Low hemoglobin.....time for pricrit?

[prettydamscared]

Hi everyone,  I'm really getting concerned about my hubsand's hemoglobin level.  He's feeling tired to the point that he's concerned about being able to function, go up or down a few stairs, walk around, etc.  His NP returned my call on Friday pm as I was driving so I couldn't write anything down.  The only count I remember is hemoglobin and that was 10.5. His last CPC was a month ago and it was 12 then. I thought that was considered very low and that insurance companies even sometimes use 10.0 as a cutoff point for allowing Procrit.  My question is, she feels this is not a problem, as she put it "not even moderately anemic, but mild."  She more uses the rbc count and the hematocrit level as indicators and I can't remember what she said those levels were as I was driving when she returned my call.  This is the same NP who doesn't like to use Procrit.  I do know that it's not just the levels but how fast they drop that are important.  She believes in transfusing when levels get really low.  His last CPC was a month ago and  hemoblogin level was 12 so I don't know how fast it dropped.  She believes in transfusing when levels do get really low. (I already asked you all about this in a previous post and am now of the opionin that Procrit is preferable to transfusing.) Can anyone shed any light on this for me?  I should also add that he is at 12/24 so he only has 12 weeks left and he was undectable at 4 weeks, if that makes any difference.  Thanks in advance for any help you can provide.

Char

[Willy50]

Sorry......I don't have a link for this.  It is a SMALL study but still may help.  As noted if it keeps you away from stopping or reducing dosage it still may be very important.  See # 9 in my above post.
---------------------------------------------------------------------
High-dose vitamins E and C supplementation prevents ribavirin-induced
> hemolytic anemia in patients with chronic hepatitis C.
>
> Kawaguchi Y, Mizuta T, Takahashi K, Iwane S, Ario K, Kawasoe H, Hamaoka
> K, Eguchi Y, Yasutake T, Shigematsu H, Kawazoe S, Fukushima N, Ozaki I,
> Fujimoto K.
>
> Department of Internal Medicine, Saga Medical School, Saga, Japan.
>
> Aim: In combination therapy using interferon (IFN) and ribavirin for
> chronic
> hepatitis C, reduced doses should be used due to ribavirin-induced
> hemolytic
> anemia. The present study aimed to elucidate whether high-dose vitamins E
> and C supplementation attenuated ribavirin-induced hemolytic anemia.
> Methods: Twenty-one consecutive patients with chronic hepatitis C were
> enrolled in this study between July 2003 and December 2004, and received
> high-dose vitamins E (2000 mg) and C (2000 mg) supplementation, daily, in
> addition to IFN alfa-2b and ribavirin combination therapy (vitamins E/C
> group).
> Twenty-one sex- and age-matched patients who received a standard regimen
> of IFN alfa-2b and ribavirin for chronic hepatitis C between January 2001
> and
> June 2003 were evaluated as the control group. Results: Decrease in
> hemoglobin level was significantly prevented in the vitamins E and C group
> compared to that in the control group (P = 0.029). Three (14.3%%) patients
> in the
> control group discontinued treatment because of anemia, while no treated
> patient dropped out of the study due to anemia. Sustained virological
> response was not significantly different between the two groups.
> Conclusion:
> High-dose vitamins E and C supplementation prevented ribavirin-induced
> hemolytic anemia during combination therapy with ribavirin and IFN alfa-2b
> in
> patients with chronic hepatitis C.
----------------------------------------------------------------------------------------------

This may not help with all pateients but since hemolytic anemia is common for people treating I think this is important.......during treatment and possibly even preceeding TX.  (if anticipating anemia)

best,
Willy

[Willy50]

Good advice I've read.  I'll kinda echo what lemieux said.  Also, here are some words from a person I respect that was posted elsewhere;
--------------------------------------------------------------------------

"...an insurance company gives you a denial letter, then you can get it for free from either OrthoBiotech (Procrit)  or Amgen Pharmaceuticals (Aranesp).  They both have "Patient Assistance Programs".

Patients who have  iron deficiency before starting the treatment, are more likely to develop anemia.  Ask your docror to check your IRON especially if he's going to give you Procrit.  Procrit will not work if you don't have enough IRON STORES.

This comes from a side effect booklet written by some of the best Hepatologists in the nation (including Dr McHutchinson, Dr Dieterich, etc).  

http://www.projectsinknowledge.com/Init/G/1628/1628-Handbook.pdf


Chapter IX Anemia says....


