Aa
Cut back on riba?
When I went to the dr last week, he told me he would be ok with it if I wanted to cut back one riba pill a day. It is weight based, so I am on 1000, would drop back to 800 mg. He said there is older info to suggest that the 800 would work just as well. I am week 18 of 24, clear at 4 and 12 weeks.
I told him I would hang in there with 1000 mg, didn't want to do the tiniest thing to jeopardize SVR. I have assorted symptoms, the most constant being fatigue & fog. But I'm doing ok. I'm not sure cutting back one riba pill a day would make me feel noticeably better anyway. Normally, I'm the kind of person who cuts medication in half--tries to take the least that will do the trick--so this is weird for me.
What are your opinions?
Laika
I told him I would hang in there with 1000 mg, didn't want to do the tiniest thing to jeopardize SVR. I have assorted symptoms, the most constant being fatigue & fog. But I'm doing ok. I'm not sure cutting back one riba pill a day would make me feel noticeably better anyway. Normally, I'm the kind of person who cuts medication in half--tries to take the least that will do the trick--so this is weird for me.
What are your opinions?
Laika
Thank you for your informative, interesting & funny post! I have not been to too many drs with hepC, but you have confirmed my feelings about the situation...that there is much interpreting going on by the drs ... and the good people here! ...in the end, you just have to stir it all around and decide what you think is best. I'm happy to have everybody's opinions and reasoning. I will stay with the 1000 mg since my sides are bearable and the end is in sight, but I was curious about what you did & your reasons.
On your PCR situation, there is also the possibility that that first labcorp test was wrong, false positive or whatever. Human error always has to be factored in. I wouldn't go another year either!
You're almost done too, and congrats on that. It feels SO good to see the end coming nearer!
Laika
On your PCR situation, there is also the possibility that that first labcorp test was wrong, false positive or whatever. Human error always has to be factored in. I wouldn't go another year either!
You're almost done too, and congrats on that. It feels SO good to see the end coming nearer!
Laika
Laika;
If you are a 2 or 3, the current tx says 800 will be OK. But if you are a 1 do not reduce the riba! Ask for procrit. They wanted to reduce my riba at week 3 because my hemo dropped so quickly, but I said no, just give me the procrit.
Procrit takes about 2 weeks to kick in and in the mean time your hemo might continue to decline ( mine did ) but finally after the 3rd procrit shot it went up and has stayed at 11 or 12. I am on week # 20. Good Luck
(((((( Sue ))))))
If you are a 2 or 3, the current tx says 800 will be OK. But if you are a 1 do not reduce the riba! Ask for procrit. They wanted to reduce my riba at week 3 because my hemo dropped so quickly, but I said no, just give me the procrit.
Procrit takes about 2 weeks to kick in and in the mean time your hemo might continue to decline ( mine did ) but finally after the 3rd procrit shot it went up and has stayed at 11 or 12. I am on week # 20. Good Luck
(((((( Sue ))))))
Hi. Dr. Cecil just told me that most recently (I'm 23/24) so I kept it at 1,000.
Here is just my 2 cents. I've been to too many doctors and gotten too many opinions. They are all different. The truth is they know some things but the rest is just opinions. I'm a person who likes to know all my options, etc. before making a serious decision and for me I have felt a bit like a lab rat. 2s are just not that common in the U.S. With that said, one dr. says that with Peg-Intron you weight-base riba. Another says Pegasys for 2s is 800. Another dr. said weight-base no matter what interferon. Who to believe?
Just as the sensitive PCR's I've posted about previously. Some drs use them and some don't. I did a PCR at 10, 11 and 14 weeks (<50) which by the standards is considered undetectable. All drs agreed that 24 weeks of treatment was sufficient. THEN . . . I did the most sensitive LabCorp PCR at 12 weeks (because I just HAD to be sure - took 3 weeks to get the results) which should have showed <2 if the virus was undectectable. It showed 2 not less than and the dr who ordered the test didn't read the test right and said I was undectable which is why I didn't repeat this test. I found this out only weeks ago. So now there are all kinds of differences of opinions on how long I should treat - from 4 more shots to 1 year more! Who to believe?
