Peg-intron Over Pegasys

[Tony-z]

I will be starting my 3rd round of TX in June. I wanted to try Pegasys, but the Dr who runs the program at Kaizer in the portland area, has said that pegasys is used in people under 75Kg or about 165Lbs and Peg-Intron is more effective in people over 75Kg or 165Lbs.
Have any of you been told this? I have searched all over the internet and cannot find anything to backup his thinking.
Any help would be greatly appreciated.
Over the last 3 months in my preperation for TX I have lost 25Lb, I am down to 172 and hope to be at the 165Lb area by the time I start TX, so I can get Pegasys.

                  Thanks,

                    TonyZ

[gonagetbetr]

Well I certanly understand the texaas weather:)
At least no big hail this year. Calling doc today to discuss max dose as well as meeting with specialist. I really do want to tx but was more afraid of being denied tx than actually treating.
I would hate for some other doc to tell me that due to my condition they want to wait 6 months or something. the anticipation of waiting would drive me nuts. I want to be in control I know we cannot control the virus or the damage but we  can control the steps that we take to erradicate or at least try.
GL to  you and hope to hear from you again soon.
Dottie

[moonbaby]

For what its worth, I started treatment with Pegasys 9 1/2 months ago. I am (was) genotype 1a and was undetectable after 4 weeks. I weighed around 250 when I started treatment. The side effects are unpredictable, but like they say about the weather here in Texas...."if you don't like it, just hang around and hour or so and it will change." I was literally scared shitless at the prospect of treatment, but even more afraid of the prospect of nontreatment. I can honestly say that it hasn't been as bad as I imagined. I am not an expert on this subject, but there are many knowledgeable members of this forum. I just felt the need to share this with you after reading your posts. Bright Blessings!

[lost and confussed]

Good morning,
Thanks for taalking to me. as I read here it seems as though everyone knows about everything. It is so comforting to know that others have the same overwhelming feelings that I am experiencing. I know that many have been going through this for years and that in itself has benifited me by the ability to share in the knowledgr that you all have.
I will call the GI in the am.
I also found a website
http://www.focusonhepc.com/hvirus.html
this is more of just a basics site that I read that explained alot of what the testing and virus are about
A lot of the info seems to be a few years old but the laymans terms were helpful. I though that it may be a good site for newbies like myself.
If I am wrong please tell others not to go there but alot of the newer studies read greek to me sometimes I just have to go to the conclusions
have a great week ahead and again thanks for listening
Dottie

[TnHepGuy_]

It's real good to hear that you have gathered up info and questions to present to your GI. There is no need to fear 'angering' him. With doctors, it shouldn't ever be a case of 'us-against-them'. They fully understand about second opinions. And any doc worth his salt will support you in that decision.

When you bring up the subject of interferon dosage amount, ask him why he would put you an a half dose vs. a full amount. He has his reasons - let him explain them - otherwise you'll never know and can only speculate. Standard protocol calls for putting you on full dose interferon and full dose (weight-based) amount of ribavirin. Ask what ribavirin amount you would be put on.

Also very important is to ask if they would intervene with Neupogen (for low white counts) and Procrit (for low red counts), should it become neccesary. Assuming they do, you'll need to call up your pharmacy to find out the availability of these two drugs (they generally are not off-the-shelf items) and call your insurance company to find out how much of the cost of them they would cover - and if you would need pre-approval.

As you've stated, you've only been diagnosed a very short time ago - and all of this is overwhelming. I was diagnosed in 1992 and still find tx and decsion making to be extremely demanding at times. We all feel inadequate and incompetent in our decisions, in large part because we are basing these very important decisions upon very limited knowledge - both on our parts as well as the limited amount of knowledge that the medical field (and our own doctors) have regarding all things Hep C. You could increase that knowledge by going to see a hepatologist - who may have a whole different perspective on the state of your condition, possible diagnostic tools and avenues of treatment.

While it is very important for you to begin treatment soon, even more important is that you begin the most applicable treatment - given your current condition. And a specialist's perspective could prove to be different than your GI's recommendation of 1/2 dose. If you are considering getting a second opinion, call tomorrow (Monday) to set up an appointment as soon as is possible (sometimes it can take a while to see a specialist). Or if it might help you get in sooner, have your GI call over and explain your current circumstances.


re: Vioxx. The dosage that they used in the pilot study above was 12.5 mg. - which is considered a lower-dosage amount. But, always discuss it with your doctor(s) to see if they believe you might be a candidate to take it.


