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, an Adult Nurse Practitioner.

We are very pleased to provide information in this forum. The information provided is for general educational purposes only and is intended to help users learn about health and diagnosed diseases. As always be sure to discuss matters with your doctor prior to making any important decisions regarding therapy choices. Your doctor knows you best

From Indy:

Hi. I just finished 72 weeks and have extra meds that I've thought of taking however I'm feeling pretty bad. My WBC count is very low however and I'm afraid that if there is lingering virus that my immune system won't be able to manage. Should I go on Neupogen and wait to stop peg. Thanks for any help - I'm really worked up over this decision.

Hi Indyjo,

I understand how you feel, but please know that 72 weeks is a long time. There's little data to support treatment beyond 72 weeks and at this point your bone marrow is quite suppressed. It's not wise to continue, it's too risky. Bring the extra meds to your clinician's office to be used in those emergent situations.

Regardless of the outcome over the next few months, please know that your liver has begun to heal with the regeneration of new liver tissue during the period of time there was no detectable virus. This is in addition to the period of time you were clear during the first treatment.

I truly don’t believe continuing treatment a few more weeks will give you a better chance of SVR and I feel that the 72 weeks has given you the best chance with the therapy available today.

Keep us posted!

Good luck to you and 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

Update on Dottie:

Dear Donna,

My starting viral load was 1,050,000

4 weeks - 139,000

11 weeks - 9,000

24 weeks - UD

I'm definitely a slow responder - I would have to complete 72 weeks to have a chance for SVR and I'm very curious what the numbers are for the success rate of a 72 week tx when I didn't get UD until week 24 (I do believe I was UD a lot earlier than that - but for whatever reason couldn't get a viral load taken earlier than 24 weeks).

Would it be worth it to wait for the additional drugs for tx? My biopsy showed no fibrosis. Any thoughts you could give me on this would be very appreciated. I just completed shot 27 yesterday. Thanks for all that you do for this website! Dottie

Hi Dottie,

There is data to support a better chance of SVR with 72 weeks of treatment when undetectable at 24 weeks. The percentages vary depending the interferon used. Additionally, SVR at 72 weeks is dependant on the ability to maintain a full dose of ribavirin and PEG-IFN throughout treatment.

Needless to say, 72 weeks of these drugs will result in side effects and some long lasting. If your biopsy shows no fibrosis I’m not sure it’s worth the risk, because there are no guarantees. Without knowing anything about your history, it’s difficult for me to make a judgment.

I will share my decision making if you were my patient, at this point. I know it’s an accomplishment to achieve UD and if you were tolerating treatment without any side effects, continue as long as you feel relatively well. On the other hand, if you’re experiencing any of the following: changes in your blood counts, extreme fatigue, alterations in your mood and/or skin, eyes and a negative feeling of well-being, stop the treatment.

Better treatment options will be available soon and based on your biopsy, you can wait.

Good luck and God Bless you as you face a difficult decision

Stay Well,

Donna Fanelli

Donna,

I was treated in 2004 for Hep C. I cleared the virus at 12 weeks, but was only able to make it to 8 months. My viral load is now 1,300,000. I have also developed vasculitis. My GI Dr. said the vasculitis has to be addressed. If my RA Dr. can't find a way to do this I will have to go back on tx. My decision is whether to go back on TX or take an auto immune supressant drug to manage the vasculis. I know ultimatetly it's my decision. Can you tell me if the new trails have given people in my condition reason to hope if I have to go back.

Thanks,

Hopefull

Hi Myer and Everyone,

It has been a short and very busy week. I will get to your questions over this weekend and answer them in order of my perceived urgency.

Dear Hopeful,

Please let me know why treatment was stopped at 8 months, and what vessels are most affected by your vasculitis. When did you develop RA, and what stage of fibrosis was identified on your liver biopsy?

Your GI doc and Rheumatologist will need to work very closely together. Treating one problem can potentially worsen the other. Provide me with some more information and I will try to shed some light on your situation.

Stay well and God Bless,

Donna Fanelli

Donna,

My biopsy showed Stage 1, minimal scarring in 2002. Stopped tx at end of 2003 because I was enemic and could'nt afford the procrit to keep me going. VL started at 8000,000 and at week 4 it was 2,000, and non detectable at week 12. In 2005 I had an episode of extreme swelling of my feet hands and knees. I tested positive for RA, but haven't had another episode since. In 2006 I started experiencing the vasculitis on my legs and feet on and off since.

Saw GI DR. he thinks I would be a good candidate for the new protocol since I responded so quickly. The RA Dr. said yesterday that the best course of action is to treat the Hec C and the vasulitis should no longer be an issue. He said any other tx for the vasculitis would not help the systemic problem. He told me it's possible it can trael to organs which would be a much bigger problem. The choice to go back on TX is a difficult one, however it seems my options are vey limited at this point.

Going back to the GI DR. on Monday. I would appreciate any feedback Donna.

Forever, Hopeful225

Hi Hopeful,

Thank you for the additional information. It appears that your vasculitis most likely is caused by something called cryoglobulinemia. Simply put, cryoglobulins are proteins produced as your body’s immune system fights the Hepatitis C virus. If you eliminate the HCV, the cryoglobulins disappear and the vasculitis heals. Interferon can initially make the symptoms worse, but as the viral count declines, so do the cryoglobulins.

I truly understand the choice to go back on treatment is difficult. Make this viable option easier for yourself! Take what you’ve learn from your prior experience and use it to your advantage. Work with your clinician, and have everything in place to help you get through the entire 48 weeks. More than likely, you will need Procrit again. If you have insurance, the order for Procrit should be initiated when your hemoglobin begins to fall. If you don’t have insurance, ask your clinician what his/her plans are to treat the anticipated side effects.

Eat a diet high in complex carbohydrates and protein, low in fat and sugars. Take Omega-3 fish oil, drink plenty of water, limit the caffeine, and exercise regularly. Advocate for yourself and have the office staff advocate for you. You will do fine!

God Bless and Stay Well,

Donna Fanelli

Donna,

Thank you for your response. I did see the GI Dr. yesterday. It looks like the course of action will be to repeat tx including the protease inhibitor starting in September. Not looking forward to all the side effects, but at this point I have no choice. I'm focused on a positive outcome and finally no more virus. Are there any other things I can do to prepare for tx beyond what you have already suggested? I will be going on an anti depressant the month before.

Thanks again,

Fran

Hi Hopeful,

I assume you are referring to one of the HCV protease inhibitors currently in clinical trials. The current literature on the preliminary results is very promising. I'm not familiar with the particular protocol, but knowing that your red blood cells decreased on the last treatment, ask your GI doc what the plan is if you drop again. Not all protocols will allow for Procrit or other growth factors. If they allow them, is the stusy going to pay for them, or do you require your own insurance?

Work with your clinician to help you manage the side effects before they become unbearable. Starting antidepressants a month before is a good idea. Read the posts on this site and ask questions. You will do fine.

Keep in touch and 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,

Hi Donna,

I read an interesting study (40290.1) on aspirin having anti-HCV potential.

Could I try aspirin after I finish tx on July 4th as perhaps a little extra boost should any of those nasty dragon cells try to resurface.

I am a 1a, stage0/grade1-2 and in a 48wk albuferon study combined with ribavirin. The riba has been reduced twice. At wk 24 it was reduced from 1000 to 800 and at wk 41 down to 600 because of anemia. My hemoglobin is 9.9 right now and my study does not allow blood boosters, so if it drops anymore I will be taken off the riba.

It's wk 45 and I'm hanging in there at 600. When I saw this report, I thought maybe the aspirin may be a bonus after tx? Could it hurt?

Thanks Donna,

Mary

Hi Mary,

It's so good to hear you are nearing the end of treatment and that you were in the Albuferon trial. I think the results will be very promising.

I'm not familiar with the study you referenced. Aspirin has anti-inflammatory properties and may have some impact in liver inflammation. It will not however, prevent viral replication. Taking a low dose, 81 mg. coated aspirin daily will help reduce the risk of a cardiac event and is recommended to all. Discuss with your clinician about taking aspirin while on treatment. It may affect some of your counts and may not be permitted in the protocol.

Stay well and God Bless,

Donna Fanelli

I had my third liver biopsy on 5/5/08. My two previous biopsies showed me as stage 1, grade 2. This biopsy showed it as stage 1 grade 1. How can that be? I have carried hep for 51 years and found out I had it in '99. I have never had treatment and I live a very kick back lifestyle. I don't party, I don't drink or smoke. I think that has bought me time. I did feel that my doc didn't get a good sample this time, but he says he did. I am just floored that the grade of inflammation is now a one. Does that mean the dragon went to sleep? I feel that he took it from a not so diseased part of the liver. I could be wrong. We always talk about treatment and I put it off because I feel good and I don't want to suffer through the side effects. I also freak about insurance paying for it. I have Aetna and they suck. My doc told me that now treatment will be an option and not a must due to my readings. What is your take on this? I had liver surgery when I was four and had the left lobe removed due to a tumor. That part never grew back. I had two blood transfusions and that is how I got the hep c. I am now 55. Thank you for your suggestions.

Hi Snydog,

I am quite happy to be responding to a positive event. Just to be certain that we are on the same page, the "Stage" of your disease is a measurement of scarring or fibrosis. The "Grade" is a measurement of inflammation. The word “hepatitis” comes from the Latin meaning, inflamed liver.

Most often in the presence of viral activity, the stage of fibrosis will not improve and declines over a period of time. This decline is extremely individual.

Inflammation on the other hand, can have some variability. Let’s use the analogy of tennis elbow, which is an inflammation of the epicondyle joint. After a short course of Motrin and lots of rest, the inflammation subsides. When you play the next match, the area becomes inflamed once again.

The very “kick back lifestyle” you speak of is working for you. If you were to experience a stressful event or something that would rev up your system, the inflammation may return and as you calm, so will your liver.

The NIH, through the NIDDK, (The National Institute for Diabetes and Digestive and Kidney Diseases) has a mission in place to study what influences liver fibrosis and inflammation. I have attached a link that will provide some information on this. Take special note of the “Staging” fibrosis slides.

http://www2.niddk.nih.gov/NR/rdonlyres/D5F19296-47D0-47C1-A600-5A62211E5C38/0/ldrb_chapter2.pdf

Keep up the good work and God Bless.

Donna Fanelli

Hi all, I am new here and hope I am at the right place. My husband (ex) was diagnosed 15 years ago with Diabetes and continued to drink. Eight years ago, he was diagnosed with cirrhosis after biopsy. All this time he has continued to drink. Last week, he was diagnosed with RA and was scheduled to have knee surgery, but they couldn't because they say his blood does not clot. They are now sending him to specialists, one for the blood and the other for the RA. He does not remember anything the Dr says because of his encephalopathy. My concern is that he is near to end stage. He has been having nose bleeds but has had no massive bleeds. Any insight into this will be most helpful. Also, are RA and the no clotting of the blood relative to cirrhosis? Thanks

Hi BW,

I am sorry to hear your ex-husband's story. From what you describe, his liver disease is advanced and he is approaching end stage, if not already there. The liver is responsible for the production of certain factors that help the blood to clot and when the liver is very damaged, these clotting factors are absent leading to increased bleeding.

I am not aware of RA occurring with Hep C and alcohol related cirrhosis, unless there was prior treatment with interferon. There is a type of cirrhosis that is caused by an autoimmune process and that has been associated with RA, because both are autoimmune diseases. In fact Diabetes Type 1 is also an autoimmune disease; I don't know what type of Diabetes your ex has.

I hope he is being followed closely and my prayers are with him.

God Bless,

Donna Fanelli

All, apparently my mini-honeymoon is over. 10 days into treatment and I ended up in the ER last night. I took my evening pills, and went for my nightly walk (3.5 miles). Close to my return to the house, my palms started burning and itching and getting red. Then the bottoms of my feet starting itching. I felt an odd feeling around my lower lip and by the time I walked into my house, my lower lip had started to swell. Then my upper lip started to feel as though it were going to swell. I then started coughing. I called my liver doc, took some Benadryl that I have read on this site is good for many things and went to the ER. ER doc wasn't sure if it were a reaction to the riba but said it was definitely an allergic reaction to something, but the Benadryl had already started taking effect and my palms stopped itching. It seemed to take forever for the swelling of my lower lip to reduce but it finally did. It was funny, as I looked like someone who had an overload of collagen in her lip! He gave me prednizone and sent me on my merry way.

I took my morning pills and was a little anxious the same scenario would be replayed, but thankfully it did not. Has anyone heard of this???? I would more think it was the riba had it happened earlier, but ten days into treatment I'm thinking it isn't the riba.

I have also noticed now, a constant dull ache under my breastbone, but not to the right where I usually have liver pain. My tongue sporadically feels raw and I have a slight metal taste in my mouth. My appetite seems a little reduced ...

Are these normal side effects????

Tex

Hi Texas,

It sounds like you experienced "acute angioedema," which basically is an allergic reaction that results in facial/mouth swelling. It's possible it may be from the ribavirin. What other medications are you taking?

Please let your GI clinician know what happened and the fact you were given prednisone in the ER. You needed it, but unfortunately Prednisone works against PEG Interferon and may delay your initial viral response. The angioedema may re-occur, or it may never happen again. If you are taking a certain medication for blood pressure, this may occur again if it is not changed.

Take two tablespoons of plain yogurt and take a zinc supplement found in the health food stores. This will help minimize the metallic taste in your mouth.

Keep us posted.

God Bless,

Donna Fanelli

From Carolyn;

Please, please tell me that someone else feels like a constant furnace. I have these fevers everday! I do Tylenol and lately put the ice pak from my meds box on my forehead. I don't know how to go 38 more weeks w/ this. If you go through this, I'll take ANY little tips that have helped.Trying to stay strong.7 pm and I'm just feeling fever free.('til tomorrow morning) Don't worry I'll get through it. Just trying my best to make it easier.Thanks everyone, Carolyn

Hi Carolyn,

It appears that you are having an extraordinary inflammatory response, not the usual but it does occur. Limit the Tylenol and take an Aleve 220 mg. just before you go to bed, and again when you first wake up. This should limit the fever. Aleve is an anti-inflammatory and will get at the heart of the problem. Begin this regimen the day before your injection and a day or 2 after. Take a break in the middle of the week. Too much Aleve, or Tylenol for that matter, is not good for your liver. Also increase your fluid intake. Drink 3-4 liters of cold water a day. This will cool your body and you will feel more comfortable.

Stay well and God Bless,

Donna Fanelli

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,

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

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....

Hi Jenibjones,

Hepatitis C is a blood borne 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

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=3F74516309514A2F1B441B00401A641526542A285845171F07

4401400D31545E1A0C11464F275232551A155E1602110648

545E07104209330C52

Good luck to you and 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

I just had my first blood test 2 weeks after starting tx. Could someone please tell me what it means that my WBC went from 8330/mm3 to 4400/mm3 in just 2 weeks?. Also, the platelets went down from 233000/mm3 to 133000/mm3. the ALT went down from 103 to 85 and the AST from 87 to 80 but the GGT shot up from 107 to 137 and the ferritin from 202 to 301. My doc said that he did not needed to see me unless he found something in the blood tests, and I have not heard from him. However, I am curious why some results are better and others are worst. By the way, I spoke to soon about the side effects. I am now with strong muscle pains (it is very painful to raise my arms), joint pains in my fingers, constant headache, my eyes hurt, my gums are inflamed and bleed when I floss and have become very tearful. I cry for nothing.
Many thanks
Toons

Hi Toons,

I want to address your last issue first, because it's the most important. It's not unusual to feel teary eyed on treatment....there is a true reason for this. Interferon will cause a drop in your level of serotonin which is a brain chemical that affects mood...it's real, and not your imagination. It may become worse depending on your menstrual cycle. You need to call your clinician, get evaluated, and started on antidepressant therapy. These feeling will only become worse if you don't seek treatment, NOW.

Now for the rest of your question:

Your WBC and platelets have dropped because the PEG Interferon. The total WBC count is actually a sum of different types of white blood cells each having a specific function. Watching the ANC or absolute neutrophil count is what's important while on treatment. 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. Often patients may need a medication called Neupogen which will signal the bone marrow to release these neutrophills into the peripheral circulation. Not all patients require this however, as the count will level off and remain relatively stable throughout treatment.
Regarding your platelet count, there is no cause for alarm until it goes below 50. You're at 133 and it's unlikely it will go below 90 throughout the course of your treatment. You should not experience any unusual bleeding. The bleeding from the gums is caused by dry mouth and the beginning on gingivitis. During treatment, you need to be diligent about brushing and flossing, at least twice a day, and have a professional cleaning every 3 months.
The liver enzymes, ALT and AST, should continue to drop as the PEG/Riba keep working. The GGT and the Ferritin on the other hand may rise a bit more and then settle down. This is a reactionary response and the rise indicates something is happening within the liver. If all three enzymes, ALT, AST and GGT were to dramatically rise together, there would be cause for alarm...but in your case they are reciprocal which is OK.
In regards to the pains, you need to increase your intake of H20....you're just not drinking enough! These medications are very dehydrating and knock out many of the good cells. You need to keep the remaining cells pumped up (with water) to maximize their effectiveness. Over time, the joint pains will level off and keeping your mouth moist will reduce the bacteria formation in your gums.

