Wednesday, March 25, 2015

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.

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 2 pages or so. In the box labeled "Drugs and Porphyria*" click on crossed, double-headed arrows to go to Merck's full list.

 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.