Update
on the existing set of Porphyria drug resources
Doctors trying to work
with MCS sufferers can become frustrated by their patient's belief that all
drugs are poison to them. And MCSers put themselves at additional risk when
they refuse all pharmaceuticals in the belief that nothing can be tolerated.
But, while it is true that MCS and drugs can conflict badly, there are some
situations that absolutely need drug intervention, and there are web sites that can be of
significant help for choosing drugs that could be safe(r) for MCS. So what
follows is an update on a September 19, 2012, post on this subject.
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Chemical sensitivity
(commonly known as MCS) and the metabolic illness Porphyria have a major
overlap in symptoms, so drugs that are safe or safer for Porphyria patients will more
likely be better tolerated by those with serious chemical sensitivities. Keep
in mind that porphyria organizations are not generally supportive of MCS, but
their drug information and protocols can be very helpful.
The following web sites (listed in no special order) provide
information on drugs and how they are generally tolerated by MCS
sufferers even though you will not find MCS mentioned by name.
1. American
Porphyria Foundation:
Read the disclaimer if you
wish, and then click “Accept.” You will be taken to the actual database. The “Drug
class” box says All, but you can choose which type of drugs you are interested
in – there is a dropdown list. The next 3 boxes can be left empty. In the “Safety”
box, choose OK or BAD. This will limit the results to those drugs that have
been shown to be either OK or not OK.
Be sure to read the
definitions so you know what you will be looking at.
This site gives the
option of printing out their entire list, but bear in mind it is at least 55
pages long.
2. Porphyria
drug database for the United Kingdom:
Takes you to the NAPOS
database. See the next entry.
3. NAPOS:
Click “Home” at the
bottom of the page. On the next page where it says pick your country, choose
the UK so things will come up in English. On the bottom of the next page, which
looks like the first page, click “Continue.” On the next page, click “Accept”
at the bottom of the box (reading the disclaimer is, of course, optional). On
the next page in the “Choice of drug …” box, choose the top “Enter” button and
read the key to the classifications. Below that is the place to enter the drug
you are interested in using either the brand/trade name or the generic name. And
spelling is very important.
This site seems quite
comprehensive but is not as convenient for general searching because there is
no way I have found to search for anything but specific drugs – one at a time.
4. European
Porphyria Network:
Read the short disclaimer
and then click on "Accept and continue" to see their Safe List.
5. Merck
Pharmaceuticals:
Scroll down about 2 pages, and in a pale box on the right side it will say in red type "Drugs and Porphyria*". Click on that and it will take you to their drugs table.
The information
from these sites comes from respected medical sources and should go a long way
toward giving doctors choices and more confidence in talking with MCS patients.
These lists/sources are not fool-proof, but they can make the difference
between blindly choosing and making educated choices.
