PCT return 3 weeks post tx

[LN55]

I finished tx 3 weeks ago. Being predisposed to Porhyhria Cutanea Tarda I have had a sudden but small outbreak of skin erosions and minor blistering on the top of my hands this past week. This outbreak is nothing compared to the condition I was in prior to dx. I had multiple large blisters and fragile skin on hands and some on back of neck and other sun exposed areas then. Prior to HCV tx I had four phlebotomies, eliminated all alcohol, and was tested for hemochromotosis (negative). It was known to me that external factors in my case were triggering the outbreak...HCV, and alcohol intake and that by eliminating them along with reducing serum ferritan the PCT would be controlled.

What I didn't know was the possible catch 22 of the HCV tx as it pertains to Ribavirin. As explained to me and through my own research I discovered the outbreak as a "possible" sx of tx. The Riba kills red blood cells that releases iron that builds up in hepocytes which may trigger PCT in those already predisposed to the condition. To my relief I found nothing to suggest that this relates to relapse or a downgrade of my chances for SVR. In fact my iron saturation is normal but my serum ferritan is elevated. This elevation of SF is typical in tx regardless of PCT.

Obviously at this stage my blood counts are to low for bloodletting at this point but once normal I will again bleed to control this condition and hopefully with the HCV gone the outbreaks will be over. Just thought I would share this post tx issue for anyone else that may have or has experienced PCT. Thanks.

[pooh55811]

Congratulations on being UND at 12 weeks post EOT! As you know, being UND at 12 weeks post EOT gives you 99.7% chance for SVR. Here's wishing you SVR! Keep us posted. Hopefully your PCT will clear up too.

[LN55]

Just completed my 12 week post tx labs and happy to say that I'm still undetected and LFTs and all other vitals are in the norm. I also had them check my serum ferritin and surprisingly it was on the low end of normal (68). As I originally posted I suffered a sudden outbreak of PCT symptoms in the form of blistering on the back of my hands about 3 weeks post tx. I am no longer blistering but I'm still experiencing easily cut skin resulting in scabing and erosions on my hands associated with PCT. I doubt they will have me do phlebotomies as I did before tx since my ferritin is this low. I hope this resolves but seems strange that I'm  still symptomatic with PCT at this time? Had 4 phlebotomies prior tx that got it under control ( ferritin was close to 600 then) . Checking with my GP soon on this.

Happy New Year!

[Dee1956]

Thank you so much. I really appreciate your kind words,
take care
my best to you

[LN55]

Thanks Jules. I will keep you posted. They are not going to address my PCT until I have my 3 month post blood work done. Just got to remember to protect my hands as much as possible until then. I know you can relate to what a challenge that is sometimes. I am really sorry about your relapse but the newer drugs appear to be coming soon. Good luck and thanks again.

[LN55]

Thanks for the kind thoughts Dee and thanks for getting this forum started. Just now replying because as you know there are a lot of things to put back together and catch up on after finishing tx. Feeling better every day and really started feeling good around week 6 post tx. Just dealing with the PCT outbreak but seems minor after what I've been through. I will deal with that soon. Thanks!

[jules2551]

PCT is difficult to treat while the patient is also being treated for hepatitis C with interferon and ribavirin. Therefore, PCT is generally treated first in cases where the two diseases occur together. Patients with marked iron overload should be treated by phlebotomy rather than hydroxychloroquine. PCT is often more severe and difficult to treat in patients with end-stage renal disease. Iron supplements should be stopped and erythropoietin administered to support small volume phlebotomies to reduce the serum ferritin level. Hydroxychloroquine is not effective in this setting.

http://rarediseasesnetwork.epi.usf.edu/porphyrias/professionals/PCT/index.htm

I have read where Riba can cause these breakouts.  I had a severe breakout about 5 months into tx.  Even though I was UND at the time I did relapse at the 6 mo EOT mark.  Wishing you the best and hope you SVR.  Let me know how you make out.  

Jules

[dontworry_behappy1]

How did you find out you had this?  I'm not even going to try to spell it.

[Dee1956]

Thank you so much for sharing this. I am happy you are finished tx.
I hope as you recover from the tx,  you will feel better all the time.
My thoughts are with you.
You have done a great job during a trying tx
D

[LN55]

Guess I should say PCT skin manifestations return after tx as the PCT is chronic anyway. I also should spell it correctly "porphyria" (I think). Thanks