Aa
Really Low RBC's update
Hello, Friends,
After 1 week without ribavirin, I'm back up to Hgb 8.5 as of yesterday. My iron levels were checked, and indeed I have depleted my iron reserves; I am to start 325 mg iron supplement am and pm. Lesson here: Procrit may eventually need iron supplementation to work, so your iron levelsshould be checked if the Procrit stops or isn't working.
My next check is on Mon.8/18. Hope to resume riba next Monday... maybe gradually increasing dose back up to "normal".
My white counts are in good shape now, so I am dropping down 25% from my current 300 mcg 2x/wk Neupogen.
Thanks for all your responses, suggestions, and expressions of concern.
After a week without Ribavirin my mind seems sharper, but other sides have not changed.
As always, forward we go. Thanks for all the songs this week!
Best to all,
Maj Neni
After 1 week without ribavirin, I'm back up to Hgb 8.5 as of yesterday. My iron levels were checked, and indeed I have depleted my iron reserves; I am to start 325 mg iron supplement am and pm. Lesson here: Procrit may eventually need iron supplementation to work, so your iron levelsshould be checked if the Procrit stops or isn't working.
My next check is on Mon.8/18. Hope to resume riba next Monday... maybe gradually increasing dose back up to "normal".
My white counts are in good shape now, so I am dropping down 25% from my current 300 mcg 2x/wk Neupogen.
Thanks for all your responses, suggestions, and expressions of concern.
After a week without Ribavirin my mind seems sharper, but other sides have not changed.
As always, forward we go. Thanks for all the songs this week!
Best to all,
Maj Neni
I am doing great and so very busy at work, that is why I'm not on the boards that much. I do pop in and read to try and keep up and see how everone is doing. Thank God this was not last year - I wouldn't know what I would have done. All my count came up to normal in about 1 month after tx and I felt back to normal in six months. You hang in, your counts will come back up with eating all those nails. Hope the sides are not to bad for you, and you should be having a pcr done soon? I wish you the very best, you a great person. Take care and blessings.
Carol
Carol
Thanks, CC2.
Hopefully we've got the anemia under control now, and I can go back into the riba-world. I can't do beets (and spinach and other dark green and red iron rich foods) because they also have oxalic acid, and they contribute to kidney stones... another past pleasure. So I'm getting iron pills and chewing on rusty nails... well, taking pills, anyway.
I'm always glad to read that you're continuing to stay well! You deserve it. How are things at your job?
Best,
Maj Neni
Hopefully we've got the anemia under control now, and I can go back into the riba-world. I can't do beets (and spinach and other dark green and red iron rich foods) because they also have oxalic acid, and they contribute to kidney stones... another past pleasure. So I'm getting iron pills and chewing on rusty nails... well, taking pills, anyway.
I'm always glad to read that you're continuing to stay well! You deserve it. How are things at your job?
Best,
Maj Neni
there's is lots of food that have iron in that will help. I ate all I could when I was on tx and my counts were very low. Red beets (ug.. but I ate them) are really high and add some beef into your diet.
I'm glad you have this thing headed in the right direction. Sounds like the little riba-vacation is to your liking. I was beginning to imagine several of us following you around ready to catch you should you pass out and fall (just projecting what you might feel like based on my own occasional lightheadedness).
Hello, Friends.
Thanks for all your messages.
Landfill, welcome, and I'm really glad that you went undetectable even with the reduced Riba for 16 weeks! That is most reassuring.
You know how a houseplant looks when you come back from vacation and you water it, and it gradually gets its color and shape back? That's me.
Getting OTC iron was a educational:
none of the formulations said 325 mg, and my dose was to be
"325 mg 2x/day".
From past experience, I knew I needed Ferrous Gluconate instead of Ferrous Sulfate. Ferrous Sulfate is the usual form of iron in supplements, including multivitamins; and in an earlier life, the latter was VERY rough on my system.
Fergon is the only major brand of Ferrous Gluconate - some stores have store brands. It has 27 mg of elemental iron per tab. Since I couln't imagine taking 24 iron pills a day, I played telephone tag today.
Findings: recently the labeling rules have changed, and I guess the doc was learning this one with me. A "325 mg capsule of Ferrous Sulfate" actually has about 60 mg of elemental iron, and the dosing has to go according to that. So for me, the approximate equivalent is 4 Fergons a day.
Thanks again!
Maj Neni
Thanks for all your messages.
Landfill, welcome, and I'm really glad that you went undetectable even with the reduced Riba for 16 weeks! That is most reassuring.
You know how a houseplant looks when you come back from vacation and you water it, and it gradually gets its color and shape back? That's me.
Getting OTC iron was a educational:
none of the formulations said 325 mg, and my dose was to be
"325 mg 2x/day".
From past experience, I knew I needed Ferrous Gluconate instead of Ferrous Sulfate. Ferrous Sulfate is the usual form of iron in supplements, including multivitamins; and in an earlier life, the latter was VERY rough on my system.
