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Donna Fanelli MSN, NP

Our In House Nurse Practitioner

ASK DONNA J.C FANELLI MSN, NP

Donna J. C. Fanelli, MSN, NP-C, Medical Director of Primary Health and  wellness Center,LLC, in Milburn, NJ and Senior Clinical Research Coordinator of Gastroenterology Research Associates, LLC, in Cedar Knolls, NJ.  She is certified as an Acute Care Nurse Practitioner, and Adult Nurse Practitioner

                    


 
From Betty  

I cleared the virus over 2 and a half years ago, but still have cirrosis.  I get an adominal MRI every 5 or six months.  When I started treatment I was 3/4 with early cirrosis. After my last MRI in December 07 my doctor said there's no significant change.  Do you believe that cirrosis without Hep C can reverse itself?

Hi Betty, it's great you cleared.  An MRI alternating with ultrasound every six months is needed to screen for hepatocellular carcinoma (HCC), liver cancer. These tests do not monitor the stage of cirrhosis/fibrosis because they are images of the liver.  Only a liver biopsy can provide information about the liver's histology (cell make-up).  Also an AFP tumor marker ( a blood test) should be performed yearly as another screen for HCC. We know that the liver regenerates in the absence of HCV and alcohol consumption.  It is estimated that it takes 10-15 years for a liver to fully regenerate. 
Rather than focusing only on images of your liver, you need to look at your liver function blood tests and blood counts as well as how you feel, and what your provider finds on exam.  These will provide a picture of your ongoing improvement. Areas to note are, your ALT, AST, bilirubin, albumin, platelet count, PT/INR, your energy level and your general feeling of well being. 
If these are in check, your liver is healing and renewing itself.
Good luck to you and God Bless,
Donna Fanelli

 


Hi all,

Wondering if anyone out there has gotten pregnant while their partner is on interferon meds? I understand they can cause defects in baby but has anyone out there came out with a healthy baby? Im not pregnant but my hubs sis asks us and I really do not have an answer. I just tell her we cannot get pregnant while on therapy.

Thanks!

Carissy

Hello Carissy,

Unfortunately, we don't know enough about the long-term effects of paternal exposure to ribavirin.  It is believed that ribavirin accumulates in sperm in concentrations high enough to induce defects. In animal studies, ribavirin produced changes in sperm at varouis doses. These findings automatically triggered a black box warning.

There is a registry by Kendle International with an effort to accumulate data on woman exposed to ribavirin during pregnancy:

http://www.ribavirinpregnancyregistry.com/

Below is information from a report in PubMed:

"Although either ribavirin or interferon alpha could damage human embryos, no adverse effects have been described among offspring of women or men treated with combination therapy in the few human pregnancies where we know fetuses were exposed. No epidemiologic studies of paternal use of ribavirin alone, interferon alpha alone, or ribavirin–interferon alpha combination therapy have been published. Some case reports have described paternal exposure to ribavirin–interferon alpha within 6 months of conception.Out of seven men exposed to ribavirin–interferon alpha combination therapy (doses varied from 600 mg/d to 1200 mg/d) described by De Santis et al, six had fathered pregnancies within 6 months of discontinuing therapy. No offspring had congenital defects; one aborted spontaneously. Seven healthy babies were born (one patient had twins) with no complications during pregnancy or follow up, which ranged from 3 to 14 months after delivery. Conclusion: Four case reports showed no congenital malformations. Within the four reports, there were 12 healthy infants, five miscarriages, and two therapeutic abortions. Although ribavirin is a potential teratogen, there seems to be no immediate reason for terminating pregnancy when a father has been exposed to it. These pregnancies can be continued under close monitoring, for example, with level 2 ultrasound scans"

 

Here is an article for further information: 

http://www.intmedpress.com/Journal%20Management/display.cfm?viewinfo=3F74516309514A2F1B441B00401A641526542A285845171F074401400D31545E1A

0C11464F275232551A155E1602110648545E07104209330C52

 

Good luck to you and God Bless,

 

Donna Fanelli

 


HI All

Today would have been my 3rd injection. I just completed my 2nd week labs this Wed.

The NP told me late Thursday I would have to stop the interferon (I can continue the Riba) until my WBC(?) or ANC (?) counts come up - they're at '78 or 780' - I'm not sure of the numbers. But she said my counts borderline.

They ordered neupogen - which may arrive next week - sometime - if I can afford the copay. I want to stay safe - but....

How will  the reduce dosage of peginterferon affect my chances of becoming UND?

Why can't I continue the shots and take the neupogen when it comes - since my counts are on the 'borderline' and not severe.

At times I'm a little foggy so I may have misinterpreted this - but last night I read a study (2003) on Janis about this - it doesn't' seem to be a good idea to interrupt the interferon - go on the Neupogen - wait until the counts come back up and then start the interferon again -  as it may reduce a person's chances for svr.

 All other labs are fine. I'm G1/stage 1/grade 4/18

thanks

MUASI  

 

Hi Muasi,

 

Yes, what you read about dose reduction and your reduced chances for SVR are correct.  However, since you are so early in your treatment, the interruption can be used to your advantage.  First, once you start the PEG Interferon again, that should be considered your Week 1 and continue on for 48 weeks.  Remaining on the ribavirin until you are approved for Neupogen will actually rev-up your immune system up so that when you do take your next injection, you will have a better viral response….you may feel more intense flu-like symptoms after that shot.

 

The ANC (absolute neutrophil count), is a measurement of this certain type of white blood cell in your circulating blood. These cells fight off infection and if the count gets too low (below 500), you are at risk. The interferon does reduce this count, but you have billions stored in your bone marrow.  The job of the Neupogen is to signal the bone marrow to release these neutrophills into the peripheral circulation, which will occur within 2 hours after the injection.  Your ANC count will increase (up to 10,000) and you’re all set to re-start the PEG interferon. 

