WBC still dropping

[doll face]

I am starting to get scared now and need some feed back from my fellow heppers.

About a month ago I asked my doctor about starting neupogen because my WBC was so low. He said that I didn't need it yet because my neutriphils were still okay. Then 2 weeks ago he called and told me to do 2 weeks of the neupogen because my counts had dropped again. I did do 2 shots and had my blood drawn yesterday and my WBC has dropped again to a now record low of 0.9. My doctor said that he can't understand why after 2 shots it continues to drop and he wants me to cut my peg shot in half now.

I only have 16 more weeks left of 72 and really don't want to take a dosage cut now this far along into tx. Any advice?????

Oh I forgot to mention that my kidneys have been extremly sore lately do you think it has anything to do with low WBC?

5/19             6/22                 7/19           reference

WBC  1.1            1.1                 0.9            4.8-10.8
RBC  2.96           2.83                2.79           4.2-5.40
hemo 9.8            9.6                 9.4             12.0-16
hema 30.8           29.5                29.7           37.0-47.0
plat 103            110                 101            130-400
neut 41.9           29.5                34.2           40.0-75.0

[layla]

Do let us know how things are going.  Hope your labs are better. LL

[doll face]

Thank you everyone for all the good vibes, well wishes and suggestions. I am still a little antsy about my counts but have had a day to think about what I will do.

I just got off the phone with my stepmother and when her WBC dropped to 0.9 they immediately admiitted her into the hospital for an IV injection of antibiotics. She was there for a week and during that time she got thrush, her kidneys started to fail,her throat closed up and she almost didn't make it through a simple cold because her immune system was so low. I have already lost my thyroid because of these meds, and do not intend to lose anything else to this dragon especially since I have relapsed once. I will be doing blood test again tomorrow and if my counts have not gone up at least a little than I will do a reduction of the peg. If my counts do not go up within 2 weeks or if they drop any lower at all then I have no choice but to stop treatment. I can not risk everything for this disease. Since I do not have any liver damage at this point, then I will wait a while for something new.

I know that I have always thought positively regarding this tx but I just cannot any longer risk my life to fight a battle that I do not know for sure I can win.

I will keep you updated on my results. Thanks again for all your concern.    Kim

I would like to hear from anyone else whos blood counts have dropped so low.

[Showboat]

Sorry to hear that you are having some problems.  You certainly have already gone the extra mile.....I did have the same type of pain, usually after doing anything that included bending, or using my ab or back muscles...even sweeping the floor with a broom made my kidney area ache for weeks.....I always drank alot of water, and tried to drink more at those times....It seems as if my back (kidney area) ached most of the time while on tx.  It was miserable, and I can relate to the discomfort and pain you have...makes you want to cry, and it is down right scrarey and depressing.  My PA never seemed too concerned, but your counts are lower than mine..(as someone mentioned, it could be because of the longer time on tx)  I am sending out good vibes to you, and hope you feel better.........you are a tough gal.

[TnHepGuy_]

I agree about asking your doc why he wouldn't put you on a more frequent regime of Neupogen (i.e. - 2x/week or 3x/week) before deciding to summarily cut dosage. As you've seen, there are more than a few examples of patients receiving Neupogen in these quantities - and then dosage adjusments are made in relation to WBC/nuetrophil results - all done with the goal of maintaining interferon levels.

In my case, I was given one shot at week #5, then again at week #18 (I do shot #25 this weekend). But more recently my WBC's and neutrophils have trended lower - and as a result I am now doing one shot of Neupogen every two weeks. Since I have another 24 weeks to go, I wouldn't be surprised if I had to increase the frequency of them. But one of my goals from the beginning has been to not lower dosage - obviously not at any cost - but with the tools available (i.e. - Neupogen and Procrit) to intervene proactively - as opposed to reactively and trying to play 'catch-up'.

I don't know what the sore kidneys might be realted to, but it is definatley something to bring to your doctor's attention - sooner rather than later.


May God's blessings and mercy be upon you.


TnHepGuy

[Southernboy]

Hi there,

I don't stop by often but was browsing and figured I'd catch up.  Maybe I can help with some of your questions.

Neupogen effects are usually almost immediate and last about 72 hours after administration.  How much are you on?  The docs started me on 150 units 1 time per week and then bumped it up to 150 units 3 times per week.  I am now on 150 3 times per week or 150 2 times per week depending on how the counts are.  The rest of your numbers look ok, although your RBC and Hemog are getting a little low.  You might want to ask your doc about Procrit.  This med takes several weeks to take effect.

