Procruit/Epogen

[wonderingwhen]

This is a multiple question.
I have been prescribed Epogen to start as soon as the rx is filled. Now in going to the Epogen web site it says that it makes red blood cells with the help of IRON. Now I have heard on the forum here that one should not take IRON supplements. Can anyone explain the delicate balance of enough IRON for making red blood cells and too much IRON to damage liver?
Also on a lower post (can't remember who) an acronym was mentioned AIH. Can someone tell me what this is.

Thanks and Happy Thanks Giving to all!

[friole]

So glad you found a program  for the blood growth drugs in Canada.  Now, lose weight in December?  You must be superman - this must be the toughest month in the whole year to lose weight.  I certainly had no problem finding the fat to eat with my Riba on Thanksgiving - ha ha.
friole

[debdeb47]

Procritt has saved my tx:  Hi, I'm 13/24, 2b, 1/1, 48/yo f.  At about 3 wks HGB dropped from 13 to 9.2.  Since then 80,000 Procrit per week, ABLE TO STAY ON FULL TX.  Horrible horrible shot; I can not do it myself.  Oh, Thanks to my most intimate friends!  Am convinced (along w/ fellow Procrit buddy *non hcv/tx*  other-problem patient) that Procrit is the cause of violent GI problems.  My only real sx, loss of much of what food I can eat one way or another.  Still, I'm glad I haven't yet developed an ice cream habit, as I'm losing weight very so very modestly, 10+lb in 13 wks,  tho now cosmetic only.  I'm hoping I may be able to keep some off later.

[friole]

Vegas - Yes, I was glad to find all those numbers.  I think for some =maybe all - the doctors have to apply.  At the cost of these drugs, we need all the assistance we can get.

Wondering -- I cannot say that I have any sides from the Procrit, but who knows -- gosh with the 4 very strong meds duking it out in my body (Neupogen too) sometimes it is difficult to tell. I still feel breathy sometimes in the mornings. It does burn a bit going in - I inject as slowly as I can - but it is not really too bad. I go to the hemotologist for blood monitoring.  They are the nicest group of doctors, lab techs and nurses I have ever encountered. She wrote the Neupogen and Procrit rxs out with about 4 refills but told me I might end up saving money if I only have to do them every other week. She will rx throughout tx, but advice me how often to inject.

NYhepc - watch those blood counts closely.  Are they drawing blood every week?  I could really notice every .5 drop in hgb.  Only recently have I asked to just have CBC's every 2 weeks.  I am so sick of being jabbed.  

Cuteus - you started Procrit in the 10's too?  I am so glad my doc let me too.  I cannot imagine going to the 9's - but if I had not asked, they would not have rx'ed yet.  I think 9's for women and 10's for men is more the standard for starting Procrit.  I really was amazed that I felt better in about 4 days, and wondered if I was imagining it.  Glad to know you thought so too.

Kathy

[friole]

Rocker - here are some sources for assistance for the blood growth drugs that you may need on tx.  If your doctors in the program will not allow you these drugs, you might try to go with a regular doc (aren't you in Canada?).  I would recommend not starting tx until you know you can get these meds if necessary.  I have a good plan with a $30 copay - but the retail for 4 vials of Procrit is $2200, and the retail for 10 vials of Neupogen is $2200.

PROCRIT
"this is a site for assistance for people who can"t afford it.....http://www.procritline.com/ on the right side of this site under patient assistance you can click on it for the form. They also have a number you can call for help... The number is 1-800-553-3851.... Hope this helps some.. " (this was copied from a post from John)

EPOGEN
http://www.epogen.com/patient/reimbursement/reimbursement.jsp
For assistance, call the Reimbursement Connection

[friole]

I didn't let my hgb go as low as some -- I asked for Procrit when it got in the 10's two weeks in a row.  I didn't have another CBC for 2 weeks, and when I did the hgb was 12.1.  However, it felt like it started helping in just a few days.  Without the CBC I cannot prove that, but I did not feel as tired in about 4-5 days.  Maybe it was because I started it when the hgb was is the 10's.  I took my second shot 11 days after the first, and may be able to extend the third one to 14 days.

How are you feeling?  Have you started on Procrit?
Kathy

[vegas777]

thank you for posting the procrit and other assistance numbers...I know someone here that is going to need assistance if they need to use procrit...

very good info, thanks again!

*da dip*

[nyhepc]

do you remember how long it took for the procrit to kick in?  many people say it can be a couple weeks...did you find this true?

[cuteus]

rocker; knowing the purpose of the trials you are considering can help you determine if they are what you need. Many of them are not trying to help you become hcv free. There is a good article that I read about things to consider when inquiring about a trial. And I believe the lates AASLD conference has one also. I have the link at work though.

Friole; is a good thing you mentioned that your hgb might not take as long to bounce back if the Procrit is taken early as opposed to when hgb is below 9. I found the same thing happened to me. I felt better in less than two wks. I got the Rx at 10.2. If drs wait until you are an 8, it might take a lot longer to recover.

