Porphyria Educational Services
PORPHYRIA EDUCATIONAL SERVICES Bulletin Vol. 1 No. 17
April 25, 1999
PORPHYRICS & CHRONIC PAIN
Porphyric pain may be acute or chronic.
Acute pain is a one-dimensional pain. This means that it is a
symptom of an underlying pathology. The primary goal of pain
management therapy would be the treatment of the underlying
disease which reduces or eliminates the pain. [We hope!!!]
Analgesics are used as adjunctive medications to provide short
term comfort and prevent behabviors that interfere with the
recovery process from an acute attack of porphyria.
On the other-hand chronic pain is a multi-dimensional type of
pain. It is very complex. Because of the complexity the interplay
between between the psychological, physical and social factors
can actually worsen the symptoms.
There are three types of chronic pain. The first is pain
resulting from a chronic condition. The second type of pain is
from an acute injury that usually lasts longer than expected, and
the third type of pain is a pain for which there is no
discernible cause. Sound familiar? So it is with most porphyria
pain.
Chronic pain in and by itself may be considered a disease. In
this case reducing or eliminating the pain without increasing the
risks is the primary desired result of treatment therapy.
In a 1998 study it was estimated that more than 75 million people
in the United States alone have some kind of persistent recurrent
pain. Among these are those who suffer lower back pain and
chronic tension headaches.
Chronic pain as most porphyrics so well know, affects all aspects
of their lives. Pain is described as being "an unpleasant
sensory and emotional experience arising from actual or potential
tissue damage .
The dual physical and emotional aspectsof the definition are
important to remember because they are so very conencted.
The physiological and physical effects of pain include increased
pulse, blood pressure, and respiration. It also means decreased
activity and mobility. {Don't we all know!!!]
In addition chronic pain also causes fatugue, sleep disruption or
restlessness, anxiety, agitation, anger, and all too often,
depressiobn. Some aspects become too prevalent in a porphyric's
life that they literally become unable to function.
The social consequences of pain include disruption of family life
and also decreased productivity.
~ ~ ~ ~ ~ ~ ~ ~ ~
NSAIDS: The Non-Narcotic Analgesics NSAID reduce inflamation and
relieve pain by affecting arachidonic acid metabolism.
While the NSAIDS are used safely and effectively by millions of
people they are often associated with adverse effects,
particularly in patients who are in high-risk groups, including
porphyrics.
GI complications are the most common adverse efect of NSAIDS.
One of the safest NSAIDS is Acetaminophen [Tylenol].
~ ~ ~ ~ ~ ~ ~ ~ ~ ~
PORPHYRIA PAIN MEDICATION: ANALGESICS Analgesics are presecribed
for giving effective pain relief.
At least that is the theory. Often porphyrics still endure a life
of ongoing pain.
Analgesics can be classified by the site of their action.
There are three tyopes: [1] centrally acting; [2] peripherally
actng; and [3] locally acting.
The centrally acting analgesics include both opiod analgesics and
non-narcotic agents such as Tramadol a.k.a. Ultram. In porphyria
we must avoid the Tramadol/Ultram non-narcotic pain medication
because of the side effects of seizures and being noted by some
as a "trigger" for acute attacks. It is also
contraindicated with the use of some medications for seizures,
muscle relaxants, pain and nausea medications.
It must be said that no one drug is perfect. Every drug known has
their benefits and at the same time has some ricks involved with
its use.
Healthcare medical providers must make a determination which drug
to use in any given situation.
Often drugs are given to a patient and the medical provider then
assesses the individual p[atient's reaction to a specific drug.
With the porphyric patient, it is much better to use drugs that
have been approved for a period of no less than five years. The
reason for this is that it takes a couple of years to assess the
general problems with any new pharmaceutical product. Porphyrics
by the very nature of their disease need to be ever mindful of
the use of drugs and double check all information on any drug
prescribed for them whether it be oral, suppository, injection or
intravenous.
