Dilemma- What do I do ????

[hyperhepper]

 I went to the doctor's today. Remember I was only doing the shot. Today is my 4th shot. He explained that his strategy in doing this was because he wanted to know what sides I would get and where they were coming from. He's well known and has been part of many clinical trials. He specializes in Hep c. My plateletts went down, but are l00,000. He feels I'm doing well on the interferon. I start the pills tomorrow. He wants me to do 200 mg. per day for l week and increase to 400 2nd week and then to 600. I am 123 pounds as of today. I explained to him that I want to handle this aggressively and that I though 600 was too little and was afraid the virus would have a chance to mutate. He said he wants to avoid putting me on any addtional medicines , and that if the virus is going to mutate it would do so with the interferon, not the ribavirin. He will do a viral count at the end of 6 weeks.
Here's the dilemma, the nurse doesn't know what he said and she gave me a complimentary bottle of 200mgs. She wrote on it 2 in the AM and 3 in the PM. That's a total of 1000 mg. which I am tempted to do. What do you all think ??   :-/     marina

[Too_Tall]

Marina....

As you know.. I'm not on treatment... But... I think this time you should listen to your doctor... It's just an opinion... I'm sure others will add theres, as well...
Ribavirin, is nothing to mess around with. You yourself are saying that your doctor is well known, and specializes in Hep C, and has been part of many clinical trials... To me... this speaks experience, and that speaks volumes when dealing with these potent drugs.
From researching myself, and talking with others on treatment, many of the more dangerous sides, are actually caused by the Riba, rather than the interferon. It sounds to me like your doc is just trying to look out for your over-all best interest...

All my best to you, in what ever you decide to do...

TT

[hyperhepper]

 Hi TT, nice to hear from you. I understand what you're saying and I agree, but I'm just so afraid not to hit this hard from the beginning. I need to put all my trust in him, but I just struggle with the idea. I know he's taking me into this more than 48 weeks, in fact he has some patients doing 72 weeks. It's just so hard to decide what to do. I'm really struggling here. I need to make up my mind by tonight because I start taking them tomorrow. Thanks for caring.   marina

[Jackie]

Hey Marina, How are you feeling with shot 4?   Do the sides get more intense? I do #3 tomorrow night. Don't fret over the 200 mg issue. You will make the right choice. He would give you more if he thought you needed it right away. I know it's hard and frustrating and you want to run full throttle to get it done. It will work out and be ok. Just think, you could be first in line for the new thing they mentioned. . Be patient and at least try it for a few weeks.

Im here if ya need to talk....
Jackie

[hyperhepper]

 Well, it's only been a couple of hours so I can't really answer that just yet.
I feel pretty much the same as the other times. It makes me feel a little lightheaded at first, a little tired, and a little head pressure. I'll keep you posted.

[Penney]

Hi Marina,
Well someone misunderstood the Dr.......I would call him to verify what he told you and to verify with him what the nurse gave you.  Afterall, if you trust him, he is the one with the diploma  But do yourself a favor and call him BEFORE you take the pills.

Penney

[surfergirl]

Hi Marina,
I also  agree that you should check with the Dr. first. Like you mentioned, he is the one with the specialty in his field.  I hope you figure it out. I did see a new Dr. on Thursday and he seems on the ball. He suggested a few options and wants me to wait awhile before I start the meds. I am so anxious at this time, sometimes I feel like I can't breath. So he started me on anit-d's to see if he can mellow me out, before I start the meds. If I chose to. He did say, as 3 other doctors had told me, that really with type 1a the sucess rate with the meds is  only 40%. So I might get another liver biopsy, since I haven't had one in 2 yrs. See if there has been any progression in the disease.  He said if there is only minimal inflammation after 20 yrs. odds are it may not go anywhere for another 20-30yrs. He didn't say not to try the meds. but he said after 12 weeks, he will be able to tell if I am responding to the meds. He was also open to prescribing Pegasus vs. Pegintron. I just have to relax and decide what to do. Well, hope you decide to listen to the Dr. I think he probably just wants to gently break you into the side effects. Are you on Anti'd's? Are you experiencing  any depression, from the shots?

