Hep C viral load with also a diagnosis for Porphyria Cutanea Tarda

[slotgirl]

The Porphyria is a very rare blood disease often caused by Hep c. I had blood transfusion over 25 years ago and acquired the Hep C. Did not have treatment as liver biopsy showed minimal damage. However now that the PCT has come out. Blisters all over my hands very painful. I am in treatment of blood letting to remove the PCT iron was over 512. In my 3rd week. But now after additional testing  my Hep C is I believe active with a viral load of 596,000 IU/ml plasma. Log = 5.78 I don't know what these means as many others don't seem to understand that number either and something I read said that number does not really indicate how bad the disc ease has progressed. Does anyone have both of these things and can offer any help. I have not seen a liver DR yet but my hands look horrible and when not filled with blisters then the scares remain. I have not heard of anything topical that can be applied.

[jules2551]

Steroids are the only drug that will reduce your PCT symptoms.....I dont know where you heard otherwise.  I just know from experience and that being three breakouts.

Jules

[patra_]

There are ways of getting your treatment/meds, even if you have no insurance.  The teo ttheat I know about, off the top of my head, are apsth Support, through Gilead and the PAN Foundation (who doesn't just help with hepc meds).  Probably you canc call each company directly and ask about this help, since you are going to a freeclinic and they probably don't have the time. If I understand what I I read by others going that route, they will give you the forms and tell you what your Dr's Office must, etc.

Please don't let this overwhelm you!  Take it one step at a time and you WILL make it, and remember, this Forum is here for information, support and to cheer you on (or up, as needed : -). ).  

Good luck and dom't give you.  I saw a poster posted by Dee??? just today, that said, you don't know how strong you are until you have nothing else.  Powerful statement, but you are not there yet.  Keep on Keeping on!

[slotgirl]

Thanks for replying. Steroids is the worst thing for the PCT and they kept giving me that in the emergency room with all the misdiagnosis. Im waiting to get to a liver special but right now in limbo only treating the PCT with blood draws.

[slotgirl]

Thanks for responding. Right now I am at a free clinic as no job and no health insurance. He got the hep C genotype back today and it was a 1 A which I have not read about yet. I think that is less treatable than the 2's or 3's. He has consulted a liver Dr. but  not sure I could ever afford the treatment if there is one. I am so overwhelmed. No where to run or hide from this but if I had treated years ago I probably wouldn't have developed the PCT. Thanks for commenting and I hope to get into the gastro neurologist soon. They have to get the porphyria under control first then treat the hep C.

[jules2551]

First, if you are not seeing a Hepatologist, you should be seeing one. A Hepatologist   would be more knowledgable and more experienced in treating your somewhat complicated situation. The Hepatologist that you see should be  knowledgable in treating both PCT and Hemochromatosis. You should call your Hepatologist in the morning and get an order for steroids to treat your PCT. The steroids will relieve the pain and heal the blisters. If you cannot get a hold of your Hepatologist, then call your PCP to get an order for the steroids.  

You need to be tested for Hemochromatosis. Prior to treatment you should have the PCT, iron overload, and Hemochromatosis, if you have it, under control.

As far as the numbers go, the viral load is not indicative of the severity of the liver damage. It is more useful in determining if treatment is working after you have started treatment.

So the important things are to get an order for steroids to treat your PCT and get a competent Hepatologist who is knowledgable in treating Hep C as well as PCT, iron overload, and Hemochromatosis.

www.porphyriafoundation.com

[can-do-man]

Hopefully jules2551 sees this and can give you some answers. Best to you.

[Idyllic]

Wow sorry no one is responding to this.
Who diagnosed and treats your PCT?

A dermatologist? My derm knows a lot about Hepatitis C and he would have made the possible connection. In fact one time he told me that quite often he has been the one to detect/suspect HCV when a patient comes in with a mysterious skin condition.

There have been some people on here with HCV who also had PCT.  PCT is often what is called an extrahepatic manifestation of Hepatitis C and quite often treating the Hepatitis C will treat the underlying condition. This is why even with only minimal damage some people go ahead and treat.

Here is the thing. With older meds (peg interferon and Riba) you would very likely have to get your iron under control before you treated. With the more recent &  effective HCV meds that might not be the case however. This is an important detail that could matter a whole lot.

It helps to know the stage of fibrosis you are and what your Genotype is.

Either way I strongly encourage you to see a Hepatologist since even though what you are going through is no doubt a very harrowing experience (I have seen images of PCT on the hands and I can believe you must be miserable right now) it might (MIGHT) subside if you treat your Hepatitis C


I am actually parroting what I have learned on here over the years. I wish and hope one of the more experienced members would come out of the wood work but either way now is the time to see a liver specialist :)

http://www.hepatitisc.uw.edu/go/evaluation-staging-monitoring/extrahepatic-conditions/core-concept/all

http://www.medscape.com/viewarticle/811058