Hep C treatment worries

Hey all I am new here, This may be lengthy so hang in there please. Let see, 8 yrs ago I was diagnosed with HEP C and at the time my DR did not want to start interferon because he said it wasnt worth taking at the time. I was also only a year sober from an 8 year heroin addiction ( I am now going on 8 years off of drugs etc...). Now my DR wants to start the treatment, I just had all my yearly blood work and ultrasound and he wants me to get a liver biospy. For some reason they keep you awake for this which is insane in my book, and I am terrified of getting this done. I dont do good around DR'S and their tools (odd that I had no problem sticking myself for 8 yrs). So 1st question, is the byopsy terrible, my DR said it was easy but sore afterwards, so I asked him when he got his byopsy and he told me he never had one himself..How the **** do you know then I ask?

My second concern is treatment itself, I was explained briefly about what to expect. But I started reading up on the treatment and see all the class actions suits against some of these drug companies that make the interferon. So is there an type of interferon I should stay away from (like generic, which company etc...)? I am nervous about this because I read all these horror stories of people losing site, and memory and other brain damage cases. I think I can take anything they throw at me as far as getting through the treatment...but I once again worry about what is going to stay with me from these drugs after treatment like long term permanent side effects.

So any help on these worries and questions would be g

[jmjm530]

Mnkr said: ... read all these horror stories of people losing site, and memory and other brain damage cases
-------------------------

Unfortunately, your posing your question to much of that same group of impaired people since many of us are currently treating :)

That said, liver biopsy carries some slight risks but these risks are outweighed if your individual case warrants it. A good liver specialist (hepatologist) should help you make the decision. The procedure itself, is usually done while awake --  sometimes with mild sedation --  and isn't half as bad as most of us expect. Hey, I've had five or six since 1969 :) You should be in and out of the hospital the same day.

Regarding the different interferons -- most treat with one of two pegalayted interferons --  Peg Intron (Shearing) or Pegasys (Roache). Personally, I'd stay away from either of them until you weigh the risks and rewards of treating with your doctor. A lot of this decision this has to do with genotype, liver damage, age, health, etc. But if you do decide to treat, both of these pegalayted inteferons have their advocates.

-- Jim

[NYgirl]

HI sorry about your dilema but be assured there are a LOT of us out here who are going through treatment right now and a bunch of people who HAVE and are CURED!  It can't get better than that!

The biopsy while it SOUNDS like it's going to...isn't painful at all.  Everyone is initially just as freaked out about it as you - but once they have it done they all come back and say hey that wasn't painful at all!  It's more just nerve wracking expecting it.

Try to remember - your liver has no nerves in it at all and it's just a needle - not a big knife or anything like that!

It's so important for you to have it - it REALLY let's you know exactly where your liver stands in the progression of the disease.  It lets you determine if you really need to start treatment or if you can wait.  It's WORTH HAVING!

I was diagnosed last year but have had this for probably 25 years.  I am on week 22 or 48 (but will most likely be extending to 60 minimum).

Did you find out from your doctor what your genotype, viral load and ALT and AST are?  They are important in deciding treatment and how long you will treat and things like that.

I don't know anything about law suits and types of interferon.  I can tell you that I have made out pretty well injecting all these poisons in to my body.

I have to admit I have administered MANY other TYPES of poisons in my life...without ANY thought except how to get more of the...and never gave it a second thought.

At least THIS poison is helping to heal my liver and rid me of a disease that can not only destroy my liver but also cause liver cancer and kill me for sure.

The good thing is your ultrasound was clear so you dont have tumors or anything in there.  

Get the biopsy and find out where you stand then you can see what is really going on.

Please post the other info I said above if you can.

Oh you know nobody in here is a doctor...we are just all in the same boat as you and have asked question after question just like you are doing now.

Best of luck

[mnkdrt]

Thanks guys...The byopsy doesnt sound so bad now :)
As far as the genotype, viral load and ALT and AST are I am not sure yet. I am waiting for the test to get back to my doctor and also waiting to hear from the nurse to make a byopsy appointment.
I will keep everyone posted and am sure I will have a ton more questions when I do get more info.
Talk to you soon.

