Hemoglobin down to 10.6

[illona]

My hemoglobin went down to 10.6. My doc give me Epogen 40,000  once a week.
How do I know if 40,000 is a good amount for me? And how fast the medication start working?
About myself.
36 Female. 1b. Pegasys/Riba. 8/48 on tx.
Thanks
illona

[amommy]

I'm not on procrit myself, but have learned a little from reading on here :)  
It takes a couple of weeks to kick in, and I believe the only way to tell how well it is working is to have your hgb tested again.  You should also start to FEEL better.  It should get easier to breathe, you may be less tired etc. etc.  
Is your doc monitoring you closely to determine if you are on the "right" amount of procrit?

[Dale_Ray]

You're fighting with the reds and me with the whites. I'm taking Nupogen and it is just starting to give me some breath back. Amommy described what it feels like with the whites down too. I didn't realize that both felt the same way. Good luck and be patient. I hope you feel much better by this reading. Dale

[illona]

I am not sure .. She took blood for CBC today morning. I ma waiting for her to call me back. When she gets results back from a lab but in meantime she told me when I get epogen start usining right away once a week. and after a first shot every week for a blood test to see how is my hemoglobin doing.

[illona]

my whites is down to 2.7 also. But she told me, she worried more about my hemoglobin then whites.. I am not sure why? and now low can whites can go down before I can notice.

[jmjm530]

40,000 units seems to be the standard start dose. That's what I got. Usually takes 2-4 weeks to kick in, so always a good idea for weekly or bi-weekly cbc's until hgb stabalizes. Ask for an Iron Stores panel the next time you draw blood and periodically during treatment.  It will include Ferritin and Trans Ferrin Saturation (TSAT). If your Ferritin is below 100 and the TSAT is below 20% you may need to use supplemental iron. Good luck!

-- Jim

[jmjm530]

Your whites are fine according to what I've heard and a lot of docs don't even use them as a gauge. More important is absolut neuts (ANC). Some doctors intervene with Neupogen when it drops below 500. Others wait till it goes as low as 200. My NP said their practice rarely uses Neupogen because ANC tends to bounce up and down a lot. My ANC varied from 320 to over 1500 during tx and sometimes bounced as much as 700 points within a couple of weeks.

-- Jim

[Mister beagle bailey]

My HGB dropped to 7.1 even with having 40,000 units a week of procrit.  Then they upped it to 60,000 units a week and it took almost 6 weeks to finally kick in .  The only way to know how the procrit is working on you is to have your HGB checked each week, everyone is differnt.  I did have anemia before starting tx that's why the 40,000 unit was not enough for me. As your only on week 4/48 I would have the HGB checked weekly.

BEAGLE

[Moniker]

My HGB has been at 10 for most of my treatment. Last week the doctor said it had dropped to 8.4. I asked if I should start Procreate but the doctor said I'm so near the end of treatment  they didn't want to start Procreate now; I'm coming up on week 42. I feel fine. I take deeper breaths and yawn to get more air and I'm ok. I did a lot of yard work and it didn't bother me. I'll get another blood work in two days, this Thursday.

[Moniker]

I intended to write Procrit, not Procreate. I used my spellchecker and didn't see what it had done. Also brain fog from low HGB.

[jmjm530]

I suppose your doc figures the Procrit  won't start kicking in until around week 42-43, so why rock the boat now with more drugs. It's a reasonable approach but don't be surprised if they suggest a riba dose reduction hgb keeps falling. Hopefully, they'll be doing weekly CBC's from this point on.

-- Jim

[NYgirl]

Honestly I'm surprised that you were even approved to be put on the Epogen at 10.6.  

When I first went on I had dropped from 15+ to 9 in just over a week. He put me on once a week @40 and after a few weeks my HGB still did not go UP but it hadn't gone down any lower than 9 still. It held me steady.

So THEN he upped me to 2x a week at 40,000 and it started to raise a few weeks after that. When it got in to the 15s again - we dropped back to once a week and it's SLOWLY been going down.

