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TRINITY PCT?

My doctor tested my ferritin levels last week because of his concern with my rashes, that are getting worse.  Especially on my hands.  I read some of your posts about pct.  My ferritin level was 1200.  My HGB is up to 10.0, was as low as 7.5.  wbc is 1.6.

Does it sound like I could possibly have pct?  Can you share with me your experience with pct?

Thanks so much!

Jean
3 Responses
475300 tn?1312423126
Hi, I am not Trin but I also have / had PCT.  There are specific tests to diagnose PCT which my dermatologist did.  AS far as myself and Trin the manifestations were large liquid filled blisters that made a mess nof our hands.  The blisters were like a burn that filled with a clear liquid.  In my case it did not start with a rash but only the blisters.  The blisters hurt so bad, almost to the bone hurt.  Trin will chime in here I am sure of that and she is better able to put into words tham me.  Good Luck

Denise
Avatar universal
Denise, you summed it up perfectly.

jt, you are on treatment correct?  My PCT was diagnosed prior to treatment.  My ferritin level was around 800.  I went through phlebotomy treatment (awful) and the symptoms went away.  The blisters are directly associated with PCT.  Everyone who has it gets painful blisters, generally on the back of the hands but can extend to the arms.  The blisters take forever to heal and leave scars. The skin also tears easily, just a normal bump peels the skin back.  My doctor said treat the HCV and the PCT will go away.  They have checked my ferritin levels periodically and they are within normal range.  It's unusual to develop PCT while on treatment.  Rashiness can be associated with PCT -  but it's primarily blisters and skin tearing.  If you have blisters, they can biopsy the fluid to see if you are postive for porhyria or a blood test can show this disorder because it is a deficiency of uroporphyrinogen decarboxylase (UROD), a cytosolic enzyme that is a step in the enzymatic pathway that leads to the synthesis of heme.   While a deficiency in this enzyme is the direct cause leading to this disorder, there are a number of both genetic and environmental risk factors that are associated with PCT.
I hope that helps.  BTW, PCT is chronic, there is no cure but you can all but eliminate the symptoms with phlebotomy or medication.  You should not attempt while on treatment.
Good Luck
Trin
Avatar universal
Thank you both!  Yes, I am on tx. my 14th week.  
My rash begins with TINY blisters that dry out and then will not heal!  They just become dry, tough, patches that itch like crazy.  Some of them have gotten infected.  

I go to see my new hematologist tomorrow.  Hopefully she will help me with this.

Jean
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