[Dale_Ray]

I had a liver biopsy in 1996, at the direction of my doctor, to check the extent of liver damage from the hep c. He told me it was a painless procedure and I would not feel a thing. In my case that was far from the truth and him telling me not to jerk while he hit me with a needle in the side and sorry NY it hurt. I believe my nervousness and stress caused most of the problem but why go through the stress if medically they can make it painless. Push for sedatives. If they can do it with a colonostopy (from Tennessee can't spell) then certainly they can do it with a biopsy. Get the biopsy though its the only way (based on my Einstein doctor) they can know the extent of the damage. Believe me they would want to sedate me before attempting that one again. Good luck to you. Dale

[can-do-man]

Hello and welcome, this is a great forum to visit, as close to the funny farm and zoo as you can get. :)

By all means find a hepatolgist. I to was scared of having a bx. But mine went real smooth, had some pain meds thru a iv and the bx. was done guided by ultra sound. Was awake the whole time but didn't feel a thing. The worst part for me was having to lay for 4 hours afterwords. Slightly sore for a couple days but wasn't anything to need any meds for. wait till you get your bx. reports before you worry to much about tx.

As for causing brain damage, well im not the best one here to answer that one. :) Visit often as admission here is free. Best of luck to you

[Moeymitt]

Welcome...we have all been there. I have had 2 bxs and with the meds they give nowadays you will be pleasantly surprised. I was just as terrified my second one but all went well and I am glad I did both. It really gave me information to go on as to when, if ever to treat. You are most likly in panic stage now but gather all the info you can, keep coming back to this site and go through the archives, lots said about liver bx and fear.

Hang in there... it gets better

[mnkdrt]

Wow, you guys are great. It is good to know I found a place to come to. I posted on a few other boards over the couple of days and no where near the hospitality and info as this one.
I post the test results etc when I get them.
Thanks again.

[can-do-man]

Just hope you have a sense of humor, cause there is a few here that like to clown around. Not going to mention any names, but they know who they are.

[strator]

Congrats on the 8 years of a better life. I don't kow the risks of bx but mine also went smooth, and i was just getting clean and sober then. Basically felt like a stomach punch or good hit at football. Layed up the next day.
As far as treatment you probably want more info before you decide or jump in. I waited til I had 2 yrs sober, saw a therapist, and went to a local hep support group for 6mos BEFORE starting. But I was new to sober so was afraid of jeapordising sobriety if the sides hit me, especially mentally/emotionally.
This week will be shot 23/48. and what sx are I have are livable. For me I keep close here and in recovery meetings. Still working construction when I have work. Sides on tx are a Cr**shoot that not everybody even gets. Ya prepare for it best ya can and get through it the same way ya got here and got sober. I figure the after effects are probably the same. some have it a rough time and others  say it's a new life.
This place has helped me a ton. Don't stress, read up and talk it out.
Be Well,
Don

[Tallblonde]

Sorry to get your dander up.  Two other members were also critical of your "there's no harm in trying it" comment.  In my opinion, it's immature to dismiss constructive feedback when it's well-intended.

Susan

[wMich]

Welcome aboard. I too was an addict for many years and shared some of your concerns and apprehensions going into this Hep C treatment thing. Thankfully I too have been clean for many years. My biopsy was really a piece of cake, no pain except a minor dull ache afterward for a couple days. The worst part was just plain thinking about it ahead of time. One small concern I did have was with one of the meds used for pain/anesthesia, Fentyl, which is a close cousin of heroin. I had no ill effects from it. Ask the doc too if he can use Versed during the procedure. They used this on me and though I'm told I was awake and talking during the procedure, I have no recall of it. I came to foggy and yacking away in the recovery room and was out the door in an hour or two. They will not let you drive home from this procedure.

Sounds like you have a head start on educating yourself which is one of the best things you can do at this point.

[beamishboy]

my biopsy was not bad..i think i got demerol& once they were in,i told take all they needed....little ache for couple days..and bob's yur uncle! seriously GOODLUCK

[can-do-man]

susan says...I'm kind of a treatment pro. Now thats a understatement if i ever heard of one. After 8 trys at this im sure i saw your name in the guinness book of world records.

I'm sure you've seen, heard, and had it all. If anybody is qualified to give advice it has to be you. I don't know how some of you gals here do it. Eisbein doing over 2 years non stop, Lvdbygod 2 years and still counting??? You still fighting after 8 trys, you gals alot stronger then i am. Good luck to you. You deserve to win.

