Polycythemia after Aranesp

Polycythemia after Aranesp

DB
DB

July 19th, 2007, 9:57 pm #1

My husband was treated for hairy cell leukemia in February 2006 with Claudribine. He is now in remission. He also was given Aranesp and I believe Epogen or Neupogen. Now he has Polycythemia. We have read about the "black box" warnings on these EPO drugs and apparently this is showing up in patients treated with these drugs. Has anyone else with HCL experienced this?
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Pat
Pat

July 19th, 2007, 10:10 pm #2

DB, sorry, I have not had any of that I know of.
I can't hardly pronounce it, but I looked to see it was over abundance of red cells, right? (hooray for wikipedia

Glad to hear your hubby is doing good except for this condition. Is it limiting him in any ways? What do they do for Polycy?

Did your hubby see Dr. Saven at Scripps?

Pat
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whatamIdoing
whatamIdoing

July 19th, 2007, 10:38 pm #3

My husband was treated for hairy cell leukemia in February 2006 with Claudribine. He is now in remission. He also was given Aranesp and I believe Epogen or Neupogen. Now he has Polycythemia. We have read about the "black box" warnings on these EPO drugs and apparently this is showing up in patients treated with these drugs. Has anyone else with HCL experienced this?
Hi, DB, and welcome to our little club.

What kind of polycythemia does your husband have? Polycythemia just means "too many red blood cells," and can have several causes.

As I understand it, the only kind of polycythemia that's mentioned anywhere on the Aranesp packaging is a just a short-term strong response to the drug instead of a chronic disease. The basic treatment is to stop taking the RBC-boosting hormone until the effect fades (and perhaps bleed the patient if necessary to reduce side effects). It goes away on its own.

Polycythemia rubra vera (or primary polycythemia), on the other hand, is an incurable condition that is known to turn up in HCL patients. It's kind of "hairy cell for red blood cells." I believe the first formally reported dual-diagnosis was around 1980, which pre-dates the availability of EPO drugs by about two decades.

-w.

P.S. If you want to know what the actual Aranesp warnings are, go to the official website at http://aranesp.com/professional/cia/pre ... mation.jsp Amgen's own websites are always up to date (as required by federal law). The boxed warnings are at the very top. You'll find polycythemia (not PV) mentioned only once, under "Overdosage."
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Mike
Mike

July 19th, 2007, 10:48 pm #4

Now that is interesting - my mother had polycythemia vera and used to joke that she would give her excess rbc's to me! She was treated for it the last 10 years or so of her life (She died in 2003 at age 90 of a stroke). One doctor told her that it was more often found among people who had lived at high altitudes. She was raised in the mountains. Maybe my HCL has a hereditary link?
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DB
DB

July 20th, 2007, 3:07 pm #5

DB, sorry, I have not had any of that I know of.
I can't hardly pronounce it, but I looked to see it was over abundance of red cells, right? (hooray for wikipedia

Glad to hear your hubby is doing good except for this condition. Is it limiting him in any ways? What do they do for Polycy?

Did your hubby see Dr. Saven at Scripps?

Pat
Hi! Thanks for your note!

No, we have not seen the Dr. in La Jolla. Do not live near there at present.

Yes, he did very well with the HCL treatment. The only negative was the polycythemia. Basically it is too many red blood cells which makes for sludgy blood. Could result in heart attack or stroke which is very scary. The only treatment we have been offered is to have blood removed. He also takes one aspirin per day.
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Anonymous
Anonymous

July 20th, 2007, 3:20 pm #6

Hi, DB, and welcome to our little club.

What kind of polycythemia does your husband have? Polycythemia just means "too many red blood cells," and can have several causes.

As I understand it, the only kind of polycythemia that's mentioned anywhere on the Aranesp packaging is a just a short-term strong response to the drug instead of a chronic disease. The basic treatment is to stop taking the RBC-boosting hormone until the effect fades (and perhaps bleed the patient if necessary to reduce side effects). It goes away on its own.

