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Hepatitis c pegasys
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Hepatitis c pegasys

Hello my name is Tyler i am 22 years old I been a heroin addict since 2006, I dropped out of high school due to my sickness, and lost pretty much everything, even my family, in 2010 I got arrested with 4 ounces of heroin and was charged with a a1 felony b felony c felony and a d felony, I was on rikers island jail for 6 months until I pled guilty to a b felony and got released to a drug program called Phoenix house, here I found out I have chronic hepatitis c, I been seeing a doctor in Nassau county and he gave me a bunch of blood test and ultra sounds to see how my liver was doing, he then told me he wanted me on pegasis, I take 2 pills a day ribasphere and a injection of pegasis once a week, okay me not thinking I said okay right away because I was scared, and wanted to get rid of the infection, now that I'm on the medicine, I wanna kill myself especially being in this drug program I've been so depressed, I just celebrated my second year clean on September 21st and that was prolly the best day of my life, now I'm on this medication I feel like my life's ending, I want to leave this drug program and go home but if I do that I'll go to prison, because I am mandated here by queens tasc. My counselor here at Phoenix house said he was going to medically discharge me, but it hasn't happened yet, I don't kno what to do no more, I want to kno if anyone is on pegasis and how they did on the treatment and if its really curable, please someone help.
18 Comments Post a Comment
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It is important that you speak with your Dr. about how you are feeling. The way you feel are side effects from the drugs you are taking. Your doc may be able to adjust the dosage or refer you to a Psychiatrist for anti depressants.
Please ask for help, you have come too far now to jeopardize your health and freedom.
I wish you all the best.
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163305_tn?1333672171
Normally the determination of when to do hep C treatment is based on the amount of liver damage. If your liver is healthy there is no reason for you to be doing this difficult treatment now, at your age and just coming through such a difficult time in your life.
It would have been better to get your life together before tacking this.

I agree with RIvil, you need to see a good competent doctor.
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3230925_tn?1397619565
I concur with rivil,and to repeat what she said , one of the side effects of the meds you're taking is depression,IMO most folks on the treatment suffer from depression from mild up to severe.The best thing to do is talk your doctor about it and get yourself prescribed some anti depressants,This treatment isn't easy for anyone,if your capable of doing it and determined in getting rid of this virus then hang in there and tough it out.If your doctor decides to pull you out,all is not lost regroup and wait for a better day to fight these little villains.

Best wishes

Dannyboi7
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Avatar_f_tn
You don't say what genotype you are. If you are geno 2 or 3 then interferon and ribavirin are the standard of care and the only thing available at this time.  If you are a genotype 1 then you should be treating with triple therapy (Victrelis or Incivek) plus interferon and ribavirin.  For genotype 1, the odds of eradicating the virus are much higher with triple therapy.  As mentioned, if you're having a terrible time on treatment and did not respond early and are a geno 1, you may want to consider stopping treatment now and treating later with triple therapy when your circumstances are more favorable and you are better prepared.  Also, there are new drugs in pipeline that are showing great promise for all genotypes without the use of interferon.  Nothing definite about the release date of those drugs, possibly within the next 2-3 years
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  Hi Tyler.  I wasn't actually mentally ready to begin this Treatment, until I had 13 yrs clean and sober. I chose to focuson my sobriety first.
    Any kindof anti-depressant is going to take 3 weeks to work, if it does work.
    I did the Treatment, and didn't experience any real deprssion, so I
guess everybody reacts differently, both physically and mentally. I think I was definitely a little crazier than usual, during the treatment though.
   At your age, you should be healthy enough to wait for better treatments, although the next one in line, still includes the ribaviran, which also causes depression.
   I didn't choose to treat my Hep C, for 23 yrs, until my liver was at Stage 2. It moved slowly, with me.
   If you do decide to go ahead and continue treatment, I salute that decision also, becuz a recovery House is a great place to do a successful Tx, because of the routine, and the supervision.
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2061362_tn?1353283118
Welcome to the forum Tyler. Wow you have taken on a lot while newly maintaining your sobriety (congratulations on that by the way). Please take a big deep breath and try to relax. I know it's not easy getting a diagnosis such as HCV, and it sounds as though you don't have much of a support system, but it is very important and critical that you try and maintain a positive attitude. You will get alot of support here. I really agree with everyone here. Did you actually have a liver biopsy done? Ultrasounds do not give an indication of how your liver is doing. Also you do not give very much info here such as your genotype and other lab results (blood tests). What was your Dr's reasoning for starting you on treatment. It usually takes years for damage to be done to your liver; I didn't know I had HCV for 37 years and didn't start having issues until a couple years before I was diagnosed this January. There are much kinder non-interferon based treatments in trial that will probably be available in a few years. I don't know how long you've been on treatment, but you may want to consider finding a more competant Dr, have a biopsy done, and consider stopping treatment if all is ok with the biopsy. If finding a new Dr isn't an option for some reason, you have to be your own advocate, have a frank discussion with this Dr and question why a biopsy has not been done, insist on one, and then discuss your treatment status. As others have said, the treatment you are doing is for genotype 2-3, if you have genotype 1, you are not doing the correct treatment. Anyway, deprssion is really a side effect of the drugs you are treating with and you need to discuss this with your Dr ASAP.

