what drugs cause Porphyria crises?

[Guest guest]

http://www.porphyries.com.fr/

It's in French but fairly easy to understand the drugs in red are forbidden, the drugs in green are OK to use

Nelly

[Guest guest]

Thanks for that link, Nelly. I checked it out.

epam is on the interdicted list. It's also the only drug that

stops the clonus in my case.

So maybe I don't have porphyria (it sounds like " perforate, " " fear, "

and " hysteria " mixed together, so I'd rather not have it). Or I do

have it, and the diazepam will make me much worse, which would be so

consistent with my luck that I am now officially forgetting I ever

thought of it.

Er, what was I saying?

It looks like an excellent resource, that site.

> http://www.porphyries.com.fr/

>

> It's in French but fairly easy to understand the drugs in red are

forbidden, the drugs in green are OK to use

>

> Nelly

[Guest guest]

Yeah, but , epam doesn't necessarily cause porphyria. It's

just one that has the potential in certain people.

I'm not sure we even know what Porphyria is for sure. HOws it

different from any other " syndrome " that's characterized by a number

of symptoms, which coincidentally are identical to what most of us

experience. I find it interesting that they've given this certain

set of reactions to drugs, illness (even heredity) a label that

sounds legit, while we have the same symptoms and get labelled with

CFS or FM, implying we don't have " real " diseases.

By the way, does anyone know how hereditary porphyria is dx'd?

penny

> > http://www.porphyries.com.fr/

> >

> > It's in French but fairly easy to understand the drugs in red

are

> forbidden, the drugs in green are OK to use

> >

> > Nelly

[Guest guest]

,

From what I understand there are several genetic disorders in which there is a deficiency in one or several of the enzymes that deals with porphyrins uroporphyrinogene decarboxylase for eg. There are many presentations depending on the % of deficiency of the enzyme. The manifestations described are fairly serious and obvious but I am quite sure there are others which are not described because they are more subtly expressed.

My take home message from all this is: several things are porphyrinogenic (stress, infections, red meat etc and some drugs (see the french list), so whether you have a genetic defect or not if you have an infectious process going on you're going to have to deal with these increased levels of porphyrins. So let's try and minimise the amounts produced or let's mop them up as well as we can.

Of course it would be interesting to decide what part of our symptoms could be related to porphyrins (and of course whether we do have a genetic mutation that makes it hard for us to deal with them-there are tests for that, some that measure the porphyrins, some that measure amount of enzymes and of course some are molecular tests for the mutations).

Nelly

[infections] Re: what drugs cause Porphyria crises?

Thanks for that link, Nelly. I checked it out.epam is on the interdicted list. It's also the only drug that stops the clonus in my case. So maybe I don't have porphyria (it sounds like "perforate," "fear," and "hysteria" mixed together, so I'd rather not have it). Or I do have it, and the diazepam will make me much worse, which would be so consistent with my luck that I am now officially forgetting I ever thought of it.Er, what was I saying?It looks like an excellent resource, that site.> http://www.porphyries.com.fr/> > It's in French but fairly easy to understand the drugs in red are forbidden, the drugs in green are OK to use> > Nelly