 

For my patients, I usually prescribe 0.5 ml (150 ug.) 1 day before the PEG and another 150 ug. dose 2 days after.  This prevents the yo-yo effect on the ANC.

Good luck to you and keep us posted!

 

God Bless.

Donna Fanelli


Hi Donna,

I was wondering if you know if Ketorolace 10mg every 8 hours can do harm to someone with liver disease?

Thanks,

Listmaker

Hi Listmaker,

Ketorlac (brand name Toradol) is a strong NSAID.  It negatively interacts with  some medications and should not be taken with others. Short term, it is relatively safe for the liver.  It is more damaging to the lining of the stomach and could result in a bleeding ulcer.

It should not be used for more than 5 days and you can read more about it on this link:

http://www.migraines.org/treatment/pro_tora.htm

Good luck and God Bless.

Donna Fanelli

Hey everyone, I'm a 2 1/2 yr. transplant.  my problems stem from blockages or strictures of my ducts. i cannot go but about six months before needing a procedure to open these blockages up. now i'm at the point where i can onlt have the prt done. has anyone advice on what i could do. my transplant was done at music in Charleston, sc but i am more than willing to travel to get some decent care and answers.  needless to say, i'm not a big fan of the radiology dept. there.  you are just another # walking through, and all of them act like primma donnas. the radiologists and liver transplant team don't seem to work in unison. any advice would be greatly appreciated. thanks in advance.

Hi Tom,

I hear your frustration. 

Your situation is not uncommon in light of a transplant because there was an insult high up in the bile duct close to the liver. Blood flow to the bile ducts around the liver is diminished resulting in strictures. Repairing the strictures is very complex.  Finding a segment of normal bile duct is often extremely difficult because of associated injury to their blood vessels post transplant.  I assume this is why only one port can be done at a time.

You need to bring these concerns up to your clinician. Don't leave the office until you have an understanding as to why only one port can be done at a time. This is your right and the clinician’s duty!

Stay well and God Bless

Donna


Hi Donna,

Could you explain why 5 yrs. ago, I was told that my genotpe was 3a but now I am told it's 1a. How come the tests for genotypes doesn't pick up any/all types that are present. How do I know if 2 genotypes are all i have and what does it mean?

Thanks, Cindy

 

Hi Cindy,

It is possible to be infected with multiple genotypes, meaning you were exposed to both viruses at different times. Were you treated 5 years ago?  If you cleared at that time,  it's likely you were re-infected. 

There is a slight possibility that the the older result may not have been performed by the more advanced testing assay that's used today.

You should be evaluated closely and definately consider treatment.

God Bless,

Donna Fanelli


First Post
I was dx in 2001 when they found R pleural effusion, i have told my story here several times and everyone is so great. I went back to specialist, hepatologist and this was 3rd visit since I started having bad symptoms from c severe pain under my ribs, bloated, digestive probs, more fatigue,r lung full of fluid, drs, at home town nver could figure if my effusiion was from liver, so since symptoms started bad 3 months ago i went to specialist in Dallas. He says now that my labs arent tnat bad, my viral load is over 150 million, ast and alt elevated but not real high. My biopsy in 2001 was 3/3 with bridging fibrosis. I cant believe he dont want to treat,, i know he said pulmo needed to figure out what to do about lung, due to the docs before drained  it too many times and occluded it. He took me off work FMLA 3 months, gave diuretics, fluid restriction. I am at my wits ends, i dont understand he is a tranplant doc and knows bout hep c i just dont know what to think about he thinks lung is worse than hep c. He is not dong biopsy,WHY any help I would be most grateful. 
 
Second Post
Hi Everyone, I have been at this site for a month now and learned lots and know that yall are genually concerned about this disease and the journey of hep c, I just cant seem to find anyone with the same probs i am having, maybe i am not reading in all the right posts, but i have emailed several people that post a lot and have not recieved any response, no its not all about me or is it a pity party, I am just asking because I dont know, if yall remember i was dx in 01 3/3 bridging fibrosis, but had pleural effusion (fluid on R lung) docs kept doing pleurodesis draining fluid and could not say if it was from my liver. This went on and off for 8 yrs, the first 4 months chest tubes etc and hep c put on back burner, i got well enough to go back to work and did not have outstanding symptoms of c. Then 4 month ago hit me hard fatigue, bloating reflux probs pain under r ribs and all we experience, i also had fluid again on lung, remember they had still been draining lung during all this time due to reoccurencce. Now my hepatologit and pnuemo docs said ( new docs) that the drs before had went into my lung too many times and is occluded (entrapment) and much scarring over membrane. Now they tell me I have portal hypertension, cirrhosis, which was very kind of them to tell me over the phone 150 miles aay. They say they cant due any thing with liver until lung is better, but they seem to have me on hold, and think like i should not be so concerned with liver,my viral load over 150 million enzymes not bad at this time ast alt elevated some but i have read where your liver can become so decompenated that your blood levels will not show elevation, he is not doing bx, i go to him tomorrow and i want to demand some answers, i am on FMLA and need to do somethng and have some answers, I feel maybe they think I am a hopeless case, I stay in bed mostly pain and coughing till i am SOB. Sorry for long post but I am happy for yall that are tx and have tx and my prayers do go up for all and for this site I found.

