Results 1 to 7 of 7

Thread: Porphyria TOO? Come on! Anyone Else?

  1. #1
    Join Date
    Mar 2010
    Location
    sunny HOT phoenix in nice cool ac
    Posts
    16
    Blog Entries
    1
    Thanks
    2
    Thanked 5 Times in 5 Posts

    Default Porphyria TOO? Come on! Anyone Else?

    Oy...same time dx'd with SLE also dx'd with porphyria. I admit I haven't gone for more sensitive testing for it yet. I'm suppose to be doing a 24 hr urine and fecal (YUK). So is this cutaneous due to the MASSIVE rashes the lupus did to my skin? I have photosensitivity like crazy and the arizona sun did a number on me!

    Should I take the porphyria seriously or just look at it like "extreme" reaction to the UV?

    Anyone else has or had this?

    Thanks in advance, Julie

    ps. I am not a vampire!!!!!!!! (the porphyria thing)

  2. #2
    Join Date
    Oct 2006
    Location
    Salem, Utah
    Posts
    133
    Thanks
    0
    Thanked 6 Times in 6 Posts

    Default

    Now that just bites. So sorry you have to deal with this.

    And hey, look at the bright side. Vampires are really cool right now, even trendy.

  3. #3
    Join Date
    Mar 2010
    Location
    sunny HOT phoenix in nice cool ac
    Posts
    16
    Blog Entries
    1
    Thanks
    2
    Thanked 5 Times in 5 Posts

    Default

    Thanks for the well wishes Teresa!!!! Julie

  4. #4
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,673
    Blog Entries
    9
    Thanks
    1,555
    Thanked 912 Times in 576 Posts

    Default

    Be very careful with a diagnosis of porphyria and Lupus. The rare co-existence of lupus and porphyria raises some very difficult diagnostic and treatment problems. The two diseases have many clinical signs in common, and treatment for lupus erythematosus with hydroxychloroquine (Plaquenil), for example, may trigger porphyria in susceptible patients. The association between the two diseases may simply be coincidental, or may reflect an undiscovered link.
    A patient with systemic lupus erythematosus may present with malar rash, arthralgia, anaemia, anti-native DNA antibodies in the serum, and nephritis. These conditions may improve with treatment of corticosteroids and cyclophosphamide (for example). However, doctors may attribut any abdominal pain to lupus serositis or nephritis. If the patient develops any profound neurological symptoms, then the possibility of co-existing porphyria should be considered.
    It is not known whether the association between porphyria and lupus erythematosus is purely coincidental, or whether it represents some common link. However, the association of these two diseases leads researchers and doctors to believe that these two conditions are somehow connected and that neither condition should be underestimated!

    Porphyria is a group of disorders caused by abnormalities in the chemical steps that lead to heme production. Heme is a vital molecule for all of the body's organs, although it is most abundant in the blood, bone marrow, and liver. Heme is a component of several iron-containing proteins called hemoproteins, including hemoglobin (the protein that carries oxygen in the blood).
    There are several types of porphyria, which are distinguished by their genetic cause and their signs and symptoms. Some types of porphyria, called cutaneous porphyrias, primarily affect the skin. Areas of skin exposed to the sun become fragile and blistered, which can lead to infection, scarring, changes in skin coloring (pigmentation), and increased hair growth.
    Cutaneous porphyrias include:
    *congenital erythropoietic porphyria,
    *erythropoietic protoporphyria,
    *hepatoerythropoietic porphyria,
    * porphyria cutanea tarda.

    Other types of porphyria, called acute porphyrias, primarily affect the nervous system. These disorders are described as "acute" because their signs and symptoms appear quickly and usually last a short time. Episodes of acute porphyria can cause abdominal pain, vomiting, constipation, and diarrhea. During an episode, you may also experience muscle weakness, seizures, fever, and mental changes - such as anxiety and hallucinations. These signs and symptoms can be life-threatening, especially if the muscles that control breathing become paralyzed.
    Acute porphyrias include:
    *acute intermittent porphyria
    *ALAD deficiency porphyria.

    Two other forms of porphyria, hereditary coproporphyria and variegate porphyria, can have both acute and cutaneous symptoms.

    Given the many presentations and the relatively uncommon occurrence of porphyria, often patients may initially be suspected to have other, unrelated conditions. For instance, the polyneuropathy of acute porphyria may be mistaken for Guillain-Barré syndrome, and porphyria testing is commonly recommended in those scenarios. Also, because Systemic lupus erythematosus features photosensitivity, pain attacks and shares various other symptoms with porphyria, one or the other diagnosis may be mistakenly made. It is also not uncommon to find that porphyria and Lupus can and do co-exist in the same patient!
    Again.. it is important that neither condition should be underestimated as both can cause grave and sometimes fatal damage!

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

  5. The Following 2 Users Say Thank You to Saysusie For This Useful Post:

    jujubeee (03-30-2010), TriXie (08-17-2013)

  6. #5
    Join Date
    Mar 2010
    Location
    sunny HOT phoenix in nice cool ac
    Posts
    16
    Blog Entries
    1
    Thanks
    2
    Thanked 5 Times in 5 Posts

    Default

    Thank you SO much for the GREAT information. I definitely see the importance of being tested with a more sensitive test for porphyria. How ever am I going to get good care at this point. My intuition tells me my rheumie isn't going to cut it if I really have both porphyria and systemic lupus. The SLE is diagnosed (biopsies, double stranded DNA and ALL blood labs in the lupus highly positive (sm antibodies and all those) so my rheumie says even though we'ere talking MCTD and kidney involvement that for now we're just going to say it's absolutely SLE, no doubt at all.
    Should I contact a teaching hospital or a university hospital or WHO. So far my dermatologist is the smartest doc I have. Next to that I have alot of trust in my neurologist...should I start there for a referral and an opinion?
    My plan then will be to get the fecal and 24 urine for porphyria, get the results and set up the appointments with my neurologist and dermatologist.
    THANK YOU FOR MENTIONING THE IMPORTANCE of having the two diseases and getting me off my butt. I have a wonderful family who counts on me. I work and have coworkers who depend on me too.
    Julie

  7. #6
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,673
    Blog Entries
    9
    Thanks
    1,555
    Thanked 912 Times in 576 Posts

    Default

    I think that your plan is a sound one. It would not hurt to mention the possibility of the two diseases co-existing in you to whichever doctor you trust the most and you feel will act upon the information appropriately!
    Let us know what the results of your tests are and what decision you have made. I wish you the very best and remember, we are here for you.

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

  8. #7
    Join Date
    May 2010
    Posts
    2
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    hi.. im new.. been searching for others who suffer from both lupus and pct.. i thought i was a freak!! good to know im not alone.... thanx for ur post.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •