Deciding on Interferon/ribavirin

[artgal]

How to decide to do interferon/ribavirin? I am having a great deal of ambivalence about beginning this treatment. And a lot of fear. The docs think I should go ahead -- I've probably had Hep C for close to 30 years (I'm 46) from one incident of "we have to try everything once" injecting heroin. I've been diagnosed for 5 years, genotype 2B with a biopsy five years ago grade 1 stage 0.
I have quite a bit of fatigue and have struggled (under control at this time) with clinical depression. The side effects sound so terrible and I'm worried the cure might be worse than the disease.
Any thoughts and suggestions would be much appreciated.

[Docsgold]

It's quite personal to each person whether or not to start tx, and yes it is quite scary when you research the side effects.  You must weight out the risks and benefits.  Benefits: you are a 2 which mean half the tx time of 1's, female, minimal damage, and under 50 years of age AND 2's have a better cure rate.  Risks: you have probably read them by now and if you have had hcv for many years it is not going away.  It is not easy and I have had many side effects, including losing my thyroid, but it is doable.  I have 2 weeks left of my very long 48. There is light at the end of the tunnel.  Very best of luck to you in your decision.

[artgal]

Thank you so much for your comments. I actually am so worried about the thyroid effects but it sounds as though you are dealing with that so that is helpful to know. I just got off the phone with my doctor who thinks I may be able to do a 14 or 16 week course of treatment (this is new but with my geno he seems to think this might be all I need). I told him I was ready to go ahead so he's ordering the meds. Yikes! I tend to be very drug sensitive (I don't even use tylenol) so I hope that does mean these meds will knock me out. I guess I'll just try to have as positive an outlook and frame of mind as possible.
You are on a long course of treatment -- at what point did you notice thyroid problems?
Thank you again.

[artgal]

I meant to say I hope that doesn't mean the meds will knock me out. Hooray for you only having two weeks left!

[gr8faith]

I can totally relate, the decision process is just that... a process.  I was diagnosed in Nov. 03, liver bx in Jan 04, grade 1 stage 1, and am a 3a, female, 43 years old.  I gave it great research, thought, prayer and started 24 wks of tx in Jan 05.  I am at 13/24 now and it really hasn't been much worse than normal (whatever normal is).  Sure, some days are not so good but it is worth it to me to fight this out of me.  I have 3 kids and want to be around for a long time to see my grandkids one day (not too soon though)

I too, made a impulse decision as a 16 year old who just had to try something new.  The past is just the past now, more importantly is my future.

I just found out this week my ALT level has gone from 58 to 26 and my doctor says I am responding!!!  My WBC is down, 2.3 but my platelets are steady at 140 so I might not have to take the procrit quite yet.

Whatever you choose to do, you will learn a lot here and get great support.

Have a blessed day.

[Docsgold]

My thyroid gave out about 3 months into tx.  Actually I felt AWFUL and thought it was due to tx, but after getting on the thyroid meds felt so, so much better.  It is easy to blame everything on the tx meds--don't get me wrong they are toxic, but I was getting a double whammy.  The percentage of those who lose thyroid function are low and some believe those who do are genetically predetermined to have thyroid dysfunction.  It was a risk I knew about starting tx, just like I knew I had a 50/50 chance of getting rid of this virus.  Others have done tx much longer than 48 weeks and I surely commend them.  

Not to make you doubt your physician, but I would research his decision about the short length of your tx (you only want to do this once if you can help it).  Just food for thought.  I am sure other genotype 2's will be along to give their opinion.  If I were a 2 with the "cure" rate of 80% I would go for the full 24 weeks.  Very good luck to you in tx and deciding your course of action.

[artgal]

Wow! A kindred spirit. I too have children (13 yr old boy and 10 year old girl) and I'm actually looking forward to having more energy for them if I get out of this whole thing on top. Your feedback is so helpful. Thank you and I'll be in touch.

[cbee]

I too struggled with this decision for a long time.  I learned I had HCV a year after my 13 year old was born.  I am very holistic and the thought of putting this toxic **** in me made me crazy.  I kept saying no.  Last year I really thought I was getting early Alzheimer's or something.  My memory was really fading.  I had been struggling for years with chronic neck pain (degerative discs), horrible tension headaches, depression and fatigue -  that all just seemed to be getting worse.  After seeing all those specialists it became pretty clear where all this was coming from - the HCV.  I also am a 2, biopsy - stage 1, grade 2, am 46, female, premenapausal and I was basically in good health.  I came to the realization that maybe I had to take a chance.  

