Not react to procit with low hemoglobin

[theone]

I have low hemoglobin so they are giving me procit shot weekly.

However, my procit shot is not improving the hemoglobin # (currently at 7.1).
Doctor is going to increase my dosage but I don't think it is working.

I feel horrible like feel like falling asleep while driving. Very dangerous.

So, what will be the next thing they will do if procit is failing?

theone

[MooseMom]

Don't your iron levels have to be good in order for Procrit to be effective?  Might you not have enough iron? 

[Gerald Lively]

I know that Procrit is used for anemia and I don't wish to cast doubts on whatever medicines you take, but I have a story about Procrit.  And it isn't good.
..............
I was asked about cancer cures and I said: No cancer is cured. If you are lucky, your cancer is held in remission. 

In July 2011 I was in the hospital suffering from hallucinations due to toxins in the blood stream from renal failure.  About 9:30 PM one evening, a doctor I did not know came to my room and attempted to sell me on a different protocol than my Oncologist prescribe.  The Procrit she was selling was experimental, she said and I said no.  She was trying to treat me for cancer.  She left but nine nurses harassed me for the next four hours.  My wife showed up and we argued over that discussion with the doctor.

Not only was that Doctor being unethical, under mining another doctors patient relationship, but the hospital staff was misbehaving, but I believe what she did was illegal.  It takes a special license in California to administer Procrit. She didn't have one.  The harassment kept on into the night and I finally put my clothes on and walked out of the hospital, and went home.  An hour later the Sheriff showed up at my door. How serious was I about my health?  I sent the cop on his way, waited two hours and checked back in via the emergency room.  I had cancer and renal failure at the time, and I knew it.  My Oncologist and I go way back to 1993 when I had cancer for the first time.  I studied, asked hundreds of questions, and became an “informed patient”.  With the advent of the internet I made every effort to learn about my condition. So, when that Doctor approached me, she discovered that I wasn’t the usual patient. I filed a complaint and she was forced to relocate her office although she still practices. 

Through all of that and my history with cancer(s), and all of the people/patients I have met in chemotherapy centers (call Infusion these days), I know there is no cure, and I know some crackpot every few months will jump up and announce a cure.  Some have bought that crackpot notion: Steve Jobs, Steve McQueen. 

Stick to what you know.

gl 

[Gerald Lively]

Get a hemo transfusion instead.

[jbeany]

How long have you been on it?  It's a long start up time when you first take it.  I didn't notice any difference for the first month.

Has your doctor considered switching you to a different brand than Procrit?  Arenesp, perhaps?  They are similar, but not identical, and one might work better than another for you.  I know I had miserable side effects with Procrit that I didn't have with Arenesp.

Also, are you getting enough iron?  B12?  There is a laundry list of vitamins and minerals that your body needs to make red blood cells.  Procrit only replaces the on switch in the bone marrow.  It won't work if there are no building blocks for the marrow to work with.

Have they done a bone marrow test on you?  Any other tests to check for other possible causes of anemia?  Plenty of docs see CKD on the records and stop thinking past it for other possible causes.  And yet, it really is possible to have more than one illness at once, no matter how much the docs think they know all and see all.   

Gerald is right - if nothing else works, then they start on blood transfusions.  This is not a good thing if you are hoping for a transplant.  It ups your antibody levels and makes it harder to find a match.

Gerald, are you sure that was Procrit and not something with a similar name?  I'm having a hard time understanding how a doc would need a special license to dispense something they used to ship to me at home so I could ram it into my leg with an insulin needle.  It wasn't experimental a decade ago when I was using it.   Unless it was an off label use?  Just wondering.... 

[Gerald Lively]

Procrit - Epogen.  The stuff kills.

[brenda seal]

Laurie had bad side effects from arenesp so they switched him to Mircera . Gerald a year or so ago Laurie was admitted to hospital  and on day 2 a nurse stood toe to toe with him arguing about his routine pain med he has been taking for arthritis for a good 30 years - but she knew better ! She upset him to such a point he walked out of the hospital and rang my son to come get him . The nurse rang our house and demanded he return as he had a cannula in . He refused point blank and removed the cannula himself . Next thing two police officers knocked on the front door to take him back to the hospital to have the cannula removed . Cannula ? , he said What cannula ?

[justme15]

I know I sound like a broken record.  but it seems as if the original poster is in a similar situation as me.  I've been taking procrit weekly for about 2 years now, and my hgb never gets higher than 7-8. the highest it has been is 8.7, and this was after a blood transfusion.  So, I'm not sure that the procrit is working either.  It seems to keep it stable in the 7 range, but it will randomly drop to the 6's without reason!
Fortunately my antibodies are still low even though I have had to get quite a few transfusions. 
Hopefully your doctor will be able to control you hgb by increasing the procrit dose. worse case you will need a blood transfusion.  procrit has its pros and cons, and you have just have to weigh the risks versus the benefits.  In my case, when my hgb drops in the low 6's, it is dangerously low, and a procrit shot won't do the trick.
it all sucks.