Surfergirl

[geow]

Hi There Marina,
   Once I took .7 ml of my interferon rather than my .5 by accident and of course was freaked when I realized what I had just done. My friends went ahead and called a Pharmacist for me since it was Friday night and the Doctors office was closed and I was just sitting there freaking. Well the pharmacist replied that it was no big deal so I didn't go running off to the emergency room for a possible overdose situation.
        Since I had been on my TX for quite a few months, I just sat back to observe how the side affects would be with this bigger dose of interferon. Well my sides really weren't that much worse and I began to wonder why I wouldn't just take the full dose every week. Then on day 5, when normally I would begin my 2 days of flu free symptoms, still sick. And so it went for day 6 and day 7, very sick; and tired of being sick, and tired.
     That was the last time I refused myself a break from the constant feeling of flu like symptoms, I never again have been anything less than exact on the amount prescribed me. It was just too much for this hepper to deal with and so I stuck with the Doctor and let God handle the rest. After all, many of us are here for that very reason, self-medicating.
    If you want to see what it's like to Overdose on something, watch the movie "Pulp Fiction," starring John Travolta and Samuel L Jackson. It might be a bit morbid to think that this stuff we take could stop your heart like that, however, there are mentions of heart problems associated with the use of these meds, on occasion, published by the drug companies whom produce them.      
     And of course this would all mean that you are risking your life because you want immediate gratification. I wonder where I have heard that term from before.
         I would maybe try to convince my Doctor to up my dose before I took all of the Liability out of his hands.     Be smart, Take Time To Think Things Thru Thoroughly. (The 7 T's)
Your Friend in this war,
George

[Lori_V]

Hi Marina,
Everyone here has posted very good advice, but you yourself have to make the decision....
Talk to your doctor.....You dont want to take any chances when dealing with your body...You never know what could happen, and really....why would you want to find out? Dont expect a miracle overnight hun........taking more than the doc has suggested could be very dangerous. If its gonna work......it will work....in time.....no need to rush...
Geow has very good advice....I like the 7T's......
Think before you react Marina.
Good Luck and God Bless You,
Love,
Lori

[Penney]

Surfergirl,
I am so happy to hear you found someone "on the ball"!  It is so important!  Keep us posted!
Take care,
Penney

[hyperhepper]

 Thank you all for your wise responses, and I responded accordingly to your advise.
My 4th shot last night about 5:30 landed me on my butt at about ll:00. Flu all the way, fever in the middle of the night. It pretty much drained me. Needless to say I followed Doc's orders and began today with only the 200 mgs. for 1 week.
I wonder though if it makes any difference with the shot if you're on an empty stomach. The only thing I had yesterday was in the morning which was a banana and a yogart. Then I took the shot in the PM  and ate afterwards. Also, I really didn't drink a lot of water yesterday because I had a doc's appt. and didn't want to worry about driving and having to pee.  
Marina

[MikeBoston]

Hi,

I too saw that the success rate for geno 1a on the combo tx is only 42% however you will know if you are a responder after only 3 months of treatment.  I'm wondering if anyone knows what the percentage is of 3 month responders who then go on to clear the virus and remain clear after 48 weeks of tx.  

The 42% refers to the percentage of people who begin the treatment and clear as opposed to 58% who begin the treatment and relapse.  Of the 58%, I'm wondering how many wash out after the first 3 months as opposed to those who go the distance and then relapse.  If a large chunk of the 58% know they're not responding after 3 months then the probability of a 3 month responder going on to clear the virus after 48 weeks would be significantly higher than 42%.  My point is that if you do this treatment for 48 weeks, it's because you responded after 3 months.  Your personal probablity of  success, as a person who responded after 3 months, should be far higher than 42%.....I think.  Does any of this make sense or is this the ribavirin talking LOL.

[Penney]

Hi Mike,
Could be the Ribavirin talking   but, in my case then, the Ribavirin was also hearing......

The stats for success are generalized.  And include people who did not follow directions or missed pills or missed injections.  On the average, those people who followed 'exactly' what they were supposed to do have a higher success rate.  I think the 42% is not realistic.  If, after the first 12 weeks, we respond and then we follow the treatment plan as prescribed, I believe we have a better chance of clearing this then just 42%!

Take care,
Penney

[MikeBoston]

I agree Penny....and I think I asked my nurse practioner if my percentage of long term success increased if it is determined that I'm responding after 12 weeks.  I believe she said 65% was what I could hope for at that point.  THATS A WINNING BET!  I shouldn't count my chickens though, I could very soon find out that I'm not responding.

Non-responders have a lot going them these days too.  Enzon, Scherring, Roche and all the rest are going full blast to be the first to bring a better treatment to market quickly.  I bet within 36 months everyone will have a new option to beat this thing.  But for now I'll keep eating these ribavirons and see where it goes.

[geow]

. I interviewed a GI Doctor in Orlando. He said the statistics include all who fail to get a remission. Even people who don't complete the therapy are included as a failure. People who still drink are included as the TX not working. People who get re-infected are included as the TX not working.
     This Dr, examined the statistics in detail and hypothesized that if we follow directions that we have an 80% chance for remission