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I think there are different bodyweight to dosage levels dependant on drug co. Did read your thread yesterday and was too tired to post then! All my stuff is Schering-Plough manufactured. I hope you sort yours out and I hope your tx is successful. I shall query it with my Doc. quoting the mgs per pound cos in pounds I weigh 183 lbs X 6.25mg = 1143.75........surely closer to 1200 mgs daily than 1000. Good luck!
Forum full........but I had to tell. Only after 2nd shot, and two weeks of Rebetol, my ALT is down from 150 to 102. AST from 82 to 66. GGT from 98 to 96. Nurse says this is positive results even for such an early stage.
Sure did make me feel like I'm on the right track.
Okay, I beginning to get these anxiety attacks again about my reduction in meds.
I started off on 1000mg Ribavirin per day & .5 pegintron. Genotype 3a, started tx Dec 1st.
Within the first 6 weeks of tx, I had my Riba first reduced to 600mg per day & then a week later had it reduced to 400mg per day, pegintron reduced to .45, which I'm told I will stay on these doses until the end of my 24 weeks, I'm currently at shot 10.
I have never heard of anyone else on this forum, taking such small doses as I am. And every chart I look at on weight base or whatever states that the higher dose is 1200mg Riba per day & the lowest is 800mg riba per day, no mention of any taking 400mg a day! SO WHY ME??????? My hep c nurse said it wasn't worth raising my doses again as my body couldn't take it with the weight loss & all, & it could lead to other health issues for me! I always thought I Was healthy until Hep C! I'd like to up the riba myself, but can't as they bloody count them out on every monthly visit! Have i got something else wrong that they're not telling me about? How come most people here can take these doses, but I CAN'T????
It doesn't make any sense to me! They won't prescribe Procrit or Neupogen to me either! What the hell is going on with me! Am I ever gonna make it???? I have my 12 week test in 2 weeks but won't get results for anything up to 4 weeks later! This is driving me to the brink of despair again!
Please help....I'm really getting scared again!
Many thanks
Louise
Thanks for your prompt reply.
I'm told Procrit & Neopegen aren't standard practice here in the UK for some reason...probably cutting corners & saving money, is my guess?
It really doesn't help trying to focus on being positive, anymore, I'm dreading my 12 test but won't get the results for another 4 weeks after that, so I geuss I'll have to guess some more & worry & worry until then! What else can I do??????
Louise
Hello, Louise,
Check out the NIH Consensus Statement on standards of care for chronic HCV. I believe they not only give dosages, but also urge the use of Procrit and Neupogen to help us stay at the standard dosages. NIH is the main government body in the US for medical info and research; they dole out much of the research $$.
<http://consensus.nih.gov/cons/116/116cdc_intro.htm>
It may happen that even with Procrit and Neupogen your blood counts go too low; in THAT case the tx dosages may need to be lowered. This happened to me; I was off Riba during weeks 24-27 (NADA!), and missed about 1/3 of the riba pills during the last 24 weeks overall. I'm still very anxiously waiting for my end-of-treatment results, taken 16 days ago!
Good luck to you. You're right to be advocating for yourself!
Maj Neni
16 DAYS!!!!! I can get mad for you...got pretty good at it last week : )
Speaking for old school, old guy, stubborn american I think we shouldn't use that weird metrick stuff. I know in the old days we used to by pot by the kilo for a hundred bucks but doesn't kg have something to do with atomic bombs..... Sorry, but I'm starting to feel like my old self being off that AD. Kinda fun.
ha ha ha you do realise darlin, that the good ol U.S of A. is the only place left on the planet i think now that uses the 'imperial' system eh???? but i feel for yah....i am the same with languages....i STILL translate everything into english/imperial and THEN other languages/celsius etc....all really FAST in my head first....weird....change can be doable but difficult....oh okay....it can be a pain in the butt!!!!
I've never understood the dosage thing as I have always had to take 1,200mg riba daily, from the beginning. Even when I cleared the virus, I begged my GI to let me take a smaller dose like a possible 4 pills; 800mg daily, instead of my 6 pills;1,200mg.
My GI said NO he will not lower the dosage of the copagus pills for me and said, full speed ahead darling.
I only weighed around 140 when starting treatment and now, haven't lost too much weight but after 40 weeks of these medicines I weigh about 132.