2. Caution patient about orthostasis and the need to stand slowly; report dizziness.

3. Instruct patient to report onset of shortness of breath or tachycardia. (meaning palpitations....also report to your doctor any chest pain)

7. Advise patients to maintain nutritional status.

8. Check iron level and correct as appropriate. Replace iron, folate, and B12 when necessary.

Consider Procrit 40,000 IU QW if Hgb falls to <12 g/dL in men or <11 g/dL in
women to maintain maximum benefit of the full dose of ribavirin.

Patients with iron deficiency are more likely to develop anemia during ribavirin therapy. Procrit  is ineffective in the setting of iron deficiency.
Therefore, low iron levels should be corrected prior to starting Procrit.

9. Consider antioxidants (vitamins C 1000 mg/d and E 800 IU/d)



I would also like to add....WHEATGRASS JUICE, which has been proven in studies to help anemia and reduce the need for transfusions on patients that needed them frequently....Of course, check with your doctor before taking anything."
-------------------------------------------
best,
Willy

[PSP-n-Me]

interesting name, are we related LOL

[lemieux1973]

Hi there!  I am wondering if he has had an iron panel done?  Also ask for a ferritin level to be drawn!  That can give you an insight on why he is feelingso lousy other than the low hemoglobin or the jump back and forth.  Ferritin is a protein in our bodies that stores iron.  It can determine if his body is using up any of his stored iron.  Obviously you don't want to be using it, and if he is, have they talk about any bleeds? I have somewhat jumped here at the tail of things but I am interested in helping if I can get you the info you need to take to the NP.  Your husband has the right to ask for specific tests.  Tell them to order and iron panel, a ferritin level, vitamin B12.  The panel will show his actual total iron count.  Have they stated whether they think he is iron deficient?  If you aren't getting the right kind of answers from his NP, it is time to move on and get a second opinion.  Call your MD office medical records department and request a copy of his medical records and the doctor's dictations.  It is normally free and because he IS intitled to it, they can't say no.  Look back at past blood work. Also, when looking at the CBC, hemoglobin and hematocrit play a big role, but also check out the MCV, MCH, RDW-CV.  This can also help determine why.  Now I will feel terrible if you have put somewhere that he has had some illness or surgery, I couldn't find anything of the sort so I am assuming not.  If his Ferritin level is low as well, he will have a long road back to feeling good again.  Also, why the dip?  Is there a bleed?  The issues with the anemia and the way he feels won't get better, even on iron, if there is a bleed somewhere.  That has to be fixed first, then the symptoms can be treated and even iron could help.  Put your foot down, you deserve answers and someone to give you the relief and confidence that your husband is getting the proper care he needs!!  Don't take no for and answer!!  make sure you have that blood drawn, I would be interested in the results!!!

Good Luck,
D  ( a concerned and fellow anemic friend, with a little Medical background)  Hope I can help

[prettydamscared]

Thank you all for your input.  I appreciate so much being able to come here, ask a question and get the benefit of your experience and wisdom.  Based on all of your replies, I'm going to insist on the Procrit.  Even though he's half way through, I feel that if it helps him make it through the last 3 mos., then it's well worth it.  Dyce, thanks so much for your reply too and I'm sorry you feel that a previous poster is talking down to you.  No matter, I really appreciate your help.

Charlotte

[GrandOak]

I felt compelled to point out that using "insurance" and "making sense" in the same post is an oxymoron.    This is directly evident when it comes to how they try to handle AD's as being all the same when anyoone who has been treated knows that like HCV tx, each one affects each person differently.

I liken it much to the "zero tolorance" policies used around the country, which really equates to zero mentality required.

[NYgirl]

I've found that it's not the NUMBER that my hemo is mostly but how FAST it dropped.  The first time I dropped to 9.0 I was physically devastated (it happened in approx. 10 days) and dropped from 15+

This time I am at 9, working and functioning almost as if normal (albeit exhausted and out of breath) but it went down slowly...over several months.

It is quite a completely DIFFERENT thing as your body must acclimate to the lack of oxygen somehow.

If he's had a DRASTIC drop very quickly and you point it out to the doctor it really might help.

And yes Jim is right the "normal" for MEN is 14 - 18 generally.  I knew I was writing to a woman and went on that for some reason.





Most insurance companies don't give a go to the Procrit until under 10, right...but that makes no sense if men START higher...they should be approved then at 12 right?

Women approved for Epogen: 10   normal hemo 12 - 16
Men approved for Epogen:  12  normal hemo 14 - 18

Wouldn't that make MUCH more sense?

I just know I wasn't approved until I was in the 9s heading south...which is absurd anyhow.

[MissMiss]

A blood transfusion should be your personal choice.  I choose not in my case.  Like Jim says, go over the NP's head and talk directly to the doctor.  Procrit works.  It has a financial and personal cost to take it but it does work.  No shame in changing doctors if they don't want to work with you too.  

