Aa
Good News!
Today my son took me to the hematologist in Huntsville and we found out that my hemaglobin is 12.1.
This is REALLY significant because it means that for the first time since 10-5 of last year, my body has increased in blood count without a transfusion. Prior to this, I have had no increase in red blood cell counts despite 80,000 units of epogen weekly. I would go in and get blood and then my hemaglobin would do nothing but decline until about 10 - 14 days later when finally, at a hemaglobin between 7 - 8, I would have to check back into the hospital to get another transfusion. The one time I'd thought I had an increase before, the machine at the doctor's office was broken.
But todays blood count was done at the hospital so it's a good count. And I have felt better this week, I've been up more often and able to do things. I did reduce my ribavirin but not much. I have been trading off. One night I'll do 800mg, another I'll do 600. Then I'll do 800, then 600. Then 800 twice in a row, then 600. So I do about four nights of 800 and three nights of 600 every week (well, not nights, I do one or two capsules in the morning and the rest at night).
Between this, and the amount of time I've been in the hospital, I've realized that I am going to be long on ribavirin by the time I finish treatment. So when that time comes I'll be able to help someone else out.
This is REALLY significant because it means that for the first time since 10-5 of last year, my body has increased in blood count without a transfusion. Prior to this, I have had no increase in red blood cell counts despite 80,000 units of epogen weekly. I would go in and get blood and then my hemaglobin would do nothing but decline until about 10 - 14 days later when finally, at a hemaglobin between 7 - 8, I would have to check back into the hospital to get another transfusion. The one time I'd thought I had an increase before, the machine at the doctor's office was broken.
But todays blood count was done at the hospital so it's a good count. And I have felt better this week, I've been up more often and able to do things. I did reduce my ribavirin but not much. I have been trading off. One night I'll do 800mg, another I'll do 600. Then I'll do 800, then 600. Then 800 twice in a row, then 600. So I do about four nights of 800 and three nights of 600 every week (well, not nights, I do one or two capsules in the morning and the rest at night).
Between this, and the amount of time I've been in the hospital, I've realized that I am going to be long on ribavirin by the time I finish treatment. So when that time comes I'll be able to help someone else out.
You already know so much about tx that you help a huge amount of people out. Congrats on the 12! Geez, I never got that on tx! Good for you! I hope it stays that way. Once I hit 11, I seemed to stay there and didn't have to get that shot. Same with the Neupogen...I would stay at a reasonable ANC for a while, then go down. Hope you have lots of weeks with good blood counts!!! Otherwise, hide when it comes to that Neupogen. LOL
WOW that is just GREAT! I tell you I was on 80,000 epo and it made me go way too high (into the 16s) so your body REALLY was having some trouble with those reds huh? How fantastic that you have such a marvelous number!
No more transfusions!
No more transfusions!
With all the health problems you've had, I'm glad to see you getting some good news for a change! I hope this continues and that your need for transfusions diminishes and disappears. Good luck to you ongoing.
Trish
Trish
To the pills/capsules again -- I think it's evident that what people react to is the dosage of riba and not the way it's packaged.
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Ala - if you see this post early, please let me know the brand name of the capsules.
Jim,,,,
I disagree the package is important too,,,here's an example,,,some people because of the intrinsic factor cannot absorb vitamin B12 and for that reason they become anemic.
So if some can have a problem with absorption of B12, why can some have trouble absorbing other things. Someone who cuts their meat and veggies into small pieces and chews slowly will definitely absorb the meal much better than someone who eats like a caveman and rips big pieces and swallows it practically whole,,,,well to me, solid forms of meds are same as eating food whole - not for everyone, some people may have the type of stomach that breaks down food very well, especially someone like you - possibly due to you acid reflux - the acid may help you to digest things well -though acid reflux can cause other problems. Well you know me - I tend to 'over think - over analylze' things lol. But many times I hit on something.
So anyhow, I may eat something and not absorb as much as you or visa versa. I mean really - take for instance corn - if you have ever taken a look, corn does not break down at all.
