Combo Starters Read This
*********************************************************************
Hepatitis C is not one virus but a series of viruses that for convenience sake have all been lumped under the general term hepatitis c. What distinguishes one virus from another is the genotype. The genotype will determine the amount of ribavirin you have to take and the length of treatment.
Genotypes 2 and 3 are the easiest to treat, require a lower dose of ribavirin and need 24 weeks of tx.
People with genotype 2 and 3 will be on 800 mg of ribavirin.
Both groups will be on the same level of interferon. Inteferon is a protein. It is naturally produced by the body. It is not a poison. To think that you are injecting poison into yourself when you inject interferon is complete nonsense and is psychologically damaging.
Genotype 1 people will be on at least 1000mg of ribavirin. If they are 75 kilos or over the amount increases by the weight of the person. For example, I am genotype 1 so automatically this puts me on 1000 mg of ribavirin. But I am also 85 kilos, which is 10 kilos over the standard weight so I get an extra 200 mg of ribavirin.
So all in all I take 1200 mg of ribavirin daily. 3 tablets in morning and 3 tablets in evening.
Compared to a genotype 2 and 3 who are on 800 mg daily, this is a massive one third extra every day. You don`t need to be a rocket scientist to figure that the more ribavirin you are on the more symptoms you are likely to get and the rougher the ride.
Also, genotype 1 people will be on 48 weeks tx – a longer haul all round.
I have yet to find anywhere, anyone who can tell me what ribavirin actually is. But all agree it is an immune system stimulant that enhances the effect of the interferon.
When looking for information and in particular identification with someone who has hepc and is on tx it is important to determine the genotype and therefore the amount of medication they are on so as to get a true picture of whether this person is likely to have similair reactions to you.
I have yet to find anyone, anywhere who has had such an extreme reaction as I had on my first day of tx. My continuing experience is fairly miserable. I can only put this down to the fact I am on this high dose of ribavirin. You may not get this extreme reaction - I hope you don`t.
In a previous post I mentioned that I tried to get my ribavirin reduced, but my nurse wasn`t having any of it – so that`s that. I do what I am told.
I hope this is helpful if you are just starting out. When I started my tx there were only two other hepc bloggers, Ron and Jonathan. It was easy to categorise everything and take everything in.
Now, at the last count there were 14 hepc bloggers. For a newcomer it`s a daunting prospect to be faced with this mass of often seemingly contradictory advice.
My personal advice (take it or leave it) would be to find a couple of people of the same genotype as yourself and get to know them first. Read their stories, get a feel for them. Then you can move on. To be honest if you are genotype 2 or 3 and are just starting out and you happen to be reading my blog - you are probably reading the wrong blog. Find someone of your own genotype (sounds almost racist, doesn`t it) and come back to me later if you like.
This shit is heavy enough without having to wade through a mass of information – a lot of which will not be relevant to you.
I know that you will be able to get help from any of the commune of hepc bloggers, but it might be helpful to mention your genotype and amount of medication.
Have a safe journey. I wish you freedom.
Hepatitis C is not one virus but a series of viruses that for convenience sake have all been lumped under the general term hepatitis c. What distinguishes one virus from another is the genotype. The genotype will determine the amount of ribavirin you have to take and the length of treatment.
Genotypes 2 and 3 are the easiest to treat, require a lower dose of ribavirin and need 24 weeks of tx.
People with genotype 2 and 3 will be on 800 mg of ribavirin.
Both groups will be on the same level of interferon. Inteferon is a protein. It is naturally produced by the body. It is not a poison. To think that you are injecting poison into yourself when you inject interferon is complete nonsense and is psychologically damaging.
Genotype 1 people will be on at least 1000mg of ribavirin. If they are 75 kilos or over the amount increases by the weight of the person. For example, I am genotype 1 so automatically this puts me on 1000 mg of ribavirin. But I am also 85 kilos, which is 10 kilos over the standard weight so I get an extra 200 mg of ribavirin.
So all in all I take 1200 mg of ribavirin daily. 3 tablets in morning and 3 tablets in evening.
Compared to a genotype 2 and 3 who are on 800 mg daily, this is a massive one third extra every day. You don`t need to be a rocket scientist to figure that the more ribavirin you are on the more symptoms you are likely to get and the rougher the ride.
Also, genotype 1 people will be on 48 weeks tx – a longer haul all round.
I have yet to find anywhere, anyone who can tell me what ribavirin actually is. But all agree it is an immune system stimulant that enhances the effect of the interferon.
When looking for information and in particular identification with someone who has hepc and is on tx it is important to determine the genotype and therefore the amount of medication they are on so as to get a true picture of whether this person is likely to have similair reactions to you.
