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In a message dated 11/20/99 9:55:28 PM Eastern Standard Time,

DJIMBE17@... writes:

<< what is epogen?

>>

Epogen is erthrypoiten and it is used to make the marrow produce more red

blood cells. In a trial by Bell, M.D., it worked wonders and proved

that symptoms are entirely reversible, but the patient's hemotocrit went too

high. Dr. Klimas is now trying lower doses in a trial. She hasn't yet

reported on results.

Gail

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  • 2 years later...

HI Gene, yes, I was on Epogen (40,000 units wkly) for10 of the 13 months I

was on combo. My Hematocrit and Hemaglobin never was good from the 3rd week

into Combo. The Epogen helped to keep them from falling dangerously low,

which is what happened the first time . They both bottomed out at 3 wks. I

felt really lousy. I also had to stop Combo a few times until they got the

dose of Epo right. My WBC, while low throughout, never got too low and my

absolute nuets were okay...so no Nupogen. I went to a Hematologist for the

injections, tho I know someone on chemo for cancer that has a visting nurse

come in wkly to do the shot. You can also do it yourself if they give you

thinner needles than the spikes they gave me! HOpe this helps you feel a bit

better...believe me tho', it is not like the commercials on TV!! LOL! And if

you really look at what those folks are so happy about, it's the ability to

'send a fax' (o WOW!) and go to the market once a wk to buy some

veggies.......Haha..but it IS better than having your numbers hit bottom.

Good luck, luv gee

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HI Gene, yes, I was on Epogen (40,000 units wkly) for10 of the 13 months I

was on combo. My Hematocrit and Hemaglobin never was good from the 3rd week

into Combo. The Epogen helped to keep them from falling dangerously low,

which is what happened the first time . They both bottomed out at 3 wks. I

felt really lousy. I also had to stop Combo a few times until they got the

dose of Epo right. My WBC, while low throughout, never got too low and my

absolute nuets were okay...so no Nupogen. I went to a Hematologist for the

injections, tho I know someone on chemo for cancer that has a visting nurse

come in wkly to do the shot. You can also do it yourself if they give you

thinner needles than the spikes they gave me! HOpe this helps you feel a bit

better...believe me tho', it is not like the commercials on TV!! LOL! And if

you really look at what those folks are so happy about, it's the ability to

'send a fax' (o WOW!) and go to the market once a wk to buy some

veggies.......Haha..but it IS better than having your numbers hit bottom.

Good luck, luv gee

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Gee,

Thanks for the info about Epogen. I've been giving myself the Neupogen

injections, and I'll be giving myself the Epogen injections when the

medication is shipped.

I'm always somewhat fatigued, but bearably so, till my red blood count

started dropping. What a difference. Really tired now. I imagine the Epogen

will help. I've only been on the Neupogen for a month now. Hasn't helped yet.

Numbers keep dropping, but they raised my dose from 1cc to 1.6cc, so we'll

see what that does.

I'm around a lot of colds and flu in our salon, especially at this time of

the year when the children start back to school and bring everything home to

their parents. But I want to stay on treatment as long as possible. Had to

stop twice before because of white blood count and platelets.

I mailed an article about Neumega (a platelet growth factor) to the PA at the

Omaha VA. She said the article was two years old and the Neumega never panned

out.

Thanks again for answering my post about the Epogen.

Hope you're well.

Your friend,

Gene

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Gee,

Thanks for the info about Epogen. I've been giving myself the Neupogen

injections, and I'll be giving myself the Epogen injections when the

medication is shipped.

I'm always somewhat fatigued, but bearably so, till my red blood count

started dropping. What a difference. Really tired now. I imagine the Epogen

will help. I've only been on the Neupogen for a month now. Hasn't helped yet.

Numbers keep dropping, but they raised my dose from 1cc to 1.6cc, so we'll

see what that does.

I'm around a lot of colds and flu in our salon, especially at this time of

the year when the children start back to school and bring everything home to

their parents. But I want to stay on treatment as long as possible. Had to

stop twice before because of white blood count and platelets.

I mailed an article about Neumega (a platelet growth factor) to the PA at the

Omaha VA. She said the article was two years old and the Neumega never panned

out.

Thanks again for answering my post about the Epogen.

Hope you're well.

