Work and Sleep

[jeff b]

I am working full time and sleeping about nine hours a night. Still at the end of the work day I am worn out. My HGB is as low as it as been but is holding at 8.5. On the weekend I taka a nap on Sat/Sun. I am only 40 and it is frustrating to be so run down.

Is it normal to sleep so much?

What can be done about the fatigue?

Jeff

[Jerry]

Hi Jeff …

I too sleep a lot but frequently my sleep is in the form of naps after a fairly good night’s sleep. Your HGB is obviously low at 8.5 when the low average for men is over 13 … my doc at Cleveland Clinic tells me that sleeping so much is my brain’s way of shutting down my body so that the brain will get the oxygen that it needs to function. If the oxygen is used doing other functions, the brain needs more. You asked about the fatigue. I also take Aranesp (hurts like crazy!) to help the reds, but if I were at 8.5 of HGB I would need a transfusion of a couple of bags of A Pos blood. Hope this helps a bit.

Jerry

[Caroline]

Hi Jeff.

Yes, it is very common to be run down and sleepy when your hemoglobin drops. We can always tell when my Dad’s hemoglobin has dropped below 100 by the amount that he sleeps. Dad has responded to Aranesp very well and his hemoglobin has not dropped in six months.

Best Wishes,
Caroline

[Neil]

Hi Jeff,
Jerry gave you some good info. You should be feeling better IF the Aranesp is working for you.
What was your HGB before going on Aranesp? How long have you been on it? What is the dosage?
As a rule would expect you to have an HGB in the 11.0 – 11.9 range.
Have you discussed increasing the dosage with your doc?
Have you discussed transfussions with your doc?
If you have been on it for a couple months you might discuss switching to Procrit.
The best way to beat the fatigue is to get your red counts up. Aranesp, Procrit and tx are the usual methods.
Are you considering a SCT?

[sdrake]

Neil,

Just wondering, how has the Aransep has worked for you? I hope it’s doing the job.

Shari

[Neil]

Hi Shari,
Have been on Aranesp for 4 weeks. Seems to be working fine.
Was on Procrit for 32 months and it was keeping my reds up.
Will be evaluating how Aranesp is doing over the next couple weeks. Waiting for a report on my EPO level. Depending upon EPO level we may increase the dosage and extend the interval.

[Caroline]

Jerry,

I hope you don’t mind my asking but what hurts like crazy when you get your Aranesp shots?

Caroline

[Jerry]

Caroline …

Debbie gives me the shots in my arm and even though we warm it for 1/2 an hour it still hurts. It hurts when the liquid goes in as if it is really thick or syrupy. My former Procrit shots, also given by Debbie, barely hurt at all. I get Neupogen every two weeks and it hurts about 1/2 as much as the Aranesp. BTW, the first Aranesp shot I got was by a nurse and it hurt just as much.

Do you think it could be because she dulls the needle on the counter when I am not looking?? LOL!! Any suggestions?

Jerry

[chuckk333]

Niel

Why did you switch from procrit to aranesp?

Chuck

[Neil]

Jerry,
Did you ever try getting your shot in the belly?
I do not experience much pain at all.
Hi Chuck,
My doc suggested the change. Feels I may respond better after we finalize the dosage and interval. He also led me to believe there is a cost advantage. Have not seen the bills yet.

[jeff b]

Jerry,

It helps if you get the Aranesp shot very slowly. I get mine weekly and there is little discomfort.

Neil,

My HGB was initally 10.1 when I started the Aranesp in Nov 05. It went up to around 13.2 and has been gradually coming down since. My dosage is 300 micro grams (?) weekly. We have discussed transfusions as a future treatment but my iron level is high. I’m not sure of the measure but I think my iron in the 17 range. A SCT is in my future I just don’t know when. My sister is my donor. They want to wait until the point just before I would be too sick for the transplant. Basically I was told because of the risk from the transplant they don’t want to possibly shorten my life any more than they have to.

Jeff

[Jerry]

Neil and Jeff …

Thanks for the suggestions … will try them if I drink a little Miller Lite before letting Deb try the stomach …

Jerry

[jeff b]

Neil,

I don’t know the cost of procrit. The hospital bills my insurance $2400.00 a shot of aranesp the insurance company pays $1137 and I pay $5.21.

Jeff

[Laural]

Jeff,
When my HGB is low, I often need a mid-day nap. My work place is wonderful about allowing this…which I suppose not all are. It allows me to get through the day. I just sleep sitting at my desk, setting my pager alarm to wake me. Often just 25 to 30 minutes is enough to shake off the worst of the fatigue.
Laura

[Neil]

Hi Jeff,
Do not recall any mantion of your blast count. HAs it increased, have blasts gotten into your peripheral blood? Do your docs have a plan to lower blasts? Possible they could be the source of the problem.
Most of us have a higher HGB level when on Procrit or Aranesp. Goal is to keep it just under 12.0. Both require adequate iron stores to work.
Understand the timing/risk issues with the SCT.
Also think/hope there will be major increases in technology of the process with time.
Have your docs considered a change to Procrit if the Aranesp appears to become less effective? The usual path is from Procrit to Aranesp, but a switch might be a consideration.

[Author]

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