Aa
What is the difference between what riba does to your HgB and what Victrelis does to it.?
I remember someone making a comment on this lately but can't remember who. I was busy at the time and didn't get to read it carefully. I know that Procrit can fix both but I it was said that the reason for the red blood cell destruction was different. If anyone knows about this, I'd like to find out.
I have a little concern about Joe's HgB when Victrelis starts. His HgB is below normal to begin with because of cirrhosis. It took a lot of Procrit to keep him on SOC for 60 weeks last time. Somewhere in the middle, he became rather resistant to the Procrit. It just stopped working as well and he ended up with a tranfusion. If it was that bad on SOC, what will Victrelis do. The PA we go to is very good. She is the one that directed us to use the Victrelis so she must think it will be OK.She never said why she was leaning us toward Victrelis and I assumed she wouldn't tell us why. I hope it is for good reasons. She said he could take Incivek but she clearly was more in favor of him going with the Victrelis.
I saw a study where L carnitine (It may have been acetyl L-carnitine?-no sure) was used to help with Procrit resistance in renal patients. I know nothing about why they become resistant to Procrit and it may have no bearing what so ever on why Joe did. It just caught my attention because I had also seen 2 small studies using L carnitine with SOC. It seems to help with fatigue and there was a few more SVR's in the group that used it. I just thought I'd keep it in mind in case the Procrit won't work well enough again.
I'm always hard at work, over analyzing things. I don't know how Joe would get along with out my micro-management. :>) :>) :>)
Ev
I have a little concern about Joe's HgB when Victrelis starts. His HgB is below normal to begin with because of cirrhosis. It took a lot of Procrit to keep him on SOC for 60 weeks last time. Somewhere in the middle, he became rather resistant to the Procrit. It just stopped working as well and he ended up with a tranfusion. If it was that bad on SOC, what will Victrelis do. The PA we go to is very good. She is the one that directed us to use the Victrelis so she must think it will be OK.She never said why she was leaning us toward Victrelis and I assumed she wouldn't tell us why. I hope it is for good reasons. She said he could take Incivek but she clearly was more in favor of him going with the Victrelis.
I saw a study where L carnitine (It may have been acetyl L-carnitine?-no sure) was used to help with Procrit resistance in renal patients. I know nothing about why they become resistant to Procrit and it may have no bearing what so ever on why Joe did. It just caught my attention because I had also seen 2 small studies using L carnitine with SOC. It seems to help with fatigue and there was a few more SVR's in the group that used it. I just thought I'd keep it in mind in case the Procrit won't work well enough again.
I'm always hard at work, over analyzing things. I don't know how Joe would get along with out my micro-management. :>) :>) :>)
Ev
indy-Thanks. It is comforting to know that other Dr's are going this way too.-Ev
Spectda and Eureka- I have most definitely seen the same phenomenon with Joe. He got on a ladder and painted most of our house towards the end of 60 plus weeks on TX. He had to move very slowly though. :>) The person that was threatening to help him work on it was a major messy painter and Joe was trying very hard to get it done with out "help" :>)
His HgB when he isn't on TX is low enough to make a person of normal health feel bad. Some kind of adjustment is happening. I'm thinking our bodies are rather wonderful in their design. -Ev
Spectda and Eureka- I have most definitely seen the same phenomenon with Joe. He got on a ladder and painted most of our house towards the end of 60 plus weeks on TX. He had to move very slowly though. :>) The person that was threatening to help him work on it was a major messy painter and Joe was trying very hard to get it done with out "help" :>)
His HgB when he isn't on TX is low enough to make a person of normal health feel bad. Some kind of adjustment is happening. I'm thinking our bodies are rather wonderful in their design. -Ev
"anemia from treatment that declines gradually and remains that way throughout a long tx (like mine did) is similar to chronic anemia and possibly the compensatory mechanisms below kick in"
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I saw that reflected during my husband's long treatment; when he first hit the low 9s during week 20, he felt like death warmed over, but after that, he seemed to adjust, even getting out and doing landscape work when his hgb hit low 7s... a few months of persistent anemia, and it seemed his body learned to cope. I always thought of it as similar to how athletes train in high altitudes... you just get used to it. Of note, my husband's been persistently anemic, in the 8s since spring, and I happened to get a copy of his chest scan today: it noted "increased density of the myocardium with respect to the blood pool, which may be seen with anemia"... it does appear the body does undergo physiological changes to compensate.
evangelin: hope that's not a hijack... much love to you and Joe!