Hi Lee,
Thank you for your questions.  You are a very complicated case and should be managed by clinicians at a large university affiliated medical center.  You need a published hepatologist conferring with a published pulmonologist.  In all likelihood, your lung problems are a result of your liver not working properly.  Please ask the clinician to sit with you, go over your lab work and imaging tests and explain to you exactly what's happening.  Don't be afraid to ask what are your options to maximize your quality of life and to get you well. I only have a glimpse of your story, but I assume that you are on different medications and a treatment plan is in place and please Lord, you're not drinking alcohol.  Advocate for yourself or ask a family member to help you understand what treatments are available and don't be afraid to ask questions.
Keep us posted and God Bless.
Donna Fanelli
 
 

Donna J. C. Fanelli, MSN, NP-C
Director of Clinical Operations

Primary Health and Wellness Center, LLC
250 Millburn Avenue
Millburn, NJ 07041

From Venessa

I've posted this same question on different boards on the internet, but wanted to get more info if possible. My concern is with the trasmission of HCV and toothbrushes.

I mistakenly used my husband's toothbrush recently. He has HCV. In the past his gums have bled, but not lately. My concern is that when I used his toothbrush, I had a canker sore inside my lower lip. If he had any blood on his toothbrush, how great is the chance that I could have become infected? I've read that transmission via this route is pretty low, but I'm concerned that it could be greater due to my canker sore being an open wound.

I plan on getting tested, but there's a bit of an incubation period, so I've got to find something to keep me sane in the meantime. I've been so worried and stressed over this for the last few days. If anyone (esp. a medical professional) can offer some information that can help ease my mind, it would be really appreciated.

Thank you so much for reading and helping.

Vanessa

Hi Vanessa,

I truly understand your worry. For the HCV to be transmitted, infected blood must come in contact with an open sore or wound and be carried through the circulation.  Unless your husband was actively bleeding, did not wash his toothbrush and infected blood cells (every blood cell does not contain HCV) traveled through your sore, the risk of transmission is extremely low.  Get tested 6-8 weeks after suspected exposure, and then again 6 months later.  Take notice of any flu-like symptoms you may experience and remind your husband to keep his personal items out of arms way.

I think you'll be fine.

God Bless,

Donna Fanelli


From robbaml 

question for Donna...

hi donna, im a 56 yr old male, contacted hep c in 1972, over 36 yrs ago. my biopsy in FEbruary 2007 said i was grade 2, stage 2....

HEP C 1A,  i started TX in March 2007. i treated for 31 weeks....starting VL was 8.2million...i came off TX in OCTOBER 07, with a VL of 300. i did not become UD at anytime during TX....

I now wonder whether it was the correct decision.  what do you think? And how do you suggest i TX next time i do TX.

i plan on treating again sometime in 2009 after my daughters OCTOBER 2008 Wedding..

right now i try to eat healthy, use milk thistle, centrum silver multi vitamin and omega 3 fish oil.. i also drink a lot grapefruit juice because i read it can slow down the progression of the hep c virus..

i also read that the disease begins to progress quicker the older we get and the longer we've had the virus...is this true and how can i prevent the progression of this disease...

Donna you are a godsend and i appreciate you taking the time to answer our questions.

thank you

ron

Hi Ron,

It sounds like you're doing all the right things; just watch the grapefruit juice as it can interact with certain medications…but not with the vitamins you mentioned.

You came so close to clearing the virus.  A few years back, 300 would have been considered "negative" because the assays weren't as sensitive, that's why the relapse rate was higher back then.

Yes, the disease steadily progresses with age, because the ability to resist diminishes as the body wears.

There are definitely some treatment strategies that can be considered your next go around.  You want to see a viral count of 300 or less by Week 12, not at Week 31.  You may benefit from starting the ribaviin 2 weeks prior to starting interferon, and you may want to consider daily consensus interferon (Infergen) for the first month or as long as tolerated and then switch to PEG interferon.  You also should discuss with your clinician about extending treatment beyond 48 weeks.   There is never a guarantee of SVR, but during the time of viral clearance, the liver will begin to heal.

Look forward to the role of Father of the Bride and have a great time, consider re-treatment before the grandchildren are expected.

God Bless,

Donna Fanelli


Denise (PDRSHome) 

I am a geno 1a. Just did tx. for 2nd time around. I was UD at 12 weeks. I just did my 6 mos. pcr and happy to say I am still undetected. I certainly am not trying to sound negative but would like to know if my chances are good for svr at this time? My doctor said we would repeat pcr in one yr.but I personally want to repeat it in 6 mos. This has been great news for me. Have people been undetected at 6mos only to have the virus ever come back?

Thank you so much,

Denise

Hi Denise,

Congratulations!  Enjoy your success. The only patients of mine that had detectable virus after SVR actually re-infected themselves…they had a different genotype.  The take home message is to maintain a safe and healthy lifestyle and avoid the known risks. I don't believe you need to be tested again before a year's time.  If you insist, speak to your clinician. And stay well.

God Bless,

Donna Fanelli


GAYLON49 

I was diagnosed with HCV last March and started the treatments in June. After 11, treatments I lost partial vision in my right eye and the after 14 treatments it happened to my left eye... I have been diagnosed with optic neuritis and had to stop the treatments

that was in Oct of 2007 and now it is May 2008 and I still don't have my vision back, has the happened to anyone  out there and can you give me any hope for my vision

Hi Gaylon,

I am so sorry to hear about your outcome.  Why wasn't treatment immediately stopped after you had a problem with your right eye?  Yes, optic neuritis is one of the rare side effects of combination therapy and should be treated.  Most cases clear over time after a course of prednisone, oral or IV.  However, I had a patient who never regained peripheral vision in one eye.  Find the best retinal specialist in your area and schedule an evaluation.  My prayers are with you.

God Bless,

Donna Fanelli


From memphismorni 

Donna:

1A non-responder with mild scarring and liver functions are still in the normal ranges

Being treated twice and relapsing my doctor says that the Vertex treatment is not for me. The only other trial I have seen available was for naive patients only. What is left for those like me that are not responding to the known treatments?