Keeping with the standards, wouldn't 1,200mg be too much for me at 140 lbs and wouldn't 1,200mg be too much for me at 132 lbs. I believe I'm on the highest dose due to my biopsy showing considerable liver tissue damage.
Ok guys and gals. It's "supposed" to work like this. They check you out at the start of tx. Remember ALL those tests? Well, they decide what doses you are supposed to be on(usually based on weight) and you are off and running. It is NOT normal to reduce the doses just because you lose some weight. The CBC tests usually determine any necessary dose reduction. To reduce doses in "anticipation" of a problem is NOT normal. Killing The Dragon has GOT to be the primary goal in all this. The reason for the Procrit and Neupogen are to help keep us on the max doses possible to accomplish this goal. There are very definite "markers" that the docs can use to decide on the need for the "assitance drugs(procrit/neupogen) or a dose reduction. It pisses me off when they do dose reductions in "anticipation" of these levels.
We all need all the meds we can possibly stand. The Dragon is one tough cookie. He will not go down easy. I am not all that current on the actual cbc numbers that are the danger levels. Perhaps MajNeni of Willing have them at hand. My best guess are whits counts....1.5, red counts...below 10,....neutrophils...below .75.....and there are others depending on our specific problem. I think too many docs just take the easy road and reduce the doses to compensate for this. But that also reduces the odds of winning this battle. You really need to be "In your Face Active" on this subject with your docs. Most of them are really not sure of what they are doing in this area.
I was reduced on my peg for 3 weeks late in my tx due to low white counts after several rounds of antibiotics for a dental problem. But, I made him raise me right back up once that problem cleared. Another doc I consulted with said that HE would have Neupogen instead to get the same result without a dose reduction. I was ok in the end because it was late in my tx and the Peg means less in the late stages.
Do your research and go to your appointments "ARMED" with all kinds of info to change their minds if need be. In the end, This is YOUR tx. YOU are the ones IN CHARGE of what happens to you. If you choose to take a chance on lower blood counts the that should be YOUR decision. If you go in to your appointments armed with info and desire you will most likely get your way.
DAM THE TORPEDOES! FULL SPEED AHEAD!!!!!!!!!!!!!!
Whoa Nelly, Whoa - that's 20mg/kg! From what I've seen on this forum Drs take <em>very</em> wide latitude with riba rx and reductions, but that's off the charts. Either you're unwittingly enrolled in a research study or your GI feels very comfortable wandering off the beaten path. At 800 (4 pills) you'd be at optimal dosage per the recent study cited in yesterday's post. You might show him that study and the relevant part of the NIH consensus statement and ask what his malpractice premium is running at. As far as I know there is no link between higher riba dosage and fibrosis reduction. How are your Hgb and ANC holding up?
My husbands neutrophils for the past 2 weeks has stayed .60 and he is suppose to give blood again tomorrow to see if it comes up some more. My question is...could it be making him sick by being so low or would you even know if your neutrophils were low other then a blood test? He can't seem to shake the cold, cough part which we know could very well be a side permanent even but lately he is just running totally on empty and feeling like hell. I love it "Full Speed Ahead" You are such an awesome person! Thanks
If you were in my shoes seeing the doc tomorrow what would you ask him in reference to my dose reduction due to ins. would only pay for 1200mg. To refresh your memory I have been on 1400mg for 1st 24 weeks. I was over 250 lbs at start. Lost 30 lbs but have put back on about half that now. If I could get by with 1200mg then why 1400mg and if 1400mg is better why not talk to me about paying dif out of my pocket. I'm 54, 1b low vl, minimal damage clear at 12 wks. Needless to say I have lost all confidence in this guy but changing horses at this point may not be the best bet right now. I want a good explanation for this instead of being blown off by the nurse saying it shouldn't matter. BTW 27/48
Louise, there are some trials going on now with genotype 3 and lower doses of meds. Better get some frank answers-- but take heart in the fact that it may be purposeful and effective. lets hope.
Remember that you are a 1-B. This is the toughest, most stubborn genotype to treat. Riba dosages of 1200 mg./day are appropriate for 1-B's who weigh 175 lbs. or more. Many docs. use a sliding scale for Riba up to 1400 mg./day for their 1-B patients, figuring that weights much higher than 175 lbs. call for more Riba. to be effective. I think that 1400 mg. is about the ceiling as far as the medical community and their comfort level on both safety and increased effectiveness. Who knows for sure where that 1400/mg. weight/point starts...220 lbs.? 240 lbs?? 250 lbs for sure, I would think. At the same time I think you will find a LACK of universal agreement among docs that the 1400 mg. really increases your odds of SVR. Most would probably propose that it is better for a 250 lb. male with type 1-B. It makes great sense, IF Riba really works on a weight based modality.