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I saw that reflected during my husband's long treatment; when he first hit the low 9s during week 20, he felt like death warmed over, but after that, he seemed to adjust, even getting out and doing landscape work when his hgb hit low 7s... a few months of persistent anemia, and it seemed his body learned to cope. I always thought of it as similar to how athletes train in high altitudes... you just get used to it. Of note, my husband's been persistently anemic, in the 8s since spring, and I happened to get a copy of his chest scan today: it noted "increased density of the myocardium with respect to the blood pool, which may be seen with anemia"... it does appear the body does undergo physiological changes to compensate.
evangelin: hope that's not a hijack... much love to you and Joe!
My hep is also rec. Vic and Peginttron, but I think it may be for the reasons already stated: longer tx time if needed and exposure to the PI. Good luck to you and Joe; a caring family is such a source of strength.
"On a practical level, my experience has been that VIC led to an additional 2-unit HgB decline over SOC before stabilizing (11.7 to 9.6). I'll do another CBC in a week but based on informal, walk-up-a-couple-of-flights-of-stairs tests, there has been no further decline). "
My experience was that after a while I found the off the cuff HGB meter didn't work so well. I know you're the brain here, but my layman's theory is that anemia from treatment that declines gradually and remains that way throughout a long tx (like mine did) is similar to chronic anemia and possibly the compensatory mechanisms below kick in. I read this when googling HGB and transfusions wondering why I couldn't tell that my hgb was in the 7s after I had been really low for a while. Even when it went to 7.0 and they stopped tx I really didn't feel a huge difference from let's say mid 8s, but the doc thought it was time to call it a day :)
http://www.wadsworth.org/labcert/blood_tissue/redblood.htm
III. CHRONIC ANEMIA
"Patients presenting with a chronic anemia will have developed compensatory mechanisms, such as increased blood flow due to lowered viscosity and increased release of oxygen due to higher levels of 2,3-DPG. This may allow time for careful observation and a trial of erythropoietin or other therapy. In patients who do not respond, transfusion may be necessary."
My experience was that after a while I found the off the cuff HGB meter didn't work so well. I know you're the brain here, but my layman's theory is that anemia from treatment that declines gradually and remains that way throughout a long tx (like mine did) is similar to chronic anemia and possibly the compensatory mechanisms below kick in. I read this when googling HGB and transfusions wondering why I couldn't tell that my hgb was in the 7s after I had been really low for a while. Even when it went to 7.0 and they stopped tx I really didn't feel a huge difference from let's say mid 8s, but the doc thought it was time to call it a day :)
http://www.wadsworth.org/labcert/blood_tissue/redblood.htm
III. CHRONIC ANEMIA
"Patients presenting with a chronic anemia will have developed compensatory mechanisms, such as increased blood flow due to lowered viscosity and increased release of oxygen due to higher levels of 2,3-DPG. This may allow time for careful observation and a trial of erythropoietin or other therapy. In patients who do not respond, transfusion may be necessary."
I think she liked the idea that she could make his dosage a little higher with Peg-intron and we just sat there without objecting at the time because I was still stunned when she said that he should not try to wait for the next approved meds. When I went home, I started remembering what it was like when my husband took Peg-intron, and it was bad for him. He was much closer to himself mentally and emotionally, while on Pegasys. I called back and asked for it to be changed. It was the nurse I talked to that seemed very annoyed and it was probably because she is tired and overworked with all the people flooding in for the new meds...just guessing.
I do know that the Dr. that the PA works for, did a large presentation at a major liver conference for Boceprevir so no lack of knowledge going on. There could be some bias but probably not. Willing said above that he could see why Boc. might be really good for cirrhotics because you would have exposure to a PI for a longer time. The care at this clinic has been way better than the two other gastro offices we have been to in the past.
