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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
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
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
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
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
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
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
Insty - dunno the answer to that - could you post the same question as a NEW POST on the main forum?
Thanks
Meki
Thanks
Meki
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.
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).
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).
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.
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.
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
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
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
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
NY girl - I wanted to cry when I read about your work problems, consider yourself hugged and loved
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.
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.
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
You do like to bust my butt and make me laugh don't you?
But this is just GROSS it's everywhere.... :) ;-) ;-P
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!
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!
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
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
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.
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.
The thing we "CAN do" for ourselves is to spit it straight out
Hey now what i ever do you? baldy beeny saggy azz.
Hey now what i ever do you? baldy beeny saggy azz.
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
'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
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. 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........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.
Also...Doctors are very great at addicting patients then cutting them straight OFF and into withdrawl. 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........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.
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!
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!
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.
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.
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.
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