How to Treat a ACUTE ATTACK of PORPHYRIA?
Question by Jessica: how to treat a ACUTE ATTACK of PORPHYRIA?
my daughter is 13 yrs old and has been diagnosed for 7yrs she has been on “PANHEMITAN” for 7yrs but lately the attacks have gotten worse with no help from our doctor. She has been sick now for 6days and it’s getting worse, she has had a treatment and no relief!! What is the next step what can you do to slow the attacks down? Any information would help Thanks
Best answer:
Answer by Walter Cross
Granted, this is all anecdotal, but take it for what it’s worth.
I have acute intermittent porphyria and have been warned not to take Panhemitan by multiple fellow patients. I honestly don’t know anyone who’s had success with it. But don’t get me wrong, I’m sure it works for some people, just not anyone I know personally. They have all told me the same thing you’re saying: symptoms get worse instead of better, and last longer than usual. One guy told me he quit taking it because he couldn’t eat, lost about 30 Ibs. or so, and experienced muscle pains that were so severe it would make him curl up on the floor in the fetal position after every treatment.
Consider the fact that porphyria is a very rare disease and the vast majority of doctors don’t deal with it very often, if at all. In my case, my doctor had read about porphyria in med school, but had never treated it before in over 40 years of private practice. So what I’m trying to get at is if your daughter’s doctor isn’t a porphyria specialist, I’m willing to bet that he or she is unfamiliar with the various idiosyncrasies of the disease. However, porphyria specialists are few and far between, especially in America. Most are located in Northern European countries, like England, Germany, Denmark and Sweden, where porphyria is much more common. But I do know there are at least a couple specialists on the West Coast; San Francisco and UCLA Med Center, I believe (though you’d have to check on that). But based on everything I know about Panhemitan, it should be discontinued if porphyria symptoms worsen. At the very least, your doctor should listen to your concerns.
Personally, my doctor treats my symptoms with morphine. It may sound pretty extreme, but opiates are one of the only safe pain-killers porphyria patients can take. I feel perfectly normal after taking it. It doesn’t make me feel high or anything like that. Legally, I’m even allowed to drive while taking it since it doesn’t impair my motor skills. It’s also a relatively harmless drug on the body, believe it or not. The liver can break it down fairly easily, and there aren’t many long-term problems associated with it (unlike many other pain-killers and street drugs). I have to take it orally every day, but haven’t had a severe attack in years. It helps me eat, sleep, and function in general. So you may want to look into that. I know it sounds scary, but it is recommended by many porphyria specialists.
If you don’t already belong to it, you might want to register your daughter with the American Porphyria Foundation (http://www.porphyriafoundation.com/). They can help you with just about anything porphyria-related. Since there aren’t many people in America with porphyria it’s a very tight-knit community. You can get in touch with other porphyria patients, medical professionals, and porphyria experts all around the country. They’re located in Houston, but are very quick to respond to your inquiries via telephone and email. Could be helpful.
Good luck.
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