the ankylosing spondylitis diagnosis.

My other guess would be Crohn’s, (or IBD) maybe.  But the joint involvement tells me it’s more systemic than Crohns or IBD.  Do you have any eye issues?  Recurring uveitis is a biggie with AS (I hate it and get it all the time). It’s inflammation in the iris.  You don’t have to have it tho to have AS (ankylosing spondylitis)

As far as Rheumatoid arthritis, I’m sure you’ve had an RA Factor and an anti-CCP antibody test for dx.  I’m assuming you’ve seen rheumatologists..

Your cold hands sound like Raynaud’s Phenomenon, common with mixed connective tissue diseases.

Also as far as mixed connective tissue disease, they often overlap, and the best test to have is a Direct ANA Panel which will separate the antibodies and give your rheumie info on where your disease is pointing.  Most people get just the one ANA test-a TITER test, but I’d like to suggest you have the PANEL done, as it’s much more specific and you can be negative on the titer but positive on the panel.  Also remember these proteins of autoimmune disease don’t always show up right away in your blood.  Sometimes it takes testing over and over to hit it at the right time.

You should also have a CRP (C-Reactive Protein) test to look for inflammation in your blood and an ESR (sedimentary rate) also to check for inflammation.  Testing your C3 and C4 complements in your blood is also helpful to show if you have something autoimmune going on.

And DON’T GIVE UP!  Lots of us wait long long times for a dx.  Hang in there!


How To Find a New NORMAL & Change Your Game!

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.


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!


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!


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!


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)


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.


  • 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.


  • 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.


  • 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.

Going Down the TUBES with “Reactive Arthritis”-

Fallopian tubes that is!


Salpingitis-Inflammation in Fallopian Tubes


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.


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.

Learning how to not be “RASH”! My pemphigus/pemphigoid story-

How skin falls apart: The pathology of autoimmune skin disease is revealed at the nanoscale – UoB study of pemphigoid rashes discovered new details of how autoantibodies destroy healthy cells in skin! 

This information provides new insights into autoimmune mechanisms in general and could help develop and screen treatments for patients suffering from all autoimmune diseases, estimated to affect 5-10 percent of the U.S. population.

The study of pemphigoid rashes is of interest to people like me, who get these types of rashes-here’s a pic of me with one-

My Pemphigoid Rash

My Pemphigoid Rash

It hurt, felt like my skin was pulling, then it seeped clear white blood cells.  I could actually smell them!  (Yuk, right?)  It took quite a while to heal completely.  It took about 5 months to completely heal.  It did not leave any discolored skin. I used betamethazone to heal it.  A stronger type of steroid cream &/or a steroid shot right into the rash would have probably healed it faster, but I didn’t know that then.  I had this rash Feb 2013. It popped in right after a radiofrequency ablation to my cervical spine for cervical spondylitis & radiculopathy right at the shot site!  Imagine that-Lupus stopping by to say hello just because I had a shot there-(how nice….NOT!  lol)

I’ve only had one pemphigoid type rash since, and it was a small one.  Since being treated for lupus with Cellcept (mycophenalate) my rashes (discoid, pemphigoid, porphyria, urticaria) have all been minimal.  Much less severe!!!  Of course now I stay in as much as possible, it’s the only real way to minimize the rashes.  Don’t go out during the day!


UB research could lead to method for identifying individuals at risk and to screening novel medications

BUFFALO, N.Y. – University at Buffalo researchers and colleagues studying a rare, blistering disease have discovered new details of how autoantibodies destroy healthy cells in skin.  This information provides new insights into autoimmune mechanisms in general and could help develop and screen treatments for patients suffering from all autoimmune diseases, estimated to affect 5-10 percent of the U.S. population. –

The research, published in PLoS One on Sept. 8, has the potential to help clinicians identify who may be at risk for developing Pemphigus vulgaris (PV), an autoimmune skin disorder, by distinguishing pathogenic (disease-causing) autoimmune antibodies from other nonpathogenic autoimmune antibodies. – See more at: http://www.buffalo.edu/news/releases/2014/09/013.html#sthash.aBNRU5D4.dpuf

MORE HERE from the University of Buffalo-


Here’s some info on Pemphigoid Rashes!


Pemphigoid is a group of subepidermal, blistering autoimmune diseases that primarily affect the skin, especially the lower abdomen, groin, and flexor surfaces of the extremities. Here, autoantibodies (anti-BPA-2 and anti-BPA-1) are directed against the basal layer of the epidermis and mucosa.

The condition tends to persist for months or years with periods of exacerbation and remission. Localized variants of the condition have been reported, most often limited to the lower extremities and usually affecting women.


There are two predominant types of pemphigoid: mucous membrane pemphigoid (MMP) also called cicatricial pemphigoid, and bullous pemphigoid (BP) (g). Pathogenesis and management are quite different for these conditions. Scar formation in mucous membrane pemphigoid can lead to major disability (g).

Pemphigoid gestationis

Pemphigoid gestationis (PG) is a rare autoimmune bullous dermatosis of pregnancy. The disease was originally named herpes gestationis on the basis of the morphological herpetiform feature of the blisters, but this term is a misnomer because PG is not related to or associated with any active or prior herpes virus infection (h). PG typically manifests during late pregnancy, with an abrupt onset of extremely pruritic urticarial papules and blisters on the abdomen and trunk, but lesions may appear any time during pregnancy, and dramatic flares can occur at or immediately after delivery. PG usually resolves spontaneously within weeks to months after delivery.


Bullous Pemphigoid:

  • BP is the most frequent blistering disease of the skin (and mucosa) affecting typically the elderly (>65 years) (k), but can occur at any age and in any race.
  • Overall incidence: ± 7-10 new cases per million inhabitants per year.
  • After the age of 70 incidence significantly increases.
  • Relative risk for patients > 90 y have a 300-fold higher than those < 60 y.
  • Women and men equally afflicted.
  • Precipitating factors include trauma, burns, ionizing radiation, ultraviolet light, and certain drugs such as neuroleptics and diuretics, particularly lasix (furosemide), thiazides, and aldosterone antagonists.
  • Correlations between BP flare activity and recurrence of underlying cancer suggest such an association in some patients.
  • Even without therapy, BP can be self-limited, resolving after a period of many months to years, but is still a serious condition especially in the elderly.
  • (j) 1-y survival probability may be as high as 88.96% (standard error 5.21%), with a 95% confidence interval (75.6%, 94.2%) but other analyses have documented 1 year mortalities of as much as 25-30% in moderate to severe pemphigus even on therapy (hh).
  • Genetics
    • Genetic predisposition, but not hereditary

Pemphigoid Gestationis:

  • Is a condition of pregnancy (childbearing age women).
  • In the United States, PG has an estimated prevalence of 1 case in 50,000-60,000 pregnancies.
  • No increase in fetal or maternal mortality has been demonstrated, although a greater prevalence of premature and small-for-gestational-age (SGA) babies is associated with PG.
  • Patients with PG have a higher relative prevalence of other autoimmune diseases, including Hashimoto thyroiditis, Graves disease, and pernicious anemia.


The earliest lesion of BP is a blister arising in the lamina lucida, between the basal membrane of keratinocytes and the lamina densa. This is associated with loss of anchoring filaments and hemidesmosomes. Histologically, there is a superficial inflammatory cell infiltrate and a subepidermal blister without necrotic keratinocytes. The infiltrate consists of lymphocytes and histiocytes and is particularly rich in eosinophils. There is no scarring.

Approximately 70% to 80% of patients with active BP have circulating antibodies to one or more basement membrane zone antigens.

  • Autoantibodies to BP180 (and BP230).
  • BP180 and BP230 are two components of hemidesmosomes, junctional adhesion complexes.
  • T cell autoreactive response to BP180 and BP230 regulate autoantibody production (l).
  • On direct immunofluorescence, the antibodies are deposited in a thin linear pattern; and on immune electron microscopy, they are present in the lamina lucida. (By contrast, the antibodies to basement membrane zone antigens that are present in cutaneous lupus erythematosus are deposited in a granular pattern).