The majority of drugs on the market today are newer drugs, and
each years countless numbers of new drugs and especially drug
samples are left with medical care providers to give to patients
to try out. Be care of such medications. Ask for and demand to
use pharmaceuticals known to be safe for porphyrics. Even then,
because each person is different and has different sensitivities,
a "safe" drug can not be tolerated by everone.
Regardless of whether one uses a non-narcotic, an opiod, or
NSAID, and informed decision making in the prescribing of such
drugs requires an understanding of the pharmacology, efficiacy
and more importantly, the safety profile of these agents.
Every porphyric patient should familiarize themselves with the
Drugs List by Dr. Michael Moore. In addition to his endless list
of drug names, one would be advised to state the variables of
each drug name, whether it be the generic, brand, trade or
classification name of a drug.
BuSpar for instance is known as busprione. It does not appear on
any drug list, unsafe or safe. However the classification is such
that one would refuse to take the drug. BuSpar is an antianxiety
drug, a sedative. Most drugs dealing with the mental
abnormalities such as anxiety, or insomnia are unsafe for
porphyrics.
For pain associated with inflammation an NSAID is more often
prescribed.
~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
PORPHYRIA PAIN AND OPIOD ANALGESICS
Opioid analgesics are centrally acting agents. These opiods
provide fast pain relief by either binding or blocking opiate
receptors in both the brain and the spinal cord.
An agonist effect is known as binding. The blocking effect is
known as an antagonist effect.
Opiods are also known as narcotics.
Opiods can play a role in the management of som chronic pain
conditions and this includes many of the acute hepatic porphyric
pain.
It is thought by many chronic pain specialists that non-addictive
personalities of porphyria patients who use the opiods
specifically for their analgesic effect have a very low
possibility of addiction. Those patients however who use such
opiods because of the their euphoric effects have a far greater
possibility of becoming addicted to such drugs.
Nonetheless, because of the social stigma and also in many places
the legal issues that focus on the chronic use of opiods, there
continues to be a barrier to both the patient's ability to comply
and the physician's ability in prescribing. For these reasons
non-narcotic analgesics are often preferred as the first-line of
therapy for porphyric patients for their often chronic pain.
~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
SUICIDE AND PORPHYRIC PAIN
Throughout much of the known history of porphyria, there have
been those porphyrics who have ended their lives. Most notable of
these porphyrics was of course the famed Vincent Van Gogh.
His problem of course was that when he went into a poprhyic
attack, he would drink a thimble of absythe to dull the severity
of the pain. And it may for a short time, but at the same time
wass the "trigger" for another acute attack of
porphyria. It happened so often that Van Gogh was chronic and no
longer just a smoldering chronic porphyric but in severe chronic
pain.
Finally, unable to handle his condition he commited suicide.
Suicide is NOT a treatment for anything. This same thought was
stated recently in an article in a California mainline newspaper
publication where the "right to die" is being
discussed.
Debate started in the California legislature regarding
physician-assisted suicide with the introduction of Assembly Bill
1592.
Rather than debate such issues to end life, it should rather be
the issue of requiring physicians to include courses that
familiarize them with the diesease porphyria and addressing pain
and symptom management of the various types of porphyria.
Another issue that needs to be stressed is to be sure that pain
medications are readily available to porphyria patients in pain.
Legislation also has to be made clear that allows for physician
caring for porphyric patients to prescribe appropriate dosages of
medications without fear of the wrath of the law enforcement
officials intent on the waging of war on drugs.
Laws have been enacted to allow access to pain medications and
reduced the inefficiancy of the triplicate prescription process
for administering drugs to terminally ill patients. Those
suffering from a terminal illness are no longer subject to long
delays in approval of non-formulary medications.
However, porphyrics are not terminal, but many days it seems as
if we wish the porphyria were terminal. It is not. And suicide is
not an answer.
We must be sure that legislation is made that will enable our
physicians to prescribe the medications that we need in order to
live a better quality of daily life.
All concerned parties should work together for the behalf of
porphyrics and continue dow the humanitarian path of treating
pain in suffering individuals both porphyrics and others in
severe pain.