Oh Nikki. Yep. Know the feeling well. I feel for you, sweetie. My dr is the same way, took me to week 30 before I could get procrit.
The best advice I can give is to rest as much as you can. Make sure you drink your water. And just try to hold on. Your body will start to adjust in a few weeks.
Has he checked your TSH levels yet? If your thyroid is decompensating that will cause some of those problems too.
Good luck. Valorie
Your symptoms sound like classic anemia. Your hemoglobin can drop very quickly so you may be worse off than your latest numbers indicate. I dropped 5 full points before I got Procrit (happened around week 6 for me). The amount that you drop is almost as important as the hemoglobin level itself--in terms of the way you feel.
I ended up in the ER before I got Procrit. It is your right to keep calling your doctor's office and telling them how severe things are and how they are getting worse. Do not minimize your symptoms at all when you talk with them.
If you faint or feel chest pain--get someone to drive you to the ER or to your doctor's office.
Take care. The anemia was the hardest part for me. You won't believe how much easier TX seems when you are no longer anemic. Also, remember that it takes a minimum of 2 weeks for the Procrit to kick in. Best to you, Deb
We know how you feel, believe me. I dropped 6 points from 15+ to 9 in just over a week and it destroyed my body which could really not handle the sudden reduction in oxygen.
Make sure you take it as easy as possible - it used to take me ten minutes just to make the 50 yard walk into my building here at work...but I went slowly and steadily and eventually at least did make it.
It does stink that they don't prescribe earlier = I don't really understand WHY I don't think anybody really does except the medication is EXTREMLEY EXTREMELY EXPENSIVE.
Hang in there it's not easy but you CAN do it.
When I got down to 9 I kept fainting when I would try and stand up...be careful on stairs and driving and things - fainting is the oddest thing I've ever gone through, painful unpleasant and dangerous!
Last night my son told me about a tv piece that he saw about'fainitng goats'. I thought about you and your fainting when he described it. I had read about them before, when startled they go stiff and fall over. No real point to this other than they are usually good parents and provide excellent cashmere. I wonder if procrit...Nah, probably a baaaaaad idea.
My that's a hefty drop in a few weeks. I can see why you are dragging - a 6-point drop is just too much to handle. As it probably won't get any better, perhaps you could discuss exactly when you can begin Procrit -- I really don't think you can wait until you are at 9. I suggest keeping a diary of any symptoms -- shortness of breath, dizzyness, any chest pains or palpatiations, inability to do simple tasks you normally can do, paleness. You might google anemia to check on the symptoms. You might also call the insurance company to see if they will cover it and when.
I started Procrit when I dipped into the 10's because I asked for it. Otherwise they would have waited. You have to make your case clear that your quality of life is impaired. Ask for a referral to a hemotologist (blood specialist) if you have to.
MrsO -- I have been reading on some of the threads and it sounds like a really rough go right now. I am sorry it is so hard right now. It took you 30 weeks to get PRocrit? What was the reason it took so long. WIth 40% of hep C treaters getting anemia, I don't understand why the med profession is not on top of this.
Make an appointment with a hematologist and bring your baseline blood test with you. They are more generous with the Procrit.
Sorry your having the problem. A number of things can cause it but with me it was just the drugs/meds. I can remember taking a shower and having to sit before I could dry off for fear of running out of air. Mine is somewhat better now but I dare not push it to much or I'll pay the penalty for a few days. I've never had to intentionally slow down or pamper myself but I am learning that to much physical activity and boom. No air and muscle aches to boot. I hope you get to feeling better soon. See that doctor. Dale
I can really say I'm perkier today than I have been for quite awhile.
My HGB dropped from 15.5 to 11 during week 2 thru week 30. At week 30 it was 10.5. At that point he prescribed it for me. It took a couple weeks for the ins to okay it.
I wish I knew why 10 is the magic number. I was already feeling so bad from the 11 thru tx that the .5 drop didn't make me feel any worse.
The sad part is that in talking to my ins co they would have okayed it months ago at 11. It was the dr that wouldn't write the scrip till it hit 10.
my test scores show 14 - 18 is normal but even with normal hgb and fair rbc wbc counts the severe fatigue was still there. it is a side most of us have according to my info. from peg sheets.
my sun sensitivity is getting better but not gone. i hate sitting at home when the world is at the lake. i went jogging today but looked like the guy in spy vs. spy.
my fatigue was much much better only days after the lst shot.halleluaea
thanks for asking.
Reference ranges for "normal" on my Quest results paperwork for HGB are 11.5-15.5
I wonder why they aren't the same number ranges for normal, I didn't know "normal" range is varied even from the same lab, but maybe it is a different range for each gender?
"Normal" maybe but not correct. Many prescribe Procrit (epo) not simply based on absolute numbers but on rate of Hemoglobin (hgb) drop, i.e. a significant drop in hgb over a short period of time. On this basis, you appear to qualify for Procrit in Spades. I went on Procrit at hgb 11.4 due to close to a three-point drop over a period of a couple of weeks early-on in treatment. Can't put my finger on it now but there are directives/studies out there on this in black and white. Personally, I'd press your doctor on this issue and get a second opinion if you're unsatisfied with his answers or response. All the best.
Yes, I hear you. Even if you fall in the "normal" range you can still be experiencing debilitating symptoms of anemia. I have struggled with it too but never fell into the range they felt required medical intervention with support drugs. It sure puts a kink in your QOL.
Glad to hear it is slowly going away. Skin conditions can be a real pain to deal with as you know and summer makes it that much harder to cope with. I hope it resolves completely soon so your fun in the sun can continue.
Your spy vs spy reference made me laugh, got a great image of that one.
I just thought the "normal" range numbers would be the same on everyone's results but apparently they aren't, I wonder if the ranges are different depending on gender, I can't figure what other reason there would be for them to vary like that.
As you sated above, normal for men and women is different and that's why your range is lower. Mike
Saw a hemo/oncologist yesterday for my 9.1 rbc. Gave me a shot of Procrit and said he wanted to see my neutraphil count before giving me Neupogen. He said that under 1000 was the number. My major complaint is of shortness of breath; difficulty with stairs. The forgetfullness is now in full swing -- kind of fun, actually, not remembering that I forget to do something. It's always a surprise to hear who answers the phone number that I forgot I dialed!
He recommended that I lay off tx for about two weeks until I get stronger, but, of course, will defer to my gastro. His thought is that by toughing it out I will encounter even worse sx's. He also said that Interferon is worse than chemo. Tomorrow will be 16/24. I'm waiting to hear from my gastro., but am keeping in mind everyone's advice to not interrupt tx if at all possible.
BTW -- my hands have been arthritic and tingling the last week and a half; the Procrit SEEMs to have allieved that overnight -- OR it's just a coincidence.
this is confusing - The sheet I have shows normal Hgb (Hemoglobin) range at 14-18 g/dl. No mention of gender.
The title is Liver function test: defining what's normal
If various counts are gender based does anyone have reference information? Dale
As Mike suggests, men need more hgb than women to stay in the pink. Makes one wonder why they don't give us some of theirs? I believe men also have a more sides on average to a sudden hgb drop then women. So who says we're less sensitive?
unfortunately i had the same problems all throught tx. and my hgb was 12-13 the whole time. i would talk on the phone and have to sit down. now after only 2 days post tx it has gone. i just jogged 1 mile when i could not walk 1/4 mile on tx. keep an eye on your blood work but this is normal. the sides are better some weeks than others. my rbc and rbc were both very low also.
it's not just how far down you go but how FAST you go down as well - since it took that long for you to drop that's why they didn't prescribe for so long I'd imagine.
If you had had all of the drop in 4 weeks it would have helped you out getting the script I am sure.
Doctors dont tend to take it as seriously with hep patients believe me if you had cancer he proobably would have given it to you.
Now that I've been ON procrit for like 35 weeks my number is between 10.5 - 11 constantly and I have NO problems. Your body DOES acclimate to the lesser amounts of oxygen eventually somehow.
But nobody should have to really.
I think with men, a 12 13 reading is still very low. I was told women's Hgb is generally lower than men's so a 12 reading in a man is a struggle but a 12 in a woman is not as bad as for a man.
Are you having any improvement with the rash and the problems from the sun? I hope they are easing up for you. Is your energy improving since you finished tx?
Quest hemoglobin normal range is 13.2 - 17.1. Mike
I'm assuming Mike uses Quest labs. My Quest report has the exact same hgb range 13.2-17.1
Maybe someone of the fairer sex who uses Quest labs would post the normal range from their lab report.
Now if I were a conspiracy theorist, I'd say this is a case where female run drug companies are denying men their Procrit by establishing similar standards when indeed men need their hemoglobin at higher hgb levels. The females do run the drug companies, don't they?
I would guess that different labs have different reference ranges. Quest's ranges are slightly different than are my transplant center's. There is no mention of gender on my labs except for patient information where it gives my age and gender. That dictates the reference ranges appearing on my labs. Mike
Although not so funny, several people with anemia have reported ringing in the ears. So in addition to not remembering who you dialed you may be in for answering a phone when no one is there at all. As for the forgetfulness, you could go thru tx reading the same book or watching the same movie over and over and it's still new to you.
Once, I was ready to go out the door for work and wondered if I remembered to shower. The tip-off was that my hair was still wet and uncombed. Duh.