Ready to start treatment

[Sujo]

It's been a long time since I've been to this site and even longer since I've posted.  There are so many NEW names here. Hello to all.  I am FINALLY ready to proceed with treatment.  I've had Hep C since 1983, found out about it in 1992.  At that time my doctor told me to do nothing...said, treatment is worse then the disease. At that time my liver functions were normal.  In 2000 I had a biopsy which showed type 2b, minimal to none as far as damage. At that time, I decided to wait since my youngest son was still fairly needy of Mom.  About 6-9 months ago, I came here and definitely learned allot about treatments etc. and I thank you very much for that.  It's certainly helps to be more informed going into the doctor.  Anyway, my appointment is for Tuesday, Dec 9th. My doctor in his letter indicated that he usually does the peg-intron and ribo.  Now if I remember correctly, this is NOT the same as pegasys and ribo right? (I know I didn't spell that correctly) Is it still true that the pegasys(sp?) has less sides?  When I wrote to my doc to set up the appt, I mentioned that I wanted that, but when he wrote me back he just said that "his usual treatment is Peg intron etc. " Am I still correct in my thinking that Pegasys has less sides?  Soon I will be joining the ranks of treating the dragon.  I'm glad that I'm finally going thru with it but I'm also very scared.  I hope to get to know all of the new people here.
Sue

[Raynman]

Thanks Ambush,
Your input really helps. I suppose I will have to do whatever it takes to get the money. I still wonder if anyone out there goes to the Dr.'s office for their shots. And does that save money?
Also what do other Insurance plans pay like? Kaiser, Blue Cross
PPO versus HMO ? Etc. My bro. is HIV Pos. and works for Orange County in So. Cal.  His co=pays are around $5.00 to $10.00 dollars for most his Meds. I am really looking for what other
Hep C Patients are experiencing. Keep the posts coming!!
Best Regards,
Raynman

[Ambush]

Hello and welcome!  My Riba pills cost $650 for 120 pills.  Won't take long to eat up that deductible.  The cost is staggering.  Lucky for us these costs reflect alot of research being done.....hurts the pocket, but will save many lives.  Hopefully the treatment will be successful and the best $5,000 (48 weeks?) you ever spent.
Good Luck to you!
ambush :)

[Raynman]

What about the financial side of this? I know we need to put our health as priority #1 But the reality in my situation ( I know there are worst scenarios than mine....) is this:
My insurance covers 70% of "self injected" meds which means I pay
$390.00 plust a $150.00 deductible. ( $1300.00 x 30% = $390.00 )
After the $150.00 deductible I pay the $390.00 plus $20.00 co-pay. This is for four shots of Pegasys I haven't researched the Ribavirin yet. but it's a pill and after the $150.00 deductible is met it's probably only $20.00 co-pay. This is ALOT of money that I do not have as a father of three living in California Bay area. What can I do? Can the Dr. give injections and go through the "self-injected" drugs loophole? What are you folks paying?
I am not seeing much info on the $$$ aspect of the treatment any input will help. ME: Hep C stage 2 level 2 Supposed to start treatment in Jan. 04'  Thanks!

[berlynn]

MK, Boy this has been quite a battle for you. I'm glad to hear that you plan to keep trying. Your experiences have definately been helpful to all here.You are on the forefront of this battle, your courage in trying new drugs and tx options is a benefit to all Heppers. OH... and I love your site. Take care. berlynn

[MKAndrew]

I was one of the first people in the US to use Pegasys as a commercial consumer.  Nobody knew anything about the drug in real life, and my doctor made me come in for bloodwork once a week for the first month because he's a Peg-Intron/Infergen guy.

Not only did I find Pegasys much more tolerable than Intron-A, I actually got a profound response on Pegasys, but it came late into treatment, which would have meant longer treatment.  Since I was also paying for Zadaxin out of pocket, I couldn't afford longer treatment.

So, my doctor and I are developing a new strategy to try and clear me fast this time.  I'll be doing Infergen induction (2 weeks to 1 month) followed by Pegasys combo + Zadaxin.

Although my doctor and I are still discussing my treatment plan, we are considering the addition of Actimmune (gamma interferon) during the entire course of therapy.  The point is to try and go beyond viral clearance and heal some liver injury.  We'll see how it goes.  As usual, you can keep track of my progress at the following URL:

http://www.mkandrew.com/hope.htm

[Indiana]

