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Anybody Ever Refused a Transfusion?
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Anybody Ever Refused a Transfusion?

After my Friday appt, Doc left message on my cell to call Doc on call this weekend. They want to transfuse me because of low hemaglobin & hematacrit. No way I am gonna do it. My hemoglobin has been 8 - 9 since I started 25 weeks ago and they have always told me it is ok. Never have been offered anything to raise it. I think it is down even more because I had a streessful week at work and didn't eat properly and played 3 league competitive tennis matches this week. Played hard and felt ok just a little tired.  Anyway to get this blood back up? They did not say on the message what the numbers were. I am only stage 1. What about taking vitamin with iron? Tonight is my shot night. Is it the shot or the riba driving it down?
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43 Comments Post a Comment
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408795_tn?1324939275
I don't think you're supposed to take a vitamin with iron, but that would be up to you and your doctor.  As far as the transfusion, why haven't they offered you Procrit to elavate your hemoglobin?  Maybe it has gone below 8 and after 25 weeks they decided you have gotten too low now and that's why they're talking about a transfusion.  Ask for the procrit and just tell them that you don't want a transfusion.  good luck
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29837_tn?1314410659
I think it's important to note, and for everyone to know, that a blood transfusion from any donor is not 100% safe and free of HIV and HCV viruses. I got my Hep C through a blood transfusion during one of my hip replacements. I reconfirmed the 100% not safe statement two days ago when I gave blood for my RNA test with the lab tech. She did agree that even though we have the technology to put a man on the moon in 2009, we don’t have the technology to assure that blood from a donor is 100% safe and free from viruses.

If you are planning to have any surgical procedure, it's best to be a analogous donor (donating your own blood for yourself). In your case, I don't think that applies. Not to scare you or anyone, but accepting blood from a donor is not 100% safe. Ask your doctor... By the way, for my last hip replacement two years ago, I gave my own blood for myself. The risk for getting blood tainted with Hep C was not my concern, but the possibility of getting blood tainted with the HIV virus was...

Magnum
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Avatar_f_tn
I have to agree with the last two posts.  In your place I would ask for procrit.  I fought transfusion during tx because I will NEVER completely trust the blood supply.  Procrit can take a while to work, so the sooner they start you on it the better.  Best of luck.

jd
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Avatar_f_tn
Thanks, I will ask about Procrit. I do not trust the blood supply either because I had 2 pints in 1979 and a dear friend received blood from a donor and 6 months later the donor gave blood again and tested positive for HIV that time.
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Avatar_f_tn
http://www.drugs.com/procrit.html

excerpt:

"Procrit is made from human plasma (part of the blood) and may contain viruses and other infectious agents that can cause disease. Although donated human plasma is screened, tested, and treated to reduce the risk of it containing anything that could cause disease, there is still a small possibility it could transmit disease. Talk with your doctor about the risks and benefits of using this medication."






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Avatar_m_tn
Its the riba, if your down to 8 your looking at either a TF or a dose reduction. Procrit takes a few weeks to kick in, not sure where you are in tx but if early on i would hate it but i would go with the TF and then start on procrit. Being at that level i wouldn't think would be good on the heart........ Best to you.

PS Are you in the boceprevir trial??? If so your getting a double whammy with the two
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Avatar_m_tn
WTF...learn something new everyday:Procrit is made from human plasma (part of the blood) and may contain viruses and other infectious agents that can cause disease.


looks like we cant win sometimes...this is all i want to hear
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Avatar_m_tn
So i guess procit is like a transfusion in a pill?
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Avatar_f_tn
Yeah, do you believe this garbage? I know this was never mentioned on forum, because I would have really tried to avoid taking Procrit - don't know how tho.

I mean, lets face it, they can only check the blood for "what they test for," and that I doubt has been "updated." And it should be updated being we have people from all over the world that now live here.

Our "POST TX SX" might NOT really be post tx sx, but instead a NEW disease from Procrit. ;o)  God forbid, but I mean really, according to that info, who knows...