Polycythemia rubra vera (or primary polycythemia), on the other hand, is an incurable condition that is known to turn up in HCL patients. It's kind of "hairy cell for red blood cells." I believe the first formally reported dual-diagnosis was around 1980, which pre-dates the availability of EPO drugs by about two decades.

-w.

P.S. If you want to know what the actual Aranesp warnings are, go to the official website at http://aranesp.com/professional/cia/pre ... mation.jsp Amgen's own websites are always up to date (as required by federal law). The boxed warnings are at the very top. You'll find polycythemia (not PV) mentioned only once, under "Overdosage."
Hi!

Thanks for responding!

We do not have a definitive diagnosis. We did not opt for further testing on this as he does not have any insurance now. However, it did not show up on bone marrow testing that was done before and after HCL treatment. Also, the way we understand it, the treatment would be the same no matter what type (having blood removed).

He was healthy for so many years that he was stubborn about seeing doctors and does not have any history to go back and look at. Blood work done at time of diagnosis with HCL did not show this problem.

Are you saying that polycythemia rubra vera goes along with HCL? How often does that occur? We were told that he is at risk of heart attack or stroke and the counts are not getting any better. You said that it goes away in time? This has been going on since his treatment about 15 months ago. Is it possible for the blood counts to lower on their own?

How many people face these issues after treatment with Aranesp/Procrit/Epogen?
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Anonymous
Anonymous

July 20th, 2007, 3:22 pm #7

Now that is interesting - my mother had polycythemia vera and used to joke that she would give her excess rbc's to me! She was treated for it the last 10 years or so of her life (She died in 2003 at age 90 of a stroke). One doctor told her that it was more often found among people who had lived at high altitudes. She was raised in the mountains. Maybe my HCL has a hereditary link?
Hi!

Wow, it sounds like your family has some good genes to go to their 90s!

I wonder about the HCL. Have heard that before.
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whatamIdoing
whatamIdoing

July 21st, 2007, 6:03 pm #8

Hi!

Thanks for responding!

We do not have a definitive diagnosis. We did not opt for further testing on this as he does not have any insurance now. However, it did not show up on bone marrow testing that was done before and after HCL treatment. Also, the way we understand it, the treatment would be the same no matter what type (having blood removed).

He was healthy for so many years that he was stubborn about seeing doctors and does not have any history to go back and look at. Blood work done at time of diagnosis with HCL did not show this problem.

Are you saying that polycythemia rubra vera goes along with HCL? How often does that occur? We were told that he is at risk of heart attack or stroke and the counts are not getting any better. You said that it goes away in time? This has been going on since his treatment about 15 months ago. Is it possible for the blood counts to lower on their own?

How many people face these issues after treatment with Aranesp/Procrit/Epogen?
> Are you saying that polycythemia rubra vera goes along with HCL?
> How often does that occur?

Yes, occasionally. HCLers probably have a somewhat higher risk for PV than the average person, although it's important to remember that the likelihood of having any two rare diseases is very small (but non-zero). My very rough estimate is that about one person is diagnosed with both HCL and PV in the U.S. each year (or maybe each two years). I would be surprised if more than ten new HCLers per year developed PV, but there is definitely some overlap for the two diseases.


It's important to understand that "PV" and "P-not-V" can be very different.

The cause of PV is not known.

A variety of causes for P-not-V are known: an overdose of blood-boosting hormones, kidney disease, several kinds of solid tumors, massive obesity, lung disease, smoking, and living in the mountains.

I mention this because HCLers have an increased risk of solid tumors (regular, non-leukemia cancers). On the off chance that your husband has P-not-V caused by kidney cancer, then he really needs to be treating the kidney cancer instead of taking aspirin and bleeding himself. On the other hand, if his P-not-V is caused by something benign (much more likely), the normal treatments for PV are just fine.


> You said that it goes away in time?
> Is it possible for the blood counts to lower on their own?