Thanks for your time, Dale

Ps my first treatment in 98 was interferon and the second in 2006 was pegasis and copegus. Sorry for the poor spelling

 

Hi Dale,

Hopefully Vertex will be on the market in 2 years.  I know most of the clinical trials are studying response rates in naïve patients.  I believe there is one study that is studying HCV with hepatic impairment and telaprevir (Vertex).  Look at clinicaltrials.gov and centerwatch.com to follow new studies that may be enrolling. Sounds like you have mild disease and within 2 years may not have to worry about enrolling into a trial to try. Vertex.

Good luck and God Bless,

Donna Fanelli


 From dalesar 

Hi,

I did peg-intron treatment in 2001, cleared the virus, but still feel like I am on treatment every day.  Do you know if anyone is reasearching this problem?

Chemobrain, body aches, sometimes I can't walk.  It's pretty scary.

Thanks

 

Hi Dalesar,

It sounds like something else may be going on. Discuss these symptoms with your PCP. You may benefit from a rheumatology referral.

Good luck and God Bless,

Donna Fanelli


HI Donna,

I asked this in the general "concerns" forum and was referred here as no one was really sure.

Undetermined Genotype result was from test = Hepatitis C Viral Genotype, completed about 10 days ago.

Good Afternoon,

This is my first post and have been recently been diagnoised with HCV.  I am going through the initial blood work and was told that my Genotype was "undetermined"

I was able to find on article that stated if Genotype can not be determined, will be treated as 1.

Any ideas on this?

Hi HB,

Yes, an undetermined genotype will be treated as a genotype 1, just to assure the best outcome.

You may want to ask your clinician to repeat it and send the specimen to another lab.  Over the past few years, more advanced diagnostic tools have been able to better identify the genotype and you want to make sure the most advanced testing was performed on yours.

In any event, you have about a 70% chance it’s a genotyye 1 and in addition to genotype, there are other factors that should be looked at to guide the treatment regimen.

God Bless,

Donna Fanelli


Hi Donna,

I am HCV geno 1B on week 28 or 29 of treatment. I have been UD since week 12. I also probably have Cryoglobulinemia although the GI never confirmed with test, he just says yeah probably.

I was originally diagnosed with Rhuematoid Arthritis due to a high RH test result. I also had pain in most of my joints and swellings on knees and my knuckles. I was sent to a Rhuematologist who said the swellings I had on my joints were not in the right place for RH and he did test for HCV that came back positive. I was sent to GI for HCV. Tested for HCV and started on Treatment of 180mcg pegasys and 1200mg ribaviron. Ribaviron was decreased to 1000mg around week 13 or 14 due to breathing issues. I am UD and have been since week 12. Since about week 15 of treatment I have had very little joint pain and have started to resume some of my preillness activities although I still require at least 12 hours of sleep a night. This is true except for Wednesday (day after shot) and the 3 days before my period starts. During those days I experience extreme fatigue(20-22 hours of sleeping) and extreme discomfort. My belly bloats up so badly it sticks out. I get recurrent and extreme diahrea. The swellings on my knees increase in size. All my joints ache, I get nauseated and I generally feel like I have the flu. By the second day of my period I seem to be back to normal again. The day after shot I understand and expect. But, would either HCV which is currently UD or treatment cause the period week issues or could it actually be something different? How much does treatment and/or HCV really effect womens cycles?

Thanks for any info you have on this issue.

Bette

Hi Bette,

It sounds like you’re doing great!  So often treatment makes underlying RA symptoms worse.  In your case, your joint pains were related to viral infection and have improved.  To answer your question, yes combination therapy will cause menstrual irregularities.  It’s not uncommon to have menses to cease altogether later on in treatment.  The body is compensating for the drop in hemoglobin caused by the ribavirin and sparing you additional blood loss.  The hormones are out of sync and will cause the bloating and swelling.

Bring this up to your clinician and ask if a very mild diuretic taken 1 day before the anticipated day of your next menses would help.  Something like hydrochlorothiazide 12.5 mg may do the trick.

Stay well and God Bless.

Donna Fanelli


 
 
From D

Hi,

I have a question for Donna, and thank you for this idea.

My husband is on his 11th shot this Friday. He's in extreme pain with arthritis/gout. Is practically bedridden.  Nurse Practioner says no RA.  I know tx makes bone pain but is this normal?  He can't move and if he gets up for too long a time like to take a bath it's excruciating to him.  Is there anything he can take that may help him?  And how long will this last? And can he develop RA while he's on treatment?  He's genotype 1a on 48 weeks of tx.  V/L dropped from 600,000 to 350,000 first two weeks. Waiting to see Thurs. next V/L.  Had to take two shots of Aronesp when his blood bottomed out.  He's 57.  Is there any foods he needs to avoid? Not that he's eating too much now. Thanks for any help.

D

Hi D,
It's difficult for me to evaluate this situation without seeing your husband and his labs.  PEG IFN can induce RA because IFN boosts the immune system. RA is an autoimmune disease which means the body mistakenly thinks it's own cells are invaders and begins to attack.
My advise initially, encourage your husband to drink at least 3-4 liters per day of water.  With the drop in his hemoglobin (the red blood cells ability to carry oxygen), make sure he had an EKG and/or stress test prior to starting treatment.
Also, labs I would check are rheumatoid factor, ANA, uric acid and an anti-CCP (Cyclic Citrullinated Peptide Antibody).
It is unusual for patients to have such dehibilating pain while on combination therapy and other causes need to be investigator.
Keep me posted.
 
 
New Question From D
 
 From : myyonder  
 
Donna, thanks for the reply back.

Found out yesterday that husband is UNDETECTED as of week 7.