Your husband's NP is not in his shoes and QOL should count more than her opinion.  Just my thoughts here.

miss

[jmjm530]

NY: but that makes no sense if men START higher...they should be approved then at 12 right?

Women approved for Epogen: 10 normal hemo 12 - 16
Men approved for Epogen: 12 normal hemo 14 - 18
----------------------------------------------------

Actually, men are often approved at 12 and women often approved higher than 10. In many cases, it's how agressive your doctor wants to be with the insurance company. And by "agressive" I really don't mean agressive -- often it's simply a matter of writing a prescription and perhaps a follow-up call/fax from his office with an explanation or perhaps patient records. My Procrit was approved at hgb 11.4 with no problems at all. Others have reported similar.

-- Jim

[dyce]

Thanks jim, I'm a example at a level of 9.5 how this ins. thing puts the boots to some of us folk. I dropped the ball when I thought the hmg level would stay above 10 and didn't pick up the labs last fri.. I would have been on the np right away.

  Ny girl is quick to jump in when I try to help some1 and put in her her 2 cents worth when 1/2 the stuff she says don't make sense. I'm not gonna apologise to her , she been arrogant to the dyce since I started here.

[Mister beagle bailey]

I think your hubby should be on procrit.  I have no idea why some NP don't want to use procrit.  My HGB dropped as low as 6.1 and I was on procrit.  I also had 2 transfusions while on procrit so when a professional says "NO PROCRIT"  it drives me nuts.  If not for the procrit I never would have been able to finish tx on full dose (24/24).  I found I had to be firm with my medical team and went over the NP head to the dr and told him that reducing dose of tx is not an option for me and I wanted the procrit.  The doc just looked at me and said of cause I'll give you procrit, who told you you couldn't have procrit.  My point being go over your NP head right to the dr.  It takes weeks to work so as soon as he gets on it the better.  Please let us know how you make out.

Beagle

[jmjm530]

In all due respect to previous poster, "12" is not a normal hemoblobin level in MEN, only for women. For men, the normal range starts at 13.2. More important than any absolute number is how fast the hemoglobin drop from his pre-tx baseline, age, medical history, and what symptons your husband currently has.

I was in similar shape to your husband at hgb 11.4 and very shortly ended up in the emergency room. I was put on 40,000 units/wk of Procrit. I would not wait until his hgb went any lower, and personally I don't like your nurse's strategy of waiting and then correcting the problem by transfusion. Speak directly to your doctor about Procrit and arm yourself with any pertinent studies (google "HCV Procrit") or consider getting another consultation.

All the best luck.

-- Jim

[bobbyullc]

sorry bout that,

i feel that while hgb is important how he feels is more important. if he still has energy maybe he can forgo procrit for the next 12 weeks. it is expensive and has some very bad side effects. about blood vs procrit, ask bb, he knows.
bobby

[NYgirl]

12 is in fact a "normal" hemo level (normal being 12 - 15) so they certainly DONT prescribe it then.

it's a very expensive medication ($6,000 for a box of ten vials...which at 2x a week is only 5 weeks worth) so they really make us sweat it out. It's not like our hgb will just decide to go up on it's own.

Once he's under 10 they should certainly give it to him.  I'm in the 9s (well maybe higher again now because I am taking Epogen every 3 days) and I've been treating for 46 weeks.

When I was on once a week it slowly slowly slowly went back down again but at 2x a week was too much and it went too high.

It's tough to manage but eventually in treatment your body does deal better with the lack of oxygen and you are able to function anyway.  It's not easy - tired is an understatement but just know he's not alone.

Sometimes you have to fight...it takes bwtn. 2 - 6 weeks for Procrit to work - so it's time to start fighting NOW.

[GrandOak]

It sounds like your husband should be talking with his doc about adding a Procrit regimen.  Many wait until Hgb hits 10 or less, but as it takes anywhere from 2 or more weeks before Procrit actually kicks in, so IMHO the sooner one begins the regimen the better.

I had to wait until it hit 9.8 and it dropped lower, despite doc cutting riba, before I transfered to new doc who immediately added Procrit to my tx. This has resulted in a severe setback for me where it's taken 4 months to regain my original dosage and after 6 months has me possibly looking at 18 more months of tx (basically past 6 months have been considered a mulligan and I'm now entering into a "do over").

Personally, I would not wish a test and/or trial such as this upon anyone, and will ferverantly recommend against it, but sometimes we have to deal with it.  I wish well for your husband, and yourself as you have to deal with the effects of this tx in your relationship as well.