riba dosing

[Myown]

if doing weight dose riba,,,at 145 lbs, how much riba per day would that be 1,000 or 1200? I seem to have gotten 2 differnt answers from to consults who both believe in weight dose. Now i don't know which one to go with.

[Myown]

The other day I was getting mad on the phone with some computer repair tech in the Phillipines or wherever they route calls these days and realized it was more of a reflex reaction than real anger cause it was only my computer and not my riba or peg. LOL.

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lol,,its okay,,,you CAN call it'Residual Riba Rage'(R.R.R),,lets blame it on that.ha!

I know what your saying as far as the routing of calls to foreign lands,,very frustrating,,but then again even going to a store and trying to find someone who 'understands' English...,,okay they may speak it(limited) but understanding it is a different ball game. I went into a major department store the other day and wanted a digital scale. The pre-recorded announcement had just come over the loudspeaker telling the shoppers to ask their trained sales people for assistance,yada, yada yada.


When I asked the sales girl to point me in the direction of scales , the sales person said I don't know what you're are asking for. So, okay,I cut the girl some slack and nicely explained what a scale was. She then said again 'I really don't understand.' I guess this is what we call an Equal Opportunity Employer.

We spend MILLIONS OF DOLLARS on voting ballots to be printed in different languages,,,forget how many languages,,,but many,,.That MILLIONS of dollars can go into research for diseases or for people that don't have health insurance,,,gets me nuts!!!.If ya don't want to learn the language,,don't vote!! This country is ruined. Ashame...and I blame BOTH PARTIES.

Think I'll run for town council,,but I'll wait until I have Riba floating through my veins,,,I'll speak with more of a passion then. lol
see ya

[jmjm530]

Yes, Pegasys is one dose for all weights, so the 180 is fine and that's what I treated with. I had a similar starting situation to yours and therefore always had 6-8 weeks worth of EXTRA interferon injections in my fridge at all times. Guess I forgot to tell the pharmacy I was starting late :) Same with the ribavirin. Sure takes the stress off of late pharmacy refills/approvals, etc, although it's still important to keep on top of the refills or one day you could find yourself without those reserves. If your pharmacy is like mine -- my insurance company had a mail order pharmacy -- one day you'll find your rx has run out and you'll need a refill. NO warning in my case therefore, again -- good to be on top of things as it may take the doctor's office up to a week to get their act together, i.e. getting on the phone with the insurance company. Ugh!

All the best,

-- Jim

[Myown]

Thanks Jim

I'll have to make lots of notes to myself to remember about re-ordering. I will make sure the script gets called in when I am down to one months supply for riba, if i can do it that far in advance and the interferon,I will be ahead of the game too, not as much as the riba, but a good edge.

Yes i do have the mail order and Thank God I checked it out while under that other doctors care,,the ad pusher.

I have a very amusing story of recent about that too. all I can say is 'amazing,' and Niagra Falls slowly I turn step by step.. unreal,,

see ya later,,

[jmjm530]

I'm glad you're finding some amusement in the treating experience. It does teach you a lot about both yourself and people in general, although at the time it's stuff you really could do without! The other day I was getting mad on the phone with some computer repair tech in the Phillipines or wherever they route calls these days and realized it was more of a reflex reaction than real anger cause it was only my computer and not my riba or peg. LOL.

Be well,

-- Jim

[Myown]

Thanks Jim for your advice. I'll take everything you said into consideration. I have already cooooled down and so my thoughts are NOT to jump ship anymore,,but at least I do have another option, if needed.And guess what??Brown comes to Jersey a couple times a month!!!! right near my house too. Near Valley Hospital in Ridgewood NJ. Thats good for anyone in North Jersey area to know. Dr. A didn't know about his Jersey visits I guess or he would have told me, so I let them know. They are really great up there in Boston. I had another question to ask about something, and I beeped, (you know the doctor that works with him) and he got back to me in a few hours. Unreal,,,they are great.  

I feel so much better today and plus my meds came, correct dosage, 3 month supply, so i don't have to worry of any mix up. The interferon is in the fridge, 1 month supply, but I will call in another order the first week I start because that's the date on the slip.I guess the pharmacy figured i was starting right away. It will ease my mind to have a month supply 'waiting for ME, not me waiting for IT to arrive and God forbid there is a delay,,. That would be scary. And I'm sure a few on forum have had some close calls due to mix ups.