Here's another example, most vitamins do have niacin in it, but for us, niacin is not really good, but I take it anyhow cause the vitamins have very little,,,so anyhow what happened is I bought a different brand of vitamins - liquid - organic,,,,,same amount of niacin as in the capsule form I was taking,,,,well I took the 2 tablespoons and about 15 minutes later I got a wicked - I mean really powerful 'peripherial (sp) flush - in case your not familiar - niacin causes that,,,,,BUT I never get a peripherial flush from the capsule a form of vitamins anymore nor did I 'ever' get it from the solid vitamins when I used to take them.
But anyhow my dog woke me up on a morning I felt like sleeping, but I don't care she woke me up cause I made the best pot of coffee I have ever made in my life, it tastes so great,,,can't wait to pour another cup,,,,soooooo gooood,,yummie, yummmie.
seeya,,,
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Ala - if you see this post early, please let me know the brand name of the capsules.
Jim,,,,
I disagree the package is important too,,,here's an example,,,some people because of the intrinsic factor cannot absorb vitamin B12 and for that reason they become anemic.
So if some can have a problem with absorption of B12, why can some have trouble absorbing other things. Someone who cuts their meat and veggies into small pieces and chews slowly will definitely absorb the meal much better than someone who eats like a caveman and rips big pieces and swallows it practically whole,,,,well to me, solid forms of meds are same as eating food whole - not for everyone, some people may have the type of stomach that breaks down food very well, especially someone like you - possibly due to you acid reflux - the acid may help you to digest things well -though acid reflux can cause other problems. Well you know me - I tend to 'over think - over analylze' things lol. But many times I hit on something.
So anyhow, I may eat something and not absorb as much as you or visa versa. I mean really - take for instance corn - if you have ever taken a look, corn does not break down at all.
Here's another example, most vitamins do have niacin in it, but for us, niacin is not really good, but I take it anyhow cause the vitamins have very little,,,so anyhow what happened is I bought a different brand of vitamins - liquid - organic,,,,,same amount of niacin as in the capsule form I was taking,,,,well I took the 2 tablespoons and about 15 minutes later I got a wicked - I mean really powerful 'peripherial (sp) flush - in case your not familiar - niacin causes that,,,,,BUT I never get a peripherial flush from the capsule a form of vitamins anymore nor did I 'ever' get it from the solid vitamins when I used to take them.
But anyhow my dog woke me up on a morning I felt like sleeping, but I don't care she woke me up cause I made the best pot of coffee I have ever made in my life, it tastes so great,,,can't wait to pour another cup,,,,soooooo gooood,,yummie, yummmie.
seeya,,,
Good advice, but I started txing the first time in 1999, have never seen the pills, I thought i had done it all! lol
My point was if you can't swallow the pills (many can't) then to crush them. or cut them.
My point was if you can't swallow the pills (many can't) then to crush them. or cut them.
Forgot to congratulate you on your hematologist's visit. To the pills/capsules again -- I think it's evident that what people react to is the dosage of riba and not the way it's packaged. Your mentioned reduction in riba is no doubt why your hemoglobin stopped heading South.
The Roche brand (makers of Pegasys) is called "Copegus" and it comes in tiny little pills, each pill is 200mg. Trust me, there is absolutely no problem absorbing the pills as many, including myself, can attest -- so no need to crush them -- and in fact, always check with a pharmacist before crushing any drug because some shouldn't be.
I'm guessing that the capsules are one of the newer generics. When I started treating amost 3 years ago, most everyone was on either Copegus or Rebotol, which is manufactured by Shering who also makes PegIntron.
I'm guessing that the capsules are one of the newer generics. When I started treating amost 3 years ago, most everyone was on either Copegus or Rebotol, which is manufactured by Shering who also makes PegIntron.
You know I liked that you said going through all this will help you one day help someone else. Sometimes I feel sort of like a guniea pig, with all this. Then realize it is worth it.