[friscosue13]

I'm not a hero and I'm a big baby --  also not thrilled with drs.  After putting it off for two years, I finally had my first bx last week.  It was done at a radiologist office under CT scan and local anasthestic.  I felt only slight pressure when the first needle was inserted, and NOTHING when three samples were taken.  I had no pain the rest of the day and none since.  Just make yourself RELAX, DO WHAT THEY TELL YOU, and you should  be fine.   You'll be more uncomfortable if you tense up.  My team gave me the option to come back another time because I was so nervous, but I just wanted to get it over with once and for all.  Piece of cake.  Again, it's your first time, but not theirs.  they know what they're doing.  Just remember to relax and do what they tell you.   Be well.

[susan400]

I don't know if I'm the right person to ask or not.  I'm kind of a treatment pro.  And right now, I'm on off label doses.  But, if you need encouragement, I'm here!

Susan400

[sindog]

Hello,
I found out in jul 05. I was very nervous as you are. I got my biopsy done in a hospital at their radiology dept. It was done using a cat scan to make sure they didn't accidently poke a hole in my liver. My biopsy was painless. You have to be awake because you have to hold your breath when the poke you. Mention what area you live in, and maybe someone can refer you to a good place to get it.
As for treatment, my first three shots were the worst. Sooner or later you will become somewhat anemic and your white blood counts will fall. When this happens it may hit you like a ton of bricks. It did me. After a week or two, I felt alot better. I'm going on shot/wk 15, and feel great. Still have chills after shot day, and feel kinda dizzy, but not bad. I work 8 hours a day, take a brisk walk at least 3 times a day, and do some sort of physical labor at home. Ask questions thru the forum as you go along and don't be scared. Take time and learn about what your undertaking and go slow. You've had this for quite some time and several months of planning and education will not make a difference. Take charge of your illness!

[dancegirl54]

Congratulations on your recovery!! I have been in since 1983 and it's still a day at a time no matter how far away from a drink or a drug I am.
You do not have to make a decision about treatment today! A step at a time, that's what we can handle right? And step one is getting your biopsy.
You will hear a lot of opinions on this forum and they are all great but you and I (and others here) need to keep it in perspective as persons in recovery. This is not a recovery forum, it's a hep C forum so lots of folks do not have our experiences and will suggest or encourage pain meds not knowing that to an addict this can not only be harmful but fatal. Setting off the compulsion will lead me down a path that I probably won't come back from. I have read many a post and thought 'well this person takes such and such, why can't I?'. The truth is that I can't.

My biopsy was not bad at all, the worst part was getting the local, then it was a breeze. I expected a lot worse.  My daughter who is NOT an addict had one also and she chose not to have any medication either except a local and she was fine as well.

Most importantly for you is that your doc know your history with narcotics 8 years is something to be proud of.  Good luck

[sunspot]

mnkdrt. I was in the same place as you. Can't stand the sight of a needle now.
If you want some kind of sedation (I demanded it), make sure it's prearranged before your bx, both at the Dr's office and on the morning you have the procedure. The bx Dr did not know about my Dr's Rx so I halted the bx until I was dosed. It annoyed the bx Dr but it was me on the table, not him.
Everything went great after that. I only had a very slight ache that night afterwards.
I hope this helps, Dana

All. My old desktop crapped out a month ago but I'm back now. I'll post a 6 wk post tx report later.

[strator]

Hey welcome to the den. You found a great place.Do you have your bx results? Helps sometimes to post some stats like genotype and all here. People are at so many varying stages here it helps people with similarities to suggest stuff. Don't stress on the eyessight stuff or any of the sx too much. Some people only have mild sides, others are rough. Losing vision would be way at the rare end of the list.
Other people here I'm sure will have better info on the ADs. They considered putting me on them before starting but after a few mos of therapy we decided I'd wait and see what happens. Almost 1/2 way through 48wks and haven't used em. Lot of variables in this tx from 1 person to another.
Again welcome,
Don

[strator]

dancegirl54-Glad you brought that up about those of us in recovery. Tell you the truth, when I walk into a drs office, whether eye dr, dentist or what, I tell em I'm in recovery and a garbage can before I even mention the hep c. No question between my doc and me. Booz and drugs alone will kill me a lot faster than hep c. When I went for my bx I was still struggling after a 2 year run, bouncing in and out of recovery. I had like 2 wks clean(again) that day, I took the local but when my ride home came the hospital insisted I take an oxycodone before leaving. I argued a little but was new to it and crazily had let my active brotherin law pick me up instead of someone sober. I did take it and one at night, but in my case I shouldn't have. I don't blame my going back out a few days later on it(I just wasn't 'finished' yet. However I learned a lesson, including having someone sober w/me. Because the hospitals don't make it easy. After I was clean 6mos I went in for a eye injury from work. Made it clear about my addictions when I walked in the door, again before the eye docs touched me I said DO NOT give me pain meds. "Sure no problem." They fix my eye, 1/2 hr later the same nurse that heard me tell the doc comes in and says 'here, the doc wrote you a script for percocets.' Sat bolt upright! NO! ARE YOU PEOPLE NUTS! Just give me my paperwork. Fortunately my tx doctor knows what my priorities are. First think he says everytime I see him. "Well?"
'Still sober today, doc.".... " Excellent! Now what's up?"
Recovery on tx was my biggest fear about starting. One guy in a hep group put it best for me, 'If you work a good program you'll do fine.'
Thanks, may we all heal.
Don