-cbee
BTW, I did another LabCorp test again at 22 weeks which was finally <2. So somewhere between week 13 and 22 I got there. At this point with minimal damage to begin with, I'm taking my chances and doing only 4 more shots. I'm outta gas!
Here is just my 2 cents. I've been to too many doctors and gotten too many opinions. They are all different. The truth is they know some things but the rest is just opinions. I'm a person who likes to know all my options, etc. before making a serious decision and for me I have felt a bit like a lab rat. 2s are just not that common in the U.S. With that said, one dr. says that with Peg-Intron you weight-base riba. Another says Pegasys for 2s is 800. Another dr. said weight-base no matter what interferon. Who to believe?
Just as the sensitive PCR's I've posted about previously. Some drs use them and some don't. I did a PCR at 10, 11 and 14 weeks (<50) which by the standards is considered undetectable. All drs agreed that 24 weeks of treatment was sufficient. THEN . . . I did the most sensitive LabCorp PCR at 12 weeks (because I just HAD to be sure - took 3 weeks to get the results) which should have showed <2 if the virus was undectectable. It showed 2 not less than and the dr who ordered the test didn't read the test right and said I was undectable which is why I didn't repeat this test. I found this out only weeks ago. So now there are all kinds of differences of opinions on how long I should treat - from 4 more shots to 1 year more! Who to believe?
-cbee
BTW, I did another LabCorp test again at 22 weeks which was finally <2. So somewhere between week 13 and 22 I got there. At this point with minimal damage to begin with, I'm taking my chances and doing only 4 more shots. I'm outta gas!
Wow... Very confusing, the diverse info in this little thread.
Chev...I also remember my first trip to the dr and him saying it was weight based, that I could do the 1000 in accordance with my weight (which was 154 I think), or I could just do the 800. I went for the 1000.
Cbee...this sounds like what my Dr was trying to tell me. Did you stay on the 1000, or drop to 800?
Laika
Chev...I also remember my first trip to the dr and him saying it was weight based, that I could do the 1000 in accordance with my weight (which was 154 I think), or I could just do the 800. I went for the 1000.
Cbee...this sounds like what my Dr was trying to tell me. Did you stay on the 1000, or drop to 800?
Laika
Praying for you and Mr. Honey. Just know it will go well, God is with you both!
I was put on 1200 riba, a 3a, and was told it was weight based (195lb) lost 15lb and sure hope this jump start will keep me going down, down, down not back up up up on the scale.
I was put on 1200 riba, a 3a, and was told it was weight based (195lb) lost 15lb and sure hope this jump start will keep me going down, down, down not back up up up on the scale.
Tony, you're going to make a wonderful nurse. Your compassion and patience will be real assets in that profession, no doubt about it. Keep on keeping on!
Mr and Mrs Honey? SVR absolutely! You are both in the hands of your maker who loves you dearly. frank
<span style="font-size:12pt;color:#ff00ff;">Honey,
I hope you like this color !! I will be praying that you and MR. Honey are both still virus free. We have come through alot togeather and am pulling for you.</span>
God Bless
TonyZ
I hope you like this color !! I will be praying that you and MR. Honey are both still virus free. We have come through alot togeather and am pulling for you.</span>
God Bless
TonyZ
You all are in my thoughts each and every day. I just know you're going to make it, and it's going to be great to have a little official confirmation that you're CLEAR at last. My fingers are crossed....
YOU got it! fingers and toes crossed! did you request a copy sent to you, I just started doing that as Ina suggested, I can't believe we put up with the long wait to find the results when we don't have to!
GOOD LUCK!
GOOD LUCK!
Laika,,,I was also started on 1000 and changed drs up midway and new doc said I should have been 800 and I could definitely cut back to 800 but I just stayed with the 1000. I already was use to the 1000 and in my head,,,,I felt maybe the extra pill would secure my spot on SVR. I'm so glad to hear that you don't have many weeks to go! Yeahhhhhh!!
Everyone,,,,Please wish me and Mr. Honey good luck as just went and gave blood for 6 month post PCR. I'm really getting nervous again but we have done all we can to beat this thing and that is all any of us can do. For all newbies out there,,,,My hubby and I went through tx last year together and still married lol,,,, and made it to our 3 month PCR,,,Virus Free! So hoping we will have same news to share on 6 month!