I have seen only a couple of folks doing the Infergen around here. All were relapsers. To my knowledge, none succedded at getting to Svr. I have read all the current stats on that stuff for nonresponders and relapsers. I wasn't exactly impressed. Still, it does give those with no hope who MUST keep trying something else to try. The stats say some folks do actually succeed. The fact is that there just isn't much of anything out there that nonresponders and relapsers can do that offers any decent odds of clearing.
I'd say that it depende on a couple of things. What condition are you in? Are you at or near Chirrosis levels yet? Then I wonder if you didn't improve that condition while on your last tx? 30-35% of folks show some histological improvement after doing 48 weeks of the current tx. You could have accomplished at least a 1 stage/grade improvement,or more, just by going through your tx. You would need a current biopsy to confirm that. That would give you some breathing room.
Maint dosing may or may not work. There will be no real way to tell while you are doing it except to guess based on your blood counts.
They are wanting to test you closely to see where you're at after 48 weeks of interferon and Riba. The toxic effects of these drugs should not be underestimated. They can and do cause some permanent damage in some vital areas for some people. Heart and other organ damage can ocurr as well as ear,eye,and mental health problems. we are trying to kill the virus but don't want to kill the patient in the process. Those tests should tell them how well your body tolerated your last tx.
Infergen would give you a last shot at killing the Dragon. Just realize that the odds aren't good.
Personally, I would lean more towards the maint. dosing with suppliments and wait for the next round of "wonder drugs" to come out. Probably 3-5 years. But I'm not the one who has to take the chances. You are faced with a tough set of choices. We are all here to support you whatever you decide..........

[new-sojourn]

I was a 2b. SVR 14mo after 6mo of peg-riba.  Infected by childbirth transfusion in 1979.  Now, I cl@3wks, finished 24wks in 10-2002.

Before tx, I couldn't hold a pen or open a door and every joint and bone ached.  I started SAM-e and a liquid joint supplement and vit E, C and B's jumped up.  Plus flax seed caplets.

I think they all worked-tx and supplements-b/I now have complete mobility.  I even took up light weight lifting.

You might have a very doable time on tx and also see many other things cl up.  My QOL is so high now, that the small amt of time tx was a bother was more than worth it.

[GI.PA]

The head to head trial planned in the near future to compare Peg Intron/Rib to Pegasys/Rib will shead a lot of light on this...until then we have case reports of one being better tolerated or vise versa but no hard data to make this decision on.

Just like one patient feels better on "Motrin" than "Advil", but this is clearly not supported by any data, case by case patient differences will arrise.    We, as practicioners, cannot make day to day patient decision on these differences.  We turn to the larger trials to look for clear statistical significance.  That data in a "head to head" format simply isnt yet available...but hold on kiddos...that trial is getting ready to start.

Here is the press release:
http://www.hivandhepatitis.com/hep_c/news/092403a.html
Schering is funding the trial is is paying Roche retail for the drug...millions of dollars.  Do you think Schering knows something Roche doesnt?

GI.PA

[mikesimon]

I disagree with GI.PA about the sides. I was on Pegintron for the better part of 2 years, albeit at a reduced dose due to my special circumstances. I was miserable throughout my treatment. I stopped Pegintron in late November of 2002 and started Pegasys in January of 2003 at standard dose and 1000 mg. of ribavirin whereas I was previously taking 800 mg. with the Pegintron. The difference was quite significant. I was not anymore "prepared" for the tx and to the contrary was very convinced I was in for a very long and terrible treatment. I was pleasantly surprised at how different I felt on the Pegasys. Although my blood chemistry was similarly affected with hemolytic anemia the other sides were much much easier to tolerate. I am a transplant recipient and at my center the doctors and coordinators have all agreed that the patients have a much easier time with Pegaysy and many of these are treatment naive so they come with no bias or "preparation" for treatment. I just don't believe that for everyone there is no difference in sides. I know too many people who agree with me and the only ones who don't are treating physicians and practioners who have never taken these drugs. Mike

[MajNeni]

Dear Tess Marie,
I've had lots of anemia on tx, so I was given a treadmill stress test a couple of months ago.  Non-invasive, and very interesting.  I had an initial ultrasound by a tech; I could you see my heart beating, valves and all, on the monitor.  Everything was recorded, and some images copied.  Very inspiring, and hopefully you, too will get great results.
After the ultrasound, the cardiologist came in.  I went on a treadmill with all the ekg wires hooked up.  I trotted for a few minutes, then the doc checked my pulse (3? 5 minutes?) while I was still trotting, and took an ekg.  As long as I was ok, the treadmill then kicked up a bit - steeper and faster.  This was repeated until I was at your limit.  The doc let me get dressed and told me a quick, unofficial interpretation, prior to his official writeup.
No pain, doc right there, etc.  Good stuff to know about and check out before doing other heavy duty treatments.  In a family with lots of heart trouble (just lost another cousin last week), I found this test very reassuring.
Maj Neni

[Sujo]

