Dr Reluctant to do biopsy do I need to have a biopsy?

[simplehue]

I was diagnosed in Dec 2005, started my Tx jan 19th 2006. My doctor seems relucant to do a biopsy, should I push for this? Will it make a difference in my treatment? Why would he not want to know more about my liver condition? I had an ultra sound in the beginning which didn't show any abnormalties. I am on rivavirin 1200 mg a day, pegasys 180mg shots a week, Lexapro 20mg a day, omeprazole 20mg a day. I called yesterday as I have a sinus infection, he said I need to go to my reg doctor for medication for that. So I did, he put me on Levquin 750mg and methylprednisolone 4mg 6day supply. I have geno 1 which the Doc says only gives me a 40% change of getting over this which makes me wonder if the treatment is really worth it. Now they may change my injections from the pegasys to peg-intron but when I ask what the difference is they said there really isn't any. Is that true? Any input is welcomed at this point for me. Thank you

[beamishboy]

Simplehue-i have hepc, 1b & using peg-intron..hi viral load,30 yrs infected-210 ib male...At week 12 i tested undetectable >10!!!!!!!! in a word: this Combo is kicking vrus Butt;Slaying the Dragon!!!!!i am quite sure that sucessful response,sustained elimination can be achieved w peg&riba-Just keep to the program;Full Compliance;drink lots of water;treat the 'unbearable' sides and Hang in There--You will Clear---GOODLUCK
CanDo-i am enjoying the Full pleasure of human companionship,thank you!!-now get that too-active imagination of yours outa the barnyard!!!....hope your near&dear appreciate 'All' the unwarranted attention/grief i absorb to keep the homefires from Raging...jeeesh,what i do for a friend....
Goofydad-try physic connection w/ that goat ya gobbled -not so baaaaahd

[GoofyDad]

<i>sending me telepathic messages to feed them, train them, walk them and worst of all, pick up their poop!!!!</i>

Forsee, are you sure you should pass this off as a run-of-the-mill dream???

<a href="http://www.workingdogweb.com/Sheldrake.htm">The most important conclusion from my research on telepathy is that the strength of the bond between the animal and its guardian is crucial</a>.

Now I'm trying to figure out how I can send telepathic messages to ge *me* fed and my poop picked up. If that works I might expand the repertoir to include Battle Hymn of the Republic.

[can-do-man]

Oh great, now you tell me. I thought they sent me to the funny farm. Dang doctors anyway

[Forseegood]

Canny Baby...(this just in)...this place always was a zoo!

[can-do-man]

Hey goof, Is it just me or is this place really turning into a zoo?
lilmoma has a horse named charlie sleeping with her even though its biting her.

Then you got big chuck and the collar wearing strator doing who knows what.

Thens theres beamer and his barn yard frolics with riding horses.

And now forsee post this.....kinds of dogs looking at me, sending me telepathic messages to feed them, train them, walk them and worst of all, pick up their poop!!!!....

Whats next man?

[GoofyDad]

<i>can you imagine all of us in Oaxaca treating??? </i>

Ummmm - Me no thinks you wants to traips around Oaxaca while ingesting the Ribas. No-siree-Roberto -- unless you can hire a rickshaw! But heck, by then I should be able drag y'alls sorry butts around in a wagon.

<i>and worst of all, pick up their poop!!!!....ahhhhhhhhh! Like that scene in Gone With The Wind</i>

Dang Forsee! What, do you know every poop scene in every movie ever made?

[cuteus]

nice to meet you and Eva, welcome to this wonderful cyber home.
The view califia described sounds like glancing at a corner in Paradise, let us know if it is.
I was a little confused when you stated Eva was at ESLD, but her biopsy was a stage 2. Did I misread somewhere? was that the last biopsy performed? I always thought stage 4 was where ESLD patients were.
have a smooth ride home

[Forseegood]

Great to see you guys as well! so glad youre finishing Kalio, betcha a lot of people are if my senses are right...that finish line must be real dang hard to get to....I marvel at the people who are extending...even though you, Goof, and some others are finishing, sure hope to see you once in awhile...we that lag so far behind...Can Man, youre in the middle of treatment right? can you imagine all of us in Oaxaca treating??? Who needs magic mushrooms???