I hope I've answered some of your concerns. Keep in touch and stay well!

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

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

New Questions

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 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

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

I am 3 weeks down on Pegasus and Copegas and quit eating my daily grapefruit not being sure if it would interfer with the ribivirin, since it has to be taken 2x's a day. So, is it safe to eat grapefruit? I miss my afternoon grapefruit. It gives me so much energy I'm missing in the mid-afternoon.

Hi Mrsbike,

As far as we know, there is not a problem eating grapefruit while on therapy. We think ribavirin is metabolized in the liver and most likely takes a different path than grapefruit.

So continue to enjoy ! Anything that makes time on treatment a little better is golden.

Stay well and God Bless,

Donna Fanelli

Hi nurse Donna, as you know, i am new here. my question is my primary doctor, has put me on iron 3 times a day. my my hemoglobin was 9.8 that was a month ago. i have taken them, i feel much better. she wants me to take them for 5 more months. heres the problem. i was all set to start tx august 7 2008. i was diagnosed with hep c genotype 1a last november, 2007. do you have any suggestions.will my hep doc proceed if my count is back normal? i ve always been anemic because of heavy menstral cycles. i am peri- menopause, havent seen one in 2 and a half months. also after i had found out i had hep c, i changed my eating habits, had stopped at that time taking iron, because i heard the liver did nt like it, and would do more damage.can you help me?

Hi Charm,

I'm glad to hear the iron has helped. Anemia is multifaceted with different causes and treatments.

It sounds like you had iron deficiency anemia caused by the excessive blood loss and improved with iron supplementation. You would not have been able to start treatment with a hemoglobin of 9.8 because the ribavirin typically causes a 10%-30% reduction. This type of anemia is called hemolytic anemia and iron supplementation will not help. Your GI clinician will decide if you should continue the supplementation and the decision is based on other factors such how the iron binds and your ferritin level.

Keep us posted and stay well.

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	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

From Pacific

Hi Everyone: hope you are well in mind, body and spirit.

Today i finally have my hand on some facts about my little liver. If only it wasn't in greek.

Any deciphering greatly appreciated .....and admired!

"The liver biopsy contains portions of seven portal tracts, most of which are at the margin of the biopsy, and all show an infiltrate of lymphocytes and mild to moderate lymphocytic piecemeal necrosis (oooo bad word)with porto-portal septa and incomplete parenchymal modularity. The parenchyma shows mild macrovesicular steatosis, occasional acidophil bodies and occasional foci of spotty inflammatiion. Centrilobular veins are few and normal. The iron stain shows very mild periportal hemosiderin deposition and a small amount of hemosiderin in Kuppffer cells. There are no globules of alphal-antirypsis deficiency and there is no copper binding protein.

I realize the features are those of chronic hepatitis C in architectural stage 3 (scarring and with grade 2 inflammatiion) but what does it tell me about how urgent it is to treat or not to treat? eg. waiting for telaprevir
any good bits?

thanks folks, keep good care. and donna, don't worry if you don't have time to respond to this tall order - i wasn't sure which category to file this in.
val
:)

Hi Pacific,

You are correct in reporting the hepatic architecture as a stage 3, grade 2. It also mentions steatosis, which is fat deposits in the liver and you also talk about some iron deposition.

Unfortunately iron deposition and steatosis are negative predictors of response. The new treatment modalities include treating the "fatty liver" before and while on treatment. This has shown to offer better response rates. The medications used are also used to manage type 2 diabetes and are readily available.

As far as the iron, there are some chelating medications, but none have been proven to offer a better outcome.

Stay well and God Bless,

Donna Fanelli

Hello Nurse Donna

Do you know whether an eye condition called angle closure could be aggravated by pegylated interferon treatment? I remember reading somewhere that treatment could be hazardous for people with retinopathy ?

Thanks alot for your help, Donna

val

Hi Val,

Another term for angle closure is acute angle glaucoma or narrow angle glaucoma, which is different than retinopathy. Acute angle glaucoma develops suddenly and is a build up of pressure in the eye itself. It usually causes severe pain and blurred vision. If left untreated it could result in the loss of vision. I have not read anything indicating that PEG Interferon increases ones risk for this type of glaucoma. In any event, if treated in a timely manner there are no residual effects and will require eye drops and monitoring life long.

