Porpyria - Rare Disorders Message Board

bt7460 · 02-04-2001, 05:09 AM

My boyfriend, 34 has Porpyria. His symptoms are joint pain, nausa after eating, pain in his stomach that goes through to his spine, depression and anxiety. He feels very alone with this disease and none of the doctors know how to treat him. He is on daily pain killers, anti-depressants and anti-anxiety medicine. The list of med's he can take is very few, having found out the hard way at first. The doctors would give him medicine that would bring on attacks. If there is anyone, particularly a male with this disease, I would appreciate hearing from you. Maybe is he realizes there are others and could share his thoughts and feeling and syptoms, maybe he would feel a little better knowing he was not alone in this.

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tiny2 · 03-25-2008, 02:54 PM

Quote:

Originally Posted by bt7460

My boyfriend, 34 has Porpyria. His symptoms are joint pain, nausa after eating, pain in his stomach that goes through to his spine, depression and anxiety. He feels very alone with this disease and none of the doctors know how to treat him. He is on daily pain killers, anti-depressants and anti-anxiety medicine. The list of med's he can take is very few, having found out the hard way at first. The doctors would give him medicine that would bring on attacks. If there is anyone, particularly a male with this disease, I would appreciate hearing from you. Maybe is he realizes there are others and could share his thoughts and feeling and syptoms, maybe he would feel a little better knowing he was not alone in this.

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I am a 55year old female who has gone through absolute HELL with regards to your boyfriends complaints. First things first. Stop all medication.Find a doctor who knows what he is doing.... If you are in South Africa contact Groote Schuur Hospital and they will guide you perfectly.Depression/anxiety is part of having this disease. There should be NO pain unless wrong medication has been taken. Sun is the biggest evil for this condition. Even inside a building you burn. If you want any other information please dont hesitate to answer me back.

tiny2 · 03-25-2008, 02:56 PM

The information on this disease is very poor.