It would start an international crisis with Vincente Fox calling press conferences! ha ha! (Goofie Boy, please dont eat the goat meat!!! I love goats!! though I do remember how fabo those tacos were, ha ha! (con poquito salsa y seboya, yummers!)... can you all imagine Goofie on shroomies! man o man, head for them hills!) speaking of...


Just had the weirdest dream - one of those dreams you wake up from with your back bolt upright in the bed....I dreamed I woke up with the sun on me on a real beautiful sparkly morning, fluffy clouds in the sky...suddenly this smell hits my nostrils and I can hear all this barking and dog moaning and crying...and I get up in a fright to see this whole football field full of various kinds of dogs looking at me, sending me telepathic messages to feed them, train them, walk them and worst of all, pick up their poop!!!!....ahhhhhhhhh! Like that scene in Gone With The Wind cept with dogs! These doggies are gettin to me though I love them so! (Avid-reader, can I get a witness! ha ha!) Everyone have the greatest weekend!

[NYgirl]

Hi welcome to the board. I am so moved by your posts. I pray all the best for you and your wife. I totally am one who believes in the power of miracles so never give up!  :)

I wanted to say hello and let you know that yes we ARE here and we will do our best to help you in any way that we can.  Sometimes of the day people are just around more than others...so keep checking back - we always get back to people as fast as we can. Just sometimes we'ere off being sick or resting like any HepC patient!  :)

Welcome Spirit...my prayers are with you and your wife.

[can-do-man]

hey goof, look who popped in, Its that gal that can see good.

[Forseegood]

and Cali, still on cloud 9 about your pcr, we'll be in Oaxaca yet! or was that Planet 9?....oh, that's goofy...

[simplehue]

First Let me Thank You all so much for sharing with me, your thoughts,opinions,experience,knowledge,courage and comfort. I needed it this morning.
I started with my regular Dr. with sever fatigue,he set up the blood work, told me what they found and refered me to a gastroenterology group. That is the Dr. I see now for the Hep C. I found out from My MD in Nov. saw the new Dr. in Dec and started the medication Jan. 19th. I trusted them to guide and give me information as to what I needed to do. Doing a biopsy was talked about in the first meeting, but then when I saw him again and ask about it he gave me a long run of why we didn't need to. I took him for his word and did as much research as I could on my own. I have not had a viral load done at this time. He took me off work in Dec. which put me on short term disablity
for the moment with my job. My insurance had to be dropped because of not having the money to pay it. The insurance I had only gave me 500.00 per year, then you had to meet the deductable that was 3000.00 and then meet a co-pay of 5000.00 before it would pay 100%. Making 10.75 an hour, I didn't see as a single grandmother, raising my granddaughter, how I was even going to keep my home,pay bills or pay for this medication and blood work.

I signed up then for a medical card, it was approved for a month, then when I finally got my back pay for disablity the first of this month and I reported it as they told me too, they said that because I have 238.00 a week in disablity I do not qualify for a medical card any longer. I had been here reading the forums since january, but when I got the news of no medical card, which I had never had before in my life, I wrote MHI to ask what I could do. They wrote me back, gave me a number to call. When I called the Dr. office to tell the nurse of the situation she just told me that they would switch the medication from pegasys to peg-intron so I would get my meds from the same company.I ask if there was a difference and she told me no.
I was iv drug user, I am sure that is where I contacted this. I am in recovery for the last 21 year. I tryed to answer some of your questions, so you have more of an understanding. Again I want to thank you all. My thoughts are with you and good luck.

[Forseegood]

ditto from me Spirit, miracles do happen, I've witnessed them more than a few times...and Cali is right - though I've never been in that hospital...what a gorgeous view that area affords...peace and blessings to the both of you...

[Califia]

Spirit,  just wanted to let you know how very moved and humbled I was by your post.   Please convey my best wishes to your beloved Eva with my sincerest hope for the best possible outcome.   You're in such good hands at UCSF.  If you have some time to spare, you might want to check out the spectacular view of the Pacific from the top floor of the medical library next door to the clinic.   The sight of that serene blue ocean always brought me such calm, even in the midst of medical turmoil.  Peace unto you, brother.

