EPO levels
 

John has used Procrit in the past for his anemia. Depending on the what's been diagnosed will depend on whether or not medicare/insurance pays for it. Medicare usually will authorize it if your Hemaglobin (HGB) is less than 12. This is because there's an increase risk of stroke when you continue to use it when your HGB is above 12. This mostly applies to cancer patients.

Even though procrit is not considered an approved "treatment" for John's aplastic anemia, it has been known to help those whose "natural" levels of EPO produced by the kidneys is less than 200 in the presence of anemia. The normal EPO range is very low....I think 4 -19. John's was only 99. So even though it is considered "high" he did use procrit and it did work to get him transfusion independent. People with anemia can have EPO levels as high as 1000.

It would be a good idea for your doc to check your EPO level. This is a blood serum test. It can be part of the work-up the hematologist does. You may have to ask to have this run. If they have not checked your iron, B12, Folate, B6 and copper levels, they should do that also. Rule out the easy stuff first.

Wishing you best.....Marlene

Great info
 

Thank you both for all the info. My Hemoglobin is 9.6 right now, so it looks like I would be eligible if that's what is necessary. I'm anxiously awaiting the Monday doctor's visit. But we will only be addressing the tip of the iceberg I'm afraid. There are just so many things to be ruled out and checked. I feel rather anxious, depressed and frightened. Naturally this has flared the neuropathy.

Anyway, thanks for all the info. I'm printing this out for my rheumatologist.

Billye

Plan of action
 

I saw the rheumie today. My new bloodwork was no better. His thinking is that the flare of the rheumatoid arthritis/spondylarthropathy/sjogren's and whatever the heck the rest of the stuff is, is causing my anemia. He has raised my methotrexate back to the level that it was when I was at Mayo, 20 mg.

If I'm not feeling better in two weeks, he's going to put me on a daily dose of 7.5 mg. of prednisone for a few months to bring the inflammation down. But we are both hoping that the methotrexate will bring it down. I am just in a lot of pain. All the joints,.. but primarily the sacro/sacroilliac joint, hip area. The swelling is causing me a lot of pain too in my ankles. And the neuropathy is out of sight!!

If the bloodwork doesn't come down with the inflammation relief in 4 weeks, then he is sending me to a hematologist and will get another rheumatology opinion. I can tell he's frustrated. He says he has me on methotrexate and Humira which European studies have said for years is the best for my diseases. But then I'm getting no better, only worse. The prednisone is not good because of my bones but he says the inflammation isn't good either. Kind of a d*mned if you don't and a d*mned if you do situation.

Anyway, that's the plan.

EDIT: OOps! quick change. The testwork he thought he was looking at just came in this afternoon. Hemo. and Hemocrit is dangerously low. He's hospitalizing me and giving me blood. I'll know more in a day or two. And....I'VE GOT MY LAPTOP for when I can use it.

Billye

Oh my, Billye:

Nothing much I can say except send warm hugs and wishes that you feel better soon.

Thank goodness you can take your laptop with you.

Take care hon.

Melody

Billye, yes it's overwhelming at times....
 

but you are getting good care, be grateful for that!
Others aren't so lucky as you know.

Only thing about it all is DURN! Hospital....isn't that were SICK people are? The kinds who 'share'? Maybe that can get you some useful home helps...infusions and nurse aide...far cheaper than a hospital and not so many SICK people...not to mention that it's HOME!

Get out SOON! Get Better SOON! and Take Care! - j

:hug::hug::hug::hug:

Can't do that
 

I was told that they are no longer allowed to give whole blood products in the office. He told me I'd have to be hospitalized to do this. And he's calling in a gastro and a hematologist to take a look at me. It's not just low, it's dangerously low. He really wanted to start it today, but I put it off until tomorrow because I could not get ready in time. Husband wasn't even home. I'll just have to take my chances with things. I've asked for a private room. The room charges are the only things we'll be elegible to pay. We've gone over the maximum out of pocket expenses this year already. Insurance is paying 100% of everything allowable. Just cross your fingers I don't catch anything. I'll make sure that anyone checking me washes their hands.

There are always chances that the home help and aides will spread the germs anyway.

Billye

Bring some of those hand sanitizer gel thingees.

They come in very handy.

Mel

Man oh man, I am really sorry, Billye. This must be very scary for you. And you must feel terrible. I don't know how you have the energy to worry about "getting ready". I would have just called a cab and walked out the door. Please be careful until you get the blood transfusion. Hugs and kisses. I hope you feel like checking in with us.

billye, you can also request that anyone entering your room wear a face mask. it takes them no time to slip one on. better safe than sorry. since school just started...it's the beggining of so many people getting sick.

i carry a zip lock baggy with chlorox clean ups.

sending you lots of prayers and :hug:

sorry for the turn of events...
 

I sure hope your doctors get a handle on this quickly.

I am worried that you have a bleed somewhere in the GI tract.
Taking prednisone on top of that, worries me!

I am crossing fingers and toes for you!:hug: