I'm sorry if this will some redundant to some, I've read plenty here on neupogen and it seems to me that it's fast-acting and also comes with painful sides, such as joint pain.
I'm just wondering on feedback, how fast it acts and what the sides are like. Are the sides of any kind that would impact me from working at all and how?
Procrit seems to take 3 weeks or so to kick in and if my memory serves me right, neupogen acts alot faster...but how fast? A difference within a week and how much?
I went in to see the doc with a bronchial infection yesterday and they ran a CBC and my lymphocytes are at .1, below that magic number where my ANC won't save me. I had my "official" CBC today and I guess I'll see if they managed to bounce up between yesterday and today. I just want to be ready for the neupogen conversation if needed and what I'm getting into. Thanks.
I've read different experiences. For me, Neup was sx-free and had effect in days. Neulasta (the pegylated version) had uncomfortable sx's. I think that you are in a trial of some type? They allow such things?
Yes, in a trial and they allow rescue drugs. They don't advertise it, they don't offer it, but it's available and I had to ask for them. The trial parameters still require dosage reductions below certain white and red counts. When they reduced my riba for one week, my doc put me on procrit - eprex in Canada - as a proactive measure to avoid the dosage reduction the trial requires when my hgb drops below 10.0. IF my lymphocytes are at or below .2 from today's CBC, they're going to reduce my Peg and then I'll be asking the doc for neupogen for the same proactive reason. He's already told me he's not crazy about neupogen though so I'll see how it goes. I'm in Week 20.
That's what I was wondering, FlGuy, on the fast-acting part. The procrit, I'm on until my levels get to 12.0 hgb to get me up and away out of dosage reduction range. Costly. The neupogen, if it acts fast, then all I would need is to get those lymphocytes up and back in range again and thinking one week would do if I'm lucky. Anyway, might not need it at all and here's hoping but I learned from the riba reduction, think ahead. And, a day and a step at a time, eh?
The whole trial thing makes it a bit different. If on SOC, I'd be getting rescue drugs instead of a dosage reduction and I wouldn't be getting a dosage reduction at these ANC levels either and potentially not the hgb levels without first taking procrit to bring up the hgb. So it requires a different sort of response, as in rescue drugs to keep the levels from dropping to enforced dosage reduction range.
Kind of frustrating when I think about it with regards to others, having read of their extended dosage reductions on the same trial with no rescue drugs offered in the same pro-active approach. Next time someone asks "what do I need to consider about going into a trial?" I'll be adding a few more things to the list, I'm thinking.
I take nuepogen on sturday evenings with my daily shot of infergen. Sunday morning I cant get out of bed because of the body aches. I own an automotive shop in Florida, so I work at least 60 hours a week and its hot. Thats why I take it on Saturday so I can have Sunday to rest.
Nuepogen only raises wbc which they say you would feel bad with low blood count, but it does help. Procrit takes a fews weeks to get into your system to help raise red blood count and that you should feel a difference. Good luck Joemc
trish -- I took Neupogen for nearly 40 weeks of treatment had was a little bone achy, but not bad. After I was done with treatment, I contiued with the Neupogen to help restore my WBC. Without the other tx meds, I could feel the side effects of the Neup more - and I would term it bone aches - but still, it was bearable. Nothing to worry about. My suggestion so as to have a good CBC for your trial -- take the Neup the day before the CBC.
joem -- I don't think taking the Neupogen with the infergen is a good idea. They sort of battle each other - building and destroying WBC at the same time. My hemotologist told me to take it 24 hours before or after the interferon. Another member here said his doc said 48 hours difference. Why don't you try to do them different days and see if your sx improve.
Maybe your lymphoctyes are low because of the infection? Not sure if one day is going to make much of a difference in numbers. If you ANC is OK -- above 500 -- why take Neupogen? You've mentioned that your trial guidelines appear somewhat flexible. Use that to your advantage and present your tx team with studies and arguments to continue tx on full dosage and without Neupogen. Isn't that what Dr. D. suggested in the professional forum? You can always ask again when you get your new numbers. Neupogen is not without side effects and my medical team rarely used it for their Hep C patients.
frijole, thanks for the feedback. I've read various things and I have been getting hit with this and that thing lately. I can't afford to have it impact my work any more than it already is so I need to weight it all out.