God Bless each and everyone of you! I know those that are on tx right this minute,,,its so hard at times and you never think it will be over but there is an end to it and a new life beginning with out the worry of Hep!
Everyone,,,,Please wish me and Mr. Honey good luck as just went and gave blood for 6 month post PCR. I'm really getting nervous again but we have done all we can to beat this thing and that is all any of us can do. For all newbies out there,,,,My hubby and I went through tx last year together and still married lol,,,, and made it to our 3 month PCR,,,Virus Free! So hoping we will have same news to share on 6 month!
God Bless each and everyone of you! I know those that are on tx right this minute,,,its so hard at times and you never think it will be over but there is an end to it and a new life beginning with out the worry of Hep!
[quote]Speaking of fog, your posts since finishing treatment have been increasingly clear and to the point. You must be feeling a lot better.[/Quote]
<span style="font-size:20pt;color:#ff00ff;">Thank-You..!!!!
I am feeling better. My cognative thought prosses is starting to return, again it is just starting. I hope that the pace picks up and before the end of summer I will be able to go back to collage and finish getting my nursing degree.</span>:
<font size="10">Blessings</font>:
<p><b><font size="7" color="#ff00ff;">TonyZ</font></b></p><BR TonyZ
Learning HTML so here goes ----Enter
This is a question I asked Dr. Cecil most recently:
I've been on 1,000 Riba even though 800 is required for a 2. Does that make a difference?
His reply:
It did not help any more in the big study. 800 mg was as effective as 1,000 or 1,200
-cbee
I've been on 1,000 Riba even though 800 is required for a 2. Does that make a difference?
His reply:
It did not help any more in the big study. 800 mg was as effective as 1,000 or 1,200
-cbee
All my adult life I have been one of these people who are "sensitive" to all meds, asprin, etc. Where most people take one or two I could get by with 1/2-1. After getting dx my doctor made it clear to me that the reason why it has been this way is my liver is compromised. That made sense! All this time I thought I was just a sensitive person.
yes! I am sensitive too--many meds have these horrible side effects, and if you just take less, you can avoid them. I'm also suspicious of new meds, having been a victim of hormone replacement therapy hype. I couldn't go to a dr without them trying to peddle that stuff. So I took it, but I chopped each tiny, hard pill in half. Years later, it's apparently really bad for you. So they peddle it in weaker doses now, and tell you not to take it too long. I like to take old meds: tried, true & cheap, when possible. At least I know what to expect, won't find myself on the floor or feeling like a psycho--and there's been adequate time for appropriate studies to be done.
I'm feeling pretty steady emotionally. It's just the fog making me feel like a moron and the fatigue. I think you've sized it up pretty well--one pill this way or that way is not likely to make much of a difference in how I feel. Another experienced comment on this subject.
Speaking of fog, your posts since finishing treatment have been increasingly clear and to the point. You must be feeling a lot better.
Laika
I'm feeling pretty steady emotionally. It's just the fog making me feel like a moron and the fatigue. I think you've sized it up pretty well--one pill this way or that way is not likely to make much of a difference in how I feel. Another experienced comment on this subject.
Speaking of fog, your posts since finishing treatment have been increasingly clear and to the point. You must be feeling a lot better.
Laika
Thanks to you all for your opinons, comments, info! I don't think my hgb is low, that's the thing. It has never gotten down to 10...usually hovers in the 11-13 range I think ... I believe was actually up slightly on last week's labs from the time before, but I will order copies to double check.
I was pretty sure your recommendations would be to stay with the higher dose, but I'm glad to hear the reasons.
Califia...I was glad to hear from you, hoping you'd share your experience with the difference 1 riba pill was likely to make or not make in terms of how you feel. Not likely to change my life much, I gather. I think what the dr was trying to say with the "older info" was that nothing new had come up to refute it. He may have been speaking just about geno 2's, or geno 2's with EVR.
TriHepGuy...good to see you around. Yes, I am a stage 2. I'll stay with the 1,000. Your good advice has made this road a lot easier.
Dragonslayer & Dutch Boy...yes, I'm geno 2. Very interesting about the 800 mg riba being the recommended dose for geno 2's. I guess I'm not sure what I'm doing on 1000, but it doesn't seem to have hurt me any so far and may be helping.