Have a good night,
MO, carrier of Sudaellimieletazombie Virus (from procrit)
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220090_tn?1379170787
BRAND NAME: Epogen, Procrit

DRUG CLASS AND MECHANISM: Epoetin alfa is a man-made, injectable drug for treating anemia. Erythropoietin is a protein that normally is made in the body by the kidney. It causes the bone marrow to produce oxygen-carrying red blood cells. Under normal conditions, when the body senses a decrease in red blood cells or a deficiency in the supply of oxygen, more erythropoietin is produced, and this increases the number of red blood cells. When this natural mechanism is not working, it may become necessary to stimulate the bone marrow to produce red blood cells. The erythropoietin that is used for therapy, called epoetin alfa, is man-made. It is a product of the genetic engineering of ovarian cells of the Chinese hamster and is produced through recombinant DNA technology in bacteria. It does not cure the underlying cause of the anemia, and unless the underlying cause can be reversed, treatment with epoetin alfa must be continued indefinitely. Epoetin alfa belongs to a class of drugs called colony-stimulating factors because of their ability to stimulate cells in the bone marrow to multiply and form colonies of identical cells. Other colony-stimulating factors include filigrastim (Neupogen) and sargramostim (Leukine). Epogen and Procrit are both epoetin alfa, but they are marketed by two different pharmaceutical companies.
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220090_tn?1379170787
Erythropoietin is a glycoprotein which stimulates red blood cell production. It is produced in the kidney and stimulates the division and differentiation of committed erythroid progenitors in the bone marrow. PROCRIT (Epoetin alfa), a 165 amino acid glycoprotein manufactured by recombinant DNA technology, has the same biological effects as endogenous erythropoietin. 1 It has a molecular weight of 30,400 daltons and is produced by mammalian cells into which the human erythropoietin gene has been introduced. The product contains the identical amino acid sequence of isolated natural erythropoietin.

PROCRIT is formulated as a sterile, colorless, liquid in an isotonic sodium chloride/ sodium citrate or a sodium chloride/ sodium phosphate buffered solution for intravenous (IV) or subcutaneous (SC) administration
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220090_tn?1379170787
I did a Google search on Procrit and could find no mention that it was made from blood products.  I did find multiple mentions that it is man made.


Can you provide links to the papers that say it is made from blood products?
thanks,
Eric
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Avatar_f_tn
What if I do nothing? Keep taking my meds and just rest and eat better. Won't that improve my reds?? Anybody else out there that just toughed it out?
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Avatar_f_tn
Hi Eric,
I found mention of it being man made too, but also mentioned this human plasma stuff too. Not in all the articles, or if it is, maybe the wording is not as easy to catch.

http://www.drugs.com/mtm/procrit.html
Epoetin alfa is made from human plasma (part of the blood) and may contain viruses and other infectious agents that can cause disease. Although donated human plasma is screened, tested, and treated to reduce the risk of it containing anything that could cause disease, there is still a small possibility it could transmit disease. Talk with your doctor about the risks and benefits of using this medication.

http://www.healthline.com/multumcontent/epoetin-alfa

Epoetin alfa is made from human plasma (part of the blood) and may contain viruses and other infectious agents that can cause disease. Although donated human plasma is screened, tested, and treated to reduce the risk of it containing anything that could cause disease, there is still a small possibility it could transmit disease. Talk with your doctor about the risks and benefits of using this medication
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Avatar_f_tn
I noticed in what you pasted there is wording that might mean the same as using human blood plasma? Just guessing about that, but maybe you would know.

From your post "It has a molecular weight of 30,400 daltons and is produced by mammalian cells into which the HUMAN erythropoietin gene has been introduced."

So are they talking about getting something from human blood plasma there? I don't understand the lingo, but it seems like they might be talking about blood plasma but worded differently??

It really does get me a little mad to say the least, that if this stuff is made from blood plasma, none of us were ever told. Maybe I would have lowered my riba after being UND and just treated longer as to avoid procrit.

But anyhow if you get a minute, let me know if you think that line that I pasted out of your post means that it does have human plasma in it. I mean, I do believe it does have human plasma after what I had posted from those sites,,,,,I am just wondering if your post says it also, but just worded differently.  
Thanks,
MO
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Avatar_f_tn
What if I do nothing? Keep taking my meds and just rest and eat better. Won't that improve my reds?? Anybody else out there that just toughed it out?
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I went down to 9.6 or little lower my first tx and didn't take procrit, but I was stopping at 24 weeks....

Here's the thing,,,,,IF your hemo goes to low, you risk having a heart attack. Also if your hemo goes too high from Procrit, you risk having a stroke and/or other problems. 12 is considered the non-safe zone according to procrit instructions. I'm in the lucky "12" zone, so I stopped the procrit temporarily and I am wondering if my body is even absorbing enough of the riba being the procrit "works so well." Or is all the riba going in the toilet - riba pee pee.

Good luck with your treatment,
MO


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220090_tn?1379170787
Good to see you posting again!

I am not sure what it means.  I doubt in contains plasma, but it probably is made from it.  I have no idea whether it could transmit virus particles from the plasma.