Everyone is different on how they react and respond to treatment. I did fairly well with pegasys, had bad sx the first 3-4 weeks, but then had very few sx from it. Most of my side effects came from the protease inhibitor, incivek (I'm genotype 1). Unfortunately, HCV treatment does not cure everyone, there are no guarantees. Good luck and keep us posted on your situation.
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2061362_tn?1353283118
Just a thought, this should probably be posted on the medical side.
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766573_tn?1365170066
I get you feel trapped and like you don't have any options. If you had to plead guilty to a (felony) an offense in order to qualify for the program rather than incarceration than chances are you agreed  to the treatment mandate of the program as well. Quite often the 'mission' of a state mandated drug is to provide every tool possible to get and keep you clean and sober and beyond drug-related crimes and behaviour as opposed to helping you develop the tools to reintegrate into society and get your life back.

Unfortunately your medical history is now somewhat temporarily intertwined with your criminal history rather than solely your addiction as is usually the case. Inability or lack of willingness  to adhere to your treatment could be viewed as noncompliance to the program.

I agree it would have been ideal to have a biopsy and wait to treat your HCV but since that is no longer an option I feel like I should try to encourage you to find a way for this to work rather than regretting past acts you cannot undo.

I am not sure how often you see the actual doctor or if you see another qualified practitioner such as a nurse's aid or technician. Chances are the state may have found a way for Medicaid or some other agency to fund your treatment and who knows. It might be in their best interest for you to treat right now - whether you like it or not and no matter how well you respond.  It hate to be like this but certain people in these jobs hear hard luck stories all the time so your ability to articulate what is happening to you physically is crucial.  

Up until now your world has totally been "the system."  
First of all, I agree with the others that you should simply talk to your doctor and explain all this however ★☆  If (s)he is resistant to your pleas for help than the only other alternative I see is learning how to work the system.★☆

I understand you may not have the time, energy or opportunity to do this right now; not to mention being to eager and overly inquisitive about what is in your files (even the medical ones) is probably not encouraged. You are taking some heavy duty medications to treat a blood borne infectious disease with the potential for serious side effects. It would be unusual to not want to know more and understand what is happening.

If you have extra time to read a few threads here on the forum or even access to a web site that lists known side effects of Pegasys & Ribavirin then you can begin to develop  the vocabulary you need to ask for help in a way that garners respect and attention.

Interferon-induced depression is a known side effect. It can compound existing depression and depending on the severity may require an antidepressant - or a different antidepressant other than one you may be taking (it does not sound as if you are but I just thought I would add that). I am not trying to freak you out or anything but you cannot let these feelings snowball. How c rappy you feel along with everything else going on is enough to overwhelm anyone.

I am not sure when your last psych assessment was or session with someone who has a background in behavioural health but this person could be your best ally if talking to the doctor does not work. If you do not have a regularly designated appointment than I encourage you to make one.

The fatigue is known and horrible. Fatigue does not mean tired. It feels like everything is a chore and a hassle. Even things you never gave a second thought about. If someone does not understand this they might view the behviour as lazy or lacking in ambition. Loss of appetite or nausea to their toll on the body as well. Poor quality sleep, lack of lots of water and poor nutrition can compound fatigue.

We all have access to our lab reports along with the ability to decipher the results and possible "rescue medications" we might need since Ribavirin can cause a type of anaemia. It is called haemolytic anaemia and it is not the kind you take iron pills for. It is the kind where they reduce your dose of Riba or perhaps issue Procrit.

I may be going too fast since we do not know how long you have been on treatment? How long are you supposed to treat. Which shot are you on? Have you had a lab test that indicates whether you are Undetectable or Detectable? What was your starting viral load? Did you happen to have any kind of assessment to determine the stage of fibrosis you have?