Your friend,

Gene

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HI Gene, yes, you'll definitely have less fatigue with the Epo. Also any

dizziness from your counts dropping, or short of breath symptoms should

improve. I am doing well, thanks. As of 9 months post tx I was still

undectable. It is now 1 yr and need another PCR. All that seems to be left

is some fatigue, nerve damage and still the old joint pain. But I'm working

on that! Take care, hang in there, gee

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HI Gene, yes, you'll definitely have less fatigue with the Epo. Also any

dizziness from your counts dropping, or short of breath symptoms should

improve. I am doing well, thanks. As of 9 months post tx I was still

undectable. It is now 1 yr and need another PCR. All that seems to be left

is some fatigue, nerve damage and still the old joint pain. But I'm working

on that! Take care, hang in there, gee

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I wrote about taking Epogen. I made a mistake and said I was taking 300 mcg.

a week. That was an error. I guess I mixed it up with the neupogen dose. I

was on 10,000 units a week. It did the trick. Terry

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I wrote about taking Epogen. I made a mistake and said I was taking 300 mcg.

a week. That was an error. I guess I mixed it up with the neupogen dose. I

was on 10,000 units a week. It did the trick. Terry

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Terry,

Thanks for the response about Epogen.

Yes, my dose is also 40,000 units. I've taken one so far. The literature says

it's well tolerated. Actually, I thought it would say Epogen on the vial, but

it's Procrit. I'll bet I'm going to feel less tired soon.

Now, that Neupogen is another animal. I feel like someone broke both my

wrists. Ouch! The side effects aren't nice ones. And so far, it hasn't

helped. My absolute neutrophil count was 800, the next week it was 600, the

next week it was 400, and this week it was 309. My dose was upped from 300

micrograms to 480, so I'm hoping that will help. I was told to lower my peg

dose from .5 to .4 until my white blood count comes up. I look at it this

way.....at least I get to stay on 80% of the dose. lol

I don't mind being tired, but I don't like this crankiness. My daughter

turned 16 yesterday. We've always been close. She's feeling a lot of peer

pressure at school, and it's taking a toll on our relationship. Well, we had

a long heart to heart tonight, and I feel much better about things, and I

think tomorrow and from now on are going to be brighter again. It's wonderful

what communication can do for a family.

Thanks again for the response about the egogen. I appreciate it. Hope you're

well.

Your friend,

Gene

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Terry,

Thanks for the response about Epogen.

Yes, my dose is also 40,000 units. I've taken one so far. The literature says

it's well tolerated. Actually, I thought it would say Epogen on the vial, but

it's Procrit. I'll bet I'm going to feel less tired soon.

Now, that Neupogen is another animal. I feel like someone broke both my

wrists. Ouch! The side effects aren't nice ones. And so far, it hasn't

helped. My absolute neutrophil count was 800, the next week it was 600, the

next week it was 400, and this week it was 309. My dose was upped from 300

micrograms to 480, so I'm hoping that will help. I was told to lower my peg

dose from .5 to .4 until my white blood count comes up. I look at it this

way.....at least I get to stay on 80% of the dose. lol

I don't mind being tired, but I don't like this crankiness. My daughter

turned 16 yesterday. We've always been close. She's feeling a lot of peer

pressure at school, and it's taking a toll on our relationship. Well, we had

a long heart to heart tonight, and I feel much better about things, and I

think tomorrow and from now on are going to be brighter again. It's wonderful

what communication can do for a family.

Thanks again for the response about the egogen. I appreciate it. Hope you're

well.

Your friend,

Gene

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Hi Gene,

You are right about the neupogen. It gave me aches and pains and

violent headaches, and more fatigue. I was at times on as much as 900 mcg. a

week, and a half of the normal dose of pegasys. I was finally taken off of

the ribavirin completely, and finished that way, on half pegasys. I was

negative at six months, and will have a viral load test in three more months.

I feel better, but not good. Still have headaches, though not as bad, and

in the afternoon the fatigue comes back. I know recovery will be gradual,

but I am impatient. I hope the time goes by fast for you. I will keep all of

you in my prayers. Terry

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Hi Gene,

You are right about the neupogen. It gave me aches and pains and

violent headaches, and more fatigue. I was at times on as much as 900 mcg. a

week, and a half of the normal dose of pegasys. I was finally taken off of

the ribavirin completely, and finished that way, on half pegasys. I was

negative at six months, and will have a viral load test in three more months.

I feel better, but not good. Still have headaches, though not as bad, and

in the afternoon the fatigue comes back. I know recovery will be gradual,

but I am impatient. I hope the time goes by fast for you. I will keep all of

you in my prayers. Terry

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