TnHepGuy

[lost and confussed]

thank you for taking the time to offer me some of your wisdom.
And thank you all for your help
I guess that I just think that if he is not trying to kill the virus shouldn't that be discussed with me.
I really want to try to kill this virus not just delay it.
I have taken many notes to take with me to my next visit but i fear that they may get angry with me if after telling them that i wanted to start tx that I would show up to say hold that thought I want the name of the doctor that you sugested earlier.

Then again as I type this I think he should understand. this is all new to me.
If I was to tell him that I want to start on full dose and he agrees would that be a better option?
I know this is your opinion and I have to make up my own mind but your opinion is very valuable to me.
He had told me originally that he wanted to kill the virus to stop the damage that is occuring to my liver. I guess that is why I believed that he was on the same train of thought that I was.
I was only diagnosed a month ago and by no means feel as though I am qualified to make alot of the choices that are slapping me in the face regularly. It seems that some people wait months before they can get their first appt.
I never felt stupid but I definatly am feeling very incompitant when it comes to making these decisions. I read what is posted here and what I find on the net but sometimes all this information is overwhelming and I must admit confussing. I don't know why I manage a very high stress office and have many important decisions to make every day, but I feel like a lost and scared child.
I know that being a geno 1 doesn't give me the best chance to kill the virus but I do know that I want to give it hell and if I can't handle the sx then I gave it my best shot and can maybe try again later.
I will call about the vioxx, arent you or anyone else worried about the possibility of addl liver damagefrom the vioxxI havent read the link yet but will now just wanted to respond to you first.
thanks for listening

[TnHepGuy_]

I'm not sure how your doc has reached the conclusion that you are stage 4/cirrhosis - but assuming he is correct, I would consider his suggestion that you go see a more specialized doctor to be an important one. If your condition is that advanced - and you're looking at the potential of transplant possibility - you should be seen by a hepatologist/specialist.

Vioxx - the main concern I have read regarding Vioxx is if the patient has a pre-existing heart condition. You should at least discuss the possibility of trying Vioxx with your doctor(s) and see if they think you might be a candidate to take it to try and help stabilize or raise your platelets. (here is the direct link - print this off and take it with you: <a href="http://www.natap.org/2003/AASLD/day7_1.htm">Rofecoxib (Vioxx) Prevents Reduction in Platelets During Pegasys Therapy for HCV: short term pilot study</a>. Anecdotally, I've heard that Vioxx can take a little time to stabilize/raise your platelets. If you are a candidate to use it, it might pay to hold off on starting tx for a few weeks to give your platelets a chance to rise.

Biopsy - there are non-invasive ways to do biopsies available now (though they aren't as accurate as a traditional one - they could give you a much better picture of the current state of your liver versus relying purely on blood work and symptoms). Here is one example called <a href="http://www.prometheuslabs.com/212j.asp?nav=products">Fibrospect</a>. I would push real hard for a non-invasive bx - the more information you and your doc have on your liver, the better.

You need to lose the idea of not asking questions because he is 'the professional'. You and your knowledge are the most important factors in your health - any good doctor will add to those. To increase your knowledge and understanding of your condition, it's imperative that you ask any and all questions that you have regarding your health and your care. Your condition demands that get up to speed as much as you can - both to understand what your doctors tell you - as well as to understand if you are receiving correct care.

Of course you need to know why he would decide to put you on a lower interferon dose. Is he basing that solely upon your low platelet numbers? Right off the bat, being on a lower dose means the odds of SVR are reduced dramatically from at the 50% geno 1's have going into tx. Is it possible he wants it lower as a maintenance dosage only? (i.e. - to try and halt/reverse progression as opposed to acheiving SVR). The goal of achieving SVR is to stop the damage to the liver that occurs via having an active, chronic viral infection.

If I were in your shoes right now, first thing I would do is get a recommendation to a hepatologist in your area - and go see this person for a second opinion before beginning the tx regime your current doc has you starting. You GI may have 30-40 Hep C patients - but a specialist should have much more knowledge and experience treating patients with more advanced liver concerns.


May God's blessings and mercy be upon you.