Thank  you all for your comments.
When I saw this doctor a few years ago, he was participating in a study with peg-intron, dose based on weight vs. std dose.  I don't know if that is why he still prescribed that as standard treatment.  I will definitely have a heart to heart with him regarding the two different meds.
I'm really having a hard time wanting to start this treatment.  One hand, since I do have 2b, my chances of clearing are pretty good...so why not do it and get it over with!  But on the other hand, I'm so busy with my kids...running them here and there, etc Can I do this and feel like **** too?  Plus I'm a chronic pain person. Have been in pain since I was 16 years old.  I'm 44 now. They (the docs) say that persons with pain/RA,other joint disorders have an INCREASE in pain during treatment.  To tell you the truth, I don't think I can handle more pain.  I barely can walk now and that's with a cane. My mind is still young but my body feels like it's about 90 years old!!  Is it going to be worth it??
Well, thanks for letting me vent.  Hope to get to know you all better soon.........
Sue

[Tess Marie]

I have read all your posts regarding treatment & I am wondering if anyone has been on infergen? I saw a new Gastro yesterday who specializes in Hep C & leans toward either a maintainence program (1/3 dose)Peg-Intron indefinitely or Infergen/Ribavarin. He prescribes 3 mths. of infergen with close monitoring. If it does not appear to be working then discontinues. He also wanted additional testing, before any treatment.The lab work is something that was never done previously & includes: Anti-Mitochondrial, Ab; Alpha -1-Antiitrypsin Antibody; Ceruloplasmmin; ANA? He also would like for me to go to a cardiologist for a Treadmill test. Has anyone else had these tests? I am a 1b, female, 60 yrs. old, experienced 48 wks. of Peg-Intron/Ribavarin & considered a relapser. I am now trying to make the decision as to another treatment plan?
I hope everyone currently on & off treatment had a good week-end and I look forward to all answers.

[Indiana]

I too am pretty well convinced that Pegasys has less severe sides. I did 50 weeks of the Peg/Intron myself. Pegasys wasn't approved when I did my tx. Based on all the folks on tx that I talked to I always considered myself middle of the road on the sides. That stuff hit me pretty hard. especially in the beginning. It leveled out after about 8-10 weeks. It flattened me for almost a week in the beginning. Then we all were just on the look-out for "The Truck". that would occasionally flatten us. That was a major topic for all of us. I hear no such complaints from the Pegasys users. They moan & groan but they don't seem to get flattened.
I seldom told my doc about the sides much cuz I knew there was little he could do about them and I was also afraid that he might reduce my doese. I don't think the docs and PA's are told everything by their patients for similar reasons.
As a type 2 the effectiveness is the same for both meds. If you get a choice....choose the Pegasys.
Just my opinion................

[GI.PA]

There is no "head to head" data to look at side effects between the two drugs.  There is no "head to head" data to look at differences in treatment efficacy and the only slight difference may be in genotypes 1, but the data is unimpressive.

Each doctor has one or the other that they are more comfortable with and if I was a patient I would want my doctor to have a comfort level with the treatment.  The data that Peg Intron and Pegasys submitted to the FDA for the treatment of genotype 2's shows no advantage to either product.

I use both products extensively and have yet to see any difference in sides.

I caution the interpretation from patients that say "I was tried on Peg Intron and it was horrible, I stopped and then was placed on Pegasys and it was so much more tolerable".  The second time around you are always mentally much more prepared for the sides and anything less than horible is thought to be an advantage.  If Pegasys came out first, I think you would hear the opposite (I was started on Pegasys and it was horrible, I was then place on Peg Intron....yada yada).  The data is hard to compare as there lacks any head to head trials and the data to the FDA is like comparing apple and oranges in so many ways.

My suggestion is to have a frank conversation with your doctor on what his preference is and why. Some have no preference others have clear clinical experiences (which may not be backed up by data) that steers them.   But unless you can come up with a good reason to go against his comfort level, you might hit a wall.  


GI.PA

[layla]

My previous doc wanted to give me pegintron because he was in some way involved with a study and that's all he recommended. I have a new doc who said either is fine. Actually he is also involved in a pegintron study but told me this first thing. Most of his patients were taking pegintron because paticipating would get your cost of copay covered. I chose pegasys and I'm very happy about it. I've often read about those who have done both who say pagasys is easier. I even waited for it to come on the market. To be fair that is only my personal opinion. My friend was a 1b 63 yrs old and cleared on pegintron with low sides. Just my choice. LL

[doll face]

I have been on both and from my own experience the Pegasys has definatly been easier on me than the pegintron, but every case is unique. I would ask your doctor why he is so reluctant to give you pegasys. He might not be as familiar with it as with the pegintron. Ask. Good Luck, Kim

[TESSTUBE]

Just want to confirm that I read your thread correctly - you have a genotype 2b?  That will realy work in your favor.  My own doc took a wait and see approach with me too and put me on Pegasys early this year for 24 weeks with good success and minimal sides.  I would really try to find out why your doctor is reluctant to try Pegasys.  My own doc is with a top hospital here in NYC and switched over to Pegasys almost as soon as it became available.  You've come to the right place... you'll get a lot of good information from a lot of people on this sight and I wish you good luck.

[britgirl]

Most people think Pegasys has fewer side effects. Some have tried both and say that. From my observation, in real life and on this forum, I would say that too.