[Gerald Lively]

WARNINGS: INCREASED MORTALITY, SERIOUS CARDIOVASCULAR EVENTS, THROMBOEMBOLIC EVENTS, STROKE and INCREASED RISK OF TUMOR PROGRESSION OR RECURRENCE
 
Chronic Renal Failure:
 • In clinical studies, patients experienced greater risks for death, serious cardiovascular events, and stroke when administered erythropoiesis-stimulating agents (ESAs) to target hemoglobin levels of 13 g/dL and above.
• Individualize dosing to achieve and maintain hemoglobin levels within the range of 10 to 12 g/dL.
 
Cancer:
 • ESAs shortened overall survival and/or increased the risk of tumor progression or recurrence in some clinical studies in patients with breast, non-small cell lung, head and neck, lymphoid, and cervical cancers (see WARNINGS: Table 1).
• To decrease these risks, as well as the risk of serious cardio- and thrombovascular events, use the lowest dose needed to avoid red blood cell transfusion.
• Because of these risks, prescribers and hospitals must enroll in and comply with the ESA APPRISE Oncology Program to prescribe and/or dispense PROCRIT® (epoetin alfa) to patients with cancer. To enroll in the ESA APPRISE Oncology Program, visit www.esa-apprise.com or call 1-866-284-8089 for further assistance.
• Use ESAs only for treatment of anemia due to concomitant myelosuppressive chemotherapy.
• ESAs are not indicated for patients receiving myelosuppressive therapy when the anticipated outcome is cure.
• Discontinue following the completion of a chemotherapy course.
 
Perisurgery: PROCRIT® (epoetin alfa) increased the rate of deep venous thromboses in patients not receiving prophylactic anticoagulation. Consider deep venous thrombosis prophylaxis.

(See WARNINGS: Increased Mortality, Serious Cardiovascular Events, Thromboembolic Events, and Stroke, WARNINGS: Increased Mortality and/or Increased Risk of Tumor Progression or Recurrence, INDICATIONS AND USAGE, and DOSAGE AND ADMINISTRATION.)

[Gerald Lively]

On November 30, 2006, reports came out that two studies in this month's New England Journal of Medicine have called into question the overuse of drugs in the treatment of anemia in kidney patients. Johnson & Johnson's Procrit and Amgen’s Epogen are the two most popular anemia drugs which are at the center of the controversy, as researchers try to determine whether they've been over-prescribed by medical professionals. Sales of anemia drugs are nearing $10 billion annually. Procrit (Generic: Epoetin alfa) was granted approval in 1999 by the FDA.

According to the above studies, Scientists established that anemic kidney patients are susceptible to heart problems or death when aggressively treated with Epogen or other anemia drugs. The drugs are intended to boost hemoglobin in anemic patients, but the increase in hemoglobin is apparently associated with other serious risks. Prior to the arrival of these anemia treatments, patients had to undergo transfusions to keep their red blood cell counts at healthy levels.

These new drugs have been very successful in boosting red blood cell counts, but the fear today is that doctors have become too reliant on the drugs and that they aren't sufficiently aware of the risks related to boosting hemoglobin (a main component of red blood cells) in kidney patients, which can include heart attack, stroke, and high blood pressure.

[jbeany]

Gerald,
 Yeah, I knew the risks. I willingly took them. If you are on a transplant list, the risks of transfusions are problem, too.  I've had a hemoglobin under 7.  I couldn't walk up a flight of stairs in less than half an hour because I had to stop on each step to rest.  I certainly couldn't live like that.

I think a lot of CKD patients are finding the Medicare limits frustrating because the choice is no longer ours.  I think the docs should be informing patients of the pros and cons of keeping levels above 11 and letting them make the decisions.  I think it's especially hard on the men.   Women run between 11 and 13 when they are healthy, so keeping it between 10 and 11 isn't a big difference.  The range for men starts at 13.  If your normal healthy level was 15, 11 is going to feel like slow torture.

The list of possible side effects from all the meds I've been on and and on now are enough to make anyone curl up and scream in terror.  I'm now on immunosuppresants.  Hello, cancer risk.  But I need them to live, at least to live D free.   How is that different from this?  It was my choice to seek a transplant and live with that risk.  I think it should be everyone's choice to determine how much risk they are willing to run from epo as well.

[paris]

You are right Jbeany; we have to weigh the risks.   Cellcept and Prograf have huge side effects but even though they can hurt the kidney, I will take the chance to beable to keep my new kidney.   