TnHepGuy

[cuteus]

GIs do have the same qualifications as hepatologists, same courses and degrees granted, so he does have the same as the  best hcv drs. The key is; hepatologists do further training and residency to acquire knowledge specific to the liver only.  hcv experts have further trained and gained experience in dealing with the liver as it pertains to the hcv presence.   so, unless your GI has gone for further training and qualifications, he does not have all the qualifications of the best hcv drs.
even the hcv experts are not all qualified and knowledgeable.  30 to 40 hcv patients is not a big caseload.  Your case has many special limitations that might require a little more than this GI. Listen to him and go for a second opinion.  I started with a regular GI and went on to a hepatologist.  If you have options,  use them.  YOu deserve the best, don't you? are you taking his word for it or should YOU decide if he is the best?

[lost and confussed]

wow looked up vioxx and it said that it can cause serious liver damage and kidney damage etc.....
help me understand what it did for you

[lost and confussed]

I can not acces this link it is a page can not be displayed
but I will do a search for vioxx
did it increase your platelets?

[cheriums]

Someone else posted this info, and I've been grateful (sorry I don't remember the poster's handle), as my platelets were hard hit from the beginning, but stabilized for some time on Vioxx.  Yes, Vioxx.  Check out this study:  http://www.natap.org/2003/AASLD/day7_htm.

[cuteus]

like Indiana said, most studies show a slight advantage by pegasys for geno 1,
Dr. Cecil's stats of his own patients also show this, and the recent link posted by tnguy states the same.
The  only one I have seen that did not make that claim is the study funded by their competitor.  ask your dr to tell you what study he is basing that info on.

[skiff186]

As far as my own reading and research, SVR rates seem to be very close to equal for both types of combo therapy ( Peg-Intron/Riba or Pegasys/Copeg ).  I don't know why this is but for Pegasys, the protocol dictates 1000 to 1200 mg/day for type 1's and 800 mg/day for type 2/3's.

I went negative at around week 6 on Pegasys + 800mg/day Ribavirin. I weigh 190 lbs and am type 3a.  Still negative at week 24.

For me the Pegasys is much easier to tolerate than the Peg-Intron that I took in 2000.

[snook_man]

Whoaa!! I am going to take my first shot of peg-intron tonight, and doctor told me that the % of svr are higher with this over pegysus..
Also, he is only giving me 800mg of ribivirin.. I am 172lbs..No body fat, except a little gut of course.. Should I question as to why I am not taking higher amount of ribivirin?? The first doc I went to told me peg also, and 1200mg. of ribivirin.. The max dose!! But this was a nurse PA, not a Dr..

[Indiana]

I could almost betcha that he's thinking of the fact that the Peg/Intron is dosed based on weight and so he has more control that way. The problem is that all the studies I have seen that are credible show that both of the meds are comperable in success rates and that the Pegasys actually has a greater success rate for type 1's. That improved rate is only about 5% different but hey....we type 1's will take all that we can get!
The biggest difference we see with the Pegasys is that the sides are "normally" WAY less than on the Peg/Intron. If you have to do the long haul (48+ weeks) I would really push him for the Pegasys.
I would also push for the 1200 Riba rate at your weight. And make SURE they don't try to lower it if you do drop below 75kg. All things considered, you really need the higher dose of that all the way through. Ask about the use of Procrit and Neupogen now in case you do become anemic. Best to get THAT discussion out of the way right now before you even start. You really need to keep those doses up all the way through if you can.
Good Luck..........

Gonagetbetr.....
I have seen Docs do this before. This indicates a doc who is really concerned about the side effects. They like to "ease" your body and your mind into the meds and have the blood counts drop more slowly that way. It does seem to help SOME patients cope with the sides better and not drop out as much. If you look at Dr. Cecils approach..... I think he likes to start his patients out with no Riba at all and monitor the load drop to get the desired numbers...than he brings in the Riba. His approach is unconventional but he does have good success with it.
I would just ask your doc right up front about this. If all he's worried about is the sides then you might want to ask for him to reconsider. You might also ask about his use of Procrit and Neupogen for the anemia if that happens to you along the way. If his approach to that problem is just to lower the doses then you need another doc.
Best to get all these ducks in a row BEFORE these problems come up.
Best of Luck................

