hgb 4.8 procrit and iron

some of you may remember last week I posted regarding me stopping the
interferon-rebatol and having hgb 4.8 after 3 weeks since I stopped them

I started talinkg procrit (40.000 once a weeek ) and ferrous sulfate (343mg twice a day)

Isn't iron supplements bad since I have cirrhosis?

Thanks

[Mister beagle bailey]

I start tx Fri. and already have Thalassemia 9anemia)  and my Dr. plans to put me on procrit.  I am not allowed to take iron for the rest of my life because of this type of anemia.  How ever my Dr. is putting me on procrit, so I guest procrit is not the same as iron.  If any one out there know's please let us know.

Thanks,

Bob

[jmjm530]

Procrit needs adequate iron stores to work. It's quite possible your iron stores were low and that's why your doctors put you on supplemental iron. Frankly, I'm a bit surprised they didn't go the transfusion route, but at this critical point you really have to listen carefully to what your doctors say. If for any reason you don't have confidence in your medical team, then a second opinion would be indicated right away. All the best moving forward. I can't even imagine what it's like to function at Hgb 4.8. You are a better person than I.

-- Jim

[NYgirl]

I honestly can't understand what is going on with your doctor - at NINE I needed Epogen twice a week just to begin raising the levels.

why you haven't had a transfusion is so far beyond my imagination it's freaking me out!

How are you even able to type? I don't even know how you are able to sit up let alone get to a computer!!!

I really think you need something way more aggressive than this. I know at nine once a week epogen just kept me from not dropping.

Now that I am up to 14.5 I have dropped back to once a week to maintain my level.

I hope that you consider talking to another doctor...this is really making no sense to me and I worry much about you!

Debby

[mauka]

basically it's been a big all mess because of Katrina and I live in New Orleans.
I must have changed ten doctors.
I was begged to do transfusions but I diddn't want to at all.

I started procrit and iron supplements yesterday and I already feel better and getting some color..I was pretty *white* as you can imagine.

I think I'll be allright :)
Thanks for your concerns.

[NYgirl]

You are one tough person let me tell you that!

Make SURE that they keep on top of your weekly CBC at least, although I would sure be in there more often than that if I could.  I would think you would need at least twice a week to get you up to where you need to be!

I remember you didn't want any transfusions. I hope to God this works but it will take some time - I guess that it works with your bone marrow or something to help it grow more red cells.

Make sure for the next few weeks even if you feel better that you are CAREFUL...at your level getting up to a 7 might make you think you are better!

BEST of luck!
Debby

[mauka]

I took a CBC yesterday and I will take another one
on January 3rd.

Thank You    :)

Happy New Year!

[jmjm530]

If you doctors are telling you to do a transfusion, please consider it again ! If you dobut your doctors, then get another opinion. This is much too serious a matter for self-diagnosis.

I understand you don't want to go off treatment, but it's much better to temporarily go off treatment for a transfusion, then to risk going off treatment long-term because of a complete body breakdown.

MANY people have had transfusions on treatment. I'm not saying it's no big deal but my understanding is it's a fairly routine procedure in hospitals. Look, if you were in a car accident or had an operation and the doctors told you that you needed a transfusion, would you refuse? It's really the same thing. Try and be smart about this.

-- Jim

[NYgirl]

I completely agree with Jim.

I had four transfusions last year.  While it wasn't "fun" it really WAS no big deal.

I have to tell you again at NINE I would have seriously considered it - at FOUR I can't imagine why they are not insisting on it.  
I just can't see how once a week Procrit is going to help in your situation at all.  

Sort of like putting a bandaid on a severed artery.  It's just too little too late I really think.

Can I ask why you are so afraid to have a simple transfusion?  Is it a religious reason or something like that?

(Sorry to be nosey if you don't want to answer please dont)

[mauka]

I'm not afraid... I think I can handle it withou it thats all.

I'm getting more color and I feel a lot better believe it or not after one shot, iron
supplements and veru healthy diet.

I'm working at the computer right now.

[jmjm530]

If I remember your previous posts correctly, I think the reason you gave for not having a tranfusion had to do with stopping treatment.

To me, this is taking the treatment credo to the very extreme. You don't want to treat at all costs -- you want to treat at what you and your doctor consider a REASONABLE cost.

If your doctors tell you to have a transfusion, either have a transfusion of find a respected hepatologist who has another plan. Sorry to harp on this but your approach to me seems reckless. Maybe others can chime in with something more persuasive.

-- Jim

[mauka]

I stopped treatment about 4 weeks ago, transfusion has got
nothing to do with it.

Man I gotta go back to work :)

Thanks jimjim

[NYgirl]

Procrit takes a few WEEKS to work.  W

hile I am sure psychologically you feel better...be careful because there is NO WAY in the world that your hgb could be up that much in one day!!!!!!!!!

Be careful on stairs and near the stove and oven and don't drive and things like that.  You could pass out anywhere at anytime!