I'm about 10.5 right now and on once a week and feel fine. It's not always the number remember but how fast you get there. At some point your body DOES become used to it.

Give it time - let the doctor see what happens with the 40k at first. You know all of these drugs are just that DRUGS...so you do'nt want to put in more than you have to unless necessary.

[illona]

Thank you very much..
I wish all of you best of luck.

[Mister beagle bailey]

Well, just got my HGB and it's 7.4, down a bit from last week,  but doc said I look good and is not concerned at the moment as I feel fine.  Will see what happens over the next few weeks, have 7 weeks to go on meds. Wish HGB would had north again.

Beagle

[anise]

Is it true that one can get used to the low HGB?  I have been steadily dropping from 15.1 to 11.1 (last week).  I have been very tired these days, but seem to feel a bit better from the past weeks.  My NP isn't going to give me a blood test until May 10th.  Maybe I shouldn't worry about the dropping HGB since it has been slowly dropping.  What do you think?

[friole]

illona, you have a great doctor to rx the procrit when you are in the 10's.  I also started procrit when my hgb dropped to the 10's and was very thankful for it. They said it would take 2-4 weeks, but I thought (maybe it was mental) that is helped within a week.  Like Jim said, the standard starting dose is 40,000 units.  If your hgb increases more than 2 points, they may have you take it only once every two weeks. (If it goes up too fast, the blood is thick, and it could put a strain on your heart.)  Once you start the procrit, you should be getting weekly CBC's to monitor the counts -- sounds like your doc is right on top of it.

Hints -- Epogen/procrit stings a bit more than the interferon.  Let it warm up a bit first.  Inject slowly.  Believe me, it is worth the burn.  I use my belly and hips for the procrit and neupogen and reserve the thighs for the interferon.  Seems to work better for me anyway -- the interferon makes my belly itch, but the others don't.

Your white blood count looks okay - but look for the absolute neutrophils (NE#)and tell us what those are. My WBC hovers at 1.5 and my ANC (NE#) stays around .6 even with weekly neupogen. I disagree with Jim on his assessment of when you should take Neupogen, by the way.  First, mine does not go up and down, but hovers at .5 -.7. Neutrophils are the type of white blood cell in charge of infection fighting and in my way of thinking, it is important to keep them up and running, and if the Neupogen helps, I am all for it.

[dyce]

Hello there, you and I started tx the same day. My hmg last week was 11.3 and I go for cbc's tomarrow . The hmg feels like it's dropped more . so I'll see tomarrow. My white blood count and anc are also down and I've caught another illness at work, can't win but I was in top physical condition when I stated tx so maybe thats helping. You must have a good doc to get ya on the blood boosters at the 10 level. How are you doin other than the blood dropping? Any riba rash or rage yet?

[illona]

friole,
i checked my Neutrorhils absolute 783   normal range 1500-7800
I am not sure what does it means? I will get my epogen tomorrow morning nad my next blood work a week from a first shot of epogen..

dyce,
I had some bumps in my mouth which is better now, but I could not eat anything for a week. Only food I could swalow it was ice cream and cold soda.. Like everybody else in here I got riba rush but with gold bond triple action( thank you for a advice ) it'd helps me a lot.
I got my PCR after 6 week on treatment I got 2 logs drop. not UND yet.. still waiting for a miracle call from my doctor to keep me going.
How are you?

[NYgirl]

Said:  Is it true that one can get used to the low HGB? I have been steadily dropping from 15.1 to 11.1 (last week).


Yes. It seems for some reason if it goes very slowly it's NOT that bad.  I am at about 10.5 right now and coming to work every day without any MAJOR problem (of course Im tired goes without saying).

When I first had the BIG DROP I was a mess - it was nothing like this at all so I do believe if it's a gentler drop our bodies can handle it.