[donAlfonso]

I do wonder whether any doctor prescribes both PegIntron and Pegasys, basing the decision on the needs/desires of the patients. With my doctor there was no question, he seems to only use Pegasys.  Sounds like Kaiser probably has a contract to use PegIntron.  As usual, capitalism only appears to offer consumers a choice, just like with these phony Medicare prescription cards.  Whoops, I feel a heavy duty rant coming on, so I'll nip it in the butt.  

TonyZ, if that was my doctor, I would at least press him to be truthful about his decision making, and to tell you if in fact he has no choice in the matter.  Trust is important in this doctor/patient relationship, and this doesn't, to me, sound like a good way to start.  Hope you can get what you want, and what is best for you.  Keep us posted.

dA

[Is_This_Real?]

Okay ....

I weighed about 210 when starting treatment.  I weigh at least that much now.  I am on Pegasys and started out with an initial viral load of 7,550,000 and was genotype 1a.

So, with a very high viral load, a genotype that is very hard to treat, and weighing over 200 lbs ... I guess if I had of had your doctor I would have been out of the loop for Pegasys and would not have been considered.  Luckily, my doctor used Pegasys and I was clear at 8 weeks (almost clear at 4 weeks).

I do remember my doctor mentioning once (not too long after Pegasys was approved) that it was not weight adjusted, so it was not good for patients who weighed over 250 pounds.

Of all my research, I have seen nothing to support that statement.  I mean it is a fact that Peg-Intron is weigh based, and Pegasys is not, but what does that really prove?  There have been no head to head studies yet, and no one can actually say which is better.

If the doctor is not overly experienced with treating patients, most of his "knowledge" or information is based upon what he is told by the drug reps.  And the drug reps of course want to state the superiority of their drugs to increase their sales.
(And before you think I am just making allegations here, let me say that I have a cousin who is a drug rep for Scherring, and just in casual conversation I asked him what kind of drugs he sold ... he doesn't know I have (HAD) Hepatitis C.  He told me about this and that and then expalined that Scherring-Plough had the number one drug and best selling drug to treat Hepatitis.  I did not bother to dispute him, but the fact is he THINKS the Peg-Intron by Sherring is the best drug because that is what his company has told him).

But as doctors get experienced with both drugs, and as they see just as good or better results with Pegasys, and MUCH less sides, they usually will recommend Pegasys over Peg-Intron.  Or at least that has been my experience.

Now that my doctor has treated a bunch of people with Pegasys, she now thinks it is better ... althought I will give you the .... that not everyine is the same.  Some people seem to have better results with Peg-Intron, I guess?

Another thought in comparing the drugs .... just think about it.  With Peg-Intron, it is considered successful if you have a 2 - log drop by week 24.  With Pegasys, if you don't have a 2 - log drop by week 12, you are told you might as well stop.  And we have numerous studies that support the thought that the chance of SVR is greatly linked to how soon some one clears the virus, and how long they treat afterward (I have read some studies that state if you treat for 36 to 40 weeks post clearance, your chances for SVR will approach 80%).  So, if you are not even suppossed to clear with Peg-Intron unitl week 24??????  To me, that thought has always said something about which drug works better.

[cheriums]

Saw a recent study finding PegIntron did not sustain the blood level as well as Pegasys, and suggesting -- or perhaps there is already a study underway? there are number of dosing (how much of which is better for whom) studies going on or about to start right now -- PegIntron would be more effective with twice weekly dosing. (At a lower dose, I believe.)  Some patients were found to have a drug trough at day #6 or day #7 of the week. Some believe the side effects of Pegasys are less severe, and I have heard that attributed to the lack of trough, that is, the blood level being maintained more steadily. On the other hand, there's also a theory (a fact? who knows) bumping around, saying that Pegasys more directly targets the HCV in the liver.  Which sounds good, until you think about the fact that this is a systemic virus, in the skin cells and other organs, even the cerebral spinal fluid and lymphatic system ... .  I don't think we know yet.  That's why the head-to-head study is enrolling thousands of patients. I feel we just have to pick one and roll with it.  I picked Pegasys.  The side effects have been tolerable.  At mid-point, I my 'load was undetectable ... .  Hopeful, here.

