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Porphyria Educational Services

PORPHYRIA EDUCATIONAL SERVICES Bulletin Vol. 1 No. 17 April 25, 1999

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.

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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].

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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.

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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.

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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.