[nyhepc]

no procrit yet :((  started copeg 800 only last saturday and mondays HGB was 11, down from 12 a week ago..  not low enough for the insurance comapany, but, since i was pulled off tx the first time for anemia, was hoping they would intervene sooner. i truly do not understand their logic in making us wait until we can't breathe!!!
hope everyone had a wonderful holiday...5 inches of snow here today

[wonderingwhen]

Did you get any sides from the Procruit? Did your Dr. rx for your entire tx or do they cut back or discontinue if your hgb's come back up?

Happy Thanksgiving

[NYgirl]

PS I think what the iron does in the liver is help with the replicating of the virus or something.....I dont think iron itself "hurts" the liver I think that is the problem with us having too much of it in us.

[crushed]

well i'm no pro and not a doctor but i am on 80,000 iu of epogen wk.

i was very concerned about the iron issue especially because i have talalssemia beta minor which is a genetic blood disorder which causes mild anemia and iron abnormalities. it's common practice to monitor bloodwok while on tx and it will at times include iron tests such a total iron, IBC (iron binding capacity) and ferritin. i don't know that the balance is all that fine and don't believe there are sharp changes in the iron stores. from what i've been able to gather the use and processing of iron in the body is a fairly complex subject. thusfar i haven't had any indication of insufficient iron stores so at this point it hasn't been an issue. overall i believe it's just a matter of there being enough iron stores for the epoetin to do it's job. i'm also under the impression that HCV related liver abnormalities influence iron processing in the body so it's not uncommon to see abberations in iron test results in HCV patients.

[cougareyes]

Most of us have enough iron to work with epogen and procrit not to need supplementation. If you are concerned to can talk to your doc about having your iron checked.  Good Luck

[crushed]

you can't say for certain that you'll require epoetin so i wouldn't base the decision to tx on that. discuss it with your Drs but cost aside i don't see why they wouldn't allow epoetin if required to continue tx.

[crushed]

yes from what i've seen it IS expensive, much more than i thought. prices i've seen are in the area of $500 for 40,000 IU dosage. i don't know about the companys that produce procrit/epogen but other manufactures do have programs to provide drugs for some of those that don't have the means to obtain them. i'm not familiar with the studys but if you're gonna be on fair ribavirin dosage there's probably a decent chance it'll knock your HGB down pretty good.

[carpedi]

My doctor told me to take a multiple vitamin with iron when I went on Procrit. Before that I'd been told to take one without iron.

As for the TSH,(thyroid stimulating hormone level,I expect your doctor is checking your thyroid to make sure it's ok.  Tx can do weird things with thyroid.

[GoofyDad]

An iron study would not be a bad idea just to be sure -- if your doc will do it. My iron is way high - they blame it on tx liver  inflamation - but discovered high iron while checking for low iron as part of pre- procrit work-up.

Cuteus posted link from liver conf. indicating procrit can also boost plateletes. Mine are low on procrit - no idea where they would be without (higher-lower-same).

[wonderingwhen]

NYgirl: My current # is 10.1 as low as 9.8 started at 13.8 I guess like everyone else it is fluctuating. I wanted to be proactive and get my rx from Dr. sooner rather than later. I am curently taking Neuprogen and have very low platelets currently 27 down from 32. I think they will be my biggest problem on tx. I am currently on tx week 10.

Jm: When my NP rx the Epogen she also added a TSH test to my blood work, I wonder if that has anything to do with the IRON. I will Google and find out.

[jmjm530]

Yes, Procrit needs iron to do its magic but unless your iron stores are low, supplemental iron can be counter-productive.  If in doubt, check your iron stores (Serum ferritin and transferrin Saturation (TSAT) ) with a simple blood test. Bottom line, run everything you put in your mouth by your treatment doctor or NP.

-- Jim

[crushed]

iron is toxic in higher than normal quantities and the liver is one of the organs most affected by iron toxicity. iron overdose is the leading cause of poisoning in children under 6.

[cuteus]

in most people the body absorbs the iron needed from the foods ingested. I ate red meats and eggs during tx as well as dark greens, Procrit worked just fine without supplements. I did not even take vit b supplements. If your dr did not mention for you to take extra iron, then you should not worry about it.
The new year should find you feeling better from the anemia.
take care

[NYgirl]

While I can't say much about the "iron" issue (but I assume we ALL have iron in our bodies to start with)

What I CAN tell you is TAKE THE EPOGEN!  OH my GOSH if you are anemic it will take a little while but it will give you a new lease on life!

I dropped from almost 15 to 9 in a bit over a week and honestly thought I was going to die and at least not be able to continue tx.  I NEVER remember feeling that totally dead before in my life. Coming to work was quite literally like hell to me.

The Epogen (once a week 40,000) stopped my hgb from dropping any more but nothing else. Then he upped it to 40,000 twice a week and BINGO!  I almost feel NORMAL.  I mean REALLY.

Either that or I was so so bad before that I've forgotten what normal is and think this is it! Whatever...it is a MIRACLE DRUG and you are going to be over the moon when you see how it works.

I can't tell you what a fan of Epogen/Procrit I am!!!!!!!!!

Debby

PS What is your current number and what did it come down from? Do you have any other problems?