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.
do you have to take the procrit from now on or did they say its just for a while? you would think i know all these answers by now, but i can read and read and not until i do something does it sink in,,,but with this stuff and the way it effects the mind, it probably won't sink in...i will have to keep a journal of every shot, and riba pill, I'll over dose for sure if not. I have brain fog before tx, God only knows the mush brain I'll have during
I was 145 and was put on 1000 Riba. Now that I have gained 7lbs, dr. F says he would up my Riba dose to 1200 or more. We are waiting for TMA. Plus since I have had both Aranesp and Neulasta it may not be necessary.
The hematologist wants my HGB at 12. Right now it goes between 10 and 10.5. They just increased my Procrit because I have been at 10 for a while. Once I hit 12 I will still go every week to be tested and as long as I maintain a 12 no need for additional shots. I take my Riba in am w/breakfast and w/my evening meal. makes it easy for me to remember. The brain mush is unavoidable. I have sticky notes everywhere!! You will be fine. I was and still am a big big baby on tx.
Weight based for 145lbs is 1000mg/day. Normally, first dose of riba is taken the morning of the first day with second dose and injection to follow in the evening. Florida Guy and a few others have pre-dosed ribavirin a week or so before the first shot. Something to discuss with your doctor.
thanks jim. i will have to call tommorrow. i wasn't told they were raising the dose from what was on the plan i gave them.
also i was told i would be just getting the shot in the afternoon at the office , and the way i understood it, the riba would be taken the next day.
also the pills are 600mg each, huge (to me) blue tablets. does this come in capsule form? capsules have much better absorption. i don't even take tablet vitamins,due to absorption problems it can cause.
this whole thing is ticking me off that the plan i gave wasn't followed. what was the sense of going up to boston then? But, when i mentioned the weight based,there was agreement, but never told me they thought 1,000 was not enough.
possible error too. everyone has a bad day once in a while.
let me know if there is capsules with the riba. the solid pill does scare me as far as not absorbing properly, but if there aren't any capsules, i'm stuck with these.
Not sure who "they" is. Are you starting treatment then? With Dr. D or a doctor in NJ? Weight-based is 1000 mg/day for your weight of 145lbs. What dose did Dr. A suggest? What dose did your treating doctor suggest? Ribavirin does not come in capsules to my knowledge. It comes in tablets like you have. Again, usual protocol is to take the first riba the morning of the first injection followed by a second dose later that day. I can't tell you not to follow your doctors orders but I can tell you that is what I was told as well as many here.
My riba was 200 mg per tablet. So I took three in the morning and three in the afternoon for a total of 1200mg/day which was weight-based (actually a tad over) for my weight. Since then, I've read they now have different dose formulations so perhaps that is why your tablet is so big. Just double (better triple) check that indeed your tablets are 600mg each and not 200mg each. You want to make sure you know exactly how many milligrams of ribavirin is in each tablet.
maybe this is what your'e taking? It comes in 400 and 600mg tablets. In my case, my brand of ribavirin was called "Copegus" and manufactured by Roache. Three Rivers is a newer, generic brand I believe.
You know, rather than second guess the doctors, why don't you put a call into Dr. A's office tomorrow morning and speak to one of his doctors and ask them how much riba they recommend. I'm sure Dr. A will get back to you within a day or so.
Sounds like you'll have a lot of questions to ask. I specifically asked if I shoud start the riba in the am and the nurse said "sure most people don't ask that"
I was able to get 2 doses of Riba in before the shot. Felt like a little head start. Good Luck! When is your first shot?
the pills are just 2 a day. came in a packet AM and PM with 600mg each.
I'll call tommorrow and see what the scoop is. I feel better now knowing there isn't capsule form. Not to get gross, but because of going to holistic doctors I have found that when you have to send a stool sample into a lab, you then find out that your body doesn't always break down solid vitamins. True, really, seen it with my own eyes. Spend all the money on vitamins and some come out the other end in almost its original state. So I panicked when I saw the solid pills, but if thats all there is,hopefully its made up of something that breaks down better than solid vitamins. I only take capsule, liguid or powder vitamins now.
My friend is blowing the horn outside, gotta run. I'll let ya know what happens.
I was on Procrit. After a few months my hgb got up to 12 and was told to skip it until it got below 12. I skipped two weeks. I don't advice this.
After two weeks I was back down in the 9-10's and it was a real catch up from there. Once you get close to 12 maybe reduce but don't quit until you know you are going to stay up above 12. Remember Procrit takes a few weeks to kick in and the same when you reduce or stop. End of tx after slowly I slowly reduced it. From 120 to 80 to 40 and my hgb went up to 14.?. A couple weeks later it dropped to 12.? somewhere around 2 mo post tx.
I am going to ask to have it checked this week and am just over 4 mo post tx.
myown -- I think the weight-based cutoff for 1200 mg riba is 165 lbs. However, it certainly would not hurt to start higher than that. You can always back off from that if you become too anemic. It takes weeks for the ribavirin to reach it's ultimate serum level (where the amount stays constant) in the bloodstream. I don't think it matters if you take the riba the day after or the day of your first injection. I picked up my rx from the pharmacy after work that first time, and took the riba with dinner and the first injection that night.
Procrit - like Merlino said is based on the CBC results. I think it is important to get them right away. I would wait at the hemotologist's office for the results after the draw. I think all of us hoped it would be a temporary fix and we could stop, but I can't really recall anyone on this board who started Procrit and then stopped. Seems like the longer you are on the riba the more you need the Procrit.
Don't let it scare you. Understanding how Procrit works is your best weapon and to watch your hgb trends. Some of us are more sensitive in regards to hgb drops, both in the actual drop and how we handle it. I'm pretty sure there even some who only needed it for a few months and were able to maintain the balance of tx on their own, although most need it til the end.
My hgb dropped so much the last part of tx because I was put on Neumega for a week. That's a whole nother story. Procrit can make the difference in making it to the end, it did for me. It is a whole other journey back to health after tx that is much more enjoyable with many more good milestones.
How much are you on and where are you on tx? I just can't keep up with everyone lately.
In your case, since to take 60 and they give you 20 vials (they did for me anyway) maybe when you do get to 12 you can go down to 40 or 20 to maintain. That would be peachy keen! I hated the 60 cause I had to fill the syringe with 3 ml. If I had a 40 leftover I would only need to fill it with 2 ml cause each vial's volume is 1 but it added up to 60 Procrit. Ya gotta play with this stuff sometimes, lol.
Some have had luck doing two injections per week spread out. I just kept dropping so stuck with one total injection per week.
Also, with Neupogen you want to wait 24 hours after Peg injection to do it. It isn't as important with Procrit. I would only do one kind per night til I knew what my reaction would be. If I had a reaction I wanted to know what it was from. I never had to worry about it but once I had a routine I stuck with it.
Good luck. You have a lot of folks around here who will give you all the support you need.
I guess you are fixing to jump on the bandwagon to no return lol I would think your weight,,,,riba at 1000 but the 1200 would certaintly take care of it! Let us know what you end up starting with and whats the date? Good Luck!
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.
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.
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 :)
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
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.
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
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.
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.
My dr. gave me a script for 1200 riba and 180 pegasus. When the delivery came it said 135 pegasus and 1000 Riba. I called the dr. He in all his great wisdome told me he thought I was 165 lbs, thanks! I said I wanted to take the full shot, he said go ahead if you can handle it. I think the pharm messed with the script the dr. wrote. NOt sure how that works, but with all the mess ups, I believe it happens.
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.
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.
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,,
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.
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.
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!
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.
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.
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
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