[NYgirl]

boy can I relate to everything you said above

Also...Doctors are very great at addicting patients then cutting them straight OFF and into withdrawl (withdrawal). They don't stop and consider what all their take one every four hours pain pills can DO.

The thing we CAN do for ourselves is to spit it straight out to any doctor we ever go to RIGHT AWAY so it's charted...otherwise...one little slip up and it's BAM right back out there.

And honestly I don't EVER want to be scrambling for money for a bag again in my entire life.  Nothing is worse than withdrawl (withdrawal)........not all the anemia I've ever experienced.  it freaks me out and if I have to be pushy to do doctors...so be it.

[can-do-man]

The thing we "CAN do" for ourselves is to spit it straight out

Hey now what i ever do you? baldy beeny saggy azz.

[NYgirl]

Oh my GOD that was so funny you really DID make me spit I swear..............................I laughed so hard I snarfed out part of a chocolate chip cookie onto my computer screen.

You do like to bust my butt and make me laugh don't you?

But this is just GROSS it's everywhere.... :)  ;-)  ;-P

[friole]

ok - I've got to ask--- what is mnkdrt ?  Now if it's your real initials don't tell, but what does it mean? I know what it would be for me ----- My Nasty Kat Dirtied the Rug Today......

So welcome to the forum.. I am frijole, diagnosed (dx) in May altho I tested positive for the antibodies in 1993, biopsied (bx) in June and started treatment (tx) in July.  Not much I can add about biopsies, besides mine was a laproscopic biopsy done by a surgeon and they put me cold out.  Didn't feel a thing. I suggest reading on the Janis7 sight about biopies - getting them, and understanding them.  It helped me understand the procedure. ...http://janis7hepc.com/biopsy.htm

I am ignorant about what you can safely take when you are a recovering addict, but surely there is something that you can take to relax.  I wish you well, and when you have your results, please post them.

[dancegirl54]

Strator - Thanks for being on this forum - you help me a lot in my recovery

NY girl - I wanted to cry when I read about your work problems, consider yourself hugged and loved

[lionesss]

Hi. Am new on this forum.  Decided to check in as I have had a bx last week (not as bad as I expected, but still a little tender) and am taking a big breath before I go on Tx in 2 weeks.  I have decided to go on antidepressants prophalatically.   But I am not depressed now, so seems at the moment an odd thing to do. Has anyone else gone on antidepressants? Would you recommend it?  I have a few stressors in my life, but generally I handle it.  Just want to keep a handle on it during Tx. Also, what is this about losing sight.  Yeh Gods! My eyesight is **** as it is.  I

[NYgirl]

It is so good to see you and dancegirl back on here.

I am so glad you are alright and it was just your stupid computer!  I've wondered WHERE you were and it's FANTASTIC to see you again...finally!

[GoofyDad]

Hmmm. I dunno about that idea. I've always found the thought of prophylactics somewhat depressing, in and of itself. Oh, maybe I missed your point?

Seriously, I did consider ADs as you are, and chose not too. I'm on week 22 of treatment, and the decision has worked out OK for me. Doc did warn me to stay in front of it and to be very dilligent.

I went to a shrink for a while, mostly for that reason, just to make sure I wasn't headed South emotionally. All seems well. I may go back to the shrink at some point, we'll see.

Good luck in whatever you decide.

[Algernon]

I'm almost to week 9/24.  I've never had a problem with depression but was very afraid of it (I have kids).  So, I tried the prophylactic route.  I learned that the AD side effects weren't worth it for me (although I know the ADs work really well for lots of people).

There are side effects from the treatment drugs and any other drugs you might have to add along the way.  I still think it's reasonable to try the ADs so that you can tell what the AD is doing apart from the other drugs.  Of course, you may not ever need them (I don't feel like I do).