You have a lot of courage my friend! luv ya
Deb
You have a lot of courage my friend! luv ya
Deb
caps do absorb faster. than pills. Crush them if you can't get capsules.
I never heard of riba in pill form either...
I never heard of riba in pill form either...
No it doesn't. I would have loved capsules - for absorption reasons. I had the little pills last year (Copegus) and this year they sent these HUGE HORSE pills (well last year too but I sent those back also) and anyway IF I took these HUGE HORSE pills I would probably be getting 600 mgs rather than a 1000mgs I bet. I don't care what doc or person would disagree,,,,,I don't take solid vitamin tablets FOR THAT REASON. I have seen solid pieces of undlsolved vitamins in my stool and thats all I had to see before I started taking capsules and some liquid when available.
Yes I bet it you had solid riba your anemia wouldn't be as bad - my opinion, nothing factual.
Oh I wish I had capsules!! What is the name of your brand and is it 200 mg each? Maybe I have time to call in and change it again. Or maybe I should just chew the Copegus.
MO
Yes I bet it you had solid riba your anemia wouldn't be as bad - my opinion, nothing factual.
Oh I wish I had capsules!! What is the name of your brand and is it 200 mg each? Maybe I have time to call in and change it again. Or maybe I should just chew the Copegus.
MO
mo - yeah, yours doesn't? hmmm... well this is certainly new and interesting info. I'd never even thought there might be a different format. maybe that's why I'm having such bad hemolysis. Mine comes in white capsules with black printing on them.
somebody needs to post a thread on this - ask everyone what their riba has looked like on various trreatments they've done and see if it's had anything to do with absorption and/or clearing/anemia etc. Would be interesting to find out just on an anecdotal basis here if there seems to be any correlation between one form or the other and 1) more anemia and/or 2) rvr
Believe it or not, I'm nicer on treatment just because I'm so much more tired. So you guys can only imagine what I'm like normally.
all - thanks for the well wishes
Irish - we're from texas too actually, moved here from texas at the end of 2000 (austin)
somebody needs to post a thread on this - ask everyone what their riba has looked like on various trreatments they've done and see if it's had anything to do with absorption and/or clearing/anemia etc. Would be interesting to find out just on an anecdotal basis here if there seems to be any correlation between one form or the other and 1) more anemia and/or 2) rvr
Believe it or not, I'm nicer on treatment just because I'm so much more tired. So you guys can only imagine what I'm like normally.
all - thanks for the well wishes
Irish - we're from texas too actually, moved here from texas at the end of 2000 (austin)
What totally awesome news my friend!
I am so chuffed for you!
Hugs ya and does happy dance with you.
Deb
I am so chuffed for you!
Hugs ya and does happy dance with you.
Deb
Glad to hear!!
Ala, you said 'capsules",,,,,,,your riba comes in Capsules? Cause I asked that one time- I said, why doesn't the riba come in capsules for better absorption?"
So anyhow, do you have CAPSULES? I would have wanted them if I could have gotten them. I can't drive them crazy, I just exchanged my riba horse pills. I'm not one of those pains that exchange at dept stores either - this is just with riba.
Liquid riba if they could make it - would be the best,,,,better yet, injectable riba!
Imagine injecting riba? Instant riba rage. lol
Ala, you said 'capsules",,,,,,,your riba comes in Capsules? Cause I asked that one time- I said, why doesn't the riba come in capsules for better absorption?"
So anyhow, do you have CAPSULES? I would have wanted them if I could have gotten them. I can't drive them crazy, I just exchanged my riba horse pills. I'm not one of those pains that exchange at dept stores either - this is just with riba.
Liquid riba if they could make it - would be the best,,,,better yet, injectable riba!
Imagine injecting riba? Instant riba rage. lol
Congrats!!! So glad to hear your feeling better.
Hope you stay in the upswing!!
Happy Valentine's Day!!!
Is that Huntsville TX or....?
Hope you stay in the upswing!!
Happy Valentine's Day!!!
Is that Huntsville TX or....?
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