Look at it this way Mr. Beagle can handle a 7 BUT he started at like 12, compared to most of us who start in the 15 - it's like us dropping to 10.  If it happened to him FAST he would have been devastated but it happened so slowly he didn't really HAVE too big of a problem feeling like he was going to die.

Did that make sense?

Still the Epo - REALLY works. I thank GOD it was invented. I'm only taking it once a week but pretty soon will be back in the 9s and will have to do twice again. No biggie.

[anise]

Yes, it does make sense.  I feel tired and have for some time, but my HGB has dropped, what I think is slowly.  15.1 to 11.1 over 10 weeks.  In your opinion, is it o.k. that I am not getting a HGB test until May 10th.  Am I waiting too long?

[dyce]

I'm not to bad , the usualsx's. Yesterday I mowed the lawn and I figured  the ultra violets wouldn't be to bad , man I'm payin today even though the clouds hid the sun. I shoulda listened to jim and used the sun block I'm goin out tomarrow and buy a sombarro and some sun blocker clothing!

[can-do-man]

Over 10 weeks thats not to bad a drop. I went from 17.5 to 12 in about 10 weeks. Hepo thought that was fine. Its them quick drops over a couple weeks that are scary. Mine has stayed stable at 12. Doc said as long as i don't feel any worse then i have since it hit 12 not to worry. BUT if your feeling worse and worse everyday then waiting that long is to much. If i was you id have it checked right away, wouldn't wait. Since procrit takes a couple weeks to kick in. You don't want to have your dose reduced if at all possible.

I know im not nygirl, shes much better lookin. But shes prolly off work by now. Take care of yourself and leave them bricks alone.

[anise]

Well, you made me feel better about the HGB drop.  Yours was more of a drop.  Funny thing, my HGB only goes up to 15.5???

I am not feeling too bad, actually much better than a couple of weeks ago.  Probably because I quit hitting them bricks.

[can-do-man]

said.......Probably because I quit hitting them bricks.
-----------------------------------------------------------------------------------BINGO-------------------

Ps Forgot to ad what a very nice gal you are.:)

[friole]

illona -- You are still fine with ANC of .783.  Yes, it is low, but we who have low neutrophils due to hepatitis C treatments, do not seem to get the infections that cancer chemotherapy patients get. If it gets to .500 your doc may rx the Neupoogen. The Neupogen is not like the Procrit - it does not build up in the system, but is gone in a few days.  I think there is a pegylated kind, but I don't have that one. I would trust my doctor on this.  If he says it is time, then so be it.  I didn't start the Neupogen until week 15 and the Procrit until week 17.  Even now that I am taking the Procrit every week, my hgb is lingering in the high 10's.  I feel okay so I guess you just adjust.

[lionesss]

Hi, we started at the same time.  Interesting to read your posts as you seem to be at the same stage as me with sides.  I am neutropenic and found out today my HB is 11.2 (baseline 13.5)It actually has dropped from 12.2 last week, and am feeling tired, no stamina, sleeping heaps.  I am not surprised about the drop tho, as I have been watching my RCC slide down since I started and thought 'ouch, that is gonna hurt one day'  Got an exrension on my essay thank god which is ironically enough about pharmacology, ha

Had no riba rage Dyce, but am on antidepressants.  Get the occasional itches, but not too bad, I alternate between dry skin brushing, moisturises and days without moisturisers to allow my skin to 'breathe'.  Also I keep away from soaps with SLS in it, 'cos they made my skin flake off (never had that problem before tx).

Every week is diferent for me.  This weeks theme is fatigue, last weeks was bruising, who knows what next weeks theme will have in store.  lol

Oh, my Dr is very happy with my ALT, as it is skidding along the bottom of the scale. Yay

[lionesss]

p.s: Call me nuts, but I am happy that I won't be having any more blood tests for another month.  The Doc said she would drop my dose if my HB drops below 10. (no rescue drugs here in oz)  So every week I am thankful I am still on the full dose

[dyce]

My alt and ast have also came down!

[lionesss]

Congratulations!