I think I just went in unprepared to make the decisions at hand and when your appointment is over, it is over. If I had gone in with a little list in case we did decide to try a PI, I wouldn't have just sat there like a cod fish.
Well, it could be that Boceprevir will work or it could be that neither PI would have worked because of substandard interferon response. We will just give it our best.
Thank you,
Ev
I do know that the Dr. that the PA works for, did a large presentation at a major liver conference for Boceprevir so no lack of knowledge going on. There could be some bias but probably not. Willing said above that he could see why Boc. might be really good for cirrhotics because you would have exposure to a PI for a longer time. The care at this clinic has been way better than the two other gastro offices we have been to in the past.
I think I just went in unprepared to make the decisions at hand and when your appointment is over, it is over. If I had gone in with a little list in case we did decide to try a PI, I wouldn't have just sat there like a cod fish.
Well, it could be that Boceprevir will work or it could be that neither PI would have worked because of substandard interferon response. We will just give it our best.
Thank you,
Ev
A bit off topic but I wonder why this PA is insisting on Merck products. Both Victrelis and Peginteron are from Merck. I suppose she may have some unstated reason for preferring Victrelis but I don't understand why she would insist on Peginteron if you have asked for pegasys. I would ask her about this bias for Merck, just to be sure you are getting what you need.
I see nothing to gain by making them shudder when they see me coming. :>) I hope I have the fine art of knowing when to speak up and when to shut up. Some days I see that more clearly than others.
Ev
Ev
Willing,
I may be on point but I can't fill it out quite the way you do. :>)
Thanks,
Ev
I may be on point but I can't fill it out quite the way you do. :>)
Thanks,
Ev
your description above seems right on point. Rbv diffuses into RBCs but remains trapped leading to early death of the RBCs ('hemolytic anemia'). Interferon, via multiple complex mechanism, shuts down pathways of rapid reproduction - hence slowing viral reproduction along with rapidly dividing cells like hair, skin and bone marrow. VIC further suppresses bone-marrow-based blood cell production. INCI can also trigger significant anemia over that experienced with SOC, though VIC generally leads to greater HgB decline.
On a practical level, my experience has been that VIC led to an additional 2-unit HgB decline over SOC before stabilizing (11.7 to 9.6). I'll do another CBC in a week but based on informal, walk-up-a-couple-of-flights-of-stairs tests, there has been no further decline).
Where complicating factors are involved (cirrhosis) the longer tx time with VIC may be an advantage towards SVR. INCI saw very high discontinuation rate when they tried longer tx time - 50% discontinuation in the Prove3 T24PR48 arm, see
http://www.ncbi.nlm.nih.gov/pubmed/21558488
so opted to cut exposure to the PI to 12w).
The milder sx but longer PI exposure with VIC seem a good choice when treating with cirrhosis.
On a practical level, my experience has been that VIC led to an additional 2-unit HgB decline over SOC before stabilizing (11.7 to 9.6). I'll do another CBC in a week but based on informal, walk-up-a-couple-of-flights-of-stairs tests, there has been no further decline).
Where complicating factors are involved (cirrhosis) the longer tx time with VIC may be an advantage towards SVR. INCI saw very high discontinuation rate when they tried longer tx time - 50% discontinuation in the Prove3 T24PR48 arm, see
http://www.ncbi.nlm.nih.gov/pubmed/21558488
so opted to cut exposure to the PI to 12w).
The milder sx but longer PI exposure with VIC seem a good choice when treating with cirrhosis.
I can certainly understand your position with regards not rocking the boat. My daughter is currently in a similar situation and I've had to resist the urge to say too much because I get to go home and she has to stay. I don't want them taking out their frustrations with me on her.
Besides, I have a very strong feeling that she'll be pronounced ready to come home right about the same time the insurance quits paying.
Besides, I have a very strong feeling that she'll be pronounced ready to come home right about the same time the insurance quits paying.
I think I found the answer. Ribavirin causes premature destruction of circulating red blood cells. Interferon suppresses bone marrow which slows down production of red blood cells. I think the Victrelis just adds to the bone marrow suppression which can also effect white cells and platelets.
