WHY ISN'T THERE PROPER BEFORE and AFTER CARE for people doing the PEG

[Guest guest]

re/ EVERYBODY WHO HAS GONE THROUGH OR IS ABOUT TO GO THROUGH THE INTERFE

~RON/RIBAVIRAN.????

Since i joined this group nearly every question about the

SUB/C/INJECTIONS and THE PEG/RIBARVIRIN CAPSULES,INVOLVES the subject

asking nervously if it isn't as bad as they heard.? There should be a

peoper bona fide organisation to deal with this within the drugs manufac

~turers,for gods sake they charge enough for the doses of it.The sort of

thing i am refering to,isn't a ONE FOOT LONG piece of paper informing

you that you might feel like this or like that,It's time these makers

told you what you could expect for real.Instead of solid guess work they

must know for instance which genotypes can expect what.Why all the guess

work the Federal Drugs Administration must have asked them questions as

to what it would do to a indivdual.This should be taken into account and

you should get informed what sorts of reactions could be expected from

this certain geno type.And the ones who copped it the most should be

treat as proper outpatients,not just sent home and told to stick it out

and the best of luck to you.

*GED*

putting the world to rights " AGAIN " !?!?!?!?!?!

[Guest guest]

Welllllllllllll

They do have some toll free numbers that you can call if you need information from the drug companies.

But you are right there is not a really cohesive site you can go to from the drug companies that says, it is not as bad as it seems, or it was a living hell for me.

Why because the drug companies could open themselves up to lawsuits if they said specificial this medication will make you feel like dog poot for 24 weeks or 48 weeks.

That is why there are groups like this, and sites that answer the questions to the best of their knowledge. Each person reacts to the medication differently. Take me for instance. Alot of people lose large portions of their hair, some folks even go completely bald from the treatment. Me, I experienced both times over all thinning of the hair. But never to the point that I was bald in any certain area. And I had naturally curly hair. With both treatments my hair turned straight as a board and fine as frogs hair.

After first treatment about 6 months after, I got a extreme haircut. And it made my curl come back. No it was not as curly as before. But it was naturally wavy and that was cool with me.

This treatment, again my hair is fine as babies hair, frog fine, straight as a board, Now let see I finished treatment hmmmmmm roughly last of Dec, first of Jan. I would have to go back and check my records.

But I would say it is 6 months post treatment. Now I haven't went for that extreme haircut because my daughter likes my hair long. it is growing fast tho.

Okay the hair issue over, what I am trying to say is everyone reacts to treatment differently.

And they handle the treatment differently. I for one, traveled all over the USA during treatment. People were like are you Nuts. Yeah I probably was!! Hee Hee

But I didn't let treatment stop me from doing the things I enjoyed, if I was too tired to walk, I rented a electric buggie so that I could keep up with my family. I was determined that if I was going to do treatment that I wasn't going to let it take over my life.

So that is me.

Love

Janet>> re/ EVERYBODY WHO HAS GONE THROUGH OR IS ABOUT TO GO THROUGH THE INTERFE> ~RON/RIBAVIRAN.????> Since i joined this group nearly every question about the> SUB/C/INJECTIONS and THE PEG/RIBARVIRIN CAPSULES,INVOLVES the subject> asking nervously if it isn't as bad as they heard.? There should be a> peoper bona fide organisation to deal with this within the drugs manufac> ~turers,for gods sake they charge enough for the doses of it.The sort of> thing i am refering to,isn't a ONE FOOT LONG piece of paper informing> you that you might feel like this or like that,It's time these makers> told you what you could expect for real.Instead of solid guess work they> must know for instance which genotypes can expect what.Why all the guess> work the Federal Drugs Administration must have asked them questions as> to what it would do to a indivdual.This should be taken into account and> you should get informed what sorts of reactions could be expected from> this certain geno type.And the ones who copped it the most should be > treat as proper outpatients,not just sent home and told to stick it out> and the best of luck to you.> *GED*> putting the world to rights "AGAIN"!?!?!?!?!?!>

[Guest guest]