[GoofyDad]

Oaxaca? Best damned goat tacos and fried grasshoppers I ever had. A dip on the Hotel Victoria pool followed by breakfast on the veranda? Hmmmm..mmmm. Better than a cold shot of Peg into  scratchy raw azz cheek! Whoo-hoo!

Where have you been girl? We've been looking all over. Almost started a poo thread to try to draw you out. Nice to see you.

[can-do-man]

Just so you know im given a 50% off special on all bx this week. And no im not a doctor. Had to put that disclaimer in there you know. Also for some odd reason no appt. needed.

[honey11]

Simple,,,I was just like you and found out I had it and went to dr.  He claimed at the time that for hepatitis c that there was no known cures but,,,,Treatment involving interferon that had a success rate of about 40% for Geno 1's.   He said at time,,,blood work was involved and ultra sound but no biopsy before starting tx.  I trusted this dr to know what he was telling me about hepatitis.  There was never a doubt in my mind of not treating,,,,it was just when could I start.  I treated and am SVR as of 1 year,,,,however,,,that biopsy,,,,I wish I would have pushed and gone to another dr that would do them because I never knew the condition of my liver and after treatment,,,,if for instance you relapse,,,you wouldn't have anything to compare to a biopsy to see if the tx set you back a stage or two.  

Spirit,,,,Welcome to the board!  Sorry that you and your wife have been through so much. My prayers are with you both!

[spiritwalkin]

Thanks, I was gettin ready to leave this board as I didn't think anyone was home. I wish you all could meet Eva. She has endured so much as a research patient with the full knowledge it could ultimately help others. And her Docs, maybe a dozen or more say she is a great inspiration as her spirit is so strong. I will fly out to Calif. next week and drive us back to Indiana. They are letting Eva come home for one month. Then her 9th. bi-op then when she is more stable back on Co-Pegasys. Her biggest complaint is that now she is insulin dependent diabetes type 2. 2 shots a day, and can't eat the way she wants. But we think the Prograf is whats made her diabetic. As they say its extremely complex and they are learning as they go in her case. Thank God most folks won't get as ill as she has. But she actually looks 500% better then in the past 6 years. Hard to believe you can look so good on the outside,while so troubled on the inside. see-ya

[spiritwalkin]

Hello, I'm new to this forum, but have extensive experience with all things Hep C. My wife is back in ESLD after 3 years post living donor transplant. In fact our son was the donor, and a small town hero. That was then. Now my wife is progressively worsening quite fast. This is after 2.5 years of Peg-intron and then  Co-Pegasys. The switch was because some non-responders fair better with the latter. She is a CDC and NIH research patient. She has had 8 yes 8 liver bi-ops in just 18 months. I know way too much about this stuff for a layman who himself is disabled. The reasons why Drs. reluctant to do test varies. But as it is an invasive albeit brief needle insertion, their are more risks involved then other tests. i.e. bloodwork and ultrsound. Also their is question of how well a single sample that is so tiny can accurately tell how well overall is that huge 3-4 lb. organ. This is why my poor wife has had so many, as well as it is the only accurate way to track Fibrosis to Cirrosis. Example, Eva (my native american wife whom I love dearly) had bi-ops several times way to the right side where disease may not show up well, as progression outwardly gets to that area much later. This was soon proven when her blood work started getting worse. As the next few bi-ops would show not only organ rejection but chronic Hep C. was present for some time in the area closest to her belly button. When the Interferon/Ribavarin was stopped, so did the rejection. Coclusion being that the medication itself was now couterproductive. Yet another bi-op. Now she is Grade 3 Stage 2 on the Metavir scale. And will not undergo another TP. Long story, different thread. But don't be alarmed if costs are also your Drs. reasoning for not doing a bi-op. This early, thankfully in your disease it may not help any more then good blood work-ups. They contain a vast amount of info. I've been going over my wife's , which are weekly for almost 3.5 years now.Good Luck and be strong this is a long stressfull road to pull. I'd stay prayed up, May God bless all of you folks.