Here is some labs from 3/13/2008.

Hemoglobin 10.3

ALK Phosphatase 129

Platelet 95 was 103 but started at 67 before treatment

Hematocrit 30.8

WBC 2.7

RBC 3.20

AST 83 was 109 at start

ALT 44 was 130 at start

Labs from 2/14/2008: MCV 99.6, MCH 34.1, MCHC 34.2, RDW, 18.7, MPV, 8.9,  TOTAL PROTEIN 8.0, ALBUMIN 3.7, BILIRUBIN, TOTAL 1.4, BILIRUBIN DIRECT 0.3,

I'm not sure what most of these are but I'm sure you know. I don't really know what to look for but his Nurse Practioner said that from his blood work she can tell it's high for arthritis. She still says it's not RA.  She has ordered in two weeks Uric Acid and TSH.  In two weeks she'll check other bloodwork and probably give him another Aranesp shot. That helped last time he bottomed out.  She also said he should start feeling better since he's coming up on shot 12 and his body will stop attacking itself.  I have a hard time believing that.  Just going to see her yesterday, any kind of activity such as bathing or walking puts him in bed for days with severe pain. She wanted to take him off treatment yesterday but he refused since he found out he's undetected.

She has said in the past without biopsy that he is stage 3/4 into cirosis. He has no other symptoms, ultrasound on organs came back fine.  Whats your take on that? I realize you can't make a complete diagnosis without seeing him but I appreciate any input.  I wish you were here. Sorry for the long post. So many unanswered questions.

D

Hi Myyonder,
It is wonderful that your husband in undetectable!  If his symptoms have not improved, you may want to consider bringing him to a rheumatologist.  If he can tolerate the treatment, he should stay on it, but the extreme side effects need to be investigated.  You don't want to do more harm than good. 
Without a liver biopsy, staging of fibrosis is merely a guess.  A liver biopsy is indicated in your husband's case to guide treatment decisions.  His other labs appear to be Ok.  I am concerned that the AST is 83 and the ALT is 44 (AST is almost 2X ALT).  Is he taking too much Tylenol or drinking alcohol? He should have a GGT and also a cardiogram. Keep in touch.
God  Bless,
Donna Fanelli
 
 
From:74gibson  
 
I have thought about for a while, maybe might be worth answering.  I had my Gall Bladder removed 4 years ago after having 2 attacks.I do not have high cholestrol nor am I over weight. I understand the Liver produces bile and it is stored in the Gall Bladder. Could the Hepatitis have caused this because of improper functioing? I do not have cirrhosis. Recently dx Grade 2 Stage 1. Curious.Thank you, Carolyn
 

Hi Carolyn
Gall bladder disease is common and is not usually associated with hepatitis. One study showed an increase in gall bladder disease in men with HCV, but was associated with more advanced liver disease. At Stage 1 fibrosis, a liver is functioning at a nealy optimal level and the gall bladder disease is most likely unrelated.
God Bless,
Donna Fanelli

Donna - My question is this.  I had a 4 week PCR run.  My viral load had gone from 1,050,000 to 139,000.  My dr said I was a "slow responder" and that the 4 week viral load was the new standard.  I had hoped that I had misunderstood - but since then I've done major reading.  One study jumped out at me (most agreed with the 4 week being the new standard :o( ) that said for geno type 1's, at 4 weeks, if your viral load is over 100,000, you have less than a 3% chance of getting SVR.  Do you have any more information on this?  I'm going to stick it out for the 12 week viral load (so many encouraging words from this website), but if my chances really are less than 3%....I am contemplating waiting for the new meds or at least a clinical trial.  Thanks!  Dottie

Hi Dottie

The buzz  word for the past 18 months or so has been RVR, Rapid Viral Response, meaning the viral count is undetectable at Week 4.  I have routinely checked a PCR at Week 4 for awhile and now it's pretty much the standard.  Each clinician uses the information differently.  Some studies suggest treatment duration can be reduced, others predict an increased SVR.  The bottom line, a 4 Week PCR is a guide.  Yes it would be nice if you cleared at this point, but there is no data to suggest you won't achieve SVR.  The study you're referring to looked at persons with more severe disease and I believe the treatment regimen was sub-optimal.

The 12 Week PCR provides a clearer picture, because there is more literature looking at the prognostic implications.  I applaud you for sticking it out until then.  If you are 'almost undetectable' at week 12, continue for another 6 weeks. Sometimes tweaking the regimen can yield better results.   Assuming you clear at Week 18, you should stay on treatment for a minimum of an additional 36 weeks, preferably 42 weeks more.  Again, this is in light of minimal side effects and the ability to remain on the maximum dose with minimal risk.  It is imperative that you don't miss a dose of ribavirin, and don't delay taking your shot…even a couple of hours can make a big difference with weekly Peg- Intron or daily Infergen.  Drink plenty of water, exercise and eat a diet high in complex carbohydrates and low in fat.  Take Omega-3 fish oil capsules and you will do fine.  Good luck to you.

Keep in touch and God Bless,

Donna Fanelli


From jenibjones  
contradicting information. Those exposed to 'mucosa' from that of known infected person should be tested??? I read that kissing is not a major risk factor but the mucosa is eyes and mouth. Now...tell me why that is not a threat, kissing some one with possible gum disease is a threat? There are levels of gingivitis and periodontal disease, help me under stand. My common sense tells me unless you have excellent oral care...you could be a higher risk person to give the disease to another...for the record my mouth is very healthy.
thanks..
may questions left....