[insty]

does anyone know the real size of a normal liver

[insty]

i,m told 17.something an i don,t know what this means to me

[JodyLynn]

I'm gonna have to be honest, these people that say the biopsy doesnt hurt are very lucky, i had very bad pain while having it done and they even gave me really good drugs lol. But id do it again if i had to. Maybe the doctor that gave me mine at the hospital didnt really know what he was doing hmmmm.

[meki]

Insty - dunno the answer to that - could you post the same question as a NEW POST on the main forum?

Thanks

Meki

[meki]

Jodylynn - sorry to hear that ---- BUT I LOVE YOUR ATTITUDE!

[Frank J. Perrotta]

It seems everyone has a different biopsy experience. My doc said that it would be painless and it wasnt. It happened pretty quickly. Then he said he had to go in again. That was not the news I wanted to hear. It was a bit painful for a few hours after especially laughing, and laughting about it all does usually help...

You say you have read many class action suits against the makers of interferon. I have not been able to find a one and would like to see what is going on in that area. I am one of those who after two years off treatment am getting worse and worse. So any info would be greatly appreciated on class actions.

frank

[Lady Lauri]

FIRST.... Congratulations to all of you who are 'sober' and changing your life's. Be very proud every day. I say this because....
I am 49 (was a young 40's woman till Hep C took over past couple years). FINALLY diagnosed May 07, start tx in Sept. At 15 yrs. old I 'ran away' and before I'd even had sex tried every drug out there. I was still a virgin when I tried heroin! (was keeping my 'morals' !??:) By the grace of God, by 18 I said 'DO NOT WANT THIS LIFE' and never got hooked on anything! (but these nasty cigs). I became very anti drug and know I've helped a few get help, change their lifes (yes, they have to want to) and have literally pd. dealers for dumb young 'kids' to catch them for parents, get to re-hab, etc. My methods are not the standard. (see profile.) It's a terrible world and I feel, stopping 'kids' , new users ASAP is a must, before they get too sucked in.  I have a new lecture for 'kids' tho, "Look at me, anti drug for YEARS and it still came back to haunt me". So .....very happy when I see/hear anyone getting out of that world. Tho I was never hooked, many of my friends, people I loved were. I know it's a dam hard struggle.

NYgirl said,
" I have to admit I have administered MANY other TYPES of poisons in my life...without ANY thought except how to get more of the...and never gave it a second thought.

At least THIS poison is helping to heal my liver and rid me of a disease that can not only destroy my liver but also cause liver cancer and kill me for sure."

So very well said! And another thought I will use on my 1st tx -'these drugs will HELP me'.

On the bx, you'll be fine. Did mine with just a local, did get the after pain in shoulder, etc. but it was tolerable and turned down the demerol. It was so fast I said 'is that it?'
On tx, terrified also-as we all were/are- and after the above -I developed my only phobia-the fear of all drugs, even one's I need to take, simple ones! So tx will be very hard, BUT- living this way or getting worse and letting this disease take me down-NOT! I am type 2b (very fortunate) and not doing treatment would be just stupid (in MY case, all are different) and right now, what's out there is all we have. THO, someone had mentioned new drugs in Phase 3 (can't find the comment anywhere now?) but I am in one trial, Albuferon (Albumin Interferon) /Riba bi-weekly  but won't know wether I do that or the Peb/Riba till my screening. Looks like we'll be starting tx about the same time, we'll share : ) Let's fight this disease!
Anyhow-sorry so long. I have been on this site only a few weeks and it has helped me tremendously reading/ speaking with others that KNOW, not just Dr.'s , nurse's telling you what to expect. These people aren't guessing here! the best us 'newbies', starting tx can do is expect and hope for the best, mild sides and SVR in the end. This site is a God send and glad you found it too.
You'll be fine in the bx, save your worries/stress for bigger things.
Be 'talking' to you,    Lauri

[Lady Lauri]

The depression is a worry and also hate the idea of going on AD's. Curious if going on them before you are depressed is a good idea? I've heard so many stories on them turning a person more depressed, etc. that wondering if treating it while not having it could be- not so good? I guess for me I will play it by 'mood' :) Told all my family "If you see me heading for the basement with a rope- stop me" :) I also see an acupunture/chinese med Dr. (SHE found this!) and her and my Dr. working together so that is great. She will also administer my shots for me as she's only 2 blocks away. I am pretty blessed in a lot of area''s with this : type 2b, timing on this trial (pays for all), very flexible work schedule, family, friends. Hey, maybe I won't get depressed :)

                      Lauri