So in summary, if it were me, I would pay out of pocket for the extra 200 mg/day, and give it everything you have. I relapsed once , probably due to sub-optimal Riba levels, and on my most recent tx stayed at 1200 mg/day for 52 weeks (using Procrit most of the way) and then 1000 mg. Riba/day for the last 20 weeks.( I did 72 weeks Peg/Riba total tx)
I weighed from 180 lbs down to 170 lbs. during tx. The reduction in Riba. to 1000 mg. was NOT voluntary, but due to dangerously low Hemo. levels, in spite of high Procrit doses.
I am still clear at three months POST Tx, and hope to remain clear permanantly this time around. Don't mess around with this genotype, and keep your dosages as high as possible (safely) from beginning to end. Then you will know you did everything you could do to eradicate this virus. You do not want to relapse, and have to go at it again!
Also, read the recent study (Gastroenterology Journal)comparing 1 year inf./riba in 1-B's to 1 year inf./riba Plus 1 year low dose inf. daily dose with no riba for 1-b's. Results shows something like 38% SVR for first group, vs. 83% SVR for the second group...demonstrating the value of EXTENDED tx for 1-B's.
(on a different theme from Riba dosage). So do whatever is necessary and do it ONCE. Get your SVR and move on with life.
Honey....He could use a shot of Neupogen. The Neutrophils are part of what we use to make the while blood cells. When those are low we are open to all kinds of bad stuff...like infections and things. That is our body;s mechanism that is used to kill off all the bad stuff. I have seen some of the more agressive docs let them drop lower, but they are really hoping for the best and figuring that they can always use other meds to fix you up if you get something bad. If his counts are that low then it is good that they are montitoring him VERY closely. He could get REAL sick REAL fast with counts like those. He will probably not even be able to fight off even a cold with counts that low. Lets hope they come back up, or he is prescribed Neupogen. Usually just a couple of shots are sufficient to help.
Bill.....WOW. 1400 of Riba!?! Thats some stiff stuff you're doin there. There is some evidence that the higher doses are better for type 1's, BUT...we have to temper that with the results of the blood counts. If your counts are all ok, then I would press for the higher levels of meds. But 1200 is normally enough. Still, if they will support your efforts to stay at the higher doses, then I would ncertainly do so. Just watch those red counts REAL closely while you do this. Maybe a cbc every 3 weeks or so? Take care buddy..............
I had this conversation with my GI yesterday. I'm 2a, 140,000 vl, undetectable at 12 wks. My Pegasys was reduced to 75% at week 13 and then to 50% at weeks 14 & 15. My Riba has remained the same at 800 throughout.
I asked yesterday for an increase to at least 80% Pegasys and was told that it will depend on today's blood results, but so far they have gone in the wrong direction over the last 5 weeks:
WBC went from 1.3, 1.6 1.2, 2, 1.8
RBC went from 3.27, 3.33, 3,21, 3.65, 3.43
Platelets went from 125, 107, 113, 147, 150
Neu% went from 32.3, 34, 37.6, 39.2, 37.8
AST - 37 - last week
ALT - 42 - last week
Doc says he WILL NOT order Neupogen because I'm 2a, undetectable at 12 weeks and it's very expensive. I complained that my ins. company would cover it and he still says I'm not a candidate and it's not standard care. He would only consider it if I don't attain SVR. If today's blood is better he may let me go back up to 75-80%
I can see that my blood counts are improved with the lower dosage of Pegasys, but, of course, I still worry about clearing. My best hope is that the reductions didn't start until after the critical 12 week perios.
Hi Bill, the point of the weight-based dosing is to keep a constant ratio of drug molecules to cells. The virus typically makes copies of itself in our liver cells and having riba around is like throwing a wrench into its copy machinery. More cells require more drug and 6.25mg/lb, fow 1s, is the best estimate we've got for now. Trouble is, the drug packaging, dosage guidelines, existing studies, etc. only allow for two sizes 1000 and 1200. I agree with Doubledose on this - your Dr. probably went outside the usual dosage guidelines to keep up your mg/lb. Assuming you've had no problems with anemia, it's possible the reduction to 1200 is just response to insurance co pressure to stay within "the standard of care". If it were my choice, and the 1400 hadn't caused trouble, I'd keep it up.
doubledose : sounds like an interesting study: do you have an author or date? thanks.
