Neupogen

[TeeVee36]

I just read that a lot of people try NOT to take Neupogen unless it is a necessity due to sx.  I am on Neupogen and I take it 3 times a week and have been taking it for 8 mos. now.  

Does anyone know exactly why people/anyone would want to NOT take Neupogen?

Your answers may provide some insight for me and my sx's.

TV

[NYCMark]

On the other side of the coin, I took Neupogen occasionally when the ANC was in the 300 range, and had no side effects at all. Zilch. SO it's different for everyone.

Mark

[sfbaygirl]

Uggg. I can't tell you how much I hated that stuff. Migraines for 10 days straight along with the bone pain is enough. I used to hide from my dr so I wouldn't have to take it. Some dr's say let the ANC go down to 500 on tx, mine wanted me to get shots at 1000. As Alagirls says it's not as important for us to get those shots as it is for cancer patients. If you have been on it for 8 months and aren't having problems with it,  then take it. You didn't mention your ANC count or WBC....

[Bill200]

I had the same sides as described above.  Actually it was worse than the INF.  The PA kept insisting, "it doesn''t have any sides."  I thought it was just me.  :)
Speaking of the expense, I had like a whole package or two of shots left when they took me off treatment.  Along with a couple of bottles of Riba and package or two of pegasys.  I took it all to the hospital and gave it to my PA.  I think it was about $14,000 worth paid for by my insurance company.  They were sure happy to get it and said they'd give it to indigents.

[TeeVee36]

Thanks for your posts.  I guess I am lucky because I have been taking Neupogen 3 times a week for 8 mos. now and I do not have any bone pain or aches of any kind.  They almost upped it to 4 times a week at one point.  

My sides are basically, feeling weak and tired with no motivation or ability to do much.  Every now and then I become very emotional and have a day of crying outbursts.  I feel sick to my stomach a lot.  Have some hair loss, dry skin, dry out sinus', riba cough, riba rash etc.

I will be done in May or June not exactly sure.  I am on the 48 wk tx plan and I took my first shot on June 15, 07.

Thanks again,
TV

[susan400]

I had no choice but to do the Neupogen when I was on the daily Infergen 15 , it dropped my WBC's so low that it was either, stop the meds, or do the Neup.  Since I was so desperate to try to get viral clearance, I did the Neupo. I was on twice a week dose of it.  My doctor held off giving it to me until my WBC/ANC was so ridiculously low that it was no longer an option.  I was also on the Procrit with it.  Prior to him starting the Neup., I had to just about be isolated from any type of group gathering, attending church (which had over 400 people at it), being around small kids, or sick people; because of the doc's worrying about my getting an infection.   Yeah, it adds to the sides.

Susan

[sfwandwow]

yes it made my bones hurt like i cant explain..

[sfwandwow]

i took neupogen for about 18 weeks and they took me off due to i was getting to elevated.. now iam stable with WBC

[alagirl]

p.s. its not the end of the world either way.  If you do end up getting a shot just try to prep for it by taking some pain meds ahead of time and by maybe just keeping a little more pain medication on hand that week.  Then you'll know if it works ok for you and you can go from there.

[alagirl]

It can be very painful, particularly for those of us already on high doses of procrit.  ALSO though, there is a school of thought (to which I subscribe) that we hepc patients are healthier than cancer patients and can tolerate lower wbc counts than the cancer patients who are on chemo and are the typical recipients of neupogen.  Most hematologists aren't used to our population, so they do try to push this drug, but some people have had anc fractions that are quite low without doing neupogen.

I've had to have two shots now and I absolutely hated them but I have transfusions and they sometimes won't let me go home without doing certain things they feel cover them in case of liability and I do cooperate if it comes to that and I understand that.  As a physician I would be the same way, I'm sure.  In fact, I probably wouldn't let me get away with a lot of things I do, so I'm fairly lucky.

[Deb_c430]

I know the feeling, I hate it also!  The bone ache is awful    I get so tired,   not so much emotional, (hello effaxor!)

On the same round of it,  

Nope not just you!

[orphanedhawk]

Why I hate neupogen, let me count the ways.
Honestly I truly hated it. Besides the bone pain it made me even more of an emotional wreck. Its hard to say if my sxs were accumulative from doing tx or if the neup made it worse.
I'd do a shot, feel exhausted, short of breath and b!tchy for a day or so, have a day or two with some energy and round I'd go again. It may just have been me.

[Deb_c430]

Bone pain,   I have it twice a week.  Agrees with Susie,  but would add to also base that on CBCs,  

Good news I guess is that it means ts is working.

Good luck
Deb

[Susie2007]

Neupogen is very expensive. It can also cause bone pain in some people and make them very uncofortable. It is always better to take less things if you can.