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Rescue Drugs Procrit & Neupogen
Hi everyone, looking for some input from those who needed the ‘rescue’ drugs Procrit & Neupogen while on treatment: How soon into tx did you start injecting either/or, and how long did you continue to need it? I know everyone’s side effects vary greatly, (and the hope is that there won’t be any need of them,) but I’m trying to get an idea of minimums and maximums in terms of use so that my husband and I can be prepared for the added expense (we’ll be running pretty close to the insurance cap with just SOC alone). Thanks for any feedback.
"I did read that with men the give procrit at 11...which seems unfair since women need to breath just as much." mb
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LMAO... oh, but alas, mb, I think it's men setting the guidelines ;)
I do apologize if I was unclear, I'm actually on the forum asking for my husband's planned treatment (not yet started). Fortunately, the doc gets to call the shots on the prescriptions, not the insurance, but there's always the deductibles and the max-caps to worry about :P. He's a landscaper and may be put into a sink-or-swim scenario, but I tend to agree that it "sounds right" that a larger percentage of women appear to have the hemoglobin issues (not surprising, really). I'm hoping that's the case.
--If anyone has info to the contrary, though, please pipe up.
I have particular concerns about anemia as my husband has a pre-existing heart condition, and we've had to scale mountains to get to the final starting gate. Interesting thought on the oxygen, though... we'll have to check out one of these "trendy" Oxygen bars popping up all over the place. One's supposed to be opening up in our neighborhood soon, it might just be what the doctor ordered! ;)
Thanks for your feedback,
~eureka
---------------------------------
LMAO... oh, but alas, mb, I think it's men setting the guidelines ;)
I do apologize if I was unclear, I'm actually on the forum asking for my husband's planned treatment (not yet started). Fortunately, the doc gets to call the shots on the prescriptions, not the insurance, but there's always the deductibles and the max-caps to worry about :P. He's a landscaper and may be put into a sink-or-swim scenario, but I tend to agree that it "sounds right" that a larger percentage of women appear to have the hemoglobin issues (not surprising, really). I'm hoping that's the case.
--If anyone has info to the contrary, though, please pipe up.
I have particular concerns about anemia as my husband has a pre-existing heart condition, and we've had to scale mountains to get to the final starting gate. Interesting thought on the oxygen, though... we'll have to check out one of these "trendy" Oxygen bars popping up all over the place. One's supposed to be opening up in our neighborhood soon, it might just be what the doctor ordered! ;)
Thanks for your feedback,
~eureka
floored by costs...yes, and today I was reading how maintenance INF for HCV non-responders may become SOC.
I think from what I've seen in here NY girl is right, the more extreme the dosing, or the more other medical issues, the more chance you'll need these.
Take NYgirl, or Gauf or Alagirl as examples...but these aren't the norm.
It seems that there are more small women whose blood tanks sooner, but that's just my obsevation, it may not be right.
The thing is, if on insurance the blood has to reach a certain low level before they will approve. My HGB gradually descended over the last 9 months and the last 3 have been difficult (in the 10-11 range). So now I'm on procrit but it's taking it's sweet time to bring it up. That could be because I was too high on iron and began a low iron diet 5 months ago. Today they called and told me to eat a little red meat and they'd check me in 2 weeks. So for now I'm on 60,000 unit and they say more than that won't help anyway.
It's frustrating because you have to be gasping for air before INS will pay...however I was NOT down to the "criteria low" and I still insisted my doc run it through INS, and they did approve it. So even if your docs say you have to be at 10 or 9.....don't settle for that.
If you can't cross your yard without feeling like collaspsing make them put you on it.
Its not good to not have enough oxygen!!
I did read that with men the give procrit at 11...which seems unfair since women need to breath just as much. I also think they should factor in weight, which they don't. Obviuosly if someone carries extra weight that part of the body needs oxygen too...meaning the heavy person could suffer brain damage more easily as low HGB levels. (the brain requires 60% of your oxygen I read somewhere.)
My thought was, why couldn't they give extra oxygen while the procrit takes time to work....since many are left in real straights for 2-4 months while it kicks in. So I had them check my oxygen saturations....but they were at 97%.
So while I had 1/3 less oxygen carrying cells, they were all working at top capacity. In this situation extra oxygen can be toxic, since there's no blood to carry it or it's byproducts away.....so now I'm in the netherland waiting to exhale.
Meanwhile I checked out transfusions as an alternative, but was told that every transfusion lowers your chances of having a transplant be successful.
Evidently any other humans blood produces massive antibodies, it tends to whack the immune system out, and the chances of rejection when a liver is then inserted are much much higher.
So, if you can make it with a desk or home job, then hang on till you need the Neupo-procrit (which do have risks, read them) and then hang in there.
I don't know how anyone could work in this state though, it's very trying this whole HCV thing.
There have been some who have gotten procrit from the get go....before they needed it...
either they had very high clearance, or had the money to pay themselves. When I brought up the subject with my docs it was promptly put down. They don't prescribe things ahead of time. I think they should reconsider...especially with antidepressants, but many will not. First you get the symptoms, then the treatment.
Actually I agree with this for the most part. Especially since we are LIVER patients, and every drug almost is hard and many are damaging to the liver. So the approach of the least needed drugs does make sense in terms of long term health and preservation of the organ.
Anyway, here's hoping your blood stays good, and you get it if you do need it.
mb
I think from what I've seen in here NY girl is right, the more extreme the dosing, or the more other medical issues, the more chance you'll need these.