I am certain that the bio pharma companies would obscure that to the extent they could.

take care,
Eric
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Avatar_m_tn
What are the ingredients in Epogen?

Active Ingredient: epoetin alfa

Inactive Ingredients: All formulations include albumin (human), sodium citrate, sodium chloride, and citric acid in water for injection.  Multi-use vials contain benzyl alcohol. Certain formulations also contain sodium phosphate monobasic monohydrate and sodium phosphate dibasic anhydrate.

Albumin (Human)

EPOGEN® contains albumin, a derivative of human blood. Based on effective donor screening and product manufacturing processes, it carries an extremely remote risk for transmission of viral diseases. A theoretical risk for transmission of Creutzfeldt-Jakob disease (CJD) also is considered extremely remote. No cases of transmission of viral diseases or CJD have ever been identified for albumin.

Revised: 08/2008

I seriously doubt that HCV patients using Epogen or Procrit for hemolytic anemia need to worry about the risk of infection from these drugs. There may be risks but infection isn't one of them

Mike
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206807_tn?1331939784
I was told on one of my first visits, they really do not know what kind of effects, receiving blood or blood products may have on a person’s health, later in life.
It was not the HCV or HIV they are concerned about. It is all the unanswered questions or “Unchartered Waters” about the possible consciences of receiving another person’s blood. I was told if it got to the point of a transfusion or stopping tx., they would advise stopping tx.
It made since to me because if they have just recently discovered HCV, what else is it they do not know? (Just calling it non A/non B is not a discovery. To me that means they are saying “it is not HAV or HBV but is some thing, we are just not sure what it is.”)
I do not have major liver damage, so I probably would chose to have stopped tx. Fortunately, it never came to that.
If it came between Life or Death, of course I would have a transfusion.
I hate to come across like “The Prophet of Doom” but, it is something to think about.
R. Glass
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Avatar_f_tn
Good to see you posting again!
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Thanks, but I'm not always in the mood to post that much anymore, but when I read and its not everyone at each others throat, I don't mind jumping in, otherwise I read a few threads and move on. Someone told me of another site that I might check out.

But anyhow, the procrit info, I am definitely going to ask my doc about.

Good talking to ya,
MO
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Avatar_f_tn
ms.."There may be risks but infection isn't one of them"
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Then why does your post then say "Based on effective donor screening and product manufacturing processes, it carries an extremely remote risk for transmission of viral diseases."
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My post -"Epoetin alfa is made from human plasma (part of the blood) and may contain VIRUSES and other INFECTIOUS AGENTS that CAN cause disease. Although donated human plasma is screened, tested, and treated to reduce the risk of it containing anything that could cause disease, there is still a small possibility it could transmit disease. Talk with your doctor about the risks and benefits of using this medication."

So the question is what are they screening it for - what diseases? AND to tell you the truth I don't know what happens in that "window" where there aren't antibodies - even when people donate blood to blood banks and they don't have antibodies YET after exposure,,,,,,,shouldn't they be doing Viral Load tests at blood banks because I would imagine that that would show up - but just a tired guess. I feel that infectious disease info should have been told to all of us. Its kinda crazy that the company expects the patient to read the instructions and then discuss it with our doctors - AFTER its already been prescribed and in our refrigerator.

I think the doctors should have explained the "remote" possibilites before prescribing it.

So thats the story,
MO

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179856_tn?1333550962
Procrit for hemolytic anemia need to worry about the risk of infection from these drugs. There

Procrit just rocks..........it is one of the best most wonderful drugs ever created.  When you really need it, you take it and improve.  End of story. Much safer than any transfusions because even though they say blood is thoroughly screened these days as my doctor said there is ALWAYS room for human error.

Procrit saved my life, without it I would not have completed 72 weeks - no way possible I would have dropped out at week THREE.
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Avatar_f_tn
"Maybe I would have lowered my riba after being UND and just treated longer as to avoid procrit"
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I could never have made it without procrit either.  So much safer than transfusion!  Since I would not go the transfusion route the choices were procrit or reduce the dose of riba.  I think reducing the riba dose would have significantly lowered my chance of becoming SVR.  

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Avatar_f_tn
Well, as it stands now my hemaglobin went down further to 7.9. I just got back from having iron studies done. Doc says if iron is low, Procrit won't work.  If I have enough iron in my blood I will start Procrit I guess. If not, I have to decide between transfusion or stopping trx. I really feel pretty good compared to the thyroid problem last month when TSH reached 117. I am working 25 - 30 hours a week but decided not to exercise until back up to at least a 9. The rest of my time seems to be spent dealing with medical issues. Whew and it is only week 25!  Every month, it is something else. 72 weeks starting to seem like a really long time. Not because of how I feel but how much worry and time spent dealing with all of it. It is really starting to wear on me. But I just can't quit, too much invested now. Surely, things will start going right soon.  By the way, I am really anxious about another shot. I heard Procrit really hurts. Any other sides I should know about?
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9648_tn?1290094807
I've had three procrit shots and none of them hurt. It's been a bit of a challenge to play nurse and get all the stuff out of the bottle into the syringe (I use a redi-pen for the peg so I had no idea . . .).
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Avatar_f_tn
Procrit can sting a bit.  Warm the syringe in your hand before injecting, it helps. Don't worry too much, its just another shot and you will get used to it soon.  I took procrit for 40 weeks of my 4.  I injected at the same time I did my peginteron shot.  Make sure your nurse shows you how to draw out the solution.   I think you are wise to postpone exercise while your hgb is so low.

Good luck.

jd
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Avatar_f_tn
I have had two transfusions  in the last year,    I am already on 60 procrit.

Here is the problem as I see it with transfusions,   they have a lot of iron in them, they are no fun to get and take a long time.

Eventually with some of us though   the procrit stops working.    I had to cut down my riba to continue tx.

My last big drop I refused blood transfusion,   stuck with procrit,    and I leveled out again.

Procrit is a good drug for tx, so is neuopogen,  though that gives awful leg cramos,  procrit for me a slight headache, But I can deal with that!

Jds warming in hands works well with  pwg also.

I totally  agree getting the stuff into the syringe is hard!

Good luck all
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Avatar_f_tn
that should read "I took procrit for 40 weeks of my 48."
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179856_tn?1333550962
I took procrit for 69 of my 72 weeks.......while it does sting it is the drug that enabled me to continue on and get to SVR...definitely worth the sting.

I have never heard of one person in all the years that I have been on this forum having any bad reaction to this drug before - never ever.  It has helped so many of us you have no idea.

I am VERY glad that you will be looking to get onto it.  If the iron isn't high enough now at 7.9 you will need that transfusion no matter what, it IS dangerous to be that low for that long.  I'd advise taking it then getting on the procrit right away....piggyback it if you need to or something just to get it into you and going.

You will be SO grateful that you did - just like the TSH issue once resolved you will be like well one down how many more to go? But you will do it...just take it one step at a time.

Believe me the sting of procrit is nothing like the pain of anemia.........no way.
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179856_tn?1333550962
PS Don't worry about 'catching' anything...........nobody does, seriously to say that anyone has is ludicrous and the source must be considered.  PLEASE do not be discouraged from taking this med, it can help you GREATLY.


"No cases of transmission of viral diseases or CJD have ever been identified for albumin."
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Avatar_f_tn
I have taken it for   my 72 weeks, and  I am going to 30 May, I still take it, I do know about iron and procrit, I have been dealing with it for quite a while,    you may have not heard of it, but thank goodness the Docs have.  
Jim gave me some very good advice for this as did mike simon.    But my Hepatologist at UCLA and med nurse   also did.

There is no denying its a great drug,  
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Avatar_f_tn
this also the third time I have treated, all 3 times with procrit
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Avatar_f_tn
Thank you for sharing your Procrit experiences. I already feel less anxious about taking it. Almost look forward to it -- ALMOST!  
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186344_tn?1278268245
I would be very interested in an update about how it went with your thyroid situation of a month ago.
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547836_tn?1302836432
um.  i would if i had to get one bc that's how i got hcv in the first place, there was no screening before 1993 and i had a transfusion before i was 1 yo.  around 1990-1991.  what a huge difference a couple of years can make.  who know what other viruses and blood-borne diseases there still are that have no screens for
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547836_tn?1302836432
or at least if you're gonna get one, get it from a family close relative who you can trust.
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Avatar_f_tn
Zazza,
My TSH went from 117 to 3.2 in 30 days with 75 synthroid! I am worried now I will go HYPERTHYROID before March 13th appt. I have wondered if the synthroid caused the anemia thing. But I took 20,000 Procrit yesterday morning. I get another CBC on Monday. I am hoping for quick response like I had with synthroid.

Nygirl7,
You keep me going. Sounds like I am on a similar trail thru tx as you blazed before me.

All,
All your posts help those of us that are going thru trying times. Wish I could get confident enough to help someone else. All I can do is share what is going on with me so somebody else going thru it won't feel alone.

