New to this and scared

Hi - I was just diagnosed with ACUTE Hep C first through an American Red Cross screen and then confirmed with follow up blood tests.  Now that it is certain I have it, I and my family am stunned since I absolutely have no risk factors whatsoever - NONE. I am a 52 year old woman who has never taken an illicit drug or engaged in risky behaviors and this is a recent infection so even at my age, I would remember anything odd over the last 6 months or so

I am sure this has happened to someone but I get the looks like - "yeah right!"

[Bill1954]

Hi Anne,

Welcome to the discussion group. I’m a bit curious as to how they diagnosed you with acute HCV; did they have recent results of other blood tests available to reference? A firm diagnosis of acute HCV is generally difficult to pin down without a history of labs to refer to.

There are quite a few of us in here that are currently dealing with the disease; have you had a chance to discuss this development with your doctor yet, and perhaps go over treatment options?

It’ll be important to get a genotype test; this is the particular strain of HCV you have, because this yields response rates as well as treatment duration.

Good luck, and stick around; others here will help you navigate through the maze of treatment and management options.

Take care—

Bill

[Anne1717]

Thank you for writing back Bill.  I just got the final word Thursday and do not have an appointment with the hep doctor until 9/1.  The reason I said it was acute  was because both lab tests said it was a recent infection.  And - I give blood just about every 6 months.  The other thing is, now that I know the symptoms, I definitely had several them late spring/early summer but never associated them with hep c - why would I suspect?.  Again, I have no risks associated with hep c.

The liver panel results were:  AST - 167    ALT - 327   ALP - 124

I regularly have LFT'S since I am on Levothyroxin (levothyroxine) for Hypothyroidism and last year at this same time all the readings were between 8 and 15 except for ALP which was 36

Thank you for your advice and I will stay tuned to this site since it helps to form questions for the doctor.  

Anne

[tashka]

I don't quite understand how the lab test can determine that this is a recent infection. It is very common for chronically infected people to have absolutely normal AST/ALT for many, many years. And usually there are no symptoms at all. This disease can be silent for decades. And then at one point it becomes more aggressive-which manifests in elevated LFTs and sometimes symptoms.

Also your LFTs are a bit low for acute infection.

Could you please explain, how did they make such conclusion?

Look in your past-even very distant past. Did you have blood transfusions? Surgeries? Colonoscopy/upper endoscopy? Were you immunized by air jet device in the military?  There HAS to be something that involved blood. Think it over, and you might be able to find the way you got this. I know that for people who don't have obvious risk factors it might be very important to find out how they got this disease.

[Anne1717]

The liver panel results were:  AST - 167    ALT - 327   ALP - 124

Hi Tashka - Thank you for your response.  I give blood every 6 months - ish to Children's Hospital and the Red Cross.  Secondly, now that I know the symptoms,  I clearly had them late spring/early summer.  Thirdly, all the lab results were marked "recent infection."  The GI said it was an acute infection and referred me to major medical center here that has a clinic associated with a med school.  

Believe me - I can't come up with any cause possibilities other than that tetanus shot.  

[Bill1954]

Hi Anne,

Again, an acute diagnosis is difficult to pin down; your appointment with the GI doc or hepatologist will be  good time to go over this. Generally, unless you have recent negative  HCV RNA or HCV antibody results which then suddenly become positive, it’s more of a guess-and-by-golly situation; there are no definitive tests that differentiate between acute and chronic HCV.

Regardless of the blood bank test results, your GI or hepatologist will order more tests to confirm everything; be sure to ask for hard copies of these results, along with copies of any procedure results; ultrasound. CT scans biopsy, etc. These copies will not only allow you to communicate more effectively in here, but with other specialists too, should the need arise.

The current treatment for HCV consists of weekly injections of the drug interferon, coupled with twice daily pills of the drug ribavirin. This treatment can last 24, 48, or 72+ weeks, dependent on genotype, degree of liver damage, perhaps, and other factors. It’s can be challenging sometimes; it’s compared by some to cancer chemo in that it makes some of us rather ill. Others get by reasonably well, but generally experience fatigue at minimum.

There are newer drugs that promise more efficacy when combined with the current interferon combo; these are in late phase clinical trail; discuss the ‘STAT-C drugs with your doc, and ask if you might benefit from them.

Clinical trial participation is also an option sometimes; do you have decent health insurance? These meds are pricey; treatment costs can exceed $ USD60,000/year, so good insurance is probably essential.

Until you speak with your doc, it’s best to avoid alcohol; this could make your condition worse if you are actively infected.

Take care—

Bill

[Anne1717]

Thank you !

[tashka]

Well, if you give blood every 6 months, it was tested, and infection has to be recent. You must be correct about this.

Tetanus shot as a source of infection is a remote possibility, but still a possibility. The virus had to enter your blood somehow. Very often it happens by the way of some medical procedure-though medical community doesn't like to talk about this and prefers to label this disease as a problem of drug users and prisoners.

