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    • #27383
      Colleen Steele
      Keymaster

      My son is taking a number of supplements a day that his doctors added to his daily intake. He takes magnesium (which was recently increased), Calcium and Vitamin D3. His headache doctor has recommended taking Vitamin B12 daily and ginger as needed (take when he has a migraine). So far his nephrologist approved the additions and increase in magnesium except he isn’t familiar with the benefits or risks of taking ginger. My son needs to check with his transplant doctor next before he starts any of this.

      What supplements are you taking and why? Did your doctor add them to your medication list?

    • #27392
      Jen Cueva
      Moderator

      Hi @colleensteele, I currently am not taking any OTC supplements. But, I do a B12 injection weekly. I love ginger, but I eat ginger chews when I am nauseated—I but them at the health food store. I was not aware that it helped migraines.

      I am glad that y’all are checking with the nephrologist as mine says that I must be careful with taking any extra supplements. This is always important, even for those without kidney disease, to check with your PH team before adding any supplements.

      I was on CoQ10 for a while that my previous PH doctor suggested, but once I changed doctors and my kidneys were involved, they stopped it.

    • #27398
      Colleen Steele
      Keymaster

      @jenc I wasn’t aware that ginger can help migraines either. However, I think a member did mention it once. Cullen’s nephrologist wasn’t up on ginger either so we are going to check with transplant next for their opinion. He would only take it when he has a migraine.

      I have heard of B12 injections but Cullen’s doctor just recommended it in over-the-counter pill forms. Again, nephrology approved but we also have to check with transplant.

      I’ve heard of CoQ10, I think maybe from commercials, but I don’t know anything about it. What is for?

    • #27406
      Carol Volckmann
      Participant

      Hi Colleen and Jen, I also take Calcium, Magnesium and D-3 all suggested by my primary doc who also wanted me to try CoQ10 supposedly good for the heart. I stopped taking it as it did not seem to make a difference and heart is in good condition. Did not know about ginger will have to check that out with my team. Thanks for bringing this topic up!

    • #27414
      Colleen Steele
      Keymaster

      …And thanks @cdvol3gmail-com for replying to it. Interesting that no one has ever suggested CoQ10 for my son. Magnesium is an important one and most PH and transplant patients take it. My son’s has just been upped to 1000 milligrams. So far it’s not upsetting his stomach. I never heard of ginger for headaches either that’s what inspired this topic.

    • #27415
      Carol Volckmann
      Participant

      Colleen, the CoQ10 was reconmended for both my husband and myself supposed to be very good for the heart. It would be interesting if Cullen asked his medical team if he needs to be on it. Magnesium was reconmended for me but I never asked why it is important for PH/PAH patients – do you know? Hope you are doing okay. You and your family are in my thoughts. Have a wonderful weekend and stay dry,well and safe!

    • #27420
      Jen Cueva
      Moderator

      Hi @cdvol3gmail-com, I also took the COQ10 for my heart but saw no improvements for me. When my kidneys started to “act up,” we stopped it. Like anything, these supplements may help some more than others. Also, it depends on the doctor asks as to what they think about taking these supplements. Through the years, I have asked multiple doctors and none have the same answer, imagine that!

      Magnesium is important for muscles and nerve function. It can also with regulating blood pressure and blood sugars.


      @colleensteele
      , I took B12 oral supplements for years, but like iron, my body did not absorb much of it. This is why I now do the B12 injections and iron infusions. If Cullen can keep this regulated with the OTC supplements, that is a big positive.

    • #27430
      Carol Volckmann
      Participant

      Thanks Jen for the info on magnesium- I knew it was good for something! Thank you Colleen re B12 and iron infusions
      One of my Pulmonologist has suggested iron infusions, but I am not quite there yet to have to go in every ? days and have it done. I do take oral. 65mg 3x/day. Have the infusions vs oral helped you?

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