I am now on 12/24, PCR showed negative with no viral load at 10 weeks.  I've had a lot of side effects, especially the mental part.  I am also a single working mother of a teenage boy.  I work in a law firm as a secretary to a tough lawyer.  This has not been easy - by far.  After reading some posts here I am grateful for that PCR.  I still have another 12 weeks to go.  Would I do it again?  Probably not - but who knows.  I'm still doing it now and I could have quit at any time.  As bad as the sides are, there are some positives - my headaches are better, neck pain is better and I've been feeling less depressed (most days).  I read somewhere that once this virus clears the sides seem to subside but I'm not sure.  Some days are good and some are just tough.  Getting that negative PCR today was worth it.  Some folks here have had it so rough and I don't know how they keep plugging along - but they do.  You are lucky that you have a lot in your favor if you are going to try the treatment.  As far as the 14 weeks - that was one study and I wouldn't rely on it as there is too little data.  24 weeks is appropriate for a 2 as long as you clear by week 12.  Good luck whatever you decide. If you want to know more about my personal experience since we seem to have a lot in common, please feel free to e-mail me at ***@****

-cbee

[scruffy]

Cbee you just hang in there ok?(12 weeks=1 blink).

Artgal I wish you well in your decision making but it does sound as if you're headed for the battleground. There is a lot to gain and there IS risk. May you be well guided by your maker.

frank

[LvdByGod!]

artgal, love your name...are you an artist, i wonder?

i agree with the previous posters especially rev...liver disease can kill you...i have hypothiroid and i have to take a pill every day...i can deal with that...i also got blurry vision and put some glasses on...hate glasses but hate the thought of dieing of liver disease more...

i also agree with the idea of being carful about going an experimental or less investagated amount of time on your treatment...24 weeks is standard for type b's. you may not want to be his test subject...

if you do trust his advice then at least get an EVR EARLY VIRAL RESPONCE...the below article says you should be a rapid early responder by the 4th week, but it also says there is a slightly higher relaps rate...

you could always get another opinion to help guide you in this very important decsion...is your dr a gastrointerologist or a hepatologist? hepatologists should know a little more...


http://www.hcvadvocate.org/news/newsRev/2004/NewsRev-45.html#2

~New Data Showing Patients With Hepatitis C Genotypes 2 And 3 May Benefit From Shorter Course Of Treatment With PegIntron And Rebetol Combination Therapy

Study Results
..."Results showed that in Group B, of the patients who achieved a "rapid viral response at four weeks", 88 percent went on to achieve an SVR with 12 weeks of therapy as compared to 64 percent of patients in Group B who "did not achieve a rapid viral response" and 76 percent of patients in Group A, both of which received 24 weeks of treatment. In patients treated for 12 weeks, the relapse rate was slightly higher"...

[Petey7]

I would consider your situation like hitting the lottery. You should count your blessings that you are a genotype 2 and start treatment as soon as possible. The success rate is predictably so high for you that there should be no hesitation. Many of us prayed that we would be type 2. As you can surmise, I am type 1A and relapsed. Best of luck with your treatment and hope you have smooth sailing with minimal sides.

[artgal]

I can't believe all the help and support I am already feeling from these comments. I have never done a chat thing (is that what this is?) and didn't know what would come of it but I am feeling great to have people like you all out there. Wow!
Thank you to everyone who has responded. I've learned so much in less than 24 hours. I am a believer in thoughts and energy being able to be sent and come from a lot of places and I feel it all already. Thank you! Thank you!

[scruffy]

Well said.