I have yet to find anyone, anywhere who has had such an extreme reaction as I had on my first day of tx. My continuing experience is fairly miserable. I can only put this down to the fact I am on this high dose of ribavirin. You may not get this extreme reaction - I hope you don`t.
In a previous post I mentioned that I tried to get my ribavirin reduced, but my nurse wasn`t having any of it – so that`s that. I do what I am told.
I hope this is helpful if you are just starting out. When I started my tx there were only two other hepc bloggers, Ron and Jonathan. It was easy to categorise everything and take everything in.
Now, at the last count there were 14 hepc bloggers. For a newcomer it`s a daunting prospect to be faced with this mass of often seemingly contradictory advice.
My personal advice (take it or leave it) would be to find a couple of people of the same genotype as yourself and get to know them first. Read their stories, get a feel for them. Then you can move on. To be honest if you are genotype 2 or 3 and are just starting out and you happen to be reading my blog - you are probably reading the wrong blog. Find someone of your own genotype (sounds almost racist, doesn`t it) and come back to me later if you like.
This shit is heavy enough without having to wade through a mass of information – a lot of which will not be relevant to you.
I know that you will be able to get help from any of the commune of hepc bloggers, but it might be helpful to mention your genotype and amount of medication.
Have a safe journey. I wish you freedom.
posted by Paul | 6:55 PM
7 Comments:
Thank you for you kind comments - a wonderful surprise. I spent most of the morning scanning blogs and it looks like I might waste away the afternoon here, too.
did I mention I was new at this? I can't seem to figure out how to reply to Wendy.
Wendy: In answer to your question, sure, I can't see why not. I don't know that I have much to offer. I feel strangely like I'm betraying a trust to talk in detail about my husband's symptoms, side effects, fears, etc... and I'd probably get it all wrong. So if anyone is interested in the other perspective, that I can offer.
Paul, I think you make a very valid point. There is a lot of 'stuff' out there and it can make confusing reading. The trouble is even when you align yourself with someone with the same Genotype, it does not guarantee you will have the same side effects - we are all on our own individual journeys. The biggest thing for me is being able to share hopes and fears with people who understand where I'm coming from.
I know I will be feeling just like you in 11 weeks time!
Take care...
Tink
Paul,
Just a quick correction. The ribavirin dosing for genotype 2 and 3 depends on the make of interferon. With Pegintron the dosing of ribavirin for G2&3 is weight based, for Pegasys the dosing is as you say 800mg for everyone.
This was the reason I kicked up a big fuss at my hospital as they initially were going to treat me with Pegintron and 1200mg of ribavirin (I am a big chap). After a complaint this was changed to Pegasys and 800mg.
Perhaps an example of why it is a good idea to find a blogger with the same genotype.
You sound a lot better at the moment.
Cheers
Jonathan
Thank you all for your comments and encouragement.
Jonathan, Thanks for pointing that out about the different makes of inteferon. I`ll bet you are really glad you hassled to get it changed. One third less ribavirin a day! Yes please!
Tink,
Yes, I agree we can find help in our journey even in the most unlikely places. Actually, I was very mindful of you when I wrote this piece. You commented once that you saw similarities in our pre-tx experience and you also commented on my post after reading my experience of the first day saying I`d scared the bejesus out of you.
While I think it is good to know and face the worst case scenario I think the motto has to be,
"Prepare for the worst, hope for the best".
Kerry Grace,
A privilege to meet you and I hope to learn much from your journey with your husband through tx.
Thanks to you all,
Paul.
Paul:
Thanks for the post at Gathering Wool.
I got the "Biggie Combo," which included the 600 mg of Ribivarin. (I was initially prescribed Rebetol, but the insurance company requested that it be changed to the Sandoz generic of Ribivarin.)
In case no one has said this, a few things I can suggest to combat the PEGIntron and Ribivarin side-effects:
-- A few hours before doing the shot, really, really hydrate yourself. (By the way, this is a recurrent theme.)
-- Take 3 Ibuprofen and a benadry or two before going to bed. Some people suggest Tylenol, but due to the liver issues I stick with Ibuprofen.
-- Take the Rib with food.
-- Each day, drink a minimum of a gallon of fluid, including about a half-gallon of Gatorade (or whatever the GB equivalent is of the sports fluid that replaces electrolytes.)
-- For every cup of coffee (or caffeinated tea) you drink, you have to drink two extra cups of fluid.
Just some tips for you ...
Grace and peace,
Excuse me. I think it's 1200 mg of Ribivarin, three pills in the morning and three pills in the evening. Sorry.
Post a Comment
<< Home