And I'm so sorry, I didn't read thoroughly enough and see that can't have rescue drugs. That's about where my head is lately, not being very thorough. In your case you pretty much do have to do what you have to do I guess.
They are allowed, the shots, they just get expensive if I go to the ER ($150 bucks each time those folks lay eyes on me), and when I went to the pain doc last month I was you know, trying to be valiant, not having, at the time, any way to foresee how much pain I was actually going to be in as a result of the chemo and whopping doses of epogen (80,000 units per week) combined with my normal migraines. I see the pain guy again tomorrow and trust me, all of my pride is gone. I'm going to tell him exactly what a tough time I'm having because I hurt every second of every day. Even my "normal" migraines are more protracted from these stupid treatment drugs and my bones and joints? Forget it. They are in agony. I keep repeating this mantra to myself, "it's all worth it, its all worth it.."
Then I've got all of these business people calling me all day with their issues about different products and whatnot, which are trust me, petty a lot of the time, but still, its my job to fix whatever ails them. Oy!
UPDATE - I feel like I'm stuck on a rollercoaster ride. Happy to just be able to raise and walk. Sheesh. I took "dsrt's" advice (Thank you doll) and contacted my Doc to push my blood draw to this Monday from friday. He said he could have the results by Wed and let me know before the Holiday if I can crank up my dose back to 1000 mgs of Riba. I do feel better since the reduction and catching some sleep with the Tylenol/PM. I found a better sleep aid called "Simply Sleep" that is only Diphenhydramine HCI put out by Tylenol that I might try in a pinch. I'm really a tough customer and my resiliance comes from anger so I am ready to go. I am sick of everything and almost everyone. Yikes. The nice thing is I have become a better friend to myself since no one in my reach seems to be volunteering. That was a joke.
Anyway my viral load started at low at 1,100.000 in July, by week 4 the vl dropped to 61,000 and the dragon dissapeared by week 12 - UND (or below 43?) in October. I am 1b started this campaign weighing 125lbs. Today I managed 109 with ensure, boost. I am trying. Mouth hurts, eating hurts. There was a while I wasn't sure I would wake up. I told myself that difficulties come in waves and I just need to be boyount - not to fight it but let it pass. The counsel I find here is sustaining. I'm rambling, my bad. The Doc said no procrit or epo in this clinical trial. He said they would give me a transfusion if necessary but their protocol requires reduction of meds.
I do feel I was saturated with this riba high dosage but if the trial fathers thought that would improve a patients chances of SVR, I hope for the best. The dose for Albumin interferon remains at 900pg. I am not paying for a thing. I think with weight gain I still have a chance. Lord have Mercy. Thanks for hearing me blowing my horn!
so are the migrane shots not allowed with this tx??
so what would be the harm of say, a little oxygen tank at night? bet this might help....it would be tempting.
Note: to my Last post... "My Dr. did reduce 'outside of a clinical reason' before labs got back 2 weeks ago, but he knew what was up, and he was right." ------------------------------
Hgb had dropped, he knew they were dropping more, labs came in a few days later and they had.
--------- "Lizbo has to get the Hgb and the only way,"-----------------------
the Hgb ...UP !!!!
-------------"I have wondered if they'd know if we snuck some in :} !!----------------------------
Procrit, epogen...not Riba!
geeeezzzzzzzz............on those notes, to my notes.........nite all
Sorry about that lap top!
Good post above and I had more to say but I am too d*m tired to remember it all because I need a procrit or epogen shot and can't have one, LOL!!
You do seem to have really good Dr.'s, care in your tx, problems and thank God as all your dealing with in this.
While I have a great Dr., (and my sides, labs are still doable and nowhere near your problems), I am fast learning a trial is a trial! Rules are rules and so on. A lot makes NO sense as when these trial drugs are out...they'd need all the rescue drugs than, right? I understand the reasoning, but yet.... I don't!
My Dr. did reduce 'outside of a clinical reason' before labs got back 2 weeks ago, but he knew what was up, and he was right.
Lizbo has to get the Hgb and the only way, in this, I think is reducing Riba.
I have wondered if they'd know if we snuck some in :} !!
I give up, going to sleep, back on this thread tomorrow!
LL
I guess a lot of docs, including the one at our clinic are dosing everyone with RIBA at top dose regardless.
It makes no sense to me, a little 106 lb woman is double saturated compared to a 230 lb hulk....but they are dosed the same.
I think smaller women should get blood drawn more often, since small frame means less marrow to make new blood, they are at greater risk.
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REALLY agree on that! Going from 800mg to 600mg, about 2 weeks now, I can get out of bed!
(some!!) We'll see if it changed the labs next week.
I tend to agree with, and the studies show, the higher dose at start of tx important, but should be more 'monitored' per weight.
