Anybody Ever Refused a Transfusion?

[skersj]

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?

[fretboard]

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

[Magnum]

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

[jdwithhcv]

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

[skersj]

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.

[Myown]

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."

[can-do-man]

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

[Rockerforlife]

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

[Rockerforlife]

So i guess procit is like a transfusion in a pill?

[Myown]

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)

[Andiamo1]

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.

[Andiamo1]

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

[Andiamo1]

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

[skersj]

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?

[Myown]

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

[Myown]

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

[Myown]

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

[Andiamo1]

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

[mikesimon]

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

[R Glass]

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

[Myown]

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

[Myown]

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

[nygirl7]

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.

[jdwithhcv]

"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.  

[skersj]

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?