How about dental work? Did you have dental visit or cleaning within these 6 months? I hope that when you gave blood this last time, they used disposable equipment.

Many people who never engaged in any risky behaviors have this disease. You are definitely not alone.

The good news is that acute hepatitis C is easy to treat and the treatment is shorter. You will get rid of your virus. You are very blessed to catch it so early-most people are well into chronic stage when they are diagnosed.

[Anne1717]

Thank you for your encouragement.  No dentist either  - just crazy.  The dark urine, fatigue,  and swollen ankles in the spring were definitely an oddity for me and when I looked it up I thought dehydration fit.  I am so healthy that anything  a little off is glaring.  

I appreciate your response and wish you well.  I'll keep looking at the posts and will know more once I see the hep doctor.

Anne

[tashka]

Yes, dark urine is definitely a sign of hepatitis. I also wish you the best. Please, let us know how you are doing.

[Anne1717]

Thank you I will.  

[portann]

It's not common to be diagnosed with acute HCV but three members here were also acutes - Moahunter, DebNevada and alagirl.

How accurate was your diagnosis of "acute" versus chronic hepatitis? It seems like you'd have to be seen asap to treat as an acute and it may already be a bit late in the day.

I can't see you needing a biopsy if you are acute, because little or no liver damage would be assumed.

If you ARE acute, you should see an experienced liver specialist who has all your records, so he can reliably figure this out. Treating acutes is less standardized - some use monotherapy but more docs are moving to treating with combo therapy.

Acutes, though, are treated for only half the time that chronics are, (i.e., 24 weeks for geno ones and 12 weeks for geno ones) with fabulous success rates among all genotypes.

Note ALT's can be sky-rocket high during the acute phase (usually greater than a ten-fold elevation).

One thing to consider is that women tend to spontaneously clear the virus more than men, although the reference I read said "young" (?) women.


"Acute hepatitis C refers to the first 6 months after infection with HCV. Between 60% to 70% of people infected develop no symptoms during the acute phase. In the minority of patients who experience acute phase symptoms, they are generally mild and nonspecific, and rarely lead to a specific diagnosis of hepatitis C. Symptoms of acute hepatitis C infection include decreased appetite, fatigue, abdominal pain, jaundice, itching, and flu-like symptoms..."

"Spontaneous viral clearance rates are highly variable and between 10–60%[2] of persons infected with HCV clear the virus from their bodies during the acute phase as shown by normalization in liver enzymes (alanine transaminase (ALT) & aspartate transaminase (AST)), and plasma HCV-RNA clearance (this is known as spontaneous viral clearance). "


..."Previous practice was to not treat acute infections to see if the person would spontaneously clear; recent studies have shown that treatment during the acute phase of genotype 1 infections has a greater than 90% success rate with half the treatment time required for chronic infections.[7]"

http://en.wikipedia.org/wiki/Hepatitis_C

"Patients with acute hepatitis C are a major challenge to management and therapy. Because such a high proportion of patients with acute infection develop chronic hepatitis C, prevention of chronicity has become a focus of attention. In small studies, 83 to 100 percent of persons treated within 1 to 4 months of onset have had resolution of the infection. What is unclear is when to initiate treatment, at what dose, for what duration, and with which regimen. A practical but rigorous approach is to start peginterferon (in usual doses) and ribavirin (800 mg daily) for 24 weeks if HCV RNA is still detected 3 months after onset of infection. The role of ribavirin and the use of shorter courses of therapy are currently under evaluation."

http://digestive.niddk.nih.gov/ddiseases/pubs/chronichepc/

Maybe have a look at this old thread concerning three of our former "acutes" here on the forum:

http://www.medhelp.org/posts/Hepatitis-C/Treatment-for-Acutes/show/486916


And here's a good, older article, in which monotherapy is used, but I think docs now may be leaning more to combo despite its conclusion but still for half the time.

http://www.medscape.com/viewarticle/503764_2

"...The largest uncontrolled study which employed induction dosing with standard IFN alpha 2b indicated 95% of treated patients achieved a sustained virological response with only 6 months of therapy.[12] It is unlikely that the newer forms of IFN, namely PEG-IFN alpha in combination with ribavirin are going to be much more successful!"


The best thing you can do is educate yourself about your options but in the case of an acute diagnosis, you unfortunately don't have much time to line things up if you want to treat as an acute. Here are some threads from other acutes that may be help you get a better picture:

http://www.medhelp.org/posts/Hepatitis-C/Anybody-out-like-me-who-can-tell-me-their-story/show/489329

http://www.medhelp.org/posts/Hepatitis-C/Outcomes-of-Treatment-for-Acute-Hepatitis-C/show/95667

[Anne1717]

Thank you portann - Yes-  acute and the window is closing if not already gone. It's hard to get appts here. I give blood every 6-ish  months and so have a time line.  Also now looking back, I clearly had symptoms but would never had attributed them to Hep C since I have no risk factors.  I had read the information you quoted and will look at the postings of the other acutes.

Thank you for taking the time to respond and best of luck.