Opiods work best to control pain in porphyria patients, but doctors are very resistant to prescribe these citing addiction as the main reason. In fact, clinical experience suggests very few patients become addicted. In a 1980 survey by the Boston Collaborative Group, only 4 out of 11,882 patients who were treated with opioids for at least four months in a hospital setting, became addicted to an opioid. FOUR people have made it almost impossible for people suffering incredible pain to receive medication that would help them tremendously. http://www.meds.com/conrad/pmcd/port3.ht...
Some symptoms are neurological, and when presented together with the physical pain, are often treated as though "it's all in your head." In fact, the typical drugs an ER would give a person suffering from porphyria symptoms would bring on or intensify a porphyria attack. AIP (Acute Intermittent Porphyria) http://www.uq.edu.au/porphyria/ is the most difficult of the porphyrias to diagnose. You can't just call the doc and complain of one symptom. Not only does your stomach hurt, you probably have a headache and you may even be experiencing mental confusion. This sends most physicians into a tailspin.
What's so insidious about AIP is that it is truly intermittent. You may be fine for months even years, then WHAM, a severe attack will hit. You may slowly slide into the symptoms until one day you just can't get out of bed. Everyone differs. Since more women than men inherit AIP it is common for other women family members who don't even know about AIP to share these symptoms. Ask around at the next family gathering and you will be surprised who routinely suffers from these symptoms. Most women simply put it off as PMS. More info can be found at Porphyria- Clinical Trials in Preventing Cyclic Attacks in Women http://rarediseases.info.nih.gov/cgi-bin...
Porphyria has no cure, few treatments, and even less publicity. Help me get the word out to the world (or just Oprah) so we can help the many people suffering needlessly today. God bless and keep safe.
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