Hi Janet Im with you on that,, we did travel while I was on treatment because we HAD too, my husbands mom was sick and we had to make several trips down here but I never drove because I felt too weak to drive and I slept most of the way. I too lost so much of my hair that I finally had that extreme haircut too( shaved it completely off) and bought 2 different wigs to wear if I needed to go out in public. Most of the times at home I didnt wear them because they were just too hot. My hair took nearly 2 years to come back in as it was before. It will never be as thick as it was when I was younger but thats ok. I no longer color my hair or perm it so its au naturelle and I really am liking the grey streaks. But it has finally come back to normal.. I was 3 years post treatment the end of Feb of 06, so for me, it did take a very very long time for it to return.. I think that one can safely travel on treatment if you prepare for it and pace

yourself. Its easy when away from home to allow yourself to do too much and to get overtired. I know I did that a couple of times myself and had to learn the hard way.. but Im pacing myself even now. Maybe WE as a community should do something to help get some kind of "reality of treatment" source started for those thinking about treatment.. but Im too tired to do it myself,, but Im here to chat anytime,, lol well gotta take a rest, we had to move my mom this morning.. love to you all jackieJanet <doc_jade@...> wrote: Welllllllllllll They do have some toll free numbers that you can call if you need information from the drug companies. But you are right there is not a really cohesive site you can

go to from the drug companies that says, it is not as bad as it seems, or it was a living hell for me. Why because the drug companies could open themselves up to lawsuits if they said specificial this medication will make you feel like dog poot for 24 weeks or 48 weeks. That is why there are groups like this, and sites that answer the questions to the best of their knowledge. Each person reacts to the medication differently. Take me for instance. Alot of people lose large portions of their hair, some folks even go completely bald from the treatment. Me, I experienced both times over all thinning of the hair. But never to the point that I was bald in any certain area. And I had naturally curly hair. With both treatments my hair turned straight as a board and fine as frogs hair. After first treatment about 6 months after, I got a extreme haircut. And it made my curl

come back. No it was not as curly as before. But it was naturally wavy and that was cool with me. This treatment, again my hair is fine as babies hair, frog fine, straight as a board, Now let see I finished treatment hmmmmmm roughly last of Dec, first of Jan. I would have to go back and check my records. But I would say it is 6 months post treatment. Now I haven't went for that extreme haircut because my daughter likes my hair long. it is growing fast tho. Okay the hair issue over, what I am trying to say is everyone reacts to treatment differently. And they handle the treatment differently. I for one, traveled all over the USA during treatment. People were like are you Nuts. Yeah I probably was!! Hee Hee But I didn't let treatment stop me from doing the things I enjoyed, if I was too tired to walk, I rented a

electric buggie so that I could keep up with my family. I was determined that if I was going to do treatment that I wasn't going to let it take over my life. So that is me. Love Janet>> re/ EVERYBODY WHO HAS GONE THROUGH OR IS ABOUT TO GO THROUGH THE INTERFE> ~RON/RIBAVIRAN.????> Since i joined this group nearly every question about the> SUB/C/INJECTIONS and THE PEG/RIBARVIRIN CAPSULES,INVOLVES the subject> asking nervously if it isn't as bad as they heard.? There should be a> peoper bona fide organisation to deal with this within the drugs manufac> ~turers,for gods sake they charge enough for the doses of it.The sort of> thing i am refering to,isn't a ONE FOOT LONG piece of paper informing> you that you might

feel like this or like that,It's time these makers> told you what you could expect for real.Instead of solid guess work they> must know for instance which genotypes can expect what.Why all the guess> work the Federal Drugs Administration must have asked them questions as> to what it would do to a indivdual.This should be taken into account and> you should get informed what sorts of reactions could be expected from> this certain geno type.And the ones who copped it the most should be > treat as proper outpatients,not just sent home and told to stick it out> and the best of luck to you.> *GED*> putting the world to rights "AGAIN"!?!?!?!?!?!>Jackie

[Guest guest]

I totally agree but dont look for THAT to happen anyday soon unless WE do it!flanneryged <flanneryged@...> wrote: re/ EVERYBODY WHO HAS GONE THROUGH OR IS ABOUT TO GO THROUGH THE INTERFE~RON/RIBAVIRAN.????Since i joined this group nearly every question about theSUB/C/INJECTIONS and THE PEG/RIBARVIRIN CAPSULES,INVOLVES the subjectasking nervously if it isn't as bad as they heard.? There should be apeoper bona fide organisation to deal with this within the drugs manufac~turers,for gods sake they charge enough for the doses of it.The sort ofthing i am refering to,isn't a ONE FOOT LONG piece of paper informingyou that you might feel like this or like that,It's time these makerstold you what you could expect for real.Instead of solid guess work theymust know for instance which genotypes can expect

what.Why all the guesswork the Federal Drugs Administration must have asked them questions asto what it would do to a indivdual.This should be taken into account andyou should get informed what sorts of reactions could be expected fromthis certain geno type.And the ones who copped it the most should be treat as proper outpatients,not just sent home and told to stick it outand the best of luck to you. *GED*putting the world to rights "AGAIN"!?!?!?!?!?!