Monday, January 27, 2020

Another Update on Porphyria drug resources

Another update on the existing set of Porphyria drug resources
Some Internet resources on drugs and Porphyria are no longer available. However, the one I most recommend (number 1 below) is still available and still my first choice.

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 March 25, 2015 post on this subject.

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 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 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 opening information, and then click “Accept.” You will be taken to the actual database. On the left side of the page, in blue, is the option of printing out their entire list. A good idea for MCS sufferers I think, but bear in mind it is at least 55 pages long.
On the right side is the “Select Search Options” set of boxes. In the “Drug class” box you can choose which type of drug you are interested in from the dropdown list and leave the next 3 boxes empty. Or you can put in a particular drug name. In the “Safety” box, you can choose OK or BAD to limit the results to those drugs that have been shown to be either OK or not OK.
Be sure to read the result definitions so you know what you will be looking at.
2.  Porphyria drug database for the United Kingdom:

3.  NAPOS:
Deadends with nothing but general info.

4.  European Porphyria Network:
No longer available.

5.  Merck Pharmaceuticals:
A bit awkward to get to, but still available.
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.