Jenibjones,

Hepatitis C is a bloodborne disease; the virus is transmitted by infected blood.  HCV is not transmitted via any other body fluids unless those body fluids have been contaminated with blood. Gingivitis, an inflammation of the gum tissue surrounding the teeth, often results in bleeding gums because the tiny blood vessels rupture as a result of the inflammation. For the virus to be transmitted, the infected blood must come in contact with an open sore or wound and be carried through the circulation.  Unless the kissing results in trauma, the risk of transmission is extremely low.

I hope this helps. God Bless,

Donna Fanelli


 
considerate2
Thank  you all for the replies. I am going to ask questions as much as i can once getting to the doctor and i am glad i have this site. One question i do want to ask: When a person comes back positive for Hepetitis B and C, does it make his chances for survival lower because he has both verses just having one.

Hi,

When you say positive for Herpatitis B and C,  I assume you mean there is a detectable virus in both.  Having both viruses is more difficult to treat and depending on the liver's resistance, survival may be diminished, but this is very individual.  Both viruses can be treated together and the Hepatitis B virus will be treated a lot longer.  The Hepatitis B virus is often controlled and not "cured", while an SVR in Hepatitis C is a cure.  I hope I've answered your question.
God Bless,
Donna
 
General Question
Needle Stick while on the job
If exposed to HCV while four months pregnant what are the chances of passing the virus onto my
child.

Overall, the risk of vertical transmission (transmitting the virus from mother to child) of HCV is about 3 to 5%, and higher if the mother is co-infected with HIV. 

It has been reported that the risk of transmission after a needlestick injury on the job is 4-5%. Do the math...5% of 5% … the relative risk is very very low.

God Bless,

Donna Fanelli
 
From Francias
Here is the first time he posted on the boards
 
Hello,
I've been recently diagnosed with Hepatitis C. According to my test results the Hep C virus RNA HPA count is 915133 (A) and the HCV RNA, ser/plas, PCR is 5.96 iU/mL and Bilirubin, direct level 0.2.  My ALT level is 118 units/L and the alkaline phosphatase is 46 units/L.
I have never had blood transfusion in the past or used any type of recreational drug with a needle or even any type of tattooing or piercing. But I was abusing alcohol for a long period of time, which affected my ability to hold employment because I would drink 700ml of vodka or whiskey plus 3-6 beers on the weekdays and then end up not showing up for work on mondays.  There would be three to four days of binge drinking that would knock me out.
My question and curiosity is the high levels of ALT is  due to alcohol abuse for  approximately past ten years? could this be alcohol related Hepatitis C. I have completely stopped drinking now. But I'm worried what these numbers indicate. If someone could please relate to this please let me know.  Could these results be inaccurate due to my history of alcohol abuse? How can I be sure this is not  misdiagnosed?
 
Second Time he Posted
 
So here is how I got my diagnosis:
Got a full blood check including liver. Results show the following:
ALT = 120 units/L
With this I was asked to take another test for all major liver disease including hep ABC. The results for Hep C. was reactive. I just do not rememeber what the doc said the kind of test it was. After which I was asked to again take the a live panel test but this time with the quantitative PCR test. The results was what I listed in my promary message. I was referred to a GI because the doc wasn't knowledgeable in this field and couldn't answer a lot of my questions. My appointment in 3 weeks and I am just outbusted on what is going on here.
Here were my results for the liver panel test and notice I do not have AST?? I guess they didn't bother.
 
Name Standard Range 2/29/08 3/5/08 4/13/08
ALKALINE PHOSPHATASE     49 46
ALT   120 H 125 H 118 H
BILIRUBIN, TOTAL     0.8 1.2 H

 
Now what does justify me to have Hep C? I know my VL is pretty high at approx. 915,000 count. But does it justify me conclusively I have HCV? What does my PCR number 5.62 mean???
I canoot figure out how possibly I could have caught this disease??? I have an eye surgery 21 years ago and dental work at a student dentist facility that possibly could have mishandled some of their materials. This was in Paris France...
Well anyways before I go to my GI I want to learn as much as I can about HCV as I can. I am with Kaiser in CA. Do you think they will drop me if I have this? How much will I be llooking at spending for treatment (getting the medicine?).
I guess the next step will be to figure out my genotype. To begin with what exact bllood test competely proves me HCV?
What are the exact steps? What are treatments available for a high VL like mine? I mean I feel perfectly fine thank goodness.
What can I do to lower my VL? Only medication? How about ALT, Bilirubin counts?
PLEASE help me understand.
Thanks,

Hi Francais.

I don't believe you're focusing on the most significant part of your story…your recovery.  Your accomplishment empowers you to manage the remaining chapters. Congratulations!!

To answer your questions:  your former alcohol abuse has little to do with contracting the Hepatitis C virus.  You may never know for sure how and when you contracted the virus, and the uncertainty should not  interfere with your ability to address the problem.  A misdiagnosis is unlikely, the blood results speak for themselves.  A positive  HCV antibody indicates exposure, and a viral count  shows active disease. Your count of 915,000 is moderate.  I have treated patients with more than 50 million.  A high viral count doesn't mean worse disease and the reverse is also true.

Your ALT is elevated, but your bilirubin and alk phos are in the normal range. It's unclear as to why you don't have a result for the AST.  All of these values provide a one dimensional current picture of your liver function.  A more detailed piece of information can be obtained from a liver biopsy which actually looks at a small piece of your liver tissue.  It is also important to learn your genotype.  This is the "type" of Hepatitis C virus you have and basically denotes the route your virus takes to replicate itself and can provide more information about your ability to respond to current therapy. 

No insurance company should deny paying for your treatment at this time.  If you have a problem, please contact me personally, and I'll advise you.

Search the Janis and Friends site. The information is as accurate as it is up to date. Remember to get vaccinated against Hepatitis A and Hepatitis B.  Keep in touch, ask questions and praise your success.