Its 180 dosage interferon that I have. The peg-intron that Dr. A wanted me on(though he said pegasys would be fine) was 120 micrograms per 0.4 ml. Hope that is equal to the 180 pegasys. Didn't realize pegasys comes in different amounts and then I saw SFbay mention 135,,, Well hopefully the only mix up was with the riba and not the interferon.

Can't wait to get the ball rolling!! I'm sure things will work out with the doctors office, just a few errors that needed to be addressed. I do wish I lived in Boston though. I liked that whole experience from start to finish. I felt very 'taken care of.' And for them to suggest to remain in contact is so thoughtful of them and an added safety net for me.

See ya later. Thanks again

[jmjm530]

Dr. B seems to have excellent credentials plus he was recommended by Dr. A, which suggests they might have a good working relationship. You therefore might consider meeting him first and then make a decision based on how you two mesh in terms of personality and treatment approach. Maybe you can get in to see him sooner as I know you're anxious to treat but sometimes it's best to get all your ducks in order first.

What I would ask Dr. B is if he would give you sensitive weekly viral load tests from week 1, like your current doctor. I would also make sure he would agressively intervene with helper drugs like Procrit instead of any dose reductions. And, of course, go over Dr. A's recommendations to be on weight-based ribavirin. Lastly, ask how often you would be able to see him personally or how you would be able to contact him (email, phone, etc) in the event you had questions not fully answered by let's say his NP, if that is how the office is set up. (BTW email is great if the doctor uses it so always ask!) Don't be afraid to treat a doctors visit like an employment interview where you are the employer because in a sense that is what is going on and as long as you ask your questions in ernest, any good doctor will not take offense.

Although I'm somewhat in the dark regarding your current doctor situation, I'm guessing the problem is more with how the office is managed as opposed to the medical treatment itself. What it appears you now have going -- and I'm just guessing here -- is a first class medical team willing to do weekly viral load tests until you're non-detectible and most probably intervene with rescue drugs if necessary and when appropriate. This puts you WAY ahead of the treatment experience curve most people experience -- so you should not lightly abandon ship unless the new ship (Dr. B) sails the same or similar flags. That said, a disorganized office can drive you nuts -- and it could get worse under the treatment drugs so have no illusions -- so it's not a trifle and something you might mentally have to decide to put up with in advance should you remain. Of course, you don't know how Dr. B's office is run either -- as these big city hospitals are not known for their bedside manner --  but maybe you will get to know that a little better if/when you see him.

Wish I could be more helpful but this is a public forum and I understand your reluctance to post your email as I have the same reluctance.

All the best,

-- Jim

[jmjm530]

I'll get back to you later.

[Myown]

Robert Brown,,,i see he was with Dr. j with the win-r. he seems to be all over the internet too,

maybe i'll stick where i am, who knows, just got off to a bad start with several mix ups and i am still a little mad about it, i guess.

maybe just need some cool down. spoke to the camp up north, so that helped my mind a little,,,so i'll see.

i don't want to post my email, but there are things that i don't want to say on board,,so you just have pieces and not everything.

i don't know maybe i'll try to ride it out where i am,,maybe things will get better next visit.

[jmjm530]

Understood. Could you post the new guy's name again, I did look him up before but would like to again if that's OK.

[Myown]

don't really want to say where i am now,,,but if you think about it, you'll know,,,but the other one is who you think

i'll tell you where i am now, once i leave,,,if i do leave

[jmjm530]

Are you suggesting switching from Dr. D to the guy at Columbia?-- just want to be sure before I answer? I don't think the insurance companies care who is treating you as long as a doctor writes the prescriptions and does the necessary approvals. I switched at week 2 of treatment myself.

-- Jim

[Myown]

i am thinking of making a switch,,,if i can't get in to the new guy until february,,do you think i should just start tx with current doc as is scheduled and then go to new appointment?

called someone else, whose highly reccommended by Dr.A, and the desk is seeing if she can get me in before feb,,,but now i am thinking,,,no big deal as far as starting tx where i am, then switching, right?

i am concerned about the papers i have to fill out that will be sent to insurance,,,will insurance contact current doc or anything,,wouldn't want that. or will they have a problen with me switching once tx starts?

maybe if i call the girl back and say the feb appointment is okay, but i will have already started tx. I don't want to have to wait until feb to start if i already have starting date here.

i'd appreciate any insight or personal experience you have.

[52TELE]

I believe the current thinking is 12.5mg/kg.
There are some camps that are thinking as high as 18mg/kg for non responders. Please verify this , but thats the information as I understand it.

[jmjm530]

They showed me by injecting into a piece of rubber. You also will probably get a hand-out with step-by-step instructions / photos plus a video. Are you doing Pegasys (pre-filled syringes) or Peg Intron (redipen)? Maybe hubby can come by for the instructions and help you with the first couple of shots at home?

If you don't feel comfortable doing it yourself the first time -- or having hubby do it --  then maybe best to let the nurse do it in the office. I'm sure some here will disagree, but I never noticed much difference with or without the Tylenol. I ended up taking the Tylenol before my first few shots and then did them without Tylenol. Again, no difference. I would not worry about that in terms of getting the shot in the office or not. I suppose you could always take the Tylenol after the shot if you felt it necessary. If you do end up taking the shot in the office, ask the nurse to let you do the shot and have her supervise as opposed to her doing it. That way at least you will learn how to do it yourself.

-- Jim

[Myown]

thats a great idea to just be shown how to do the shot, rather than doing it there. This way I wouldn't have to see if they can fit me in the day before, as you mentioned, for VL.

how do they show you show you as far as shot? saline solution? Or just explanation of 'how to.'

the np hasn't even mentioned to take tylenol before i get there, so I am really wondering where am I. Especially when you are making the effort to go in there, which is a pain in the neck in and of itself.

do i definitely need tylenol? maybe they were going to tell me when they called to confirm, but to me thats something you go over incase receptionist forgets,,though the receptionist that i dealt with today tried hard to iron things out. I appreciated that. What a headache i have. Such a joke the way people do things. Nobody cares.

thanks again Jim, you're always such a big help.

[jmjm530]

As to the Ads -- don't be surprised if they are suggested to you. This is normal protocol in many offices. If after listening to what they say, you still don't want them, just politely say you'd like to see how things go without them first as opposed to spinning your head or breathing fire :)

-- Jim

[jmjm530]

I guess what I'm trying to say is that it's not the end of the world if you don't take your morning ribavirin the day of your shot -- I'm sure those here have done it both ways. The important thing is that you get your dose situation straightened out and have weekly labs (CBCs and Heptimax) that the doctor reviews. And make sure you get your own copy of all of the tests. This will put you way ahead of the game.

-- Jim

[jmjm530]

I'm assuming you're seeing the Dr you said you might...

If so then you got the best doctor but perhaps not the best office staff, which is typical for many big city hospitals. Just means you will have to spend a little energy working the system.

A couple of suggestions:

1. Try and schedule your first appointment for any day but Friday. Then, when you get there, let them take your pre-tx blood, making sure they order Quest's Heptimax. Always good to double-check. Then tell them you want Friday to be your shot day because of work, etc, so you'd therefore like to do the shot at home Friday night after work if they show you how. That's how most of us did our first shots -- by ourselves -- no big deal. Now you got your blood taken and you can take your first dose of riba friday morning with bkfast and your second dose with dinner and your first shot before bedtime.

2. Schedule your next appointment so that they draw the blood for your next viral load test the day of your next shot or the day before your next shot. So assuming shot day is Friday, make your next appointment for the next Thursday or Friday.

3. Eventually, after a few weeks -- and assuming Quest labs takes your insurance -- ask them for a stack of pre-filled Quest Requisition forms so you can do the tests at your local Quest Center. This will now give you more control over when you get your tests, etc.

If all of the above doesn't work out, just do the best you can and try not to stress out. You are in very good medical hands and as long as you have the right doses and frequent tests and visits -- things should work out. And don't be afraid to insist on seeing the Doctor from time to time instead of the PA or nurse. If you ask, you will receive.