[avidreader]

When all is said and done you have already started treatment so --- yes. It would have been better to have a biopsy before making the decision to treat--it would have made your consent more informed but that's water under the bridge. You are not the first gen type 1 person on this board or on treatment to start without a biopsy. I do however strongly question his decision to switch pegs so early in treatment. Have you had a PCR yet (a test of your current viral load?) They usually do the first one at 12 weeks unless you push hard for an earlier one and your insurance allows it. Some doctors switch pegs if there is an indication that the patient is not responding to the peg they started on, but I've never heard of that decision being made so early in treatment before. I would make sure that the peg switch isn't insurance driven. There is a difference. There seems to be a consensus that the side effects on Pegasys are milder then the sides on Co-Peg. For that reason alone, as a first time treater you might want to insist on staying with the Pegasys. There are no definitive studies showing that one peg our performs the other, so why not stick with the easier to tolerate on until you have a reason to switch? Just my opinion--not a doctor, just watch them on TV.

Good luck--let us know how it goes!

[Tallblonde]

I'm curious...how much research, if any, did you do on hepatitis C and Interferon/Ribavirin before you started the treatment?  Don't take me the wrong way...I'm not suggesting you made a mistake by doing the treatment.  It's just that I'm intrigued by people who are already on treatment and then they have questions about things like biopsy and success rates.  

Do you mind sharing how you came to decide so quickly to treat?

Susan

[dyce]

Being 1-a you definately should have been given a bx prior to tx. Two's and threes sometimes the doc. will descide not to do the bx. My doc. told me the reason behind the procedure was to see what shape the liver is in . If no or very mild damage, maybe wait to tx and wait for better drugs or vice versa, have maybe more damage and make a descision on the tx being necasary.
It's a important step in the early stages of dx.

  This doc. does't impress me at all!I never heard of swiching from pegasy to pegintron while on tx. Pegintron is dosed by weight 1.5ug per kilogram of weight, where pegasy is dosed the same for all 180mcg per dose. Pegintron because of it's molecular setup is distributed thru the entire body and it's organs. Pegasy having a larger peg molecule attached to the interferon molecule when injected is only delivered to the blood and organs, especially the liver.

  If I were you my friend I'd get a 2nd opinion. This doc does't sound to hot.My doc. had the bx done right after my pcr and then we talked about tx.

Good Luck Dyce

[NYgirl]

I'm another who agrees WHOLEHEARTIDLY that you should insist on a biopsy.  

I would not consider doing treatment with the current drugs if I did not know what exactly was the state of my liver.  How can he GUESS what is going on inside of you?  

Which number did he randomly pick?

He certainly can't say that Grade and Stage of liver damage is not important...and how else is there to know?

Especially as a Genotype 1 it is critical to know.  I would take all the advice in here and go to him but

DO NOT SAY 'THE PEOPLE ON THE INTERNET SAID' doctors HATE that and it won't get you anywhere.  Say something like "I have been doing some research on this and I have read...".  Take my advice there please LOL.

Also I certainly don't understand the change in drugs --- I mean a change from Peg to Consensus Interferon would make sense but Peg Intron to Pegasys is so close it makes no sense to me...(not that I'm a doctor)

Is this a Gastroenterologist or a Heptologist? An Infectious Disease doctor?  Or is this a primary care type guy?  You sound like you REALLY NEED SOMEONE MORE EXPERIENCED IN DEALING WITH HEP and the newer information and all that too!

Best of luck. Get that biopsy. It's quick and painless and there are such MINUTE chances of anythign happen - you might get hit by a truck WAY sooner.

[cuteus]

are you seeing a hepatologist? this dr does not seem to be very well versed on hep c.  I would start looking for another one, just in case. as for the biopsy, most drs don't do them while on tx, it should have been offered before tx. Still, look for another dr, this one does not seem to inspire confidence.
good luck
the pegylated interferons are pretty much the same. you will find studies that show one works better on certain genotypes and studies contradicting the same theory. the fact that he wants to switch after starting tx, gives me less confidence in his abilities. It seems that consensus interferon is the most effective for geno 1, but most drs save it for relapsers. don't know why.