Only the P-not-V which is caused by an overdose of Aranesp (or similar) hormones will go away when the hormone's effects fade. In two cases of patients being given ten times the correct amount of these drugs, their counts had normalized within three months of stopping the hormones. A smaller overdose might normalize slightly faster than that.

If your husband has had this problem for 15 months, I think it's safe to say that his case was NOT caused by the hormones and will NOT go away on its own.


> How many people face these issues after treatment with Aranesp/Procrit/Epogen?

Anyone who overdoses on it.

It's not very useful to put a number on it because the likelihood depends on individual prescribing patterns. A physician who is aggressive with these drugs will have more patients who are overdosed. A physician who is stingy with them will have more patients who need blood transfusions. There is no magic dose that works perfectly for everyone. It's a difficult balance.

-w.
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betty
betty

February 14th, 2008, 2:01 am #9

Hi, DB, and welcome to our little club.

What kind of polycythemia does your husband have? Polycythemia just means "too many red blood cells," and can have several causes.

As I understand it, the only kind of polycythemia that's mentioned anywhere on the Aranesp packaging is a just a short-term strong response to the drug instead of a chronic disease. The basic treatment is to stop taking the RBC-boosting hormone until the effect fades (and perhaps bleed the patient if necessary to reduce side effects). It goes away on its own.

Polycythemia rubra vera (or primary polycythemia), on the other hand, is an incurable condition that is known to turn up in HCL patients. It's kind of "hairy cell for red blood cells." I believe the first formally reported dual-diagnosis was around 1980, which pre-dates the availability of EPO drugs by about two decades.

-w.

P.S. If you want to know what the actual Aranesp warnings are, go to the official website at http://aranesp.com/professional/cia/pre ... mation.jsp Amgen's own websites are always up to date (as required by federal law). The boxed warnings are at the very top. You'll find polycythemia (not PV) mentioned only once, under "Overdosage."
Is there anyone else out there with this rare blood disease? my husband has this.. primary.... He's having all symptoms except itching Unfortunately He gets his health care from the V.A and I think those idiots are going to just let him die without ever helping him.
He uses a bipap for severe sleep apnea but it's been a yr and it hasn't helped yet... First time we heard anything about "thick blood" was in hte summer of 93 when he had a "heart episode" they called it that because no enzymes showed up. test showed little heart damage.
no follow up on the thick blood issue.

He's had enlarged red cells (oxygen deprived cells) for a yr or two on/off. Darn VA will do test then never tell you the results, or follow up...

I just found out about the polycythemia... about 2 wks ago.. They won't see him for another 3 wks... BUT the test that showed he had this were done 11 months ago...they didnt call... they did not treat him... his blood pressure has sayed sky high for weeks now... so they gave him another med to add to what he already takes... beta blockers AND calcuim something.. Pharmacy site shows the two can be dangerous... and cause "condensed" blood.. hell that is ALREADY a problem...
From my reading at Mayo Clinic site about this... the thick blood can cause the bp to rise... and he already had high bp... it used to be controled with meds... but now meds don't work...I think due to that thick blood.

AT THE MAYO CLINIS SITE.... also physicians reference.... it says that one over 50 presenting symptoms... has a life expectancy of about 18 months without treatment... he's had this over 1 yr with no treatment..
he has absolutely SEVERE leg cramps... i think this is causing them..they make him fall right out of the bed and onto the floor some nights...

i think these idiots are trying to kill him...

IF any of you have this... are you treated by an intern or a special dr???

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Eric
Eric

August 7th, 2013, 7:07 am #10

My husband was treated for hairy cell leukemia in February 2006 with Claudribine. He is now in remission. He also was given Aranesp and I believe Epogen or Neupogen. Now he has Polycythemia. We have read about the "black box" warnings on these EPO drugs and apparently this is showing up in patients treated with these drugs. Has anyone else with HCL experienced this?
HCL treated by 2CdA in 2007 and then neupogen to get the white blood cells back up, subsequently developed polycythemia 2007 and 2008 treated with phlebotomy. More recently developed eosinophilia treated with Prednisone.
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