Ev
Ev
I'm wondering if it was Spectda that commented on this earlier? It could have been Willing but I don't think so. I've been reading the Merck information online for Vic.but can't find my answer as of yet.
NY girl- You are right, I need one of the "smart guys" I am only smart enough to think up the questions...and I often don't really understand the answers when they arrive.
Hiking-Tom---It seems like Incivek would have been a better choice but I decided not to question the PA too much because they do lots of clinical trials and I thought she might have a reason and just doesn't want to say. Maybe it is the 4 week lead in that made her decide on Victrelis. I usually question things more but I didn't when I had a chance. I have already asked them to change from Peg-intron to Pegasys and the nurse seemed quite put out about it. I don't think I can ask now to change the PI. We have all the approvals. For better or worse, we are commited to Victrelis. We won't start for at least 2 more weeks or so.
Bali- I completely agree with what you are saying but I feel no power in this situation. Joe is on disability so he is using medicare to pay. They probably wish we'd go away. We are going to the best place available in our state. Our resources are few. I can't burn my bridge with them because there is no better place. They have been so much more aggressive in treating Joe than the gastro. we started with. The PA has always seemed like a very sharp woman that doesn't miss much and I think she always has some reason behind her decisions. (I just hope it is a pure, nonmonetarily influenced decision) The Dr. she works for is on the cutting edge. I'm just going to have to trust them. I have no other choice that I can see. If I become odious, (sp?) Joe's care may suffer. When I went to his appt., it wasn't with the thought of which PI to try. Our plan was to wait for the next round of FDA approvals. She said, "not a good idea." Joe is too close to needing a transplant for waiting. If the Sam-E TMG signaling improvements works, maybe Joe will have a better interferon response. It could happen. I'm going with that positive thought for now.
Thank you,
Ev
NY girl- You are right, I need one of the "smart guys" I am only smart enough to think up the questions...and I often don't really understand the answers when they arrive.
Hiking-Tom---It seems like Incivek would have been a better choice but I decided not to question the PA too much because they do lots of clinical trials and I thought she might have a reason and just doesn't want to say. Maybe it is the 4 week lead in that made her decide on Victrelis. I usually question things more but I didn't when I had a chance. I have already asked them to change from Peg-intron to Pegasys and the nurse seemed quite put out about it. I don't think I can ask now to change the PI. We have all the approvals. For better or worse, we are commited to Victrelis. We won't start for at least 2 more weeks or so.
Bali- I completely agree with what you are saying but I feel no power in this situation. Joe is on disability so he is using medicare to pay. They probably wish we'd go away. We are going to the best place available in our state. Our resources are few. I can't burn my bridge with them because there is no better place. They have been so much more aggressive in treating Joe than the gastro. we started with. The PA has always seemed like a very sharp woman that doesn't miss much and I think she always has some reason behind her decisions. (I just hope it is a pure, nonmonetarily influenced decision) The Dr. she works for is on the cutting edge. I'm just going to have to trust them. I have no other choice that I can see. If I become odious, (sp?) Joe's care may suffer. When I went to his appt., it wasn't with the thought of which PI to try. Our plan was to wait for the next round of FDA approvals. She said, "not a good idea." Joe is too close to needing a transplant for waiting. If the Sam-E TMG signaling improvements works, maybe Joe will have a better interferon response. It could happen. I'm going with that positive thought for now.
Thank you,
Ev
"The PA we go to is very good. She is the one that directed us to use the Victrelis so she must think it will be OK.She never said why she was leaning us toward Victrelis and I assumed she wouldn't tell us why"
I would not assume anything. If they recommend one medicine over another they need to give you an explanation. Especially in this case.
I would not assume anything. If they recommend one medicine over another they need to give you an explanation. Especially in this case.
I'm sorry I dont know why the blood cells are destroyed in either case this is something for one of the smart guys - it's way over my head.
From everything I have read Victrelis is more problematic for anemia than Incivek.
I'm taking Incivek, and that was one of the deciding factors. Plus, the course of treatment is 12 weeks instead of 24 - a big plus in my book.
I'm taking Incivek, and that was one of the deciding factors. Plus, the course of treatment is 12 weeks instead of 24 - a big plus in my book.
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