God Bless,

Donna Fanelli


Hi  Donna and anyone else that can add insight to my questions.
can you please give me some info about TELEPREVIR..

does it really work well
will it be FDA approved, and when?
does it cut down on TX time for geno 1a patients
it was suggested somewhere that it is possible to be UD after only one week of tx. is this possible?
i realize it will be part of a 'cocktail', along with peg and riba, i was wondering whether the SX were worse with teleprevir added to the mix.
please give us as much info as possible on teleprevir and any other new  TX drugs that may be coming in the future
thank you.......Ron
 

Hi Ron

( This is a former posting of mine)

Vertex or Telaprevir (VX-950) seems to be winning the race as the first protease inhibitor to come to market.  This class of drugs has been used for years in HIV and is new to Hepatitis C.  The difference in the Hep C population, is these drugs develop resistance very quickly…in 2-4 weeks.  The HCV virus is very smart in changing it's appearance to continue doing it's dirty work, thus resulting in mutations and resistance.  PEG/IFN and ribavirin will continue to suppress viral replication, without the risk of resistance.  The telaparevir will kill the virus and the combo Rx will help prevent it from coming back by boosting the body's immune system.  It is approaching Phase III and hopefully we will see it in 2-3 years on the shelves.

More information can be found on the link below. http://www.hivandhepatitis.com/hep_c/news/2008/020108_a.html

I hope this helps.  God Bless

Donna Fanelli


I am a 48 year old female.  I was just diagnosed with Hep C 1 month ago.  My genotype is 1b,  I used intravenous drugs 25 years ago but quit then.  liver biopsy results were that I am between stages 2 & 3.  I haven't received treatment yet.  I would really like a estimate on my chances of survival and how long I have left.  Thank You for your consideration.                      Dawb Austin

Hi Dawnaust,

It has been estimated that at your age, it can take 10-12 years to advance from stage 2 to 3 and less time from 3 to 4.  This time line is quite variable depending on one's overall state of health and well-being, alcohol consumption as well as other lifestyle choices.

With a successful course of therapy, the timeline reverses.

Good Luck and God Bless,

Donna Fanelli


 

Hi I am newly diagnosed about 1 month ago...It has been one heck of a bumpy ride, to say the least.  I have never been high risk, I did have blood transfusion 5 years ago.  It seems that the doctor does not really want to help.  My alt/ast are elevated to alt 99 ast 49, my viral load is 3.94+e5iu/ml whatever that means.  The doctor was so mean to me in his office I asked him about an biopsy and being refered he said it does take some time to be refered to specialist, and 'that i was not dying now' nice eh?  then they proceeded to fax my records to the wrong person, well anyway I guess I am venting now.  My question is I truely have been given no information in anything, diet health nothing...We do not have any blood test in the past in regards to my liver because through the past years it has been all prenatal.  what should I be telling my doc is a biopsy important should i be getting my geno typedone?  there saying I might not get in until october i can not wait this long with now knowing anything...Please help me understand all of this!!!!
thanks sincerely Terri

Hi Terri,

I'm sorry to hear you've had so much trouble at a time when you're very in much in need of TLC. You need to seek out a provider who will guide you through the process of healing. Seek a gastroenterology group who treats a large number of HCV patients.  Often those affiliated with large teaching hospitals have an edge up and groups involved with research are very forward thinking.

I believe it's unlikely you contracted HCV from a blood transfusion 5 years ago.  Since 1995, the blood supply has undergone the most sophisticated testing.  Other risk factors for HCV transmission include amateur tattoos, ear piercing, IV or intra-nasal drugs, hospital worker, or living with someone infected.  You may never know how, but it's often helpful to know when.

The next step in your treatment plan should be to obtain a genotype.  Depending on the results, you may not need a liver biopsy because genotype 2 and 3 (less common) respond well to only 6 months of treatment.

Eat a diet high in complex carbohydrates and protein and low in fat.  No alcohol ever, and make sure you get vaccinated against Hepatitis A and Hepatitis B.

Look at the main site, www.janis7hepc.com and www.hcvadvocate.org. for additional information.

Good luck and God Bless,

Donna Fanelli


 

Dear Donna,
Thank you for the reply (I copied it below for reference). I did make an error in my original message about the 70-80% - sorry, I can only plead brain fatigue from trying to research so late at night!
My brother is basically saying that there is no cure, so he will live as if he is toxic so as not to spread the disease. Since the percentages are so low for death from HVC, there is no reason to do the therapy. Since he will not do therapy, there is no reason to get tested.
I found these figures and it's hard to argue with his logic:
It currently seems that if 100 people catch hepatitis C:
15-20 people will get rid of it within 2-6 months (much like we get rid of a flu virus)
60 people will have a long-term infection that may cause no problems or may cause levels of liver damage ranging from mild to serious.
20-25 people will have a long-term infection that leads to serious liver damage after 20 years. Of these people (i.e., those with serious damage after 20 years):
10-will remain stable and the other 15 will progress to liver failure or liver cancer after another 5 years According to an article in Gut 2000;47:131-136, the 5 year rate for progression to hepatocellular cancer is 13.4% and the 5 year rate for progression to death is 15.3%.
Question 1 - is there a compelling argument that he gets tested if he will not be doing drug treatment?
Question 2 - is he correct in assuming that odds are he has the more common variety (which is resistant to therapy) because his test came back with numbers that were 'very high?'
Question 3 - you mentioned Milk Thistle as a possibility for managing the disease symptoms. There is a website liversupport (dot) com that seems to have a lot of scientific evidence that the brand Maximum Milk Thistle is better than other brands. It sounds logical to me, anyway. While I realize that you can't promote one brand over another, is there any reason to doubt their claims? The Internet has so many scams that I am pretty skeptical about anything having to do with herbal remedies after dealing with my father's esophageal cancer and my husband's colon cancer.
Also, I did not make it clear that the doctor he saw works at the health department clinic, which is apparently the only free clinic in the county. After dealing with her when he went in to get the test results, I doubt I can talk him into going back again. They gave him some HVC phamplets that were so old they had a phone number for the clinic that had been discontinued for years on it. I'm trying to talk him into getting an Internet connection to get more updated research, but he just keeps going back to his original argument that he doesn't need to know any more than the fact that he has it, he will live as though he is infectious, and that is the end of it. I'm thinking that he may come around eventually, particularly if I can present some logical arguments for getting tested, but it will take time.
Thanks again for your help. You are a godsend!!
geckokl
 

