Epogen... should we be worried?

[mawf1977]

So NBC was reporting tonight that the FDA is warning about the over-usage of Epogen and Procrit. They are saying that it could do more harm than good in some instances, causing blood clots, heart attacks and death.

Here's the link: http://www.msnbc.msn.com/id/17538008/

What do you guys think? Should we be concerned? Is there really anything we can do?

[shay_pcb]

I think the doctors know the risks and figure that it's more important to have than not to have. That does worry me little bc I already have a blood clotting disorder, have had a DVT and clotted fistula, and am on lifetime blood thinners (I'm 19). I get epo twice a month, so that does worry me a little. I'm sure most doctors know what they're doing though.

I hope you don't mind. I copied this and pasted it here on another website to see what others think. Maybe you'll get more answers there!

[mawf1977]

Thanks, Shay!

Maybe with both boards, we can get a real discussion going. I asked my doctor about the news report and of course he defended my dose and its benefits. Sometimes I feel like we have no choice in the matter, and that we just really need to know the truth about what we're putting into our bodies.

The thing is this is old news. I knew about the dangers of using high doses of Epogen twelve years ago. Like all things you just have to weigh the dangers yourself.
LSB

According to my doctor and the articles, those studies are primarily on cancer patients and non-dialysis patients.

[shay_pcb]

Really? Bc my DR lowered my Epo after hearing that and me having chest pains. I think it applies to EVERYONE who takes Epo.

Originally Posted by shay_pcb

Really? Bc my DR lowered my Epo after hearing that and me having chest pains. I think it applies to EVERYONE who takes Epo.

http://davita.com/templates/content.shtml?id=1129

FDA Public Health Advisory

On Friday, March 9, 2007, the U.S. Food and Drug Administration (FDA) updated the instructions and warnings for the use of the drugs Epogen® (EPO), Procrit® and Aranesp®. These are all drugs used to treat anemia, a common symptom of kidney failure.
Why has this happened?

Recently, several studies have been published regarding the use of anemia medications. These studies focused primarily in the oncology (cancer) and pre-ESRD (pre-end stage renal disease or non-dialysis patient populations). The FDA made the changes to the medications' labels after reviewing the findings from these studies.
What does all of this mean?

As a result, the FDA is changing its advice to your doctor regarding recommended hemoglobin levels.
Does this mean I’ve been getting too much EPO?

Not necessarily. Your physician has written a prescription for you taking into consideration your health needs, the results of your monthly lab draws and all of the relevant scientific studies. The dose of EPO that you receive should be a decision between you and your doctor, based on your own individual medical situation.
Does this mean I should stop taking EPO?

No. Only your physician should make that type of decision. Untreated anemia can lead to fatigue and other more serious conditions that can make dialysis more difficult.
What is DaVita’s position?

Your safety, health and well-being are our primary concern. DaVita centers have achieved the best overall clinical outcomes in the industry. We are proud of the fact that we have the highest patient survival rates in the United States.

DaVita has partnered with the leading physicians in the country and will ensure that your physician has access to these experts as they evaluate the new FDA recommendations.
Who should I talk to if I have additional questions?

You should talk with your doctor. DaVita health care professionals at your center will be glad to help arrange this call.

[mawf1977]

I believe the bad side effects of Epo occur in anyone who's given more than they need. The articles I've read acknowledge dialysis patients. Of course, according to my doctor, we will always need Epo to combat the anemia. There is no other alternative, other than a transfusion. Just make sure the amount you're given is appropriate and if you have chest pain, talk to your doctor. Things I've read about Epo are pretty scary, but just stay on top of the issue and don't ignore the studies.

Originally Posted by mawf1977

I believe the bad side effects of Epo occur in anyone who's given more than they need. The articles I've read acknowledge dialysis patients. Of course, according to my doctor, we will always need Epo to combat the anemia. There is no other alternative, other than a transfusion. Just make sure the amount you're given is appropriate and if you have chest pain, talk to your doctor. Things I've read about Epo are pretty scary, but just stay on top of the issue and don't ignore the studies.

There is also Procrit and Aranesp beside Epogen for the treatment of anemia.

The issue is "high doses", isn't it? It isn't just a matter of having the injections at all, it's a matter of overdosing the medication. I'm not on dialysis yet, but the staff of my nephrologist is very conscientious about monitoring my blood count and adjusting the dosage accordingly.

Almost every medication comes with some kind of warning, and most have dire consequences if misused. If you trust your nephrologist, I wouldn't worry too much about this. If you don't trust his judgement, get another doctor.

[chefnancy]

My neph told me that the key to avoiding EPO overdose problems was to keep fine tuning the dose so that the hemoglobin count stays between 11.5 & 12.5. He said the clotting problems most often occur in cancer patients and in patients whose hemoglobin is not carefully monitored. I am willing to take the risk because epogen gave me back my energy.

[Gustine]

Originally Posted by chefnancy

My neph told me that the key to avoiding EPO overdose problems was to keep fine tuning the dose so that the hemoglobin count stays between 11.5 & 12.5. He said the clotting problems most often occur in cancer patients and in patients whose hemoglobin is not carefully monitored. I am willing to take the risk because epogen gave me back my energy.

Absolutely, the key is good EPO management. There really is no fear unless then clinic and/or Doctor is not monitoring the treatment closely.

[hemoathome]

As long as your hemoglobin stays below 12.5 you can continue on Epo. It's when it gets higher that the clots and dangers exist.

Originally Posted by mawf1977

So NBC was reporting tonight that the FDA is warning about the over-usage of Epogen and Procrit. They are saying that it could do more harm than good in some instances, causing blood clots, heart attacks and death.

Here's the link: http://www.msnbc.msn.com/id/17538008/

What do you guys think? Should we be concerned? Is there really anything we can do?