To: **********Yippee From Steve In Australia**********
Hi to all my dear friends I've come to know on this site over the last six months of my Tx I've just returned from my liver specialist appointment with my PCR test results & oh boy they're <b>NEGATIVE</b> I was so nervous as I told you all but a good result I was so relieved when I left the docs office I shed a few tears walking to the car .... Recap: I <b>Was 3a</b> haha I can say that I think, I'm 45 years young & I still have 1 week left of Peg+Riba Tx to make a total of 27 weeks instead of the regulation 24 Phew I say, I will do the last week standing on my head ... I made it!!!!! Now the Dr said to me that we have either suppressed the Hep-c or killed it & after stopping Tx for 6 months we do the blood test thing again for another PCR test to make sure & I think they use the cured word then .... Good Luck to you all I hope this inspires everyone just like I was inspired reading all your posts ... <b>Thank You All</b> Always think of the "Goal"<b>...Steve...</b>
The schering plough website has got a section on prescibing information which is quite interesting. I cant say ive ever heard of reducing dose because of a small weight loss. Where in the UK are you being treated? I was at University Hospital Birmingham Liver Unit during 2002, now clear!
Hi there, Indi,
My hubby & I worked out my weight on the last weigh in, 3 weeks ago, at being 91 lbs. Would that explain my riba reduction to 400mg per day???
Been to the docs this morning & I now weigh 7 stone 7 (sorry can't covert, my brain has gone on vacation somewhere!)
Do you know if Pernicious Anemia is related to Hep C? My nurse wants to put me on meds for this now as before tx my B12 count was 280, now it's 171. I'm 3a on 10/24.
I'd be really grateful for your input & views,
Many thanks,
Louise
WOW STEVE....CONGRATS MAN O MAN GREAT GREAT NEWS!!!!....i am so proud of you and your aditude and your commitement......GREAT NEWS my friend.....i too would have been shedding tears.....what a huge relief to hear, espeacially since we sadly heard yesterday...? day before? that several 3a/3b...did not clear.....i AM SO UP LIFTED.....WAY TO GO!!
lots o love
kimmy
LOUISE
honey try and slow down a wee bit okay....or i'll have to use some air miles and come over there.....you are really tiny....90lbs....i think they made a 'mistake' originally with your dosage....i weigh 130...something..? call it 140 when i started, and i was put on 800mg.....daily....i weigh your weight...PLUS HALF and am on 800mg.....SO MAYBE....your where you are supose to be, and also considering the anemia you already have, MIGHT well account for your dosing......i want you to BREATH SWEETIE....BREATH....
heres a 2000MG HUG
kimmy
Yeahhhhh!! We needed some good news today! And this definitely calls for a celebration! I'm so happy for you as yes this just keeps all of us newbies going strong! Ok...so what is your big celebration today? Something special I hope..
See the link below regarding the 1-b low dose study (additional 12 months inf. only, no riba, at low daily dose) and let me know what you think. If it was a valid, well run study then the implications are major!
If this does not work as a link, just copy and paste.
How have you been feeling after tx? I still have lots of RA-like back and neck pains...but some of it may be from long term physical stresses and postural forces, etc. My doc thinks that it is due to pinched nerve roots in the spine...but to me it seems suspicious that it really intensified AFTER tx ended. It's hard to sort out what is causing what. Other than that I am feeling better all the time. I notice my coloring is much more 'pinkish-ruddy' than anytime over the past decades. Maybe less bilirubin in the blood, or related issues. I seem to look healthier than in a long time, and that really feels good.
Congratulations mate! I feel like we just watched you make a touch down for the team. Way to go man. You have been a inspiration to me in the last six months. If you remember Australia and New Zealand are the only places in the world I would like to visit and it's still on my list.
Dh Bill
Just a silly question here, I noticed that several of you talk about pens for injection and was wondering if they are like the epinephrine pens for allergic reactions? The kind that you have to press firmly to your leg and then they snap and inject? I hate those things and can barely get myself to use one even after a bee sting which I am very allergic to. I would rather have the old regular needle back.