You are so dangerously dangerously LOW that it's inconceivable.  

do you have anybody at home who is monitoring you at all?  Aside from being "tired" what are the symptoms of being THAT low?  I've just never heard of such a thing in my life and can't imagine living like that.

PLEASE PLEASE BE CAREFUL YOUR HGB CANNOT HAVE GONE UP THAT MUCH IN ONE DAY - BE CAREFUL!!!!!!

(MY God I'm a wreck)

[jmjm530]

Well, that's a partial relief that you're no longer taking ribavirin with 4.8 hgb. We're just all concerned about you, that's all. NY Girl has some very good points about regular monitoring and having someone around in the event you faint or something. When my hgb was low (normally low LOL) I had two CBC's a week.

-- Jim

[mauka]

I will definetely post and update, I'll know on the 4th.

It is great that people cares!

Best!

[NYgirl]

Just remember that we care.  All of this is so rough on everybody - it's nice knowing that there are people who can RELATE (even though none of us surely have been that low on our hgb).

I am so glad your wife is there that takes a lot off worrying.

I will be interested to see what your results are on the 3rd so please make sure you post. Try and talk the doc in to 2x a week CBC if you can.  If it's not gone up you had better INSIST that you get more procrit ASAP.

Once this is figured out you will be like WOW this is what I used to feel like before?  You completely forget how wonderful it does feel to have blood back in your blood!

[mauka]

my wife is here....I used to be out of breath just doing a few steps up my house
and I feel my heartbeat in my head...I do feel better, I went to the store
to buy spinach and coke today...I'm telling you I can handle it :)

I'm not so much out of breath at all right now....you would not believe what I've been eating in the past week...healthiest diet you can imagine :)

Thank you so much !

[friole]

Now I get it - you're a tough guy.  Sure wish you had received that transfusion but I hope the procrit is enough and fast enough to bring the oxygen back into your blood. I think when we are anemic, we get so used to it we can't remember what life should be like.  Hang in there
frijole

[jmjm530]

Sorry you're not feeling well. I also ended up in the ER with anemia early on in treatment.

The hospital folks are correct that your hgb is not low enough for a transfusion. I think that number is around 8 or 7, not sure.

In any event, you definitely should talk to your medical team about Procrit. It takes 2-4 weeks to kick in so the sooner you start the better.

In light of your ER visit, I'd call back your NP if you don't hear back in the next couple of hours with a note of urgency. With the holiday season upon us, med tx often suffers.

Let us know how things work out. Hopefully, they'll let you stay on your full dose of riba and the way you felt was partially due to your period -- something of which I know absolutely nothing about. :)

-- Jim

[Wasabi Pea]

The iron pills sound right if your iron stores are low.  I was taking procrit and wasn't clear that iron pills were required of me, and my hgb actually dropped.  So I'm on 40,000 units twice a week of procrit, and I take two iron pills a day.  N.P. says the procrit needs the iron to make the RBCs.  Sounds good to me.

[cuteus]

that was one of the symptoms I dealt with during tx, but I did not land in the Hosp, TG.  I also bled more than usual from the regular blood drawing, and finally I had a strange chest pain. My Hgb was 10.2 at that time, I finally got the Procrit and only needed 40,000 every 8-9 days to keep the hgb at an acceptable level. after that, no more bleeding, or high blood pressure, ringing in the ears, etc.
I hope the dr calls you back soon.

[MrsOckert]

I also have the ringing/pounding in the ears.  I just thought that was related to the TX SX's.  didn't consider it as part of the anemia.  

Glad to know it could clear up.  I haven't heard back from the dr yet.  It will probably be late this aft.

[GoofyDad]

My hgb is quite low. My experience is that at each incremental drop, I have a few bad days, then I adjust. That's not to say I feel great, but the headaches go away and I stop the heavy breathing in bed (for all thr wrong reasons, I assure you). If you're like me, I think you'll feel improvement shortly. Hang in there. I also try to walk frequently. Not fast, just one step up from a hospital shuffle.

Good luck.

[NYgirl]

The ringing in your ears that's the anemia. boy oh BOY that drove me CRAZY!

I was LUCKY in a sense - when my hgb went south I stopped having my period completely. boy was that strange! But it was lucky that my body shut down because my hgb stopped dropping at 9 when I took the Epogen it held it there and then when I started doing it twice a week it started going up.  Now it's at almost 15 and holding steady.  

Ringing, trouble breathing, passing out, lethargy all anemia and all suck big time.

At 10 they usually put you on the Epogen or Procrit - you aren't low enough for a transfusion which is good.  The Procrit will take a bit of TIME but you will make it through and then be like oh thank GOD I didn't drop meds or quit or anything drastic because it's OVER and I'm doing FINE.

Hang in there. Right now I know it's hard but it's DOABLE just take it easy.

Debby

[MrsOckert]

BTW, I love the name.