I hope this helps and best to you.
Steve

[Ella Mackenzie]

I am also n 150 m Neupogen 3x per week and my wbc went up right away. I get shots mon wed fri and by Monday, my counts are low again. I would take your doctor's advice and reduce your dose. You wouldn't want to get a nasty infection at this point. Or maybe increase neupogen.
good luck

[doll face]

Thanks for your imput. I am on 300mcg neupogen a week for the last three weeks, but my WBC still continues to decrease.I will be going in for blood test again on Monday.Could it be that it is working and that my test are being done 5 days after injections and not acurate.Do you think that I should get my dose changed to twice a week to keep it level in my system? I have been on procrit (40,000 U per week) since November of 2003.
Fortunatly I have only had to decrease my pegasys once since I started tx 56 weeks ago and that was the week I started the procrit and only for 1 week. Hopefully the dose cut this time will also only be for 1 week.

Southernboy huh? Where in the south are you?


ALL on neupogen: How much and how often do you do the neupogen shots?

[Southernboy]

Hi again,

I am in the beautiful state of Arizona, about 60 miles from the Mexican border......where there are more Border Patrol agents then people and people's dogs are almost as scared as they are when Indiana is around.

Yes, I think you should adjust the dose of Neupogen.  This is what was done with me until an optimal treatment schedule was found.  If this doesn't work then you might have to adjust the tx meds.  Remember, I am not a doc.  You should speak with him/her about this right away.  PS. My AN has been as low as .59 and although not happy about it, my docs did not reduce dosage for this reason, they played with the dosage and frequency of the Neupogen.

Best to you,
Steve

[Amerabrit]

These results must be quite worrisome for you, I'm sorry.  I'm reading the responses carefully and hope you're able to hear some good advice.  Very best of luck with your tx choices.

[honey1616]

Hi,,,Your sore kidneys?  Are you still drinking lots of water?  I have noticed on days that I don't drink as much water that I can definitely tell.  Yes,,,I would definitely bring up to your dr and also I have noticed that some on tx do get kidney infections.  Good Luck!

[raheem]

How are you?  I did 48 weeks of tx.  At 29 weeks my Interferon was reduced 25% (from 180mcg. down to 135mcg) because of low WBC and ANC.  I continued on full ribavirin dose and 75% Interferon dose until the end at 48 weeks.  I was genotype 1b, clear at 12, 24 and 48 weeks.  I'll be getting my 3 month post tx bloodwork next week.  I  feel good about it.  I think you'll be fine after doing so many weeks already and a reduction won't blow it.  Don't let the tx kill you.  Take care.

[cuteus]

I guess 66 wks on this stuff takes a toll...I can't believe your hemoglobin is still so low even though you are on Procrit...hope you feel better real soon.

[Indiana]

I'm pretty much in agreement with the others here. Ask to split your Neupogen shots up to 2 or 3x per week. And get your blood work closer to your Neupogen shot to give a more accurate reading.
But all that aside.....I had to reduce my Peg by about 25% late in my Tx. I forced the issue and got weekly blood tests until my white counts cam back up after 3 weeks. I immediately went back up to my regular doses after that.
I WAS a 1B and still cleared just fine after 50 weeks of the meds....even with the reduction.
I agree that the BEST case would be to keep your Peg doses up and work with the Neupogen dosing to solve this problem. But if you have to reduce.....don't panic. As late as you are in your tx it really should make no difference in the end.
Let us all know what happens.
Take care sweetie........

[layla]

I don't know about the neupo but I also have had sore kidneys. At times it felt like someone had beeen kicking me I was so sore and tender in that area. Is it like that feeling? LL

[DH Bill]

I believe maj neni had a similar experience and is now 6mo SVR. I think she is currently out of town or I know she would respond

[mikesimon]

I'd follow the doctor's advice. I don't think cutting the dose will affect your chance of SVR. You've done 66 weeks already so I think you'll be okay. I haven't had any experience with neupogen so I have no idea how long it generally takes to see significant elevation in WBCs. I'd take the advice and try to get labs in a week or so and see if things haven't improved. Don't dispair over the dose reduction. I've known many that have decreased for a period of time and still achieved SVR and the people I know weren't doing extended tx. Good luck. Mike

[doll face]

sorry my test results are so hard to read, that is not how I typed them in, but how they were printed after sending them.

I hope someone will be able to read them and give me some advice. Thanks Kim