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Porphyria Educational Services

PORPHYRIA EDUCATIONAL SERVICES BULLETIN   Vol. 1 No.  9 March 1999
Bulletin Focus:   Glucose Therapy

Glucose or otherwise known  or labeled as dextrose is the primary therapy
for patients with the acute porphyrias.

Nutritional management of acute attacks of porphyria Intravenous
administration of glucose (a pure form of carbohydrate) is part of the
standard treatment of acute attacks of porphyria.

Glucose is given by vein because the stomach and intestine usually do not
function properly during an attack.
Much consumed carbohydrate is usally lost due to vomiting, if it consumed
in the first place. 0ften at the onset of an acute attack, nausea is present
and a porphyric does not have an appetite. Because of the problems with
the stomach and intestines, material taken by
mouth is not properly propelled through these organs.
Glucose and other carbohydrates can repress the pathway for synthesis of
herne in the liver.

As a result, the overproduction of prophyrin precursors and porphyrins is
repressed by carbohydrate administration.
Carbos kill off the porphyrin over-production !!!

So what is there to know about Glucose?

Gluscose is the purest form of carbohydrate.
Glucose is often labeled as Dextrose.

Glucose comes in many strengths and various mixtures.
Some mixutres are with plain water.  0thers are with saline.

There is DW which is glucose mixed with water.
There is DW which is glucose mixed with saline water. [salt]
The difference is that if a person has been vomiting a lot and their
electrolytes are imbalanced...you can get the mental problems and other
physical problems, so this is when the DS is most often used.
If your nausea is controlled and the electrolytes are in check, then go
with the DW.

The number behind it depends on the individual person.
I go with DW5 because my veins will no longer tolerate the 10....
Many people tolerate 20 just fine.  I started out there years ago [1980]
by 1991 I was at 15.   Late 1997 I was at 10...but no more.
I go with 5 and consume the rest by mouth to get my 300 mg carbo minimum
and usually get there  between 18 to 24 hours.

There is also the bolus [headstart] where they give you a lot right at the
beginning and then drop it down. That has been done for me many times,
but no more because the veins get blown.

There is another way to get a carbo load at the beginning too.
That is by injection and really works well.
You have to be sure that you do not have any diabetic
tendency before doing this  way however.
There are various amount given by injection and everyone is different.
Your doctor will, if he is good, check your metabolic panel first, and
your glcose levels before starting your IV or giving you the injection.

Heme therapy has a similar but much more potent effect. and probably leads
to more rapid improvement. Heme in the U.S. and heme arginate in other
countries, infused by intravenous feeding is used in patients when the
glucose administration fails to show a significance improvement in the
porphyric after 24 to 40 hours.

Some porphyria specialists prefer heme rather than glucose as initial
therapy for an acute attack.

However some porphyrics can not take hematin due to the side effects and
risks of blood clots. This is especially true for those porphyrics who have previous histories
of DVT or pulmonary emboli. Even if given hematin, it is still important to administer glucose and
other nutrients. This is especially true particularly if an acute attack is severe or
prolonged, sufficient glucose can be given by vein to meet the total
energy requirements of a patient. This is best accomplished by a catheter that is
inserted into a large central vein.

Through "Total Parenteral Nutrition" additional nutrients, including
vitamins, minerals, amino acids and fat can be given in the required
amounts to maintain all requirements. This is a provision for total nutritional
needs. After a recovery from an attack ,a high carbohydrate regimen should be
prescribed.