LL
I 'drew' the pegasy, but the dosing was to be every 2 weeks if Albumin. There was also a monthly dose study but, and not positive, I think they weren't doing anymore of the 1/4 arm (or what that is called!! The monthly!! D*m, getting major dose of the fog this week!!)
LL
I have to agree, reduce now. The levels aren't going to go up without meds. and the same dose of Riba will continue to drop Hgb. (right??) and even IF it stabilized, still awfully low.Too close to the 'hold dose's' stage. And I know we can't get rescue drugs but don't know about transfusion!! I just figured yes as that's at the point of......need it now! Will be checking that in AM.
(Memory??? They must have told me as all my sons getting blood screens in case I needed their blood!) Time for bed!
LL
Dam*it...to tired to keep up with these post this week!!
Eyes crossing again and trying to read all this! Words not coming out right *&%$#!
Lizbo......if I am correct your in the Albumin trial and can't get rescue drugs, right?
I am in that also and going thru the Hgb drops, etc. and they did reduce Riba. Mine quite different tho as I got the Peg in the trial and am 2b, but same as in no Res. drugs, 'rules'.
Am NO pro in this, but when they reduced mine, many here posted, I read, researched on my own and bottom line -for me-came to if I drop anymore in Hgb it was-is-going to be 'hold dosing', or out of trial. My choice became reduce or risk the hold dose's, which I felt would be worse. Got labs today, will know next week if reducing has helped.
Tough choices when no rescue drugs and concerned as you down to 9 (and type 1in this). You said your RVR at week 12, did you get to find out if you were at week 4 (as per trial rules? I did get to 'find out' -and only in week 8). Again..NO PRO, but you are very small, 5 pills would be 1000mg (?). I'm 125ish and on 600 now, but whole different deal with geno 2 there also.
In the trial tx the risk of being taken off and/or holding dose's is a huge concern. And knowing the Riba is causing the drops....what to do???
A question for the 'pro's'.....heard much on my size, Riba with geno 2. Would this apply to Lizbo with geno 1? With no rescue drugs, the lesser of 2 evils of reducing Riba or holding dose's would be reducing for her?
Really sorry, wish I could help more and hope you get this figured out and keep on tx and trial.
P.S. A few weeks ago I believe you were handling the albumin okay? (memory). How is that going?
LL
The latest news on ribavirin is that it's importance to SVR has been way underestimated. You need it at the end of treatment as well as the beginning. I hate to see anyone have to reduce that. And while EPO does take time to work, aranesp is much faster if the patient's insurance will pay. And it is only dosed every 2-3 weeks.
spcecst
I don't know bipolar from a polar bear, but on tx half the time I listened to Grateful Dead/Hot Tuna/It's A Beautiful day and half the time Nirvana/Foo Fighters/Offspring.
alagirl/merryBe/zazza
Please note type of IFN Libzo is taking. Unlikely to be able to use rescues or change docs in a trial.
Is being bipolar from this treatment??
alagrl- I get the high dosing...I just gon't get that they don't monitor more closely at first, esp. when other mitigators are present.
Maybe it's the squeaky wheel and you're it....maybe it's you have someone attentive and not innudated with thousands of cases....but for the most part Epo is not forthcoming in a timely manner.
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Oh I don't either. Not only do I think they should monitor more, I think it would probably behoove them to start everyone with procrit. Here's the deal though. I'm finding that HCV is really a very patient centered disease and treatment. And by that do I mean that the doctors put the patient AT the center? Umm... no. I mean that patients have to drive their own treatment and really, to insist upon the best SOC.
At the beginning of my treatment I put together, with the help of research, advice from people here, and everything I read, what I thought the best standard was at that time. And I asked that from my doctors and put ancillary providers into place to handle some of the work such as twice weekly cbc's and that sort of thing. I asked for an early referral to a hematologist the minute I began to have problems with my blood count. But I'm the one who sees my results first typically, even before the doctor sometimes because I get a rapid cbc from the tech the day I go in.
So if something is wrong, a lot of times it's me telling the doctor, "hey, we have a problem," not the doctor telling me. That's what happened the day I had my transfusion. I asked for a specific amount of epo per week, then I asked for twice that. So I do my own case management, and largely by research on current best practices according to latest studies. I mean, its not like I decide my care, obviously, doctors have to sign off on everything, but I don't think I'd get things as fast as I do, or be given the modalities I am, unless I asked for what I specifically wanted.
I've been on my AD's forever. I'm pretty afraid to reduce because I'm prone to depression anyway and I have a feeling it wouldn't be helped by this tx. I think its the pegasys and the higher dose epogen giving me the problems because the really intractable headache series just started with the increased epogen. Of course, I GET a headache that lasts a few days to two weeks once every six to eight weeks anyway. For years and years now. It's just more difficult now because I am also having bone and joint pain, and then the migraines also. It's been a really painful and nauseous tx so far. LOL not on my list of "things you really can't miss in your lifetime," this treatment...