Clinical Features


Bullous Pemphigoid (BP) is subepidermal blistering autoimmune disease primarily affects the skin, especially the lower abdomen, groin, and flexor surfaces of the extremities. Mucous membrane involvement is seen in 10%-40% of patients. The disease tends to persist for months or years with periods of exacerbation and remission.

The spectrum of presentations is extremely broad (l), but typically there is an itchy eruption with widespread blistering, and tense vesicles and bulla (blisters), with clear fluid (can be hemorrhagic) on apparently normal or slightly erythematous skin.

Lesions normally appear on the torso and flexures, particularly on the inner thighs. Blisters can range in size from a few millimeters to several centimeters, and although. pruritic, typically heal without scarring.

Sometimes erosions and crusting is seen. Also itchy bumps (papules) and crusts (plaques) can be seen with an annular or figurate pattern. A characteristic feature is that multiple bullae usually arise from large (palm-sized or larger), irregular, urticarial plaques. (r) Mucosal (oral, ocular, genital) involvement is also sometimes present, but ocular involvement, is rare. (s) BP can be difficult to diagnose in its ‘non-blistering’ stage, when just itchy, red, elevated patches are visible. Erosions are much less common than in pemphigus, and the Nikolsky sign is negative.

BP is characterized by spontaneous remissions followed by flares in disease activity that can persist for years. Even without therapy, BP is often self-limited, resolving after a period of many months to years, but may become very extensive.

Localized variants of the disease have been reported, most often limited to the lower extremities and usually affecting women. One such variant, localized vulvar pemphigoid, reported in girls aged 6 months to 8 years, presents with recurrent vulvar vesicles and ulcerations that do not result in scarring (t)

Bullous pemphigoid is distinguished from other blistering skin diseases, such as linear IgA dermatosis, epidermolysis bullosa acquisita, and cicatricial pemphigoid, by the following 4 clinical items (it can also be distinguished by biopsy and certain immunological tests) (u)

  • Absence of atrophic scars;
  • Absence of head and neck involvement;
  • Relative absence of mucosal involvement.

Mucous membrane pemphigoid

Mucous membrane pemphigoid (MMP) is a chronic autoimmune disorder characterized by blistering lesions that primarily affect the various mucous membranes of the body, but also affects the skin (MMP is now the preferred term for lesions only involving the mucosa) (v). It is also known as Cicatricial Pemphigoid (CP), as it is often scarring.

The mucous membranes of the mouth and eyes are most often affected, but those of the nose, throat, genitalia, and anus may also be affected. The symptoms of MMP vary among affected individuals depending upon the specific site(s) involved and the progression of the disease. Disease onset is usually between 40 and 70 years and oral lesions are seen as the initial manifestation of the disease in about two thirds of the cases. Blistering lesions eventually heal, sometimes with scarring. Progressive scarring may potentially lead to serious complications affecting the eyes and throat.

There is no racial or ethnic predilection although most studies have demonstrated a female to male ratio of approximately 2:1 (w). The diagnosis of MMP is mainly based on history, clinical examination and biopsy of the lesions.

More on Pemphigoid Rashes from the Pemphigus & Pemphigoid Foundation HERE!


Where Fibromyalgia and Chronic Fatigue Syndrome Part Ways (and Where They Don’t)


Shared from ProHealth.com by Cort Johnson

Lately we’ve seen what appears to be a great deal of similarity in muscle issues in Chronic Fatigue Syndrome and Fibromyalgia. We know that Dr. Bateman and others believe ME/CFS and Fibromyalgia occur on a fatigue-pain continuum – that they are similar disorders that differ in the amount of fatigue and pain present. They both predominantly affect women, and similar medications are used in both.

Both Dr. Natelson and the Lights, however, have found differences in ME/CFS + FM vs ME/CFS patients alone, and Natelson argues that they’re quite different disorders.

Now a recent study demonstrates an important way that this is so.