Speeking of allergic reactions I noticed a bumpy rash starting near my right ear last night, today it is covering the whole right side of my face and around my ear and down my neck. I am not on any new meds and ahve not come in contact with any new substances. I am very careful about this since I have so many allergies. I also have noticed that my right arm is very itchy a hot burning type of itch. I am not on tx yet, I take several anti-d's but have been on them all since Sept getting ready for tx. Any ideas? Shadey
Steve - congratulations on your great news. Enjoy your victory and stay well. The relapse rate for 2/3s post combo runs at about 10% so you have good reason to expect you've won not just the battle but the war!
Doubledose: thanks for that link - it's an interesting result and should be very encouraging to revenire, twotells and others doing lower-dose, long-term "maintenance" right after the end of standard combo. The stats seem a bit shaky to me. The interesting group, B1, only had 16 patients and they didn't report intent-to-treat numbers which combined with comments like :
<em>Our results on combined treatment are in accordance with the recent NIH Consensus Guidelines about hepatitis C[1]: the best treatment schedule, in genotype 1b patients, should be 12 months (and not 6 months as for the majority of our patients) of combined therapy; however, we wish to emphasize that only a small percentage of our patients, as underlined in the first phase of the study, was sufficiently determined to start such long therapy and actually showed good compliance</em>
makes me a bit doubtful about the percentages, but the main result still stands. Of the 16 who were clear after a year of combo and went on to a year of low-dose IFN only 1 relapsed whereas 8 relapsed among the 16 who were clear but did not go. Based on the Balan et al overall 30% relapse rate for 1s, a relapse rate of 1/16 looks very good.
Sorry about your RA-like hassles - I suppose if they persist it'll be worth investigating but it's probably just residual stockpiles of toxic wate doing their damage. I finally understood what Kennedge was talking about when he mentioned "bone-pain" a while back..
6.25mg per pound
170lbs x 6.25mg = 1002mg
Don't ask me where I got that from but the guy who posted it is really smart. Others around here can correct me, please.
Pegasys/Copegus - http://www.rocheusa.com/products/pegasys/index.html
Peg-Intron/Rebetol -
http://www.rocheusa.com/products/pegasys/index.html
I don't think there is any difference in the dosages between the 2 drug co's but didn't know which you are taking.
I weighed 120 at start of tx (Oct. 17th) and was prescribed 800 mg of Rebetol daily and .5 of the Peg-Intron weekly.
Sure did make me feel like I'm on the right track.
I started off on 1000mg Ribavirin per day & .5 pegintron. Genotype 3a, started tx Dec 1st.
Within the first 6 weeks of tx, I had my Riba first reduced to 600mg per day & then a week later had it reduced to 400mg per day, pegintron reduced to .45, which I'm told I will stay on these doses until the end of my 24 weeks, I'm currently at shot 10.
I have never heard of anyone else on this forum, taking such small doses as I am. And every chart I look at on weight base or whatever states that the higher dose is 1200mg Riba per day & the lowest is 800mg riba per day, no mention of any taking 400mg a day! SO WHY ME??????? My hep c nurse said it wasn't worth raising my doses again as my body couldn't take it with the weight loss & all, & it could lead to other health issues for me! I always thought I Was healthy until Hep C! I'd like to up the riba myself, but can't as they bloody count them out on every monthly visit! Have i got something else wrong that they're not telling me about? How come most people here can take these doses, but I CAN'T????
It doesn't make any sense to me! They won't prescribe Procrit or Neupogen to me either! What the hell is going on with me! Am I ever gonna make it???? I have my 12 week test in 2 weeks but won't get results for anything up to 4 weeks later! This is driving me to the brink of despair again!
Please help....I'm really getting scared again!
Many thanks
Louise
I'm told Procrit & Neopegen aren't standard practice here in the UK for some reason...probably cutting corners & saving money, is my guess?
It really doesn't help trying to focus on being positive, anymore, I'm dreading my 12 test but won't get the results for another 4 weeks after that, so I geuss I'll have to guess some more & worry & worry until then! What else can I do??????
Louise
Check out the NIH Consensus Statement on standards of care for chronic HCV. I believe they not only give dosages, but also urge the use of Procrit and Neupogen to help us stay at the standard dosages. NIH is the main government body in the US for medical info and research; they dole out much of the research $$.
