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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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9648 tn?1290091207
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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Avatar universal
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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Avatar universal
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 universal
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 universal
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 universal
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 universal
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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547836 tn?1302832832
or at least if you're gonna get one, get it from a family close relative who you can trust.
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547836 tn?1302832832
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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Avatar universal
I would be very interested in an update about how it went with your thyroid situation of a month ago.
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Avatar universal
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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Avatar universal
this also the third time I have treated, all 3 times with procrit
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Avatar universal
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,  
Helpful - 0
179856 tn?1333547362
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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179856 tn?1333547362
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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Avatar universal
that should read "I took procrit for 40 weeks of my 48."
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Avatar universal
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 universal
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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9648 tn?1290091207
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 universal
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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Avatar universal
"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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179856 tn?1333547362
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 universal
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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Avatar universal
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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