Retinopathy on the other hand, is a disturbance is the blood vessels behind the eye. This usually occurs gradually, for various reasons, and will lead to blindness. Retinopathy has been reported with the use of combination therapy. In my experience, it has been associated with the ribavirin and the sudden drop in hemoglobin (the blood’s oxygen) that the ribavirin can cause. In many cases the vessels will improve when the hemoglobin returns to normal.

For these 2 reasons, it’s imperative that anyone who is beginning therapy have an eye exam before treatment, and immediately report any visual changes including blurriness, seeing spots or floaters, and eye pain that may occur during treatment. The exam should be detailed and include drops that enable the clinician to see behind your eye.

I hope this helps.

Stay well 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

hi nurse donna, can you explain liver pain. i sometimes have pain in my right side. i was diagnosed in november 2007, with hep c, geno 1a, vl. 1 million. only symptom i have is pain in upper rib cage. my g p thinks i have muscle spasm. my hep doctor wants me to wait for tx when new meds. become available. so i have learned to deal with the pain. is this normal. i am very healthy. not debilitating as i hear others say. could it be something else. all tests that has been done, found nothing wrong. the pain seems to be in upper right shoulder/rib area. sometimes it travels across to left side. please help

Hi Charm,

The liver itself does not have any nerve endings, but there is tissue covering the liver that when inflamed can cause discomfort at varying degrees. Additionally, the gall bladder is connected to the liver through 2 ducts. A problem with your gall bladder can produce the type of pain you are referring to. I would recommend you have an evaluation if you haven't done so already.

Stay well 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.

At this point in time, 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.

From Marie

I found out the other day that my VL is 3,080,000. My regular doctor has referred me to the GI. I just don't know what to expect. I am so afraid of the unknown. I was doing ok until I got the call from the doctor saying that they are going to set up the referral. I got the call this morning telling me that i have an appt. May 1st. I have a whole month of this before I meet this new doctor. What should I be asking and what should I be expecting to happen. Any input would be wonderful.

Hello Marie,

Please relax, take a deep breath and don't worry. There's no correlation with viral count and liver histology. You need to find out your genotype and then most likely you will need a liver biopsy. Try to estimate the timing of when you contracted the virus, and absolutely NO ALCOHOL!

Look on the Janis site. The information is comprehensive and accurate...unlike many other sites. I look forward to your future questions.
Good Luck and God Bless.

Donna Fanelli

From Geckoki

My brother has just been diagnosed. The health department did not give him a copy of the results of his test - is this normal? Does he have a right to a copy his test results? The doctor apparently is not very nice, but there is no other local alternative, since my brother does not have insurance. The first test came back with 'very high numbers' so they do not want to bother doing more tests which are 'very expensive.'

My brother is now refusing to consider treatment because he says it is not going to help and the treatments are too expensive/painful. If he doesn't get drug treatments, but does modify his diet and does not drink, what can he expect as far as a timeline on the progression of the disease? What I am trying to find out is what the average lifespan is if he doesn't do the drug therapy.

Given the expense and pain involved with the drugs, and the fact that it is only 70-80% effective (as near as I can gather), and the fact that it is so bad that you automatically qualify for disability, is it worth it? (I know that this will just be an opinion - nobody can say for sure, but I need to have something to go on here...)

Thanks for any info. I'm blundering around in the dark on this...

Geckokl

Hello Geckokl,

As I always say, I wish I had a crystal ball. Determining disease progression involves many variables and is never calculated with certainty.

Your brother has a right to his lab results, but from the doctor who ordered them. The health department cannot share them (as crazy as that sounds). Have your brother present to the office/clinic in person and ask for a copy. It's his right and the law that his request be accomadated.

Not having insurance is no excuse to avoid treatment. The drug companies are very generous, if you can prove need. Also, there are clinical trials in which all treatments are at no cost to participants, and there are clinics/providers who will charge a small fee for service. Yes, the treatment can be difficult, but with the right support and access to information, it's very doable.

You reference the cure rate as 70-80%. What is your brother's genotype? Has he had a liver biopsy? These are important pieces of information in determining response to treatment and disease progression.

A good diet high in complex carbohydrates, moderate protein and lower in fat, is a diet good for your brother and for all Americans. He may want to consider milk thistle and omega-3 fish oil. Most important, NO ALCOHOL.

