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I was given the results of my condition as PCT. Prophyria Cutanea Tarda. The pain and blistering are unbearable. EVERY Doctor I have been too only comment..."Well that must hurt a lot. I know nothing about that disease." I can find no one to treat it or give me answers. All I have been told is to stay out of the sunlight.
Can anyone offer me suggestions of where to go to get the answers. Phlebotomy is not an option for me. They have tried during my dialysis treatments and the number count of iron is not diminishing.
Thank you for any help that you may be able to provide me.
Replies to "I was given the results of my condition as PCT. Prophyria Cutanea Tarda. The pain and..."
Thank you for your suggestions. I have seen that website and read all the things that would be helpful. I made an appointment with my doctor to discuss Plaquenil and its benefits. I was put on a very low dose of it and have since been taken off of it. I need to ask them why.
I wish you the best in all you are going through.
@ouchelp220, I'd like to add my welcome and let you know that I merged your posts with this existing discussion:
- Porphyria Cutanea Tarda (PCT): https://connect.mayoclinic.org/discussion/porphyria-cutaneous-tarda/
I did this so you can read previous posts and connect with other members living with PCT like @jfmaddog and @donnasa.
Can you share why phlebotomy is not a treatment option for you?
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Welcome to Connect, @ouchelp220 Your symptoms of PCT sound awful with the blistering and pain. I’m so sorry you’re having to go through this and not getting any relief!
I was looking online for a little more information on Prophyria Cutanea Tarda and the type of the disease you’ve acquired is supposed to the most treatable form by having phlebotomies. Unfortunately for you that’s not an option.
I did find on Mayo’s main site that another treatment for people who are not able to to have a phlebotomy. Taking a medicine used to treat malaria, usually hydroxychloroquine (Plaquenil) can help absorb excess porphyrins and help your body get rid of them more quickly than usual. The medicine is generally used only in people who can't tolerate phlebotomy. This may be a real of hope for you!
Here’s the article that talks about the types of your disease so scroll down until you find PCT. The next page, discussion diagnosis and treatment
https://www.mayoclinic.org/diseases-conditions/porphyria/symptoms-causes/syc-20356066
I’m also giving you the link to Mayo Clinic in case you’d like to get a second opinion. http://mayocl.in/1mtmR63. You can click on there to request an appointment.
If you’re not having any success with your current doctors, are you able to seek treatment at a larger teaching hospital or visit a Mayo Clinic at one of the 3 campuses?