first symptoms

[Taboo40]

I was diagnosed in 1993 with hepC probably acquired it in Vietnam battlefield blood transfusion, I went through treatment for 48 weeks in 2003. The disease did not clear. Just this week I have some swelling in my feet, ankles and legs. Is this a critical turning point? I have Dr. appt., but it is 6 weeks out: should I push for sooner apt.? How effective are the so called diruretics and what are side effects?

[Trinity4]

I will say this about that.  It is a personal decision.  Many say tell a select few or tell everyone and many say they tell no one. It is whatever you are comfortable with.  I read a discussion several days ago about this same subject and it went on and on. Finally posted with does it really matter!!  Can be a touchy subject around here and some are more vocal than others so I will only say in my case I choose not to disclose as I have enough on my plate right now. Not that I am ashamed at having this disease or reluctant to debate this, just that my opinion is just that "my opinion".
Trinity

[Taboo40]

Yes, my doc said PCT is uncommon as well, mine started in 1992 and cleared by 1994 by itself, all the scarring disappeared but that is what drove me to the liver doc as well. My doc also said that it can be cured by bloodletting, one of the few symptoms that is still cured in that fashion. It seems we share the same story, and in my experience the scars fade and go away slowly. I have absolutely no scarring now and the skin is normal. I hope you have the same results.  Thanks for your response, I just found this forum this week and it has been very helpful. When I was first diagnosed in 1992 I asked my doc if he knew of any support groups for hepC and he almost laughed at the notion. I did some investigation and found nothing in my area, and gave up until now. Again, thanks for your response, it is so comforting to speak with someone who shares my experiences. In my life, this a secret disease, I tell no one cuz they don't need to know. Do you feel the same way?

[Trinity4]

I had PCT too, which was how I found out about the hepc.  I did 2 months of phlebotomy to reduce my ferritin level before they would start me on tx.  If you don't already know the PCT is caused by the liver's inability to process iron and the excess iron filters back into the bloodstream causing blisters and fragile skin on the back of your hands.   The PCT is what I initially went to the doc for.  He said it's associated with hepc infection and I should have a test and the rest is history.  The backs of my hands have cleared up but still have purple scars.  My doc says not everybody with hepc gets PCT, I just happened to be one of the unlucky ones but I think it's been resolved.  I have only heard a couple of people talk about it on this forum so it must be uncommon.  Just thought I'd share that with you.
Trinity  

[meki]

Check into Vertex and Alinia - and Clinical trials - don't know which ones are avail and on the market yet - but Check Andiamo's posts out --- he's a bright hopeful shining star.

[Taboo40]

Thanks for your response. I went through treatment in 2003, but you say there is new stuff? My Dr. of 20 years retired and I have a new one (Kaiser) and she has not mentioned anything about something new since 2003. I am curious to know if there is something new. I did the interferon along with ribavarin and tolerated it well, however my white blood cell count always hovered close to the edge.

[IAmTheWalrus]

If it's been a long time since biopsy, you should probably have another one along with the usual liver enzyme tests. That is the usual determination of the condition of the liver. The swelling is certainly a symptom of advanced liver disease. Have you been monitoring your condition since failed TX? It sounds like we both contracted HCV at around the same time. My disease progressed very rapidly after decades of not much progression. Get a workup soon!

Best luck,
Brent

[meki]

I think if you have significant swelling that is causing you discomfort - that yeah - you should push up the doctor's appointment - advising them that You are HepC Positive and you have treated unsuccessfully.

The disease moves at different paces in different people - the treatment alone can cause a plethora of issues - like RA and more... My suggestion is that if ANYTHING HURTS... or you feel abnormal or are uncomfortable - that you should see your doctor...

Perhaps not Emergency room fast --- but much faster than 6 weeks.

Good luck - and consider tx again if you can tolerate it - especially with the new stuff.

Meki

[Taboo40]

Thanks for your response I have been diagnosed since 1992, my one and only symptom until now was Porpheria Cutaneous Tarda, (mysterious blisters on my hands and very thin outer skin layer which teared easily) and that symptom resolved itself in less than two years. I don't know the genotype, my VL was 96,000, and after treatment it was reduced to 48,000. I tolerated treatment very well, never missed a day of work. I have not had a biopsy done, just routine labs and catscans every six months. they are looking for cancer of course. The swelling in my legs and ankles is new and I am a bit worried, it is uncomfortable and I still wonder if it can be reduced by diuritics.

[Trinity4]

Swelling in ankles, legs etc can be attributed to a variety of things.  Doesn't necessarly mean you are experiencing liver problems but I would certainly push for an earlier appointment and you will need a liver biopsy to find out what kind of damage you are dealing with.  The symptoms you have can be a sign of some cirrhosis but not necessarily.  Diuretics can be very beneficial for those who need them with little or no sx except for having to pee more often.  (my husband takes them for his high blood pressure)  My advise is to get with your doctor, preferably a liver specialist and let him rule out or confirm the problem.  Are you experiencing and other signs relating to liver problems ?  What was your genotype?  Did you have a biopsy done in '03?  Just some questions that when answered may help others who post to give you more info.
Take care
Trinity