<http://consensus.nih.gov/cons/116/116cdc_intro.htm>
It may happen that even with Procrit and Neupogen your blood counts go too low; in THAT case the tx dosages may need to be lowered. This happened to me; I was off Riba during weeks 24-27 (NADA!), and missed about 1/3 of the riba pills during the last 24 weeks overall. I'm still very anxiously waiting for my end-of-treatment results, taken 16 days ago!
Good luck to you. You're right to be advocating for yourself!
Maj Neni
Speaking for old school, old guy, stubborn american I think we shouldn't use that weird metrick stuff. I know in the old days we used to by pot by the kilo for a hundred bucks but doesn't kg have something to do with atomic bombs..... Sorry, but I'm starting to feel like my old self being off that AD. Kinda fun.
kimmy
My GI said NO he will not lower the dosage of the copagus pills for me and said, full speed ahead darling.
I only weighed around 140 when starting treatment and now, haven't lost too much weight but after 40 weeks of these medicines I weigh about 132.
Keeping with the standards, wouldn't 1,200mg be too much for me at 140 lbs and wouldn't 1,200mg be too much for me at 132 lbs. I believe I'm on the highest dose due to my biopsy showing considerable liver tissue damage.
We all need all the meds we can possibly stand. The Dragon is one tough cookie. He will not go down easy. I am not all that current on the actual cbc numbers that are the danger levels. Perhaps MajNeni of Willing have them at hand. My best guess are whits counts....1.5, red counts...below 10,....neutrophils...below .75.....and there are others depending on our specific problem. I think too many docs just take the easy road and reduce the doses to compensate for this. But that also reduces the odds of winning this battle. You really need to be "In your Face Active" on this subject with your docs. Most of them are really not sure of what they are doing in this area.
I was reduced on my peg for 3 weeks late in my tx due to low white counts after several rounds of antibiotics for a dental problem. But, I made him raise me right back up once that problem cleared. Another doc I consulted with said that HE would have Neupogen instead to get the same result without a dose reduction. I was ok in the end because it was late in my tx and the Peg means less in the late stages.
Do your research and go to your appointments "ARMED" with all kinds of info to change their minds if need be. In the end, This is YOUR tx. YOU are the ones IN CHARGE of what happens to you. If you choose to take a chance on lower blood counts the that should be YOUR decision. If you go in to your appointments armed with info and desire you will most likely get your way.
DAM THE TORPEDOES! FULL SPEED AHEAD!!!!!!!!!!!!!!
So in summary, if it were me, I would pay out of pocket for the extra 200 mg/day, and give it everything you have. I relapsed once , probably due to sub-optimal Riba levels, and on my most recent tx stayed at 1200 mg/day for 52 weeks (using Procrit most of the way) and then 1000 mg. Riba/day for the last 20 weeks.( I did 72 weeks Peg/Riba total tx)
I weighed from 180 lbs down to 170 lbs. during tx. The reduction in Riba. to 1000 mg. was NOT voluntary, but due to dangerously low Hemo. levels, in spite of high Procrit doses.
I am still clear at three months POST Tx, and hope to remain clear permanantly this time around. Don't mess around with this genotype, and keep your dosages as high as possible (safely) from beginning to end. Then you will know you did everything you could do to eradicate this virus. You do not want to relapse, and have to go at it again!
Also, read the recent study (Gastroenterology Journal)comparing 1 year inf./riba in 1-B's to 1 year inf./riba Plus 1 year low dose inf. daily dose with no riba for 1-b's. Results shows something like 38% SVR for first group, vs. 83% SVR for the second group...demonstrating the value of EXTENDED tx for 1-B's.
(on a different theme from Riba dosage). So do whatever is necessary and do it ONCE. Get your SVR and move on with life.
Best of luck!!!!!
Bill.....WOW. 1400 of Riba!?! Thats some stiff stuff you're doin there. There is some evidence that the higher doses are better for type 1's, BUT...we have to temper that with the results of the blood counts. If your counts are all ok, then I would press for the higher levels of meds. But 1200 is normally enough. Still, if they will support your efforts to stay at the higher doses, then I would ncertainly do so. Just watch those red counts REAL closely while you do this. Maybe a cbc every 3 weeks or so? Take care buddy..............