I'm wondering about what role your AD's may be playing in your migrane's, it may be time to rethink those dosages, given Riba exacerbates as do the AD's pressure changes in the brain.
yeah, the tylenol PM, pretty freaking funny huh...like if we minimilize what this tx is you'll somehow not get sides.....rolleyes.
alagrl- I get the high dosing...I just gon't get that they don't monitor more closely at first, esp. when other mitigators are present.
Maybe it's the squeaky wheel and you're it....maybe it's you have someone attentive and not innudated with thousands of cases....but for the most part Epo is not forthcoming in a timely manner.
I disagree with the monthly monitoring too...let alone that one guy who went 12 wks. Even if there is slight blood loss, bi-monthly should be minimal, just my opinion.
It's hard to say for certain who's blood will step up to the plate really, given we have been fighting a virus for umpteen years the whole system is basically very worn before most are diagnosed.
I'm on HGH, as you know, because my chicken came before my egg....so my blood so far has held...but that's not a possibility for most to get on,
I think if I were you Lizzbo I'd park myself in your docs office and not leave until I got procrit AND upped the riba AND got a referral to a real liver doctor.
either that or go get a second, and tell them it's an emergency and your current doctor is refusing to treat, chances are they'll get you in that way.
what is his reason for denying you a recue drug.......have you thought of asking him if that is legal?
I would call records, and get all his notes and your labs to date, so you can go to him armed...or to my cousin Vinnie...:))))))))))))
Just munched my entire post. Grr.... My laptop is broken on account of I fell asleep with it a few nights ago (nothing unusual there) but it fell and landed on its spine and is now kerput. So I'm dealing with this flatscreen keyboard mouse in the bed kinda situation, (cpu on the floor) and its not super stable, lol
Plus I have another raging effing migraine, my second of the week, I've already been to the ER for one once this week, and I took the two shots, the epogen and pegasys, and lo the bone pain, and ok. Enough griping.
Anyway, I agree, people who are smaller or just who may start out a little lower on hgb, 12 or so, need to be watched carefully. I was unprepared for the viciousness with which the riba caused hemolysis in my case. Sure I was prepared intellectually, but despite the best efforts of folks like Jim and DebNevada to get me to really understand how it might pan out, you sometimes don't really "get it" until it's you in the ER begging them to just please do the transfusion there instead of hospitalizing you, and Oh PLEASE GOD don't take me off my meds, I promise I'll be good, and take lots of procrit and bring my blood count up...
All of that said, there is, unfortunately, very good evidence that good SVR comes from good riba in many cases. So I do understand why its pushed so. I harken back to the study we all know and love....
http://www.hivandhepatitis.com/hep_c/news/2007/082407_a.html
Use of Epoetin (EPO) to Manage Anemia in Chronic Hepatitis C Patients Treated with Pegylated Interferon plus Ribavirin
Successful treatment of chronic hepatitis C with pegylated interferon plus ribavirin is often limited by anemia. An adequate amount of ribavirin reduces the risk of post-treatment HCV relapse, but the incidence of anemia rises with higher ribavirin doses.
As reported in the August 2007 issue of Hepatology, researchers conducted a study to determine whether using erythropoietin, or epoetin alpha (EPO), with or without a higher dose of ribavirin, could enhance sustained virological response (SVR) rates.
They randomized 150 treatment-naive patients (36% African-American) with chronic genotype 1 hepatitis C into 3 treatment groups:
• Group 1: pegylated interferon alpha-2b (PegIntron) 1.5 mcg/kg/week + weight-based ribavirin 13.3 mg/kg/day (800-1400 mg/day);
• Group 2: pegylated interferon + weight-based ribavirin + EPO (40,000 U/week);
• Group 3: pegylated interferon + high-dose weight-based ribavirin (15.2 mg/kg/day; 1000-1600 mg/day) + EPO (40,000 U/week).
In groups 2 and 3, EPO was started at the onset of therapy in order to maintain hemoglobin levels between 12 and 15 g/dL. When required, the ribavirin dose was reduced by 200-mg steps.
Results
• A significantly smaller percentage of patients in Group 2 compared with Group 1 had a decline in hemoglobin to less than 10 g/dL (9% vs 34%; P < 0.05).
• Fewer patients in Group 2 required ribavirin dose reduction (10% vs 40%) compared with Group 1 patients (P < 0.05).
• Despite this, SVR rates were not significantly different in Group 1 and Group 2 (19% vs 29%).
• However, the SVR rate was significantly greater (49%) in Group 3 (P < 0.05).
• This resulted from a significantly lower HCV relapse rate: 8% in Group 3 vs 38% in Groups 1 and 2 (P < 0.05).