Reduced levels of BDNF – described as a nerve repair agent – were recently found in Chronic Fatigue Syndrome and multiple sclerosis. The levels found – less 25% of normal – were stunningly low, and this suggested that neuron functioning was taking a real hit in both these disorders. Given the nerve damage found in MS, that result was expected for MS – but not in ME/CFS.

A recent Fibromyalgia BDNF study seems to portray a very different disorder. It examined BDNF and a marker of central sensitization (S100B) in the blood of fifty-six FM patients and then determined if this correlated with pain pressure thresholds (the threshold at which pressure starts producing pain). The lower the pain threshold, the more pain a person is in. The study did not involve healthy controls and thus did not, strictly speaking, determine if BDNF levels were higher or lower than normal in FM.

Microglia Activation and Central Sensitization

Before we get to the findings, let’s look at S100B. S100B is such an intriguing factor that it’s surprising it hasn’t been studied before in FM or in any other pain disorders. S100B upregulates two key cytokines, IL-1b and TNF-a, both of which may be involved in FM and ME/CFS. It also activates the nuclear transcription factor which Maes proposes underlies the inflammatory milieu in ME/CFS and depression. It is also considered a surrogate for microglial activation.

Study Findings

This study found that increased BDNF and S100B levels were associated with increased pain sensitivity in FM. Other studies have found increased BDNF levels in FM as well. These FM findings contrast sharply with the decreased BDNF levels found in ME/CFS.

With regards to BDNF, ME/CFS looks more like multiple sclerosis than it does Fibromyalgia.

High Levels of Excitation vs Low Levels of Nerve Repair?

While high levels of BDNF in FM look like they’re enhancing the activity of excitatory pain pathways in FM, low levels of BDNF in ME/CFS look like they may be impeding neuron repair and slowing down nerve transmission. Could FM be a disorder of brain excitation while ME/CFS is a disorder of brain loss and slowed functioning? Could it be that simple?

A quick look at the research findings in ME/CFS and Fibromyalgia indicate more overlaps than dissimilarities. Both are characterized by sympathetic nervous system activation, reduced aerobic capacity, increased lactate levels (in one place or another), reduced brain blood flow, decreased cortisol, and decreased grey matter in the brainstem.

Similarities between the ME/CFS and Fibromyalgia

Differences between the ME/CFS and Fibromyalgia

Central Sensitization – the Key?

It’s intriguing that the two major differences between the two disorders, increased substance P and BDNF in FM, are associated with central nervous system activation.

Given the high amount of pain and problems with stimulus overload, we’ve assumed ME/CFS is also a central sensitization disorder. Yet two markers associated with central sensitization that are elevated in FM, BDNF and substance P, are not elevated–or are actually lowered–in ME/CFS.

The excitatory neurotransmitter glutamate is also clearly increased in some parts of FM patients’ brains, but a CDC gene expression study suggested decreased glutamate uptake may be present in ME/CFS. At the Stanford Symposium Dr. Zinn described an ME/CFS brain characterized by substantial ‘slowing’. It was a brain that seemed to be more asleep than awake.

On the other hand, Jason has proposed that limbic kindling produces a kind of ‘seizure activity’ in parts of the brain in ME/CFS, and high levels of neuropeptide Y and reduced heart rate variability indicate the sympathetic nervous system is activated in both disorders. Klonopin (clonazepam), a nervous system inhibitor, is used in treating both disorders.

In the end it may be that, like the immune system in ME/CFS, parts of the brain are over- and under-activated in both disorders.


Increased levels of BDNF and S100B levels are associated with increased pain sensitivity in Fibromyalgia. They join a variety of other markers of central sensitization markers found in FM.

Differing levels of BDNF and substance P in Chronic Fatigue Syndrome and Fibromyalgia suggest that the two disorders differ in important ways. However, the two disorders share many more commonalities than differences. The central nervous system could be, however, where the two disorders diverge.

Pain is common in ME/CFS, but it appears that the pain is, at least in part, being produced in different ways than it is in Fibromyalgia.


About the Author:  Cort Johnson has had ME/CFS for over 30 years. The founder of Phoenix Rising and Health Rising, Cort has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort’s and other bloggers’ work at Health Rising.