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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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4 ReactionsA 40 year old female is considering a partial or complete hysterectomy but need to know what hormone replacement therapies are safe or have been tried before. Does hormone desensitization help?
VP- genetic test determined I have Variegated porphyria after dealing with symptoms for 19 years. I have been trying to get into UCSF for two weeks now, insurance authorization issues even with a PPO. It concerns me that your lab result numbers were too low to treat. Are they treating the data or the patient? If you are having symptoms and looking for relief how in the world would they not offer a treatment plan?
I am searching for a way to get relief from my symptoms and hoping to have a better quality of life than my mother who had similar symptoms. MDs never considered porphyria, and she died of cancer in the bile duct pathway.
Anyone reading this, what works to reduce your symptoms? Are there any medical providers out there who know porphyrias and how to treat/ manage pathit?
Thanks