Just received results...

[sideways77]

Hi,

If I'm asking redundant questions I ask your indulgence.  I did look through the forum first, but still have a few questions.

I just recieved the call from my Gastro Doc, confirming that I have Hep C.  I won't know the particulars till I see him next week.  I recently (6 months ago) started showing signs of Porphyria cutanea tarda, and was told by my Derm Doc to see the Gastro Doctor.

I will assume at this point from everything I've read so far, that I probably contracted the Hep C through IV drug use in the 80's.  I guess your past can jump up and bite you.  I would imagine about everyone here had the same questions I have right about now when you got diagnosed.  So any answers, links to pertinent info, or anything in general would be greatly appreciated. I have tons of questions, but will only ask the most important one to me right now. Thank you very much, I very much appreciate any information.

1.  Can I transmit this disease sexually? - The articles I've read basically say "Very rare"  or even "Null"  Is this correct?



Thanks,

Greg

[sideways77]

I'll keep you posted... kiss the pooches for me :)

[SISLou]

OK I feel better about the HepC concern... but am very concerned about your health...your X..I will stay posted to this sight as info becomes available..love you

[sideways77]

That's very encouraging news.  How long did you do the treatments?  Are your hands pretty much normal now?  I am doing my absolute best to keep them out of the sun for sure.

Greg

[GSDgirl]

You really should wear gloves in the sun, the sun brings out more blisters.  IF your doctor knows about the PCT why in the world would he / she wait for the blood letting (LOL)?  As far as I know THAT is the only way to reduce the porphyrins / ferritin in your blood.  My Dr (actually it was my Dermatologist) ordered it right away after it was confirmed.  My hands hurt so bad that I couldn't even hold a pen and bend my fingers to hold a pen.  It does get better after the blood removal.

Denise

[sideways77]

I appreciate the great information and warm welcome :)  My Ex was very concearned, everyone, including health care folks were telling her it was High risk Sexually transmitted.  I've passed on to her what I've read, and heard here.  She got tested, and as you can guess, it was negative.

Denise and Trinity, I'd really like to get the 411 on the PCT from you both.  I've read about the phlebotomy treatments, and actually asked my gastro doc....but he wouldn't give the go ahead till my test results were back  GRRRRRRR!!!  My hands are killing me...LOL.  I work in a very rough environment for my hands.

Thanks again for everything!!!


Greg

[orleans]

What they said. Go ahead and ask your questions, we've all been where you are. welcome, jerry

[Trinity4]

Just a little side note.  You really should have a liver biopsy given the fact you have HCV and PCT.  I'm quite sure your doctor performed an HCV RNA PCR which confirmed your diagnosis.  If you have PCT and your doctor has confirmed HCV whether is was positive for antibodies only or a viral load test (PCR) you are can pretty much be assured you have chronic hepc.
Based on your biopsy results a good hepatologist or GI that has treated many with hepc will recommend the best approach to take.

Trinity

[GSDgirl]

I knew you would chime in with some great advice!!

Greg, I second everything Trin said above.  She obviously is the other with PCT.  I had the phlebotomies every 2 weeks for ten weeks and that got my ferritin low enough to start Treatment.

My scars are faint but I will be able to tell more in the summer.  

Denise

[Trinity4]

PCT is how I found out I had hepc.  Discuss phlebotomy treatment with your doctor which is like donating blood weekly only they discard your blood.  If you have PCT your ferritin level is high and phlebotomy reduces the ferritin and is the recommended treatment for controlling PCT regardless if you plan on treating the HCV anytime soon or not.  It's very important you get the PCT under control.  I did three months of phlebotomy treatment prior to starting tx and have been treating almost a year and the PCT has not returned.
Phlebotomy treatment is something you definitely want to do PRIOR to starting treatment because once you are on treatment your hemoglobin levels will drop and your body can't tolerate the loss of blood and the medications too.   When someone has PCT, iron can accumulate in the liver causing addtional fibrosis and the risk of liver cancer.  PCT can be very hard on the liver so make sure you discuss it with your doctor.  Avoid alcohol and exposure to the sun because it will cause the skin to blister more.  The scars on my hands from the PCT have never completly gone away but my skin no longer tears and no more blisters.  

Good Luck
Trinity

[ladybug52]

This scenario has always intrigued me.....a virgin has sex for the first time with a vietnam vet who is carrying the disease that isn't called hep c yet, or even non a non b hepatits. Surely it could be contracted that way in the normal course of events, right?
Am I being too graphic? Too curious?
Bug

[GSDgirl]

there with are now 3 of us on here porphyria pct.  I was wondering how you got diagnosed with the pct but I see you are The sun brings it out.  

My husband also does not have Hep C and we have been together 20 years.  No question is redundant.   Welcome to the site!!

Denise

[Bill1954]

The articles you’ve read so far sound accurate; it’s not usually associated with sexual transmission, unless accompanied by trauma. I was married for nearly twenty years (assumedly infected the whole time) and my ex and grown kids have tested negative for virus. Most physicians don’t suggest discordant couples change their sexual habits upon diagnosis.

When you have your doctor appointment, make sure to ask for your HCV genotype; this will dictate the length of treatment, if necessary, as well as your response to treatment meds.

Also ask whether a liver biopsy is in order; this can help drive treatment decisions; with little liver damage, you might want to postpone treatment for a bit. There are new drugs currently in late phase clinical trial that might shorten treatment duration, as well as increase response.

Keep reading through this forum, and take a look at the following site for more info:

http://janis7hepc.com/

Take care—

Bill  

[ladybug52]

Re: question number 1....That's often been debated. I guess that "very rare" is closer to correct. There would have to be transmission of blood into an open area of skin, but it could happen.
I have been married 32 yrs and my husband does not have the virus.
I'm sure there will be others who will answer your questions as they come to you. I came here and other sites when I found out, but this is the only place I continue to return to. I think it's the best.
Good luck. I had a hard time staying calm when I first came here, but now I've treated and it's all behind me. So many people helped, I come back periodically to try to help others.

[jmjm530]

Welcome. Yeah, "very rare" to "null" pretty much sums it up, unless it's anal or what is termed "rough" sex where I presume there may be some tissue tearing.  The recommendation therefore is that monagamous couples do not need to use condoms. Of course, condom use is an individual choice and something that many think is the correct thing to do unless you fully disclose to your partner and therefore mutually accept the risks as small as they may be. BTW once you get your HCV status confirmed you might ask for a referral to a liver specialist (hepatologist). It's a fast moving field and hepatologists are much more up on the latest protocols.