when do you need Neupogen

[mom4two]

I was in the hospital this weekend emergency gallbladder surgery.
I was seen by GI dr while I was there (not mine) and he said my wbc was low 1.8 and wanted to give me a shot of Neupogen. I asked if it could wait until I saw my own dr because I was part of a study that would pull me if I needed "rescue drugs" I saw my dr and he didn't seem concerned with my wbc.  When is your wbc low enough to need Neupogen.  


Lori

[NYgirl]

I have been at about 1.0 the entire time of tx and my doc didn't put me on it.  I think you have to be around .5 or something but am not exactly sure.  My WBC has always been low since the beginning.

Actually both RBC and wBC are low.  Wonder what the leaves in there?  ;)

[mom4two]

I think that leaves you with interferon and ribavirin  Stay out of chuck e cheese you'll be sure to walk away with a cold.

[sfbaygirl]

My WBC is 1.7 and Dr, wanted me to cut my tx drugs. I had a shot of Nuelasta last week. I have never slept so much in my life!  My Neuts were .7 down from 3.5 as well. I think they look at the Neutrifils as to the nepogen.

My Hemotologist said my Hgb should not be below 12 and my neuts should not be below 1.0. If they are to come in for a booster.

I feel like a yo-yo. One week low Hgb, next week low neuts and WBC. I sure hope I will stablilize. I told dr. that if I only took drugs when these #'s are low it could be a real roller coaster for me. Especially the Hgb. It takes a few weeks to get back up there.

These rescue drugs are wonderful, if they keep me from having to stop txing. There are worse things than sleeping all the time!

[friole]

Lori,
Sorry about the gall bladder. Doctors always get worried when the WBC is low, especially if you are in the hospital where infections run rampant.  I think if I were in your position, I would have let them give me the shot.  I don't think that your Hep doctors would have pulled you off treatment just because you had gall bladder surgery.

As far as treatment for Hepatitis C goes, the doctors look at the absolute neutrophils, not the WBC.  It is shown on your CBC as ANC or #NE.  Some doctors reduce the interferon if the ANC drops below .750 but others will let it go until it reaches about .400.  My hemotologist wanted me to start neupogen at about .750.

What is your back-up plan if they pull you from the study because of low counts?  Will you go to a conventional doctor to continue treatment?  I would think this is a real problem about studies.  I hope you don't get pulled.  I sugget you get copies of all your bloodwork.  Even tho it is a study, they are your records.

[NYgirl]

Right that is what I meant was hanging on at 1.0 the neuts not the WBC which I thought you meant!

99.999 of the doctors treating will NOT prescribe Procrit or Epogen until you drop under 10 so if your doctor doesn't...don't be shocked.  

It's a very strong EXPENSIVE med with potential sides of it own and they just wont. Its very standard (and really much higher than that you DONT need it.  It's under 10 that it really get pretty bad. by the time I got to the doc I was at 9 - from 15+ to 9 in just over a week = it was DEVASTATING.

[sfbaygirl]

I'm not sure why my Dr, gave me a shot for Hgb at 11, perhaps because I dropped so quickly like NYgirl. I am sure glad he did give me the shot though, I was a MESS!  

Has anyone used Neulasta? It is a longer lasting neupgen drug for low abs neuts. Before I took the shot last week, I could hardly sleep at all. Now that is all I want to do. So much for needing that Sonata to sleep! Wondering what sx anyone has had with these drugs.

Thanks

[FlGuy]

hemotologist gave me Neulasta once, instead of Neupogen.  Neulasta is the pegylated version of Neupogen. With several shots of Neupogen i never noticed any sx's.  With the Neulasta, I got some joint and bone pain - mostly in the legs.  One Neulasta shot is about 7 times more expensive than Neupogen but I'm sure it doesn't last 7 times longer.  Doc gave me neup/'lasta when ancs went below 1000 which is sooner than most folks here report.

[sfbaygirl]

At least ONE dr. cares how I am feeling. The dr. gave me neulasta when I hit .7 anc.  He said to call if it was below 1.00 for another. Just wondering about all this sleep!

Neulasta is 7x more expensive? Where do you find out the prices of this stuff. I just let them do the shot and hand the bills to the ins. co.

Aranesp is probably more expensive than procrit too, as it is pegelated form of epogen. It is a wonder drug.  

I guess my Hemo says only the best for me...at least I feel special !

[mom4two]

thanks for the information. the dr. in the hospital said the neut. was at 52% the only thing that made me feel better is that they took the test the day after my shot, so I'm sure that affected the outcome.  If I get pullled from the study I'm pretty scr***d because I started treatment in Feb and I started new health insurance March 1.  so I'm sure they would consider this prexisting.  It wasn't explained how easily you could be pulled or else I would have reconsidered the study.

Lori

[FlGuy]

The hemotologist sends me a statement each month showing what they billed to the ins. co.  For each shot of Neupogen they billed $400 for 480mg of Neupogen.  For Neulasta, they billed $3500 for 6 mg.  The price and sides of Neulasta made me a Neupogen fan.

[NYgirl]

Said:  I'm not sure why my Dr, gave me a shot for Hgb at 11, perhaps because I dropped so quickly like NYgirl. I am sure glad he did give me the shot though, I was a MESS!



Do you mean that the doctor gave you "a shot" of the Procrit and that was it? Or are you continued on it? If you only had ONE shot then I don't think it was epogen/procrit because it takes at least 2 - 4 weeks just to START working.  when I went down over 6 points in a week and was a 9 = the one shot a week did nothing except keep me from dropping even lower.  It wasn't until I was doing 2x @ 40,000 a week that it went up.

As with everybody except Mr. BB on here - I have to do my shots AT HOME - the doctor won't do them, neither the NP.  They give a class that teaches you how then you are on your own.

I'm just wondering if it isn't Procrit what drug he might have given you?

[sfbaygirl]

When my hgb went down from 16 to 11 within a week or so, my GI said he couldn't help me until I was below 10. I called the hemo doc and he said get another CBC stat and come in now. He gave me a new drug called aranesp, which is like procrit but lasts two weeks. I have to go to the dr. to get them.

My Hgb went up to 13 and he said when I go back down to 11+ to come in and get another shot of aranesp. In the meantime my anc went to .7 so he gave me neulasta, another newer long lasting (10 days) drug.

I am supposed to watch my CBC's weekly and call him if I go down to 11+ hgb, or below 1.0 anc.  He will then give me a shot of either, as needed. I can't imagine being a 10,or 8) all the time. I suppose you get used to it.

I told him I didn't want to be on a  roller coaster, esp. with the Hgb as it takes so long to go back up again.

Anyway, I sure feel like I am on a roller coaster. John asked me today, if I liked roller coasters before I started tx.

We are going to watch Jumanji tonight after my shot #7.  Hoping I stablize on these poisons soon. It would be great to count on something.

Flaguy; What sx did you get from neulasta? At that price they ought to make us feel darn good!

[NYgirl]

That's right I remember reading that arensp however you spell it that you said you were on.  It sounds to me like it might be worth just letting the hgb go to 10...and then give yourself the weekly shot.

Once your body ADJUSTS - being in the 10s doesn't hurt a bit. I think it's really the first jolt of anemia, having a drastic drop so fast that gets you...then when they get you on the Procrit you will find that as long as your numbers stay relatively static it seems you feel ok.

I would hate to go up and down and up and down, that has to be tough.

(Have to remember it's Epogen night tonight, couldn't take it last night cause I didn't have any more syringes...idiot!) :)

[NYgirl]

I was reading on arensp to see if it would be a better choice for me (lazy girl who hates needles) and it says that it works the same way as Epogen or Procrit and that

It may take up to 4 weeks before the full benefit of this drug takes effect

Which is ALSO the same as Procrit.  I don't understand he only gave you one and then nothing - no wonder it will go back down like a yoyo.  It says for this that they prescribe it around 11 which is where you were right? So why not just keep you ON IT.

Nothing I've read said this is a longer lasting drug than Epo.

I'll keep looking.

[NYgirl]

The instructions say take it once a week IV or subcutaneously.

