Aa
Just diagnosed, seeking treatment
I just stumbled across this board and have spent hours reading but it just seems to add to the confusion. My husband was diagnosed with Hep C, Type 3. We are in the process of trying to get treatment but now so many questions have come up that I am beginning to be completely overwhelmed. Originally we were prescribed Pegasys and 800mg ribavirin daily but our copay was like 600.00 per month. After discussing this with the nurse today I was told that he could probalbly take Peg-Intron instead. I kind of feel as if I am settling for less? Is one better than the other? Does one have less side effects? Can anyone shed any light on any of this in laymens terms for me? I am wondering if perhaps we are not seeing the right dr. or one who has enough information because so much of what seems to have been discussed on theboards has never been revealed to us? We were just kind f told to start treatment come back in two weeks for tests and Dr. followup and we would go from there. I am sorry I am sounding like such an idiot but I am just beyone confused and overwhelmed. Also... should I be paying this $600.00 co-pay or should I continue to search for a better price or a program that might help? If you have any questions or need any info to be able to help, please ask away.... somehow I just need to get to the bottom of this and start the road to healing and recovery! Thank You so much for any input!
welcome! this is a good place to be; many folks here know a lot about hep c; first, if your husband decides to go on treatment, he should consult a liver specialist, preferably one who treats plenty of hep c; there are different treatment outcomes for different medicines, good source of info is hivandhepatitis.com; don't freak out yet; type 3's have pretty good treatment results; however, 800 mg of riba sounds like the old regimen; make sure if he goes for it, the riba is weight based; about the money, there are programs available, i don't know any about them, but many on this site do; i whish you guys good luck
ciao
ciao
Thank you for the kind words and welcome! Actually I was starting to question the riba just by reading others posts, so you kind of confirmed that for me. We are seeing a GI as this was who the family md recommended, maybe we should seek out more help on our own? He did do the genotyping and viral load thing so I feel better about that, I am not real pleased with his overall personality but I guess a lot of specialists are that way and my hubby really likes the nurse he would be working with most of the time (so do I). It took us so long to get to this point and now it seems like maybe we should be starting all over? Wow! I don't know where to begin...
check out this thread I started on another hcv site:
http://hcvsupport.org/forum/index.php/topic,3580.msg29394.html#msg29394
I have decided to go with the redi-pen, peg-intron.... They both have the same success rate but the redi-pen has less of a relapse rate, and less sides, and more of 4 week clear rate.... my g.i. tried to tell me it was all marketing but these were independent studies.
don't know if redipen is cheaper yet.
I read somewhere that tx cost is around 3000.00 per month! so think of 600.00 as a bargain if you can.
Ouch! but since I had to give up drinking I can use my beer money!
bandman
http://hcvsupport.org/forum/index.php/topic,3580.msg29394.html#msg29394
I have decided to go with the redi-pen, peg-intron.... They both have the same success rate but the redi-pen has less of a relapse rate, and less sides, and more of 4 week clear rate.... my g.i. tried to tell me it was all marketing but these were independent studies.
don't know if redipen is cheaper yet.
I read somewhere that tx cost is around 3000.00 per month! so think of 600.00 as a bargain if you can.
Ouch! but since I had to give up drinking I can use my beer money!
bandman
VERY IMPORTANT!
in the thread that I referred you to ,there is a comment by Doug that the redi-pen does not have to be refrigerated... this is not true! redi-pen DOES have to be refrigerated!
bandman
in the thread that I referred you to ,there is a comment by Doug that the redi-pen does not have to be refrigerated... this is not true! redi-pen DOES have to be refrigerated!
bandman
Hhmmm... and here I was starting to lean toward the Pegasys for the very same reasons. I have heard from the GI, asst. literature and other posts that the Pegasys offered a lower relapse rate and substantially less side effects. I guess some of it really boils down to a matter of personal preference? Now I have another viewpoint to look into, thanks!
plus,
if you get on the manufacturers web sites (google schering as well as roche, or redi-pen, pegintron, ... pegysis , etc..
find their web sites and they should have info about financial help.
bandman
if you get on the manufacturers web sites (google schering as well as roche, or redi-pen, pegintron, ... pegysis , etc..
find their web sites and they should have info about financial help.
bandman
actually what it boils down to is how much influence the manufacturer has with the doc....
read the studies and you will see that the redi-pen has the edge.
bandman
read the studies and you will see that the redi-pen has the edge.
bandman
the G.I. may just want to go with what he has on hand... that is kind of what mine tried to do, plus they get familiar with one product and really proficient with that treatment.