The reason I ask is because you should know this. It may be the key to your way out. So far you are a success story at the program with two years clean. In order to progress (and maintain your clean time/sobriety) I encourage you to learn as much as you can so you can communicate what is happening to you physically and mentally in a focused and articulate manner.

___________

I know this is a lot of info but I am just really trying to help you out of panic mode and see that there might be some options available to you if you can view this situation in somewhat of a different light.

Learning more about your treatment and interacting with the medical "staff" in a meaningful way could be a way to garner the attention and respect you need and deserve right now. You know you cannot just leave and go home right now since from the way you describe it this place is essentially your 'get out of jail free card."  Lots of people make it through this treatment even though it is extremely harsh. I know it does not feel this way right now but you can too.
___________
If you do not clear the virus there are less harsh drugs on the horizon that may be available in a few years from now. So in theory you would still have the chance to clear the virus if Heaven forbid you are are unable to do so this time around,


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548668_tn?1394190822
Welcome!  You've been an addict, you've been to jail, you've been through Phoenix House, and you're going through treatment.   You are one clever, strong, brave and courageous 22 year old, and the medication is proving to be one of your greatest trials (same with many of us here).

The two main things you need to put into place to get you through this (if you have no other choice but to go with it) are strategy and love.

Strategy:  You have self-medicated via heroin to get yourself through those years.  Now you must be researcher, doctor and patient to determine what you medication you need to ask for to get through this time.  What symptoms need fixing to assist:  lack of sleep?  anxiety? depression? pain? dry skin? mouth ulcers? digestion problems? ...   Then drill it down - "I can't sleep every night/can't get to sleep some nights/it takes ages to get to sleep".   "I am depressed mornings/evenings/nights/I am depressed because I can't think clearly, speak clearly, function clearly, am continually uncomfortable and can't bear the thought of staying so uncomfortable for months."  "I am uncomfortable because I am tired/my mouth is dry/my stomach is upset".    Drill down to each specific symptom that is causing you to feel awful and write down a list/   Then, take your list to the doctor and let him know that those are the specific reasons that you're not coping with the treatment.   There are many medications that can diminish symptoms if we can be specific.   Research here and read our stories and draw from some of the great advice; use the search function to check on anything you're experiencing.  Your doctor may be able to give you tylenol, sleep medication (with Phoenix administering), antidepressants (short-term while on treatment - it's mandatory in some hospitals), or anti-anxiety meds.  Also helpful is biotene non-alcholic mouthwash, cream for dry skin,  food with the ribaviron and twice as much water as what you usually drink per day (especially on shot day and the day after - you'll notice the difference).     Ask your doctor for copies of your blood test - come back here for advice, and help your doctor manage your treatment.  Many of us have had doctors with limited knowledge which is why we're here, as a group assisting each other - and - assisting our doctors by being well researched (find out your Genotype of HVC,  whether you improved after 4 weeks in getting rid of the virus (which shows an increase of success rates) and whether it's a valid option for you to be able to put off treatment.  

Love:  You need to acknowledge that your body is going through something similar to chemotherapy and that you are a patient.   While you are on treatment, trying to be your 'normal self' will prove frustrating and depressing.   You need to put on the cloake of  a geriatric patient rather than the brave warrior soul that you're so used to wearing and counting on.   Try tylenol - it does wonders that you wouldn't imagine it to.  Try drinking extra water - it really helps you think clearly and keeps your body much more comfortable.  Focus mentally on all the people who have helped you get through your last few years and surround yourself with their energy, knowing that there is more to come - write their names down, love them, thank them and know they're still supporting you on some level and that there are more people waiting to support you on you voyage.   Be a patient and ask for help;  ask if someone will sit with you in the garden; ask if someone will join you for a short walk;  politely ask for help (that one was the biggie I learned from treating).

Try not to be a victim of circumstance when you're on the path of a warrior;  you're on one very special journey and if you can hang on to each day, and get through, you will have so very much to offer others.

And if coming on this board to update us, or vent, or discuss your symptoms, please please do - you'll find that most of us can empathise, and add value.  I spend the whole time on treatment on this site - venting, moaning, seeking - it was all that got me through.   We have a range of people here and don't differentiate in how or when you got the disease - we are all focussed on being in the same boat and helping each other.

Hugs to you!

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548668_tn?1394190822
It IS really curable.... and with copies of your blood tests you will get an idea of how well it's working.  People who have not responded to treatment don't get the nasty symptoms - you may be well on your way to not only being clean, but being free of the HVC also.....  

How many weeks have you been on treatment?
How often do you see the doctor?
How often does he do a blood test on you?
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" People who have not responded to treatment don't get the nasty symptoms".