You should ask the doc about that...why make you go up and down like you are right now?

[sfbaygirl]

Yep, it would seem to be easier to just take the procrit myself each week then deal with possibly going up and down. It's been 3 weeks now, so my CBC today should be telling me if it is going down again.  

I think you are right about the big drop being the worst. It seems like lots of people are at 10 and stable at least.

Goofydad gave me a name of a Hep dr. he goes too. I am going to make an appt. and hope to be in some better hands than I am.

[NYgirl]

"Increased hemoglobin levels are generally not observed until 2 to 6 weeks after initiating treatment with Arensp."

www.fda.gov/medwatch/SAFETY/ 2005/Aranesp_PI_10-26-05.pdf

I don't get it.  Same as Epogen or Procrit.

[sfbaygirl]

Hemo dr. said he likes aranesp b/c you only need to give a shot every two weeks, instead of once a week like procrit. It makes sence it takes just as long to build up those red cells. If they went up fast, we would most likely not feel to good either.

I was 11 when he gave it to me. I would have liked to continue so I don't have a drop again. Maybe I won't. If I do, I may have to have a discussion with my hemo. He treats a lot of cancer patients with this drug. I don't want to do the yo yo. Hoping my Hgb will just stay normal...fat chance?

[GoofyDad]

I think it's often an issue with Ins. My nurse said she usually can't get it approved until 11, and sometimes lower. She submitted mine at 11.5, IIRC.

When the shot is administered by the doc, I think it falls under a different approval protocol than it would were it ordered as a prescription.

The drop from 15.5 to 10 was a whack for me, but it was OK. From 10 to 7 left me more incapacitated, but maybe I was better adjusted to dealing with it. No, come to think of it, I wasn't. hat period was rough.

[FlGuy]

I liked having the hemo office do it all, shoot it, bill it.  I didn't have to mess with rx's. And, they let people move to the front of the assembly line if it was a shoot 'em and ship them out visit. Interesting about the possibility of insurance having a different view if doc's office does the injecting - I'll remember to ask about that.   I think my new doc does not include a hemo in the equation.

[Drarig]

I've been on Neupogen since about week 5 or 6? My wbc goes up & down -- lowest being about 1.  My doc isn't overly concerned with it, but does have me on shot of Neupogen once a week - he's more concerned w/neutrophils.  I don't mind being on it, but day after I give myself a shot, I get very achey (achy), especially if it's falls on a day I have to teach a kickbox or bootcamp class.  Amazingly enough, TX hasn't affected my energy or fitness level, but the Neup does take me down a notch.

[sfbaygirl]

My hemo didn't get approval for the aranesp or the neulasta. He just shot me up and shipped me out. I guess b/c it's from the dr office. Also as Nygirl read, the protocol for aranesp is 11+.

This shooting and shipping reminds me of when I was in Morroco in the early 70's. There was a colera (sp) epidemic and everyone leaving the country had to get a shot. There was panic and people pushing each other out the doors. As we went out they stuck us with a shot, airgun thing I believe. Could be where I got this dang virus, come to think of it.

[FlGuy]

I've read a few articles about the possibility of hcv transmission via airguns.  Back in the military days, I spent time on those lines with my sleeve rolled up.  I expect a lot of vets, who don't know the source, may suspect the airguns too. I don't remember if they even alcohol-swabbed the guns from one person to the next.

[sfbaygirl]

They sure didn't swab anything at the border. People were pushing to get out of the country. It was a sight. I have read some posts on the VA web site about those airguns. Many vets think they got Hep C from these. The military denies alot of these claims b/c it is hard to prove.

[FlGuy]

'plausible deniability'

[Dale_Ray]

I'm on Pegasys/Copegus, genotype 1A, My ANC went down to 300 when the doctor placed me on Neupogen. In two weeks after adding the Neupogen I was up to 1200. Last week I was at 1800. It's a constant balancing act for the doctors to try to keep your chemicals in order and worry with the inter-action on each. My doctor doesn't worry to much if I can keep them above 1000. The Neupogen works well but it does take the starch out of my sails. Take care and hope the surgery and recovery is doing great. Dale