All the best,

-- Jim

[Myown]

hit by accident...

handed over the plan, it was a done deal,,,but something wnet wrong,,,more to it, but as i said,, only so much i can say, ya know.

so hopefully things get better soon

[Myown]

thanks jim,
i did tell them today that i want the non generic. Your absolutely right. good point. i was concerned about trying to swallow a huge pill like that with possible nausea.

i am very concerned about not having the riba the first day and i DO believe it is a convienence thing for the nurse. i hate to say where this is, but you know from me mentioning and I am quite surprised that things are not so great so far. too much confusion it seems,,,possibly due to high volume of traffic.

the hepamax (sp?) is the test. but why she wants it done right there, i don't know. the way i understood it was she will do the few weeks there, I guess until i clear and then i get them done here.

i have to call the receptionist tommorow because I said after everything i have been through at this office (and there is more that i won't put here)I want to make sure my next appointment is correct. (her computer was off at this time, after hours) maybe i will tell her tommorrow that i want her to ask np to let me get hepamax here the day before and then go there the next day,,or even go there the day before as you said.

next all i have to hear is that i am in need of an 'ad.' maybe my requests will be viewed as neurotic. meantime all was THEIR FAULT,,,which the receptionist knows. well whether it was pharmacy or them,,,to me its easy, tell the pharmacy to send back a copy of the prescription they received.  the nurse is saying she put 1,000, the pharmacy is saying it said 1200 and I when i said Doc A wants me on weight based,,,,and handed over

[jmjm530]

Par for the course with pharmacy mistake, etc. Glad you finally got it straightened out, it can be a real PITA. You have to double-check everyhing these days, including everything coming out of your doctor's office. Half the time I think they get patient histories mixed up so critical you know your own!

Yes, you want the PCR blood taken BEFORE any meds, but I suggest you become a little proactive and tell the nurse you prefer that the blood be drawn either the day before the first shot,  or very early the morning of the first shot, so you can take your full 1000mg of riba the first day. Sometimes you have to *insist* nicely, otherwise they do what fits their schedule best.

Next, clarify that they will be doing *PCRs* weekly in the beginnning as opposed to CBCs. Several here posted that their doctors were going to do weekly PCRs only to find out that only CBC's were ordered. Also, you want to ask what is the sensitivity of the PCRs they will be using. You really want them to use a test that goes down to at least 50 IU/ml and preferably a very sensitive quantitative like Heptimax that goes down to 5 IU/ml. The standard tests with a sensitivity of 600 IU/ml don't really cut it these days except for maybe the first week, but even then you will be left in the dark -- should you clear early -- as to whether you were really non-detectible or not. You've probably seen this happen in post after post here. The way to prevent this is to take the sensitive tests right from the beginning.

Lastly, and no big deal, but if you can switch to one of the non-generic ribavirins like Copegus or Rebotol, you will not only end up with a smaller pill size but will have more flexiblity in the event that either you miss a dose and have to make it up, or for some reason want to slightly increase or decrease your dose. That's because Copegus and Rebotol are 200mg each. Again, no big deal here but just some more flexiblity.


All the best and Happy Holidays,

-- Jim

[Myown]

I posted earlier, but I get the 'error thing,' on this side, posted above and it seems to work ~fine~ now.

I can't go through the whole story, tired, ~zapped~ of strength at this time,,,but in short,,there was an error and pharmacy sent 1200mg instead of 1,000mg.

just got off the phone,,on it all day,,doctor office, insurance etc,, unreal,,,stress for liver is no good?? what a joke!! dealing with insurance, doctors, pharmacies are stress producers.

I know from what I've read from you guys, the fun never ends,,but for today things got fixed, but i paid a price,,i have a horrible headache and i was pumped up to start and now i have to try to get myself pumped again, because i am down after today.

Thanks for everyones help and encouragement. those who pray, say a prayer for me that all gets taken care of the right way and that i svr too. you guys are in my prayers daily. i pray for a miracle for everyone here and i do this daily, for real, and i see God does answer, I give Him the glory.

'Supposed' to start in january.
thats when my base will be drawn for vl. I guess thats why i won't be taking riba in the morning(?) the nurse said she likes to do the first labs right there at the  hospital.  pcr's first 4 weeks,,,so thats good at least. after the 4th week, i don't know. she expects und early on,,fingers crossed here, feet too.

head is killing, going to take a shower, maybe will be back later if i feel better. see ya

thanks again

[jmjm530]

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[phil]

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