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am i the only hh person with skin rash?

Posted , 16 users are following.

moodyali
moodyali

I'm 47, had symptoms since at least last summer, eventually got diagnosed in Jan this year, but can only get to see haematologist in June. Main symptoms fatigue, very itchy rash on neck and lack of sensation on neck skin, depression, joint and muscle pain. It takes a whole week to recover from one hour of exercise. Docs all say rash, depression and muscle pain not part of hh and more or less dismiss my symptoms saying my levels are not so high, although saturation levels about 85%. To be honest I am very confused about all the different levels everyone talks about knowledgably.

I feel shy about posting on a forum as normally v private person and never done so before. However I really want to know if docs are right or if anyone else has rash?

1 like, 18 replies

18 Replies

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  • KEVINFRANCIS
    KEVINFRANCIS moodyali

    Posted

    I posted yesterday about HH. Will be seeing a specialist tomorrow. I have a rash on the inner joint of the elbow and on the wrist. Will tell you more on thursday good luck
  • peggy96967
    peggy96967 moodyali

    Posted

    One of my symptoms was itchiness for years without a rash.  Ferritin went from 1300 to 30 within 2 years with Saturation % from 0ver 80 to just 12 as of now.  I am confused as to whether 12 is too low for saturation %
  • ckbearhugs
    ckbearhugs moodyali

    Posted

    Hello Blood Brothers and Sisters,

    Diagnosis has been a treaty business.  I, too, went to doctor's for many years before getting the diagnosis of hh.  I never went specifically for my fatigue as I was in my early 50's and just thought it was part of menopause.  I had joint and muscle pain, also.  I was also seeing doctors for over 3 years for an itchy rash on my neck, chest and forearms.  Never received a diagnosis but after several venesections the rash got better.  It has left scarring from the blisters, etc.  When I returned to my dermatologist for my annual checkup and I told her about my hh diagnosis she told me she realized my rash was caused by PCT, Porphyria Cutaneous Tarda.  A rare condition that affects the blood and liver (you can find on google).  The treatment is also venesections.  Those with a rash, please check this out.  It can carry serious liver problems also if not treated.  The good thing is the hh treatment has been helping mine.  Also, now I know if I start itching it is definitely time for a blood draw.

    Another thing I have noticed is if i drink alcohol I get the itching within 15 minutes.  Must have something to do with the liver processing.

    Sincerely, ck

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