I hope this helps, and I wish him all the best. Keep us updated.

God Bless,

Donna Fanelli

From Bette:

I have a question for Donna. Actually 2. My GI did not see any reason to do a bx because my ultrasound only showed fatty liver. But now I am pretty positive I want to have one done to be sure. I have a family history of Liver Cancer. How do I ask for one to be done? Is my GI the only one who can order one?

Also I have been told that Cymbalta is hard on my liver but it works really well for the depression and the nerve pain from Cryoglobulinemia. Is there another alternative that works as well?

Thanks for any info you could share.

Bette

Dear Bette,

Thank you for your questions. I definitely agree with you…you need a liver biopsy, bottom line.

An abdominal ultrasound provides an image of the liver via sound waves. It 's a useful first line test to rule out hepatocellular carcinoma or HCC, aka, liver cancer. I assume that your ultrasound, luckily, did not identify any atypical densities or growths. It most likely identified "echogenic changes consistent with a fatty liver." It however, does not indicate a level of scarring, or fibrosis and the degree of inflammation present. With your family history of liver cancer you are at risk, and if you have significant fibrosis, you are at even a greater risk. My recommendation to you is to find another provider. If you let me know what city you live in, I will try to find you someone qualified. Another option is to ask your PCP to order the biopsy. Interventional radiologists do most biopsies. I believe a CAT scan guided biopsy is best to prevent sampling error, but a radiologist disputed this with me, so I guess either is fine.

Regarding Cymbalta, Lily did come out with a warning that it should not be used in the presence of liver disease. I switched my patients to Effexor. Both medications are similar in that they target the same neurotransmitters, seretonin and norepinepherine. It does help the neuropathic pain in many patients, though this was never studied in clinical trials.

I hope this helps. Feel free to follow up and stay well.

God Bless,

Donna

This is a general question by Myer

Part 1-

A person has had HCV for 25 years. Had a biopsy 6 years ago and had no damage. Had another biopsy this year and it showed stage one grade one...Geno 1...Age 50... With normal liver function tests. Is it wise to treat or wait to treat, if at all? Do we know what the time frame is that we will progress to stage 2 ? Will we progress?

Hi Myer,

You pose a common dilemma most providers face at one time or another. Whether or not to treat a slow progressor is dependent on individual factors such as family history, the presence of fatigue or depression, to name a few. A real generalization regarding progression of fibrosis is 15 years for each stage. However as one ages, the progression occurs more rapidly. We also know that in light of minimal fibrosis, response rates increase. I wish I had a crystal ball. When I manage a patient like this, provided they have no significant past medical history or a history of severe depression, I will recommend treatment. I start with the first 12 weeks and see how it goes. If there is a complete viral clearance and treatment is tolerated relatively well, we go on. There are other factors I also look at including the presence of iron, fatty liver, history of alcohol use/abuse. There is no across the board answer. The decision to treat and the treatment itself needs to be tailored to each individual.

Part 2- A person is newly diagnosed. Contracted HCV in the year 2008 with either genotype what would be your advice on treating? I ask this question because of the problems we are having with the Endoscopy Centers across the country.

Myer, your second question is also another tough one out in the debating field. I believe newly diagnosed persons have the best chance of response and may not even need the full 24 or 48 weeks of treatment. Again, this decision needs to be tailored individually with many factors taken into consideration.

Regarding the endoscopy centers, I believe most are safe and only a very limited few don't clean the scopes and the wires the way they should.

From Serenty

This is such a GREAT IDEA!

My question is, what changes does Milk Thistle make on stool? I have read articles on but they are not clear as to the changes, other then it makes the stool softer and helps regulate for those who vasilate between diarrhea {sic} and constipation.

I was wondering if it changes the color of stool. I had stopped taking Milk Thistle and recently added it again to my regimen (I'm on treatment). I noticed that my stool changed back to a pale color. I contacted my liver doc and he immediately ordered a work up of my stool for bacteria, parasites, blood, etc. Last week, all the results came back negative and he concluded that it was something I was eating. I did some research and now have decided to try an experiment. I'm going to stop taking the Milk Thistle and see if my stool changes back to normal color.

Sincerely,

Serentiy

Hi Serenity,

Pale or clay colored stools are usually caused by a problem with the biliary system or some sort of malabsorption. I don't know if the Milk Thistle can cause one of these problems.

Sorry I couldn't be more of a help.

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, an Adult Nurse Practitioner.

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