Fergon is the only major brand of Ferrous Gluconate - some stores have store brands. It has 27 mg of elemental iron per tab. Since I couln't imagine taking 24 iron pills a day, I played telephone tag today.
Findings: recently the labeling rules have changed, and I guess the doc was learning this one with me. A "325 mg capsule of Ferrous Sulfate" actually has about 60 mg of elemental iron, and the dosing has to go according to that. So for me, the approximate equivalent is 4 Fergons a day.
Thanks again!
Maj Neni
It's good to know what the problem is. I know men are different but I can't imagine a hemoglobin that low. Mine has been in the 10s and I am so beat. At one point last tx my surgeon had me on iron and folic acid but after an iron test it was determined that this wasn't the solution. I sure hope you get some benefit from the supplementation. I know how much better we feel when we stop the ribavirin. That drug is tough. Good luck Maj. Mike
Your hgb story is interesting because I had a sharp drop at 4 weeks. Here's some history:
Male, 60 years old, 220 lbs, 1a, RNA 400,000 IU/ml (before tx) inflamation 1, fibrosis 0, infected in 1972 by transfusion, no alcohol since 1969. Here's how my tx went (peg + Rebetol):
start - hgb 15.8, riba 1200 mg
week 4 - hgb 10.3, riba reduced to 800 mg, RNA 2,500 IU/ml (2-Log drop)
Dr. said my hgb drop was unusual (< 10% of patients). His guess is that my kidneys weren't getting rid of the riba as fast as they should. No kidney disease evident. He says that old kidneys aren't as efficient as young ones. There's no cheap test for blood riba level. Research labs can measure it at high price but my insurance won't pay.
week 6 - start 40,000 U/wk Procrit
week 14 - hgb 14, increase riba to 1000 mg, RNA < 1600
week 18 - hgb 15, RNA neg
week 20 - increase riba to 1200 mg
week 28 - hgb 14, RNA neg
48 week tx ended 2 weeks ago. I'll get RNA measured in 2 weeks. I asked Dr. if reducing riba jeopardized outcome. He said probably not. Researchers think that if you can get 85% of the total recommended riba over the course of tx, the outcome is about the same as 100%. Relapse becomes more common with less riba.
I look at this group but haven't posted before. Greetings everybody.
Male, 60 years old, 220 lbs, 1a, RNA 400,000 IU/ml (before tx) inflamation 1, fibrosis 0, infected in 1972 by transfusion, no alcohol since 1969. Here's how my tx went (peg + Rebetol):
start - hgb 15.8, riba 1200 mg
week 4 - hgb 10.3, riba reduced to 800 mg, RNA 2,500 IU/ml (2-Log drop)
Dr. said my hgb drop was unusual (< 10% of patients). His guess is that my kidneys weren't getting rid of the riba as fast as they should. No kidney disease evident. He says that old kidneys aren't as efficient as young ones. There's no cheap test for blood riba level. Research labs can measure it at high price but my insurance won't pay.
week 6 - start 40,000 U/wk Procrit
week 14 - hgb 14, increase riba to 1000 mg, RNA < 1600
week 18 - hgb 15, RNA neg
week 20 - increase riba to 1200 mg
week 28 - hgb 14, RNA neg
48 week tx ended 2 weeks ago. I'll get RNA measured in 2 weeks. I asked Dr. if reducing riba jeopardized outcome. He said probably not. Researchers think that if you can get 85% of the total recommended riba over the course of tx, the outcome is about the same as 100%. Relapse becomes more common with less riba.
I look at this group but haven't posted before. Greetings everybody.
Good to hear from a lurker! We know you all are out there wish you'd chime in more often!
Greetings. Let us know the results of your RNA test in a couple of weeks. Wishing you the best. Cheryl
Glad to hear your numbers are leveling out. This whole iron issue confuses me. I guess there is a difference between iron storage and iron in your blood? My pre-tx bloodwork showed my iron levels were low (49)and the doctor told me that was a better situation for tx success. The GI PA in the office told me I should take a multi vitamin WITH iron because I need the iron (after the doctor told me to take a multi WITHOUT iron). OK, so now I'm confused. I see the doctor this Thursday for results of my 12 week PCR, so I will discuss this with him then.
Hang in There
ambush :)
Hang in There
ambush :)
Eat LOTSA spinach. Not only will it help with that Iron problem, but you'll also be able to kick that Badgers ass.
Hahahahahahahaha
I really do think that getting your iron from iron rich foods is MUCH better for you. Just don't start eating nails to get a quick start..........
Hahahahahahahaha
I really do think that getting your iron from iron rich foods is MUCH better for you. Just don't start eating nails to get a quick start..........
I'm sorry you aren't feeling any better, but glad to hear your count is up. I'm praying you can get back on full dose.
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