[rearfang]

I say you should definitely go for it. I am waiting to start tx right now, will likely start in a month or so. I'm scared too, but having weighed all the options, I think I'll go for it. The depression thing is something that (hopefully) your dr can keep on top of. I wish you the best in your decision. Welcome to the forum.
Lauren

[layla]

I finished 18 months of full dose tx last July. I lost my thyroid and ended up with many sx from the tx and still deal with some post tx. Would I do it again? In a heartbeat.  I am 46 and had little to no liver damage and had HCV for 30 years, yes drugs as a teen. My reading have made me beleive the progression is faster after you hit 50 and harder to cure as you age. It also says it is harder to get cured if your liver damage is more severe. The 7 previous years to tx I started having joint pain and was getting tired more often. I had been  extremely active and was finding running and other exercise getting harder which I chalked up to age. After two months on tx the joint pain stopped and I now feel quite good but still recovering from tx. I also think going through tx while feeling fairly goos and being in good shape helped tremendously. The thing that helped me most to get trhough tx was exercise even if it was very light such as walking or simple floor exercises. It is all a personal decision and I wish you whe best in making yours. I also say go for the 24 if possible but that is just my opinion. I might have been SVR after 12 months but I don't regret doing 18 months. I just couldn't do it over. LL

[cuteus]

yet one more anecdote for you, mine.
I also was hoping I had genotype two, we all do, once we learn there is a virus within, the next best thing was to have an easier to cure genotype.
NOT! I was a 1a, did not clear the virus by week 12 so I insisted on 72 wks. There are thyroid problems in my family, but I did not develop any in my 72 wks on Treatment(tx)and I am now 4 months post tx, and hopefully cured.  You will feel like you want to stay home most days while on the meds, but you will also get ticked that it is not so bad as to justify wasting a sick day.
feeling off while having hcv is going to continue. the sides from tx will go away in most people, once you discontinue the meds.

[artgal]

Thank you for writing. I think it has actually been my running experiences which made me really begin to consider the meds. I have exercised regularly since my late teens, mostly running. In the last couple of months I have found I have much less stamina and can't do my four miles without stopping and walking intermittently. I run with my cairn terrier and use her stops to pee as a chance to rest! It seemed to hit me recently that this lack of stamina can't just be age -- I'm really pretty healthy, a vegetarian, get good sleep, etc.. so I should be able to run without feeling so fatigued. I also find some days it is so hard to get motivated (because of a lack of energy) to work on projects. Now I am pretty certain it must be the Hep C. Were you able to do much running at all when on the meds? I am concerned about not being able to exercise because I know exercise has helped with my depression.
Thanks again for your knowledge and feedback.

[Imagine]

Everybody has individual circumstances, beliefs, symptoms, and reactions to tx. In other words there are no "blanket rules". I have not started treatment yet, will be doing so in a couple of weeks. I'm geno1 stage 3/4. I was diagnosed four years ago, bx four years ago. My delay has been clinical depression (the dr's wanted a green light from my counciler) and my ability to pay for treatment. My treatment will last 72 wks if I respond in wk 12. ArtGal, I wish I would have been able to start four years ago! My pre-tx symptoms gradually worsened over the four years where I am really having to summon up the power to fight this dragon. I love art and design and use to do so through the computer applications I used to be able to do. I'm eager to get the most out of life as I can which is why I'm anxious (sounds crazy, I know) to start treatment. Take care of yourself and congrats on your decision!

[cuteus]

funny how drs don't want to tx due to depression, but hcv infection itself can lead to depression or worsened it.
as long as the virus was in my blood I had a hard time enjoying life, now, life challenges are easier to handle, go figure. Maybe your depression will lift once the virus is gone?

[Imagine]

Kind of a catch 22! The brain and body are so much one in the same that it only makes sense to me that when the body feels good the brain can concentrate on other "things" . I am trying to do as much exercise as possible with my body to create endorhins that both body and mind needs.

[Califia]

Hey, that's wonderful to hear.   Don't tell me you're becoming optimistic  in your old age?  But keep that edge just in case...

[Laika]

I am a geno 2b female 58 yrs old stage 2 grade 3.  I was diagnosed in 2000.  I found this website late last year and these good people got me out of my fear paralysis and down the road to treatment.  I am starting my 7th week of the 24 wks recommended for our genotype.  (I agree--do all 24 weeks...don't take a chance.)  I am very health conscious too, active, etc.  Also prone to depression and have thyroid problems all over my family (both sisters, one daughter, one niece so far).  SO.  The first choice I made was the pegasys/copegus instead of the other stuff.  It is generally believed that the side effects are supposed to be easier on you.  The first dr I had wouldn't agree to give me what I wanted, and was clearly not patient-oriented, so I left him behind and sought out a new dr. who is very nice about working with me.  The TSH test for thyroid function is a cheap test, and so the dr is willing to monitor often.  With my family history, I have to figure I will lose my thyroid...what I don't want to do is go through a lot of unnecessary depression, etc. from that on top of the side effects from the interferon & ribaviron.  

