any help appreciated

[doniedoc]

Has anyone had a similar experience to mine? I had been working nights in the oilfield driving truck for 3 years and then transferred to day shift. I immediately began to develop blister type open sores on my hands and lower arms. I was referred to 3 different drs before I found one that could tell me what my problem was. He told me that it was a condition called "porphyria cutanae tarda". from that initial diagnosis I was sent for a liver biopsy and then 4 therapeutic phlebotomies. I am scheduled for a follow up and a discussion about my options for treatments. I really hate to walk into any situation and be blindsided so I was hoping someone could give me some frank info about my sit. any and all help appreciated.

[dranurag]

I would cut my skin soooo easily--even by turning a page of a book the sharpe page margin could cut it . My gums bled during brushing but dentist could not find anything wrong and if I hit someone my hand would swell up with hematoma. There was no bleeding diathesis.scratching with nails would make the skin raw. I would cut easily during shaving my beard. I hope all this will now go away.

[Trinity4]

Is your skin still fragile?  If you hit your hand on something does it tear easily?   Mine has stopped doing that.  What used to happen was I would bang the back of my hand and it would tear and never bleed.  Then the scab would come and last at least 3 or more weeks.  After it finally healed, the scarring lasted months.   This weekend I was cleaning the porch and hit my hand on the side of the table.  Normally it would have peeled back my skin and immediately in my head I thought oh no, this is going to be a bad one but no mark.  I still haven't gotten used to being back to normal in that respect.  Has the doctor checked your ferritin level lately?  Not to say that the phlebotomies you had didn't take care of the problem but it's possible your levels may have elevated again.  Hope that answers your question.  Are you feeling OK otherwise?  I've been in a tx induced funk but so is everybody else around here so I don't feel alone.  I really don't cry very easily but lately I feel I could cry at the drop of hat.  I'm keeping it in check but it's HARD.  Low grade fevers on and off don't help either.   TIRED ALL THE TIME but it's tolerable so I just keep sucking it up.  I swear I could blame 3/4 of my problems on tx but I don't think that's true.  Things get disproportionate in my brain because of tx but tx is not causing all the problems if you know what I mean.  Otherwise, life is good.
Take Care
Trinity

[GSDgirl]

If I get a scrape that doesn't even bleed, within a day I have an awful scab that seems to last forever, then a scar.  No blisters tho.  does this happen to you?

[Trinity4]

I too had PCT which was caused by hepc.  The skin on my hands peeled like a grape with slightest bump to them and I got huge blisters when I was out in the sun.  Had it not been for that diagnosis I would have never known I had the hepc virus.   I am currently treating the virus but prior to treatment I had to have a series of phlebotomies as well.  13 in all.  Ferritin level was very high and after completion of phlebotomies ferritin went back to normal.   Actually, it was lower than normal.   PCT can be directly related to hepc or can be caused by excessive alchohol comsumption as well as hormone replacement therapy (which I doubt you are on LOL)   Basically, PCT is iron overload in the body due to the liver's inability to process iron.  It's much more technical but that pretty much sums it up.  Phlebotomy is the standard protocol in treating this disorder.  Has your doctor done a hepatitis panel?  Did he mention what he attributes the PCT to?  Your liver biopsy should show what condition your liver is in but it confuses me as to why he did the biopsy first without confirming whether you have hepc.  In any event, if you do have hepc they will determine by blood tests what genotype you are and what your viral load count is.  Geno type is important to know as well as the health of your liver in determining if, when  and how long you will have to treat.  Peginterferon and ribavirin is the standard course of treatment available.  Your doctor will discuss all of these things with you and I recommend a hepatologist or GI that has treated others for hepc.  Treatment does not come without a price, it can be very hard on some and not so bad on others but it's still not a cake walk.  It is do-able though, and if you clear the virus you have a guarantee your liver will not deteriorate any further unless you keep on drinking which is not a good idea now or while on treatment.  Some drink socially after tx but I am at stage 3 with my liver disease so it is no longer an option in my lifetime.  I hope that answers some of your questions and please contact me if you need any additional info about PCT.  BTW, I no longer have fragile skin or lesions on my hands.  I think I'm cured of the PCT at least so there's always something to be thankful for right?
Good luck
Trinity  

[GSDgirl]

I also had PCT cause by hepatitis c.  You might need a few more phlebotomies or they might be over.  Make sure you get copies of all your test results, I didn't and am nw trying to get them. There is another on this list that knows a lot more than me who had PCT, her name is trinity and I am sure she will be replying to you also.  DO NOT DRINK ALCOHOL.

Denise