Kinda like a fisherman using a flyrod and then being asked to use a baitcaster... it can be done, but it takes practice and time.... some are purists, and some are just lazy.
read independent studies referenced in the thread.
Don't listen to your g.i., he will want to take the easy way out...usually.
Most hate to bother with hcv, I guess it does not make enough money for the amount of time they must spend monitoring, etc.
I am trying to change to a hepatologist asap! Already have a plan B! You should have one to, in case this g.i. doesn't work out, have a referral from your m.d. ready to go for a hepatologist. go ahead and set up the appt. for a couple months down the road...
if everything is working out, call a couple of weeks ahead of time and cancel.
if not working out, tell the hep what is going on and you want a second opinion. bring copies of everything,.... or you might be able to get your md to set it up so that the hep can see everything on a computer... that is what mine is doing.
good luck!
bandman
Kinda like a fisherman using a flyrod and then being asked to use a baitcaster... it can be done, but it takes practice and time.... some are purists, and some are just lazy.
read independent studies referenced in the thread.
Don't listen to your g.i., he will want to take the easy way out...usually.
Most hate to bother with hcv, I guess it does not make enough money for the amount of time they must spend monitoring, etc.
I am trying to change to a hepatologist asap! Already have a plan B! You should have one to, in case this g.i. doesn't work out, have a referral from your m.d. ready to go for a hepatologist. go ahead and set up the appt. for a couple months down the road...
if everything is working out, call a couple of weeks ahead of time and cancel.
if not working out, tell the hep what is going on and you want a second opinion. bring copies of everything,.... or you might be able to get your md to set it up so that the hep can see everything on a computer... that is what mine is doing.
good luck!
bandman
If hubby is like most, he's probably had hcv for a while. The first thing to do is NOT RUSH. As you learn, read and understand more you'll see that there is a lot to treating hcv. Sometimes you need to put the brakes on and line up those ducks, doctors and doses. I agree on the 800mg point. Also, the drug manufacturers have programs to assist those who are uninsured or under insured. More to know. Everone has been where you are now. You'll get through it.
If you have not already, scroll down to the right bottom of the page and look for Most Viewed Health Pages. One of the document you'll see is 'Common Hepatits C Acronyns'. It will help you interpret some of the stuff you read here.
Get used to reading conflicting information about hcv; people are different and opinions can vary from person to person and from doctor to doctor. Need to sort through a lot of stuff sometimes. For example, Bandmans's view of the side effects of Pegasys vs. Peg Intron. Personally, I've used both and found that Pegasys is milder. But, again, people are different.
Get used to reading conflicting information about hcv; people are different and opinions can vary from person to person and from doctor to doctor. Need to sort through a lot of stuff sometimes. For example, Bandmans's view of the side effects of Pegasys vs. Peg Intron. Personally, I've used both and found that Pegasys is milder. But, again, people are different.
I was a geno 1A and geno1B and took pegintron and have been SVR for over 17 months. Your fears are not really merited.
Personally I hated the redi-pen because I always felt I ws getting ripped off some of the meds ( a drop comes out when you inject and I always wanted that drop!!!) of course it really didn't matter a bit.
This is like taking advil vs. ibuprofen - different companies different forumlaries same exact stuff. There isn't a big enough difference in anything to get in an uproar over it. Really. Most doctors just use whatever their HOSPITAL uses and it's as simple as that.
PS Most of the doctors didn't tell ANY of us ANYTHING. Pretty much we had to learn it on our own through research and opinions of others.
With this disease it is a more you know the better situation for achieving SVR. Make sure you get copies of all of this tests and get frequent PCRS...........don't sweat the small stuff like which peg but make SURE he gets enough RIBAVIRIN! I know he's a geno3 but if you can talk the doctor into it...see that he goes WEIGHT Based. I dont' care what he says...........every little bit helps and it's dEFNITELY a more is better than less situation when you are talking of killing billions of virus that live in side you. You have to get them ALL not just 9,999,999!