I asked yesterday for an increase to at least 80% Pegasys and was told that it will depend on today's blood results, but so far they have gone in the wrong direction over the last 5 weeks:
WBC went from 1.3, 1.6 1.2, 2, 1.8
RBC went from 3.27, 3.33, 3,21, 3.65, 3.43
Platelets went from 125, 107, 113, 147, 150
Neu% went from 32.3, 34, 37.6, 39.2, 37.8
AST - 37 - last week
ALT - 42 - last week
Doc says he WILL NOT order Neupogen because I'm 2a, undetectable at 12 weeks and it's very expensive. I complained that my ins. company would cover it and he still says I'm not a candidate and it's not standard care. He would only consider it if I don't attain SVR. If today's blood is better he may let me go back up to 75-80%
I can see that my blood counts are improved with the lower dosage of Pegasys, but, of course, I still worry about clearing. My best hope is that the reductions didn't start until after the critical 12 week perios.
doubledose : sounds like an interesting study: do you have an author or date? thanks.
My hubby & I worked out my weight on the last weigh in, 3 weeks ago, at being 91 lbs. Would that explain my riba reduction to 400mg per day???
Been to the docs this morning & I now weigh 7 stone 7 (sorry can't covert, my brain has gone on vacation somewhere!)
Do you know if Pernicious Anemia is related to Hep C? My nurse wants to put me on meds for this now as before tx my B12 count was 280, now it's 171. I'm 3a on 10/24.
I'd be really grateful for your input & views,
Many thanks,
Louise
lots o love
kimmy
LOUISE
honey try and slow down a wee bit okay....or i'll have to use some air miles and come over there.....you are really tiny....90lbs....i think they made a 'mistake' originally with your dosage....i weigh 130...something..? call it 140 when i started, and i was put on 800mg.....daily....i weigh your weight...PLUS HALF and am on 800mg.....SO MAYBE....your where you are supose to be, and also considering the anemia you already have, MIGHT well account for your dosing......i want you to BREATH SWEETIE....BREATH....
heres a 2000MG HUG
kimmy
kimmy
http://www.medscape.com/viewarticle/466007?mpid=24237&WebLogicSession=QCJlOfVK0vOms5dE6uUHonos9eTSUjZobXIsUl9xCVjwiabcantx|1543640384448703851/184161393/6/7001/7001/7002/7002/7001/-1
If this does not work as a link, just copy and paste.
How have you been feeling after tx? I still have lots of RA-like back and neck pains...but some of it may be from long term physical stresses and postural forces, etc. My doc thinks that it is due to pinched nerve roots in the spine...but to me it seems suspicious that it really intensified AFTER tx ended. It's hard to sort out what is causing what. Other than that I am feeling better all the time. I notice my coloring is much more 'pinkish-ruddy' than anytime over the past decades. Maybe less bilirubin in the blood, or related issues. I seem to look healthier than in a long time, and that really feels good.
Dh Bill
Speeking of allergic reactions I noticed a bumpy rash starting near my right ear last night, today it is covering the whole right side of my face and around my ear and down my neck. I am not on any new meds and ahve not come in contact with any new substances. I am very careful about this since I have so many allergies. I also have noticed that my right arm is very itchy a hot burning type of itch. I am not on tx yet, I take several anti-d's but have been on them all since Sept getting ready for tx. Any ideas? Shadey
Doubledose: thanks for that link - it's an interesting result and should be very encouraging to revenire, twotells and others doing lower-dose, long-term "maintenance" right after the end of standard combo. The stats seem a bit shaky to me. The interesting group, B1, only had 16 patients and they didn't report intent-to-treat numbers which combined with comments like :
<em>Our results on combined treatment are in accordance with the recent NIH Consensus Guidelines about hepatitis C[1]: the best treatment schedule, in genotype 1b patients, should be 12 months (and not 6 months as for the majority of our patients) of combined therapy; however, we wish to emphasize that only a small percentage of our patients, as underlined in the first phase of the study, was sufficiently determined to start such long therapy and actually showed good compliance</em>
makes me a bit doubtful about the percentages, but the main result still stands. Of the 16 who were clear after a year of combo and went on to a year of low-dose IFN only 1 relapsed whereas 8 relapsed among the 16 who were clear but did not go. Based on the Balan et al overall 30% relapse rate for 1s, a relapse rate of 1/16 looks very good.
Sorry about your RA-like hassles - I suppose if they persist it'll be worth investigating but it's probably just residual stockpiles of toxic wate doing their damage. I finally understood what Kennedge was talking about when he mentioned "bone-pain" a while back..