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I have been aware that I have had PNH since my pregnancy...

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Guest
Guest

I have been aware that I have had PNH since my pregnancy with my second child, he is now almost 29. My first twelve years were filled with illness and constant blood transfusions. I then started to exercise regularly and although I found this very difficult at first, I soon found that my blood count was remaining stable and sometimes climbing of its own accord. I have not had a transfusion since 1993 and although I do have times when I am quite low, but it never seems to get as low as it did. I am not an exercise freak, and sometimes go for a year or more doing little or nothing and not being able to 'be bothered' but I am convinced that it helps and every so often I make myself do more and I do feel better eventually. I work full time and get tired, but do not let it affect my life, I suppose I am just used to feeling worn out. I have recently started to get many aches and pains in my joints and this is putting me off exercising but I will get back there as I am sure that it helps overall.:D

[i:ee7d0da78b]This message was automatically imported from the original Patient Experience[/i:ee7d0da78b]

0 likes, 3 replies

3 Replies

  • Rosalind
    Rosalind

    Posted

    I also have PNH, diagnosed in 1987. However, I have regular blood transfusions as my blood count drops to 7.4 or so over 12 weeks. Iam always tired but manage to have a pretty good life. I love to garden and be active, and can usually do so even on quite a low count. However, I acquire such a lot of iron in my blood, through transfusions, that I have to have iron chelation.

    My original consultant said that it was being bloody-minded that got me through: I just haven't got time to be ill.

    Wishing you well, regards,

    Rosalind

  • cheryl08343
    cheryl08343 Guest

    Posted

    I also have PNH. Do you take folic acid or any supplement?
    • Rosalind
      Rosalind cheryl08343

      Posted

      I don't take any supplement, but in the last couple of years I've been having the drug Solaris (Eculimazab) from the PNH team at Leeds, which has helped give me some energy. It stops the blood complement from breaking down. Many PNH patients have reported very good results with this . If you aren't going to a specialist clinic, then it would be a good idea to get to one. There is a lot of research and development to help you. Best Wishes, Rosalind

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