Not true Kristina538.  There have been many a relapser and non responder who were sick as a dog, both mentally and physically.  Wouldn't want to give Ag3 false hope based on that assumption.
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548668_tn?1394190822
My apologies to you and others who have relapsed or not responded and been through agony in their attempt.

My statement was based only on my own experience (partial responder/relapser) and that of two friends who had minimal response.   But you're absolutely right -  the variables are huge and I misinterpeted a statement made by my specialist during my second tx that 'the good news is if you're getting sx's the medication is doing something' - certainly a little different, sorry..  

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548668_tn?1394190822
Hey Tyler, You didn't say how long you'd been on the treatment for?   If you do believe stopping the treatment is the only way, try to get your Genotype so that you can investigate, further down the track, which treatment to go for.    Best to you!
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Avatar_m_tn
aww sweetie you just repeated my life story!  That heroin just makes a person so foggy.!! I actually knew if i did that shot i most likely woud get it. I was sick , there was only injectables & 15 yrs ago it was just a word!! The fact that i felt fine for so so long tricked me! Then Bam ! a yr ago  there was no denying it!  I have been clean for 21/2 yrs. I had to get clean before i could commit to this. Im happy about that but You aint alone cause this med has turned me back into the mean psycotic i used to be w/on heroin!! I didnt sleep 5 days & i tripped balls! Hallucinations ,everything!! Im 3 days till the enciveks done. I know it works. I know so many success storys! For real!! Dig in ur soul, chant , whatever. U"ll be glad u did!U"ll be ok!!
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Avatar_m_tn
  Im sure that seems like that would just prevent problems before they start. You know making sure everyone is all getting along ,on the same page:) I mean its a very good start but i live with the very loving understanding Brady bunch family!! So eager to help theyre 2 1/2 clean junkie daughter.... And nobody was prepared for my 5 night insomnia made worse from that med!! And the hallusinations that followed!! The depression & violent outbursts!! I didnt hurt anyone , i just bugged! I never dreamed i would get that side affect!! I have been clean for 2 1/2 yrs & did many drus but i had no interest in trippin on acid!!  I probobly need post tramatic stress therapy now , but that parts over! Dont dehydrate!! im still glad i stuck throug it !! !1 It will make ur life yours again::) I wouldnt quit!! gd luck
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Avatar_m_tn
I can't comment on your treatment. Your depression is scary, heard this from a person who done 6 months till cured, I KNOW he was poor nutrition.
Be very careful with anti-depressants. My experience was seritonin poisoning. This is docs EXPERIMENTING with your brain chemistry with NO science based facts. Research this topic, limit your search to ".edu" cuts thru the BS & phyco babble/con.

Start with food & supplements, with blood test PROOF. Try 2-3 ounces of V8 juice, as often as you can stomach, 2 weeks will see some results.

Look real hard at your nutrition (lack of). Start with the basic gov guidelines, in Ontario its now 14 fruits & vegetables per day, every day.  A few ounces of each...I don't know of anyone thats consistant.
Your treatment drugs may over-ride any nutrition , I don't know. Others will, ask the recovered.
I have posted some books on this in my only thread : Dr. Joan Larson was extremely important to my survival 15 years ago.
Feed your brain, there is a mind in there.
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1747881_tn?1358189534
HIGHLIGHTS OF PRESCRIBING INFORMATION
These highlights do not include all the information needed to use
PEGASYS safely and effectively.

----------------------- WARNINGS AND PRECAUTIONS -----------------------

Neuropsychiatric events (5.2)

5.2 Neuropsychiatric
Life-threatening or fatal neuropsychiatric reactions may manifest in all patients receiving therapy with PEGASYS and include suicide, suicidal ideation, homicidal ideation, depression, relapse of drug addiction, and
drug overdose. These reactions may occur in patients with and without previous psychiatric illness. PEGASYS should be used with extreme caution in all patients who report a history of depression.
Neuropsychiatric adverse events observed with alpha interferon treatment include aggressive behavior, psychoses, hallucinations, bipolar disorders, and mania. Physicians should monitor all patients for evidence of
depression and other psychiatric symptoms. Patients should be advised to report any sign or symptom of depression or suicidal ideation to their prescribing physicians.

http://www.gene.com/gene/products/information/pegasys/pdf/pi.pdf
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4165529_tn?1350510331
im 20 and have it aswell was told to get put on medicine i feel horable everyday n now i think if i get the meds ill feel worse. I am sick everyday, feverish fatiuge and ever fing symtom there is, just found out i had it about a year ago, nhavent done anything about it since
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