Thanks for the info.  I don't want to decrease the dosage of riba.  But I also don't think I can afford to go on Procrit.  It would be cheaper to quit my job and go on complete bedrest.  but I don't want to do that either.  

I'm glad to hear you adjusted.  I'm sure it's not easy, but again there's that word....doable.  I hate that word.  LOL  Valorie

[cuteus]

If Procrit can help keep a decent quality of life and your job, I would not try to do without it, you don't know how low you will drop and how fast.  If you are on Procrit and it's not working as good as expected that is one thing, but to not even try and see how much better life can be, is depriving yourself of the chance.  Your insurance won't cover it at all?

[MrsOckert]

My ins co doesn't cover "injectables" and I've also maxed out my benefit plan for 2005.  

If Procrit is considered an injectable then no they won't cover it.  If they do cover it or I can get a medical necessity they will cover 50% of it and I have to pay the other 50%.  As I understand it Procrit is about $5000 per month.  Is that correct????  

If it is correct it would cost me $2500 per month.  My take home each month is $1200.

Once I hear from the dr then I'll contact the ins co and find out exactly what they will or won't do.

May I ask you (& anyone else) how much are you paying? As in your ins co-pay and the charges from the pharmacy you use?

[GoofyDad]

To be clar, I am on Procrit - it just ain't doing much. My Ins Co picks up the tab - I have small co-pay. For that I'm grateful.

Also, I wouldn't think it's strictly a quality of life issue - like either take procrit, or just stay home instead. There's more to it, including possibily requiring a dose reduction.

I think I Googled around for someone who had trouble paying for procrit once. I think the drug co has a program - and also there are some charity orgs that help. I think they may be more greared towards oncology patients - but I dunno.

Google around a bit. If you don't find something let me know & I'll have a look.

Ah! <a href="http://www.procrit.com/oncology/assistance/financial.jsp">Here's a start.</a>

BTW, Procrit can take a while to work, so I'd start getting approvals ASAP if you can. Good luck.

[friole]

Neupogen and Procrit sources
Amgen, Inc.
Contact: Amgen Safety Net Programs
Medical Technology Hotlines:
1-800-272-9376 (202-637-6698 in Washington, D.C.)
Drugs Available:

Epogen
Neupogen
Amgen's program consists of a universal patient program and a variable cap program for uninsured patients. Enrollment in the program is based on a patient's insurance and financial status.
------------------------------------------------------------
http://www.neutropenia.ca/

I pay $30 copays for my Neupogen and Procrit, but I asked the pharmacy the retail.  The Procrit is 4 vials and retails for $2200 and the Neupogen is 10 vials and retails for about the same - $2100 or so.
Please ask your doctor to check with Amgen on the assistance program.
frijole

[MrsOckert]

I've got an experience to relate and would appreciate your feedback.

I'm geno 1b, 11/48, beg vl 1,220,000 - etc, etc.  At my 8 week labs my HGB was 13.5 and HCT was 39.  At week 4 my HBG was 12.8 so it had risen slightly.  Still in normal levels.  

On Tues (two days ago) I started my period.  Excessive bleeding.  To make a long story short I ended up in the emergency room at 11:00 pm.  My HGB was 10 and my HCT was 31.  The attending said giving my a shot of Provera wouldn't work and that while I was low I wasn't low enough for a blood transfusion so they were sending me home and told me to follow up with my liver dr.

I'm waiting for his nurse to call me back.  The bleeding did slow down Wed morning and I'm okay in that respect.  Just dealing with the HGB at 10.  What number is the HBG that they want you to get a blood transfusion?


Thanks, Valorie

[cuteus]

I too was very blessed to have great insurance. My meds were a 10. copay for 3 months supply and my company pays all the premiums, so all I have is copays. I thank the great positive spirit that I was diagnosed when I was, I was fortunate in that the insurance did not hesitate on the Procrit or the tx extension either.  

If anyone here needs the darn thing, Please, I have 4 vials of Procrit (STILL) in my fridge, I don't want them to expire and I don't see my dr until next March. I keep forgetting to take it with me to the appointments.
Is anyone in the NY area with insurance problems and needs this?

[mauka]

now that I think about it I'll find out if  my insurance will cover it
for sure since I picked up the procrit in a rush.

I get worried now about the post above about insurance not covering injectables (!)
I'll have to see my doc on the 4th and fill out the papers.

I would greatly appreciate it if I can get old of the 4 vials :)))
Is it 40.000 dose?

Cuteus my email is ***@**** could send me your email just in case?

Thanks!

[mauka]

Thanks, I will know tomorrow if my insurance
wil pay for Procrit, I may not need yours I'm not sure.

I'll be glad to pay overnight shipping if I have to :)

Thanks so much!

[cuteus]

i just got back to reading the forum. I got the addy. I will try emailing tonite. It is the 40,000 dose. I checked the exp date and it is in 2007. But since it needs refrigeration, is a little tricky to forward it by mail. I will contact you soon.