My doc said if you have ever had depression, you can count on having it while you're on treatment.  He gave me a script for Lexapro, which I filled and had on the shelf "in case".  (A lot of docs say just go on and start taking it before you start treatment.)  I started taking it about week 5, I think.  I became very speedy from the interferon, which felt good until I realized I was out of control... and about this time also became very anxious... and then fell into a funk. The Lexapro dose was too strong; I'm still trying to work out what might be an appropriate dose for me.  There are several people on this forum who were on AD's before they started treatment, as I recall.  Somehow they got through it.

When I feel like a baby, I just think about all the geno 1's who have to go so much longer and have lower odds of success.  We 2's don't really have much to complain about, then.  It helps you to be brave when you see others showing courage.  Check in at this forum often.

Good luck to you,
Laika

[lackalustre]

wow this is one long thread.  good luck  i think u will do well.  i did the tx. in '03 and cleared.  i was 2b ,  had it 30+ years.   diagnosed in '98.  im 52 years old.    i used every natural method there was.  finally took the plunge and did pegasys/copegus.  
   i have heard they are doing some research trials on treating 2b's for only 14 weeks with successs.  sure wish i could have quit at 14 wk.s     my hats off to the people who do it 48 or longer. wow.
  your doing well to work at a demanding job.    this can do a mental thing to us.  both the hcv and the treatment.  
   i feel a lot better and have my life back to a good degree.  except for menopause.

[layla]

Yes I did run on tx. The first few months on tx I did not have any sx's at all. It was great but it didn't last. I often wonder how I would have faired if I did not lose my thyroid. I was just like you. I was thinking it was age but I have friends in the ourdoor industry older than me doing extreme sports. I just couldn't put my finger on it. Now I am sure it was the HCV. I was only dx 6 months before I started tx. Running was hard so I just got where I would run a few munites then walk a few then run a few and so on. I would do this for 45 minutes. After a long time on tx I was down to barely running two minutes then walking for 2 etc for perhaps 20 minutes and there were days I just did not do anything BUT I always forced my self to never go more than 3 days without some exercise. It was rough but it did help and like you it helped me mentally too. I didn't take any AD's and rarely anything else. I did use a sleep aid at times and I got headaches but never really found anything that worked. Now I beleive that was from my thyroid. If you want to chat about exercising while your on tx feel free to email me. ***@****

[carolhab]

Hi Artgal - I am a 1A - probably for 20 years or so, progressing slowly.. stage 1 fibrosis creeping into stage 2.  I also had the choice of waiting vs tx, and I chose tx mostly because I had an opportunity to start a clinical trial, but also because I wanted to confront this thing physically and emotionally.. This virus takes its toll in many ways right? Just knowing you have it changes your life forever... I am glad I started tx not only for my physical symptoms, but also to finally come out of denial and confront the little critters... It has been somewhat liberating and has changed my life in some ways for the better.  There's nothing like a life-threatening disease to make you sit up and pay attention to your life!!!!  I also was waiting for the 'right' time in my life, but realize there probably is no 'right' time, just do it, and you will figure out how to work it out... just my 2 cents.. oh and this forum has been the absolute best source of info and support... when I mention riba rage, anxiety, listlessness, and all the other sides that come with this, many health care professionals say - huh???
best of luck to you!!!!
sammy

[Estwing]

What is the cost of the Interferon and Ribavirin therapy if I have to pay out of my pocket?

Gary

[artgal]

My doctor told me the cost of the medication is $2,500 a month.

[Laika]

I loved your post...how true.

Laika

[cuteus]

I saw 4,000 to 5,000 $ on my 3 month refill of pegasys & copegus. depends on where you live and shop. see if you qualify for the pegassist program or a clinical trial.

[chellski]

I was approved for the pegassist program in one week.  I started my treatment yesterday, but its funny - i did not feel
there was a decision to be made.  I have a disease (type 1) and need to take this medicine to get rid of it. My initial diagnosis was 1 month ago, and here I am beginning a new chapter of my life.  This board was recommended to me by a friend who just finished tx and is "cured"?  I will be here everyday, if not commenting, just reading. It has my mind racing right now, but I do not feel alone.
peace