Take NYgirl, or Gauf or Alagirl as examples...but these aren't the norm.
It seems that there are more small women whose blood tanks sooner, but that's just my obsevation, it may not be right.
The thing is, if on insurance the blood has to reach a certain low level before they will approve. My HGB gradually descended over the last 9 months and the last 3 have been difficult (in the 10-11 range). So now I'm on procrit but it's taking it's sweet time to bring it up. That could be because I was too high on iron and began a low iron diet 5 months ago. Today they called and told me to eat a little red meat and they'd check me in 2 weeks. So for now I'm on 60,000 unit and they say more than that won't help anyway.
It's frustrating because you have to be gasping for air before INS will pay...however I was NOT down to the "criteria low" and I still insisted my doc run it through INS, and they did approve it. So even if your docs say you have to be at 10 or 9.....don't settle for that.
If you can't cross your yard without feeling like collaspsing make them put you on it.
Its not good to not have enough oxygen!!
I did read that with men the give procrit at 11...which seems unfair since women need to breath just as much. I also think they should factor in weight, which they don't. Obviuosly if someone carries extra weight that part of the body needs oxygen too...meaning the heavy person could suffer brain damage more easily as low HGB levels. (the brain requires 60% of your oxygen I read somewhere.)
My thought was, why couldn't they give extra oxygen while the procrit takes time to work....since many are left in real straights for 2-4 months while it kicks in. So I had them check my oxygen saturations....but they were at 97%.
So while I had 1/3 less oxygen carrying cells, they were all working at top capacity. In this situation extra oxygen can be toxic, since there's no blood to carry it or it's byproducts away.....so now I'm in the netherland waiting to exhale.
Meanwhile I checked out transfusions as an alternative, but was told that every transfusion lowers your chances of having a transplant be successful.
Evidently any other humans blood produces massive antibodies, it tends to whack the immune system out, and the chances of rejection when a liver is then inserted are much much higher.
So, if you can make it with a desk or home job, then hang on till you need the Neupo-procrit (which do have risks, read them) and then hang in there.
I don't know how anyone could work in this state though, it's very trying this whole HCV thing.
There have been some who have gotten procrit from the get go....before they needed it...
either they had very high clearance, or had the money to pay themselves. When I brought up the subject with my docs it was promptly put down. They don't prescribe things ahead of time. I think they should reconsider...especially with antidepressants, but many will not. First you get the symptoms, then the treatment.
Actually I agree with this for the most part. Especially since we are LIVER patients, and every drug almost is hard and many are damaging to the liver. So the approach of the least needed drugs does make sense in terms of long term health and preservation of the organ.
Anyway, here's hoping your blood stays good, and you get it if you do need it.
mb
nygirl7:
If I may dare say, you DO strike me as a woman of extremes :) -- much the kind of man my husband is lol -- and thanks for all that good info (and, I didn't know Procrit had so many other names/forms). Since we're talking about treating geno 1, the potential for 72 weeks is there, so you certainly are a good example of "maximum". You musta had awesome insurance, some pretty big numbers there.
FloridaMouse:
A friend of mine has RA, and I remember being absolutely floored at the retail cost of her "maintenance" medications. I'm coming to the realization that there may well be many (or no) unexpected and unforseen rx costs beyond the SOC drugs. Trying to figure out copays, deductibles, maximums, etc. is almost as challenging as trying to figure out how to combat the disease! Many thanks for your help.
If I may dare say, you DO strike me as a woman of extremes :) -- much the kind of man my husband is lol -- and thanks for all that good info (and, I didn't know Procrit had so many other names/forms). Since we're talking about treating geno 1, the potential for 72 weeks is there, so you certainly are a good example of "maximum". You musta had awesome insurance, some pretty big numbers there.
FloridaMouse:
A friend of mine has RA, and I remember being absolutely floored at the retail cost of her "maintenance" medications. I'm coming to the realization that there may well be many (or no) unexpected and unforseen rx costs beyond the SOC drugs. Trying to figure out copays, deductibles, maximums, etc. is almost as challenging as trying to figure out how to combat the disease! Many thanks for your help.
I started taking Aranesp (a long lasting form of Procrit that gets injected no more than every other week) about 5 months in to treatment. The retail on the Aranesp is around $1000 a shot. I also take a injectible medication called Humira for my rheumatoid arthritis. The total monthly retail on my meds is around $10,000. Fortunately I only pay about $150 a month in co pays.
Mouse
Mouse
I started epogen (procrit) after week 3. I was taking a LOT of riba (my decision and it greatly hurt my hemoglobin) and simply refused to cut down to what my weight based would have been...I ended up taking 40,000 x2 a week. The box of Epo cost over $6000 for a vial of ten so basically that was a months worth for me and I needed to continue epo throughout all 72 weeks (well the 69 remaining weeks). Figure $6000 x 16 months = $96,000 on Epo ALONE roughly.
My case was extreme - most people aren't as belligerent and stubborn as I am so they wouldn't end up in such bad shape but that's my stats for what is worth.
I didn't need neup - my numbers dropped a few times but each time my doc said let's wait and see if they rebound and they did.......so I lucked out there. I had enough of adding extra shots in by that point and was really glad not to add another one!
Good luck.
My case was extreme - most people aren't as belligerent and stubborn as I am so they wouldn't end up in such bad shape but that's my stats for what is worth.
I didn't need neup - my numbers dropped a few times but each time my doc said let's wait and see if they rebound and they did.......so I lucked out there. I had enough of adding extra shots in by that point and was really glad not to add another one!
Good luck.
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