[lost and confussed]

Hi its me the dual personality that cant seem to change nicknames
aka gonagetbetr lol
ok a girl isn't suppose to talk about these things but
over the last 5 years I have slowed down quite a bit tired all the time (imagine that) now I have hcv and have for approx 26yrs per doc. hence tired all the time
I am a geno 1 (doc says no difference between the a and b i am just a 1 vl 1.2 million no bx as he is afraid to do since platelets hover around 64k
He has asked me each time that I see him if I would reather see some docs at the hospital (kind of makes me think he is a bit unsure of himself) but he said that I should get to know them so if I need a liver transplant they will be familiar with me.
He also said that he believes that I am probably a stage f4 or begining cirhosis. and chances are 40 percent I will need a transplant.
I am 38 years old 5'6" ok even my husband doesnt know this and 235lbs Female
I know I am fat but be nice
He said that if my platelets drop to 35 he will probably stop tx.
here in lies my dilema. I want to start tx. D
Do you think that I should start and find a new doc? He said that he has 30 -40 patients that have hcv he is a gastrointeroligst ( oh yeah I can't spell either)and that he has the same qualifications as the best of hcv docs
He did not say why he wants to start at a lower dosage though and I didn't ask as he is the professional right?
ok that is why I need you guys and girls so I was taught not to question doctors as they are smart but with all the goofy things that they say and forget one would have to be crazy to trust all
Should I insist on the full dosage?
what about the peg interferion how much of that is the norm?
HELP!!!!!
the pharmacy has already called and the drugs are ready but am waiting on insurance company to approve they said monday or Tuesday of next week.
your guidance is appreciated
in case thread is full
***@****

[TnHepGuy_]

Body Mass Index (BMI) is one of the negative predictors of SVR.

- (this from a <a href="http://www.natap.org/2004/EASL/easl_17.htm">study</a> of geno 1 patients): "<i>Factors that significantly modified the probability of an SVR in patients infected with genotype 1 included: age, viral load, ALT quotient, histology, and <b>BMI</b>.</i>"

I would be very curious as to why your doc would want to start you on a lower doseage of ribavirin, when standard wisdom is to give it maximum dosage  - especially early on in tx (see - <a href="http://www.hivandhepatitis.com/2003icr/03_assld/docs/pegasys/102703_g.html">Ribavirin Dosage Significantly Affects Virological Response Rates in HCV Patients Treated with Interferon/Ribavirin</a>)

(from the study): <i>When comparing body weight, BMI, the absolute intention to treat (ITT) ribavirin dose as well as the ITT dose of ribavirin measured in mg per kg body weight and the respective ribavirin doses at the end of treatment (EOT), a significant association with SVR was found for the EOT ribavirin dosage (mg per kg body weight) and BMI (p=1.8% and p=3.0%, respectively).


For predicting SVR, a weight-based ribavirin dosage threshold of 13.75 mg/kg was calculated using receiver operating characteristics (ROC) curves. The SVR rate was 66% (112/169) in patients with a ribarivin dose of more than 13.75 mg/kg as compared with 46% (79/172) in patients receiving equal or less than 13.75 mg/kg ribavirin at EOT.


In conclusion, the analysis of ribavirin dosage motivates new considerations of weight-adjustments of the ribavirin dosage to further increase SVR in HCV-infected patients treated with combination therapy.</i>


You may want to show him these papers and discuss why he wouldn't have you on a full dose amount.



TnHepGuy

[cuteus]

TY for asking, no  i am in for the longer run: 1a, wk 47, dragging along, not joyfully, but doable.
If the weakness and shortness of breath limits you considerably, insist on intervention.  It helps your mind to keep moving and do some form of exercise, but anemia stops you big time.  GL

[gonagetbetr]

Does your weight play a factor in eradicating this virus?
I am overweight and curious
my doc said that he wanted to start me on the peginterferion with riba at the lower weight dosage
do they do that to start normally?

[katch20]

thanks.  how have you been doing?  am i right when i remember you are also 3a?  where are you in your tx?  how have the sides been for you?  katch

[honey1616]

I pray everything works out for your nephew! If you don't mind my asking....what genotype were you?  And how long did you have hep c...if you even know?  Thanks and best wishes to you and your family!

[cuteus]

I am about your wt and also on 1000mg.  went to 800 during the anemia period.  any lowering of your red cells, even if not oficially worth of Procrit, will give you shortness of breath.  your body has less cells to process the O2 in your blood.