THANKS!
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186344_tn?1278268245
Good to hear you got your thyroid under control with the syntrhoid. You really have had quite a lot to deal with during tx already. Hope it gets easier from now on, Za
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Avatar_f_tn
Thanks, I am keeping my hopes up for a smooth ride from here on out. Shot 26 of 72 this week! Only 10 away from half way. I know I can do this. I am feeling good today!
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Avatar_n_tn
Here's my thoughts based on several rounds of treatment:

1. The Riba causes the anemia

2. My hgb stayed between 8.0 - 8.5

3. At about week 39, it bottomed out at 7.3, I couldn't function.

4. I did not have a transfusion, instead, my meads were reduced and I was put on a strict "rest-only, house arrest" regime.

5. Your hgb delivers oxygen to all organs & muscles, so a low hgb can really make you feel like **** (pardon my French!), so minimal activity & lots of rest were my instructions.  I did not want to stop treatment, so I just took to my bed, and rode it out.  

6. With a med reduction, my counts came back up a wee bit, but I was still told to basically do nothing, the big concern with the doctors is with a hgb so low, the risk of a heart attack increases.

7. I made it thru, my treatment is over, and I'm starting to feel like my old self.  You ever know how bad you felt till you start feeling better again!

Hang in there, try & get Procrit if you can, and ask you doc about getting B-12  shots, they help a bit.
As far as the Procrit shot hurting, the needle is very small, but sometimes it can sting, just for a second, really, it's a piece of cake.

All the best to you!
W.C. Missy
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Avatar_f_tn
On toughing it out:

That's what I did because I was on the Telaprevir trial that didn't allow Procrit.  The first thing to know is that there's a lot of error in the HGB test.  Probably .3 to .5 either way.  So the first step is just to redo the test.  Then, if it's low enough to be a serious problem, cutting the Riba dose a little can help a lot pretty quickly.  

As I understand it, both Riba and interferon are a problem for red blood cell production.   Ribavirin destroys red blood cells and interferon restricts the production of new ones.  It's a bad interaction.  If you're low on iron, that's a separate problem.  Earlier posters are right that in general liver-impaired folks shouldn't be taking iron supplements, but there's some wiggle room in there.  If your stage is low, it may be OK to take some iron supplements or increase the iron in your diet.  They can test for the iron level in your blood and advise on whether supplements will help or not.

If you're willing to gamble on the risk of heart attack due to low HGB (as a pre-menopausal female, I was), then I recommend two things:

1) Get the HGB blood test right around when you take your interferon shot.  HGB levels fluctuate a little during the week and are probably highest just before or just after taking the shot.  (It takes a day or so for the interferon to get into your system and limit the red blood cell production again.)

2) If you're willing for your HGB to be lower than your doc is, go in for the blood tests a bit dehydrated.  The test doesn't measure HGB directly.  It's a calculated number which assumes normal hydration levels.  The more dehydrated you are, the higher your calculated HGB number.  This doesn't move it around much, but if you're right on the edge, it might be worth playing the game.  Of course your *real* HGB level isn't changed by this, so your heart attack risk is going up regardless of the number they calculate.

3) Maybe rest a lot more.  I mostly gave up on exercising when I had low HGB.  It felt somewhat OK when I was doing things, but I would then be really wiped out the next day.

4) Be glad you're not a menstruating female in the midst of this!  My HGB plummeted when I got my period in week 8 of treatment.  I spent the next four weeks playing games with blood tests until I finished my 12 weeks on Telaprevir.  After that things got better, but I ended up having my Riba dose reduced for a few weeks anyway.

Good luck!
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Avatar_f_tn
I took the Procrit shot Thur 10 am, felt okay that day. Friday night legs hurt, started in upper thighs. Layed down with elevated feet and finally fell asleep. Woke up Sat 6 am feeling fine but by 8:30 am started feeling like I was going to pass out. Dizziness & nausea and the passing out feeling kept coming in waves for about 2 hours. I was just about to go to the ER when things started feeling better. Pretty scary there for about 2 hours though. Today I feel better. Now I am worried about whether it was the Procrit or my hemoglobin just dropping lower because package insert said 2 - 6 weeks for Procrit to work. Any ideas as to what caused the problem? I am now concerned about taking another Procrit shot this week but if it was the dropped hemaglobin I afraid not to take it. I do not want to go thru those 2 hours again. It was really scary.
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9648_tn?1290094807
Sounds to me like that was your blood pressure being pretty low. I think a phone call to your doctor is in order. I'm not sure whether that's a sx of Procrit or not.

You don't sound like the kind of person who "takes it easy" so I'm wondering if you were doing any exercise or strenuous activity when it happened?
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