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Treatment for mild porphyria
Can anyone share treatment for mild porphyria? Since having Covid I've had spells of orange urine with fatigue and intense abdominal pain. Eating enough carbs takes care of the pain. I also have elevated porphyria levels. I saw a Liver specialist who referred me to the UCSF porphyria clinic, but the referral was denied because my porphyria levels weren't high enough. I'm wondering if there is actually a treatment for mild porphyria?
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Hi @verdawn, here's what Mayo Clinic suggests about avoiding triggers and treating porphyria:
https://www.mayoclinic.org/diseases-conditions/porphyria/diagnosis-treatment/drc-20356072
I'm tagging other members like @ouchelp220 @jfmaddog @daisy249 @timoteo @clive1395 who have experience with porphyria and can share their insights.
Is the liver specialist or you PCP continuing with your care?
I have Variegate Porphyria and would like to know if there are enough people here to start a group just for porphyria. It’s not a blood cancer or disorder. Yes it’s rare but Mayo is one of the places that does genetic testing for it.
To answer your question my sister and I were diagnosed almost 50 years ago. No treatment, no cure. But knowing triggers is critically important. Also being firm with doctors about what you can and can’t do, take or have done to you. My docs have all been given American Porphyria Foundation safe drug database. Also the NIH and since I can’t post links here there is an excellent tool for looking up safe drugs for porphyria which you can google. Even my dentist has been given these resources.
I learned many years ago to be my own advocate because no doctor I have ever dealt with knows anything about porphyria. That’s why a dedicated group here could be so helpful.
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