Jim...possibly low because of the infection but it won't matter why they're low, just that they're low. However, if the levels go up as I shake off the infection, I'll hold off on the neupogen. I really don't want to add another drug unless I absolutely have to.
The trial guidelines aren't flexibile, the numbers are rigid. The dosage reductions come if the ANC is below 1.5 and lymphocytes are below .5 ...or if the lymphocytes on their own are .2 or below regardless what ANC is. My ANC has been hovering just above 1.5, lymphocytes between .2 and .5 so I've been okay so far. ANC has risen to 2.4 or so, so figured I was home free on the whites til I saw Tuesday's CBC with lymphocytes at .1 which cancels out ANC regardless of what it is. I'm not going to get all worked up about it, will wait til I get results of the CBC today or tomorrow.
Dr. D. suggested that I go with rescue drugs wherever possible rather than dosage reduction and yes, to keep drugs at 100% as much as possible. Dr. D. said "rescue away!" :) That's what my doc is doing, has me on procrit so that I don't get another ribavirin reduction. IF my lymphocyte count remains low, it'll mean a Peg reduction. So, I'm thinking same principle applied to the white count and Peg means using neupogen to get the white count up again. We didn't do the neupogen at the same time as the procrit because my doc doesn't care to use neupogen all that much. If my doc thinks it's the chest infection for my lymphocytes being low, I'll hold off on asking for neupogen. I can tolerate a one week Peg reduction but I'm not going to settle for a longhaul Peg reduction.
Anyway...I'm just going to hope the lymphocytes went back up and it IS the chest infection. Didn't think that would make them go down but hopefully that's what it is. Thanks Jim.
I actually do think your lymphcytes and neutrophils are supposed to be higher than normal as you fight infection -- not lower. From what you said, they will follow package guidelines for the meds- -- i.e. - reduce your dose of interferon when the ANC goes below 1.5. Although I agree with Jim that your ANC is adequate to treat without Neupogen , you don't want the dose reductions, and Neupogen won't hurt you.
What he seemed to say was that rescue drugs are preferable to dose reduction, which I agree. He did not suggest you needed rescue drugs, and in fact no ANC figures were not given -- and therefore nor was that question asked -- if I have the correct thread. I understand you have guidelines and hopefully you will do what is in your best interest.
I used Neup., towards the end of one of my treatments when my white cells and neutrophils dropped too low. I was on if for about 8 wks. It did get my white cells and neut. to come up, but it also caused a lot of bone pain. The bone pain subsided after I ended treatment and that was over 2 yrs ago and I haven't had anything real critical come up from having used it.
Okay, Jim. We're splitting hairs here it seems but I should be more precise.
I did not mean to imply that Dr. Dieterich suggested that I NEED rescue drugs. Only that if there is a choice between rescue drugs or dosage reduction then you go for the rescue drug first every time. And that became my choice albeit take the rescue drug to keep away from dosage reduction territory. A little different, a little out of the box and better than bouncing in and out of dosage reductions all the time. I like this pro-active approach.
Forget about regular SOC. If I were on regular SOC, I wouldn't even be talking about neupogen and there's a good chance I wouldn't be on the procrit at the moment either because of my tolerance for the low hgb level and because it probably would have popped up and down and I would have simply handled it, the doc would have let me and I would have been able to be stubborn about it on SOC. However, I'm NOT on SOC. So push all that aside. Just pretend that SOC for me is the trial guidelines, which are reductions of Peg if ANC<1.5 + Lymphocytes are <.5, or if ANC is <1.5, or if Lymphocytes only are =<.2. Reduction of Riba if hgb is <10.0.
In this trial, what I'm trying to do is keep OUT of dosage reduction range because they will STILL reduce my drugs if my levels go below the trial requirement. They will NOT introduce rescue drugs first and hope the levels go up. It's an automatic reduction. Been there, done that and don't want to do it again, if you recall. SO....I'm on procrit/eprex to avoid any further riba reductions even though my hgb is in the lower to mid 10.* range now to get me up and away from dosage reduction territory.
As for neupogen, was asking about what I'm getting into when it comes to neupogen in the event that I have to have that little discussion as well, as my little adventure in the ER was looking like it might come to pass this week. However, I missed it today, my lymphocytes are back to .4, which they're not exactly thrilled about because they just aren't coming back up but I'm still not Peg-reduced so I'm good.
Does that clarify at all, Jim? I'm sorry I can't say more with less. Never been my strongpoint.
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