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My Experience
With Panhematin
By Desiree Lyon
The following morning after I arrived in the hosptial, Dr.
Lamon walked into my room holding an extremely large syringe full
of hematin for me to see. I
gasped and remarked that the concoction looked like swamp water,
a black/green color. Some patients have since told me that they
thought that hematin looked like crankcase oil or a prop in a Frankenstein
movie. Regardless, I was
ready to receive the infusion. At that time, Dr. Lamon infused
the remedy into a vein in my arm with a butterfly needle and a
very large syringe. He
repeated the process daily for five days.
The hematin may have looked like swamp water or crankcase oil,
but it was 24K gold to me. After only a few infusions, I improved dramatically despite
the fact that I had been ill for a number of weeks. Relief
from my constant pain and nausea occurred quickly, but the extreme
weakness remained for months thereafter. (Hematin was
the first drug approved by the FDA for rare diseases under the
Orphan Drug Act many years ago. It became available
from Abbott Laboratories in Chicago under the trade name Panhematin. It
has since been sold and is now available through Ovation Pharmaceuticals
with the same Panhematin name.)
As an aside, I recently had a number of repeated
attacks. My internist,
Dr. Thomas Baxter, arranged for me to receive weekly infusions
of Panhematin for
a few months. His plan was not only to halt the attacks but
also prevent other attacks in the future. The Panhematin
treatments were given on a special infusion floor of Methodist
Hospital in Houston, Texas. Since many
Porphyria patients asked how my doctor arranged for the treatments,
I have included the following description of the usual scenario
of the infusion process. The
IV infusion is much different now than it was when Dr. Lamon infused
the hematin by hand with a large syringe and a butterfly needle.
Now
when symptoms of an attack of AIP begin, Dr. Baxter immediately
orders Panhematin through the hospital pharmacy. Most of
the time, the hospital pharmacy does not maintain Panhematin on
hand. Therefore, it is ordered
from Abbott laboratories and is shipped immediately from their
emergency supply. Recently,
Abbott Laboratory sold Panhematin to Ovation Pharmaceuticals in
Chicago. However,
the shipments still continue to come from Abbott until the new
manufacturing plant is ready for Ovation.
Therefore, the Panhematin
arrives from the labs within forty-eight hours but can be sent
within a day. Although it usually is
used within a day of its arrival, it can be stored safely until
the expiration date. Shortly
after I know for certain that the treatment has arrived from Chicago,
I head for the ninth floor infusion unit of Methodist Hospital
in Houston.
As soon as I arrive at the hospital, my nurse, Vangi, calls the
pharmacy to reconstitute the Panhematin as soon as possible and
deliver it to the infusion floor. Next,
she prepares me for the treatment by inserting the IV line. When
the Panhematin arrives, Vangi wraps it in a dark bag to shield
it from the light, dims the lights in the room and begins the infusion. The
infusion process only takes approximately 30 minutes; a small price
to pay for such a big gain.
Vangi had never administrated Panhematin prior
to my case but had seen it infused in a patient over a decade ago. The
first time she readied the infusion, she commented that Panhematin
looked like used motor oil. My husband, Dick, entered the
room about that same time and agreed wholeheartedly with Vangi. Though
it was a life-saving substance, we all agreed it looked more life-threatening
than life-saving.
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