Hi geckokl

You have referenced the statistical progression of HCV.  The importance of further testing is to gain insight about your brother's progression.  There are many factors that affect disease progression and there are many factors that influence response to treatment.

Prior to making negative predictions, your brother should learn the facts about his disease so he can make an informed decision.

There is no correlation of "the numbers" and genotype.  The "resistant type" is

genotype 1a or 1b, and has a 50 % cure rate with the available treatment.  If the virus clears within the first 12 weeks, those odds are increased to 70-75%.

.There are so many products promoted on the Internet and not one has undergone controlled clinical trials.  The products at GNC, The Vitamin Shoppe and Costco are all very similar and contain the listed amount of the active ingredient, silymarin

Lastly, you can find information about clinical trials accepting new patients in your area.  All treatments, tests and examinations are at no cost.  He may also have new and more effective treatments available to him. The two websites are,  www.centerwatch.com  and www.clinicaltrials.gov

I hope this is of help to your brother.

God Bless,

Donna Fanelli



 
I was diagnosed with cirrhosis in late 2005. I had done two rounds of peg-intron and one year of daily infergen since 2002. I will often wonder if I would have still progressed to cirrhosis that fast if I had refused treatments.
My main question involves constant abdominal pain that I have had for over a year now. I was tested by MRA, CT Scan, ultrasound, 24 hour urine test, gastric emptying test and finally diagnostic laporascoptic surgery. All came back normal. Yet I still suffer daily pain of varying intensities of abdominal pain from the navel down. It ranges from 3-4.5 up to 7-7.5 on a scale of 1-10. It can range from mild to severe all in one day.
I have tried about 12 different medications to ease the discomfort. None worked. I finally saw a pain specialist that prescribed 5 mg oxycodeine. I have to take 4-6 before I get any relief. I do not get any kind of a high. The only way that I can tell they're even working is if my pain eases.
I have developed high blood pressure and type II diabetes over the last few years. I am also being treated  for depression, anxiety and bi-polar disorder.
Do any of these illnesses lend any reason for the abdominal pain? All of my doctors are at a loss. There has to be some explanation. I often feel people around me think that I am exaggerating my pain. That often hurts more than the pain. It hurts to have your credibilty challenged by those you respect or care about.
One last thing. I have been off work on disability for 5 years. I returned to work on 1/14/08. I am trying desperately to making a successful return to full-time work. All of the odds are against me but I am giving it all that I have. Please wish me luck on this tremendously difficult challenge.
 

Hi Lizanded,

I want to congratulate you and I pray each day will become easier for you.  To answer your first question, in all likelihood, the two rounds of treatment were a benefit and may have delayed your cirrhosis. Regarding your main question, I am puzzled.  It's quite difficult for me to shed light on your situation without taking a thorough history and performing a comprehensive exam.  I would also want to know all of your medications, your age, sex, look at your lab work and evaluate the results of your tests.  Did you have a colonoscopy, and what are your bowel movements like?  When is your pain most intense?  Did the pain begin before or after you started treatment? These are a few of the hundreds of questions that are running across my mind.

Feel free to contact me if you would like to discuss this further.

God Bless,

Donna Fanelli


My question for Donna,
I would like to know what is the normal dosage for ribivirin during treatment with pegesys for genotype 2b, My heptimax test was negitive at 4 weeks. I have had 6 weeks of tx now and would like to drop from 1000 mg to 800 mg. I have read many reports that 800 mg is the norm for my genotype and RVR. I also don't like the idea of it not being divided unequally, 3 pills morning and two nightly. My weight is lower and not higher and my pegesys is 180 once a week. My last liver biopsy was 2/2 two years ago. I don't drink, smoke, or have other known problems besides the hep-c.
Thanks for your help,

Hi Humbled,

Please let me know your weight, as of today. I will calculate your dose and discuss it with you. Thanks.

Donna Fanelli

Humbled we have also emailed your weight per Donnas request. 
 

Hi Humbled,

Don't worry about your weight.  After treatment, you will have the opportunity to eat and exercise.  Regarding your ribavirin , I don't see any problem with you reducing your dose to 800mg at this time.  In the WIN-R tial, there was no difference in SVR in patients with genotype 2 who received either 800mg or weight based dosing.  I calculate dose by multiplying Kg. X 13.  At 150, your ribavirin should be 900mg. Considering your genotype, your rapid response, and liver histology, I truly don't believe you will compromise your treatment if you reduce your dose to 800mg. Please make sure you complete the 24 weeks though.  Current thinking is that the treatment time can be reduced to 18 weeks is some patients with genotype 2.  Unfortunately, we're not exactly sure who these patients are!

Good luck to you and God bless.

Donna Fanelli



General Question:
 

We hear so much about the new drugs in trials etc. Many of them are/will be used with  Peg-IFN. Are their any trials without using interferon? . Their is some good news here at Jans site. We have a member which was in the Phase 2 Vertex 950 trial . She cleared....so wonderful.   Link to thread 39395.1 This was very exciting and promising for all of us.