Susan--are you going to Dr Johnson? Glad you have a new plan.
By the way, my last labs included a TSH too, which was normal (although when I get a copy I'll make sure).
It may be that the level of fatigue I feel is just the way it's going to be on treatment. As long as I'm able to function, it's ok. I fit in naps and periods of rest, ignore a lot of housework, don't take on any new projects. This is not the way I usually do things, but it is what treatment has taught me.
Thanks again for your inputs.
Laika
I was pretty sure your recommendations would be to stay with the higher dose, but I'm glad to hear the reasons.
Califia...I was glad to hear from you, hoping you'd share your experience with the difference 1 riba pill was likely to make or not make in terms of how you feel. Not likely to change my life much, I gather. I think what the dr was trying to say with the "older info" was that nothing new had come up to refute it. He may have been speaking just about geno 2's, or geno 2's with EVR.
TriHepGuy...good to see you around. Yes, I am a stage 2. I'll stay with the 1,000. Your good advice has made this road a lot easier.
Dragonslayer & Dutch Boy...yes, I'm geno 2. Very interesting about the 800 mg riba being the recommended dose for geno 2's. I guess I'm not sure what I'm doing on 1000, but it doesn't seem to have hurt me any so far and may be helping.
Susan--are you going to Dr Johnson? Glad you have a new plan.
By the way, my last labs included a TSH too, which was normal (although when I get a copy I'll make sure).
It may be that the level of fatigue I feel is just the way it's going to be on treatment. As long as I'm able to function, it's ok. I fit in naps and periods of rest, ignore a lot of housework, don't take on any new projects. This is not the way I usually do things, but it is what treatment has taught me.
Thanks again for your inputs.
Laika
I am like you, I cut most pills in half because I am more sensitive to meds. I will tell you this, the above post are correct. I don't think your saying your RBC is low, I believe your mostly speaking about the SXs, 800 Mg of Riba is going to produce the same SX as 1000. I have been on 1200, 1000 and 800Mg's. I did not notice any difference with the emotional SX.
God Bless
TonyZ
I believe what Dragon Slayer just suggested is correct. I am not a Geon 2 but I was under the impression that 2's and 3's should be on 800mg of Riba and it isn't weight based for those genos. It is however weight based for 1's and 4's. I confirmed what I thought to be true by going to the website for Pegasys and under the heading "complete Product Information it states that the dosing recommendation for geno 2 & 3 is 800. So IF you are having a really difficult time and want to cut back on the dosage according to this information you should be still o.k. and not jeapordize your SVR chances. I however personally would if at all possible stay on the higher dose as so much new information is coming out about how important higher dosages of Riba are for a sustained SVR outcome. As everyone else has mentioned..get the hemoglobin checked as you may need Procrit. Sooner the better as it took 3 weeks for mine to "kick in". It sounds like you are toughing it out and want to stay the course of 1000mg. Good luck to you and I hope you feel better soon.
Scott
Scott
By doing a 24 week course you must be genotype 2 or 3. As far as I know (being an ex-2B myself) 2's or 3's should only take 800mg of Riba since that's the optimal dose & is not weight dependant but a standard dose for this genotype. The Peginterferon on the other hand is weight dependant....pls check your facts again.
Best of luck to all,
Ben
Get the Procrit! Try not to reduce the dose of Riba. My previous doctor did that to me, reducing the Riba and I feel like it's been what has keep me in a non-responder mode. Now I'm with a new doctor and when I retreat, he's going to give me a higher dose of Riba with the Procrit beforehand for 2 weeks, then start the Hep C treatment in addition to the Procrit. I might need to have the Neupogen added in later if my white cells drop again.
Susan
Susan
Ditto on getting the Procrit rx now, assuming that a low hemoglobin count is at play here.
Nothing as frustrating as getting an rx you want to use right away, and then having to wait up to a week with calls back and forth between insurance company doctor's office and pharmacy.
Procrit takes on average 2-4 weeks to kick in. It's not an instant fix but it's a blessing when it does start working.
Nothing as frustrating as getting an rx you want to use right away, and then having to wait up to a week with calls back and forth between insurance company doctor's office and pharmacy.
Procrit takes on average 2-4 weeks to kick in. It's not an instant fix but it's a blessing when it does start working.
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