Good luck.
Personally I hated the redi-pen because I always felt I ws getting ripped off some of the meds ( a drop comes out when you inject and I always wanted that drop!!!) of course it really didn't matter a bit.
This is like taking advil vs. ibuprofen - different companies different forumlaries same exact stuff. There isn't a big enough difference in anything to get in an uproar over it. Really. Most doctors just use whatever their HOSPITAL uses and it's as simple as that.
PS Most of the doctors didn't tell ANY of us ANYTHING. Pretty much we had to learn it on our own through research and opinions of others.
With this disease it is a more you know the better situation for achieving SVR. Make sure you get copies of all of this tests and get frequent PCRS...........don't sweat the small stuff like which peg but make SURE he gets enough RIBAVIRIN! I know he's a geno3 but if you can talk the doctor into it...see that he goes WEIGHT Based. I dont' care what he says...........every little bit helps and it's dEFNITELY a more is better than less situation when you are talking of killing billions of virus that live in side you. You have to get them ALL not just 9,999,999!
Good luck.
By milder, I mean fewer (milder) side effects from Pegasys. Even when I double-dose Pegasys it was more tolerable than a single PegIntron.
What often happens with insurance companies is that they cover the meds under their major medical policy rather than the prescription drug plan. This leaves the patient with a 30% co pay… the meds typically cost $2,200 to 2,500 USD/month.
All manufactures of HCV meds have Patient Assistance Programs (PAP’s) in place to help us get through the some of the cost. There level of assistance will vary from manufacturer as well as your income. This is generally assessed by income rather than assets.
For more info, call the appropriate numbers and ask for assistance; these folks are extremely professional and go out of there way to help:
Pegassist (Roche Pegasys system): 1-877-734-2797
Commitment to Care (Schering- Plough PEG-Intron system): 1-800-521-7157
In terms of efficacy, one of the most recent comparisons was provided by the IDEAL study (sponsored in part by Schering-Plough :o)); the results are discussed by a prominent hepatologist here:
http://www.hivandhepatitis.com/hep_c/news/2008/011808_a.html
If you haven’t already, also take a look at the following sites:
http://janis7hepc.com/
http://clinicaloptions.com/Hepatitis.aspx (free registration required)
http://www.hivandhepatitis.com/hep_c.html
Good luck in your journey, continue to educate yourself, and stay in touch—
Bill
All manufactures of HCV meds have Patient Assistance Programs (PAP’s) in place to help us get through the some of the cost. There level of assistance will vary from manufacturer as well as your income. This is generally assessed by income rather than assets.
For more info, call the appropriate numbers and ask for assistance; these folks are extremely professional and go out of there way to help:
Pegassist (Roche Pegasys system): 1-877-734-2797
Commitment to Care (Schering- Plough PEG-Intron system): 1-800-521-7157
In terms of efficacy, one of the most recent comparisons was provided by the IDEAL study (sponsored in part by Schering-Plough :o)); the results are discussed by a prominent hepatologist here:
http://www.hivandhepatitis.com/hep_c/news/2008/011808_a.html
If you haven’t already, also take a look at the following sites:
http://janis7hepc.com/
http://clinicaloptions.com/Hepatitis.aspx (free registration required)
http://www.hivandhepatitis.com/hep_c.html
Good luck in your journey, continue to educate yourself, and stay in touch—
Bill
As counterpoint to FLGuy, I’ve had quite the opposite experience… I found PEG-Intron to be more tolerable than Pegasys.
Bill
Bill
Okay... you are the third person that commented on the weight based Ribavirin - I have come to the conclusion this is of the utmost importance. Now that I have identified the problem what would you suggest? Do I need to completely switch drs. talk to the nurse or the dr which is rather aloof and does not seem too good about fielding questions? I singled you out because somehow I relate to you and your post really struck home, sorry if I am bothering you.
Everyone has been so very helpful and I really do appreciate every last comment on here! This is all new to me and I know it will take time, but I suspect it will all eventually come together! Keep the comments coming you have been amazing!
Agreed; we have them totally confused! (Sigh), I wish there was an easy way to explain all this... it's easy to forget we've had years to absorb this info :o).