I find when my hemoglobin is below 9, I feel like I am walking through quicksand.  It takes all my energy to put one foot in front of the other.  7 or 8? Horrible, but Epo was a lifesaver and kept my level at 9.   It was a risk worth taking.  I'm not sure it seemed like taking a risk, I just wanted to live!   

Things are constantly changing in the kidney world.  Some good, some bad.

[justme15]

Gerald,
 Yeah, I knew the risks. I willingly took them. If you are on a transplant list, the risks of transfusions are problem, too.  I've had a hemoglobin under 7.  I couldn't walk up a flight of stairs in less than half an hour because I had to stop on each step to rest.  I certainly couldn't live like that.

I think a lot of CKD patients are finding the Medicare limits frustrating because the choice is no longer ours.  I think the docs should be informing patients of the pros and cons of keeping levels above 11 and letting them make the decisions.  I think it's especially hard on the men.   Women run between 11 and 13 when they are healthy, so keeping it between 10 and 11 isn't a big difference.  The range for men starts at 13.  If your normal healthy level was 15, 11 is going to feel like slow torture.

The list of possible side effects from all the meds I've been on and and on now are enough to make anyone curl up and scream in terror.  I'm now on immunosuppresants.  Hello, cancer risk.  But I need them to live, at least to live D free.   How is that different from this?  It was my choice to seek a transplant and live with that risk.  I think it should be everyone's choice to determine how much risk they are willing to run from epo as well.

agreed!!!

[Gerald Lively]

I understand why people would assume this risk.  I would not, even when I was half unconscious.  The point of my posts was that Procrit is "overperscribed".  I managed to get hemogloblin transfusions instead.

Also, some Doctors are not ethical in their treatment of patients.  Anyone who has read what I post would know that I am not the shy type.  I hope I speak for well-being of others.

gl

[paris]

But, if you are in your 20's and need a transplant to be able to see 40, each transfusion can mess with your antibody levels raising it each time.   Most doctors in my world, would use transfusions as the last resort.  A transfusion itself is always a risk.   Each person needs to decide which risk he is willing to take.       

A patient has to find a doctor they trust.  I changed nephs for just that reason -- I didn't fully trust him.  I researched, asked some medical friends and found a new one.   

I find it fascinating what everyone thinks on kidney subjects.  We are all passionate about different things. 

[Gerald Lively]

Hmmmmm!  Last month I was getting antibodies and hemo transfusions in the very same session - for cancer.  The same six months ago when I had cancer and was on dialysis.

[jbeany]

  Anyone who has read what I post would know that I am not the shy type.  I hope I speak for well-being of others.

gl

Don't stop, please!  I think the new members on here deserve to hear all the view points, not just whatever bits of info their particular center decides to share.  I don't have to agree with it to value it, and to know that others need to see your side.

[big777bill]

 I had a liver transplant on 3/22/2005 and was put on prograf as my main anti-rejection med. After 4 years of taking it the Dr tells me I have to switch to rapamune due to kidney damage caused by PROGRAF!  ESRD caused by prograf toxicity is fairly common. 2 1/2 years after the prograf was D/C'd I started dialysis. I was never told that this was a possibility. Even if it was a remote possibility I should have been warned.

[big777bill]

 The more I think about this I realize it is all a crap shoot. If any of us had gotten our conditions 50 years ago we would all be dead. The different modalities and medicines we are using today to extend life just were not available. The Drs have to choose the lesser of many evils when deciding what is best for us. Medicine is evolving at breakneck speed and some mistakes will be made. 50 years from now they will be appalled at the things that were done just as we are at medical procedures from years ago. It was 150 years ago when they still knew nothing of sterile technique. In the early 20th century you could buy heroin and syringes from the Sears catalog! In all reality I shouldn't complain about my Dr's choice of anti-rejection meds. At the time I'm sure they thought it was the right decision. I'm still here 7 years later when I could have been 6ft. under.

[Atooraya]

Look, let's not over react to drug lables.
An expecting lady participates in a phase III drug study and reports a craving for pickles while in the study. Now, the drug manufacturer is forced to put on the drug lable that this drug has been known to cause a craving for pickles........

[paris]

Big777bill,  I am sorry no one told you this information.  My team did tell me and I don't take things at face value. So I bugged them with lots of "what if" questions.   I wish you had that opportunity.    We are all glad that you're still here and sharing your experiences. 

[tito]

A few posters commented about transfusions and antibodies. Please always ask for irradiated blood. Kills the antibodies. A must for those hoping for a transplant.

[paris]

My antibodies are from my pregnancies.  Each time my body thought I had a foreign object in me so it kept buiding antibodies against it.  So many things I never knew before kidney failure!