Coffee, coffee, coffee…well, not any more

I’ve known for a long time that coffee is not compatible with porphyria.  But, I really like coffee and was able to get away with it for a long time.   I’ve become so sensitive to it, that I had to quit.   It’s been 2 weeks now; and, I am feeling much better.  It really is an addiction.  One thing that I’ve found that helps is to replace it with hot green tea (organic, of course).   Having a cup of coffee with my wife, a friend, or business associate is an important routine for me.  I can still take part!

I should have quit earlier.  It was easy for me to justify, as I have had to give ups so many other things.

It could be worse.

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8 Responses to Coffee, coffee, coffee…well, not any more

  1. Heather says:

    I too have Porphyria. I was diagnosed in June at age 38. I found my first blister on June 5, and since then I now have at least 20 blisters/erosions. I have been through 10 phlebotomies so far. Still going through weekly phlebotomies currently. Why do you say you can’t have coffee? It wasn’t on my long list of things I can’t consume. Can you explain why you can’t have it? I drink one cup/daily.

    • Greg says:

      Hi Heather,

      I’ve known for a long time that coffee is not good for porphyria. And, I’ve noted that sometimes I have felt a bit “off” after having a cup; but, it has gotten much worse. So, I’ve added it to my list of bad foods. I’ve been trying to find a replacement; but, most teas cause porphyria feelings.

      I’ve categorized foods, supplements, etc through meticulous food and activity logs. There are probably foods that I avoid unnecessarily; but, the pain of choosing wrong is significant.

      I originally thought I had AIP; but, it turns out to be variegate porphyria. The cutaneous effects only show after I get a sunburn that is sensitive to touch. I probably have a build up of porphyrins when I get a little pink; but, it hasn’t been noticeable…then, again, I am always dealing with managing porphyrins.

      I have no experience with cutaneous porphyria; but, you might want to experiment with cutting out coffee.

      I am sorry that you are going through these troubles. Hang in there.

      Greg…

  2. Caro Rebora says:

    hello Greg!! It happened to me too. I finally quit coffe and I miss it so much.. I replaced it with earl grey tea, and it doesn´t feel the same but I can live with the idea.. I tried with everything, instant coffe, malt coffe, coffe figs..and nothing resulted. All of them made me feel very bad. So I´m trying to find the best tea in the world to feel happy when I really need a coffe..
    Of course it could be worse..but I understand how you feel
    hugs from here 🙂
    Caro

    • Greg says:

      Hey Caro!

      I am sorry to hear that you had to go through it, too.

      I never thought it would be so hard! I was expecting a couple days of yearning / discomfort. Well, the physical cravings are gone; but, I still really, really, really want a cup of coffee! I haven’t had much luck with tea; a lot of them cause porphyria problems. Right now, the only safe type is Bigelow organic green tea.

      As you say, it can be worse.

      Good to hear from you. I hope you are well.

      Greg…

  3. Tim says:

    Hello, I am looking for help in reducing my symptoms of AIP. I was recently DX this past June. For almost 10 years I was told that I had Anxiety, PTSD, Panic disorder and many other things. A went to a non military clinic and they did blood, urine and fecal test. When the results came back I was sent to Duke where they wanted me to be a regular patient of theirs. Due to the traveling problem, I settled for a hematology/ Oncology clinic in our town. I have asked my doctor how do I manage my attacks through diet etc. She stated just increase carbs. I am not doing well, does anyone here have advice. I read your it’s MY responsibility blog. Can you please go more in depth, on what I should be doing? Thank you so much for your time!

    • Greg says:

      Hi Tim,

      I can only tell you about what I have done that works for me. Everyone is different.

      On the top of my website is a picture and below the picture are a line of words. Click on “Diet” and “Food Log”; those are good starting points. Also, something that has helped me tremendously is using glucose tablets and powdered glucose. My reasoning is…the first thing a knowledgeable doctor will do for a patient having a porphyria attack is to administer IV glucose and painkillers…so, why wait until the situation is that bad? When I feel porphyrins building up, I chew on glucose tablets or stir some glucose powder into some water; it generally helps me. Tablets are available at Publix, Target, Walmart website, Amazon, etc. The glucose powder is available on Amazon.

      I hope that this helps.

      Greg…

  4. Tim says:

    Thank you! How do you know when they are building up? I can now tell when my nerves in my arms start jumping and stomach is a little upset that I need some quick sugar. With that said I woul love to know the signs earlier.

    • Greg says:

      Hi Tim,

      For me…I have a few indicators; so, if any of these happen, I start taking action.
      – eyes get droopy
      – hands shake
      – thinking gets foggy
      – irritability
      – apathy
      – stomach starts feeling uncomfortable

      Stomach discomfort is really a bad sign; because, I’ve let it progress too far and recovery is longer.

      I hope this helps you. Everyone is different; so, it is really up to you to figure out how to stay ahead of it. My wife helps a lot, as she can often tell before I can that I am having problems. It also helps that some of the people that I work with keep an eye out for me.

      Greg…

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