Conclusion
"We conclude that using EPO in all subjects at the initiation of pegylated interferon and ribavirin treatment will not enhance SVR given the same starting dose of ribavirin," the researchers stated. "In contrast, a higher starting dose of ribavirin was associated with a lower relapse rate and higher rate of SVR."
08/24/07
Reference
ML Shiffman, J Salvatore, S Hubbard, and others. Treatment of chronic hepatitis C virus genotype 1 with peginterferon, ribavirin, and epoetin alpha. Hepatology 46(2): 371-379. August 2007.
I guess a lot of docs, including the one at our clinic are dosing everyone with RIBA at top dose regardless.
It makes no sense to me, a little 106 lb woman is double saturated compared to a 230 lb hulk....but they are dosed the same.
2 possible reasons, one is, effectiveness in study results seems to indicate heavy dosage gives best results acroos the board. second is they may be trying to cover themselves legally. Like say someone doesn't go UND on 800......then who gets blamed for resistence? Not that they'll ever admit that, but I think they would rather HAVE to cut someback because od sides, than to start out lower and then get blamed for treatment at too low a dosage. the INF I'm assuming was weight based all along.
the procrit epo we were told are expensive and insurances don't like to cover them, therefore they are never offered up front, you have to tank, suffer, wait, get approval, suffer, wait some more.
since cost and insurance companies were the main reason given, that's not likely to change anytime soon.
I think smaller women should get blood drawn more often, since small frame means less marrow to make new blood, they are at greater risk.
With Copegus you get 1000 mg riba up to 75 kg, so if that is the brand of riba you are taking, that would explain your dose. Copegus and Rebetol are just different brand names of the same drug though, so I figure you can safely follow the more detailed weight based dosing of Rebetol, which is as stated above 800 mg riba below 65 kg.
106 lbs equals 48 kg. That is 20.75 mg ribavirin per kilo if you take 1000 mg a day; 16.6 mg per kilo with 800 mg riba; 12.45 mg per kilo with 600 mg riba.
For geno 1's a dose of 13-15 mg per kilo is often recommended. So it seems to me you can safely reduce your riba with one pill a day down to 800 mg, perhaps even with 2 pills down to 600 mg.
Normal dose below 65 kg (143 lbs) is 800 mg, so you seem to have been heavily dosed from start. Any special reason for that?
p.s. My hgb was at 9 for the first 4 1/2 weeks of treatment. I'm on 180 pegasys weekly and 1000 mg riba daily.
Lizbo, what's your geno and starting viral load and what week of treatment are you in? That can make a difference in the amount of riba you might need given your weight. Also, do you know if you have gone UND yet on your viral load tests and if so when did that happen? I mean, at what week?
He also suggested Tylenol/PM to fall asleep
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He's a hell of a guy huh? Reduces your riba and suggests that for your pain you take an over the counter sleep aid. Nice. Can you get a different doc? One that will say, give you PROCRIT to increase your hgb so that you can treat effectively and that can give you medication to reduce your symptoms, something for sleep or pain if you need it? No since paying a doctor who isn't meeting your needs. At least, that's my personal policy. Lots of docs out there, and some of them just happen to be insensitive morons. Whoops, I'm sorry. Was that worded strongly? Oh well. Look, I've got some really great docs who are doing EVERYTHING HUMANLY POSSIBLE to keep me in treatment. And my hgb went down between 7 and 8 and similarly, I am very small. I was 5'5" about 125 lbs to start but I have lost weight unfortunately faster than I wanted since then due to nausea w/tx.
They seem to be offering me FAR more support than they are you. I get cbc's TWO TIMES a week. I have a hematologist and a hep doc and they both get my cbc's. I go to a pain clinic to get medication for my chemo, and my docs give me phenergan and zofran for my nausea. Instead of reducing my riba when my hgb went down, I was giving a transfusion and then placed on 40,000 units of procrit, followed by an increase to 80,000 units of procrit per week when my hgb didn't come up fast enough. It's WORKING. My hgb and hct are now coming up. But my hematologist has plans to hospitalize me to provide support rather than withdraw me immediately from meds if I tank again, and through the help of others on this board, I've been given the names of several specialists at teaching hospitals so that in the last ditch eventuality that I do have to reduce my riba I can get a consult between them and my docs first. If your doctor isn't offering you this support, you need to ask him WHY NOT! It's his JOB.
At 5' 7" and 106 I don't see a problem with reducing the riba. How much riba do you take? You said 5 but what does that come out to? I took 800 mg of riba divided into 2 doses. I think you shouldn't worry because as desrt said, the most important work for riba has been done. If you don't reduce the riba and hgb continues to fall he might take you off the meds instead of reducing.
Good luck, sorry it's been so rough....
hugs,
Bug