Take care--
Bill
Take care--
Bill
Speaking of absorption, by my guess you will have absorbed about 6,700 riba when you complete this tx. Unreal!
You aren't "bothering' anybody here my new friend this is WHY we are still here! We were just as confused as you are in the very beginning. My God I drove these poor people CRAZY with my millions of questions. Seriously...just ask a lot of them remember when I came on :)
I treated for 72 weeks. I've been SVR for 17 months. In the beginning there was no real data out there about the fact that riba was of crucial importance, especially it is during the first 12 weeks. But believe me it's CRUCIAL to get the right amount.
A lot of doctors will say that geno 3 is one of the "lucky" genos. BS! There is NO lucky geno...just ask the person who has the disease how lucky they think they are? Lately as well we've seen that CERTAIN strains of geno3 are ESPECIALLY hard to kill and people have relapsed...more than the numbers would suggest should be possible.
Watching them retreat it seems that when they are more aggressive with the amount of ribavirin they just seem to succeed.
I'll see if I can get a message to a woman named Kalio. She is a geno 3 who can explain your hubs specific type to you better than me (who just got "lucky" enough to get two kinds of geno1 LOL). Just kidding.
If you go to google and type in "weight based ribavirin vs. manufacturer based" you should get a lot of information about geno1s (that is because mostly they ONLY run tests using geno 1 because it's the hardest to kill - they have to date totally been ignoring the other genos which sure isn't fair).
But take our advice - treat it as aggressively as if he was a geno1. Don't take any shortcuts even though it might be "easier" and with "less side effects" I mean you don't want to OD on the stuff but - just ask all the relapsers in here and they will tell you...if you only have to do this treatment ONCE just do it ONCE.
Now remember - ask away. 99% of the people in here are just the gold of the earth. They helped to save my life. Seriously.
Debby
I treated for 72 weeks. I've been SVR for 17 months. In the beginning there was no real data out there about the fact that riba was of crucial importance, especially it is during the first 12 weeks. But believe me it's CRUCIAL to get the right amount.
A lot of doctors will say that geno 3 is one of the "lucky" genos. BS! There is NO lucky geno...just ask the person who has the disease how lucky they think they are? Lately as well we've seen that CERTAIN strains of geno3 are ESPECIALLY hard to kill and people have relapsed...more than the numbers would suggest should be possible.
Watching them retreat it seems that when they are more aggressive with the amount of ribavirin they just seem to succeed.
I'll see if I can get a message to a woman named Kalio. She is a geno 3 who can explain your hubs specific type to you better than me (who just got "lucky" enough to get two kinds of geno1 LOL). Just kidding.
If you go to google and type in "weight based ribavirin vs. manufacturer based" you should get a lot of information about geno1s (that is because mostly they ONLY run tests using geno 1 because it's the hardest to kill - they have to date totally been ignoring the other genos which sure isn't fair).
But take our advice - treat it as aggressively as if he was a geno1. Don't take any shortcuts even though it might be "easier" and with "less side effects" I mean you don't want to OD on the stuff but - just ask all the relapsers in here and they will tell you...if you only have to do this treatment ONCE just do it ONCE.
Now remember - ask away. 99% of the people in here are just the gold of the earth. They helped to save my life. Seriously.
Debby
treat it as aggressively as if he was a geno1.
ps I didn't mean insist he do 48 weeks or get carried away..............I just meant don't skimp and gt the extra riba for sure! I don't want to start getting hate mail that I'm telling people to double dose all their meds or do 72 weeks - I'm sure you understand what I meant but I thought I'd better clarify it!
ps I didn't mean insist he do 48 weeks or get carried away..............I just meant don't skimp and gt the extra riba for sure! I don't want to start getting hate mail that I'm telling people to double dose all their meds or do 72 weeks - I'm sure you understand what I meant but I thought I'd better clarify it!
Can anyone tell me what a weight based dosage of ribavirin for a 195lb. person would be? I am slowly but surely following the links I have been given and it seems as if what he has been prescribed is way off. The prescription states Pegasys and the second prescription states Ribavirin 200MG Capsules twice daily. But from what I am reading it should be Copegus which only seems to come in 1,000mg or 1,200mgs? So setting the brand name aside this treatment would not follow the Ribavirin guidelines that Pegasys has established? Or am I just confusing myself even more?
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