Aa
Last shot this Friday, decided to end tx in 24 weeks
Dear All
After a long discussion with my two docs, finally i have decided to end my tx at 24 weeks and pray to God for SVR.
I was geno 3, dx in 2002, tx in 2008 , VL at start of tx 272,200 iu/ml, U/s & Biopsy showed no significant demage to liver, was on standard interferone ( Non-peg) thrice a week + 1200 mg riba daily ( weight was 82kg at start of tx).
problem started when my doc disserviced me by not checking PCR at week 4 and 12 , my first qualitative PCR done at week 16 which shows UND. I had very manageable infact very low sx throughout the tx untill week 18-19, after that situation becoming really bad, now in week 23 & 24 after shot i feel like i am hit by a truck, i fell so COLD that i cant even sleep at nights , hair loss almost 40-50%, constant cramps etc, nails somewhat feeling yellow ( for the first time in life, never had before or during tx).
After disusiing with many people on this forum, now i with consultation of my doc ( who always insisted on 24 week tx) decided to end my tx this friday. Pls tell me what my current condition predict??? is my disease returning ????
Any suggestions are welcomed
After a long discussion with my two docs, finally i have decided to end my tx at 24 weeks and pray to God for SVR.
I was geno 3, dx in 2002, tx in 2008 , VL at start of tx 272,200 iu/ml, U/s & Biopsy showed no significant demage to liver, was on standard interferone ( Non-peg) thrice a week + 1200 mg riba daily ( weight was 82kg at start of tx).
problem started when my doc disserviced me by not checking PCR at week 4 and 12 , my first qualitative PCR done at week 16 which shows UND. I had very manageable infact very low sx throughout the tx untill week 18-19, after that situation becoming really bad, now in week 23 & 24 after shot i feel like i am hit by a truck, i fell so COLD that i cant even sleep at nights , hair loss almost 40-50%, constant cramps etc, nails somewhat feeling yellow ( for the first time in life, never had before or during tx).
After disusiing with many people on this forum, now i with consultation of my doc ( who always insisted on 24 week tx) decided to end my tx this friday. Pls tell me what my current condition predict??? is my disease returning ????
Any suggestions are welcomed
OK, I'll give you an opinion but it is only that, an opinion.
Today you and feeling energetic, but you have had some really hard times with the tx.
The trouble is, there no correlary between how good or bad you feel on tx and whether you SVR. Some people have it very easy, and clear easily, tohers do not. Some people have a hard time, but clear at the same or higher rates. I think this is because they perhaps had a higher concentration of drugs for their weight. There have been studies showing the more absoption the better the clearance, but the down side is too much of either drug can do harm to liver and kidneys.
this has to be your decision, between you and God. The thing that would weigh heavily on me would be not having any PCR ubtil month 4. This means you may have had an early clearance (especially with a low VL and yet you don't know.
On the other hand, your body may have had trouble clearing the virus and you may have not gone under until week 12, or even week 15. In which case the extra weeks (possibly only 8 actually UND) would not give you the best chances.
there is already discussion amongst doctors as to whether 24 weeks is really adequate for type 3's anyway, given that cure rates are much higher at 36 weeks we expect this protocol to change in the not too distant future unless the newer drugs coming make it a moot argument.
Let me point out that in a recent study of 366 type 1b patients that the late and super late responders all SVR'd at astounding rates when they treated further out after going UND. In that study even the Super late responders (once given 3% chance of SVR only) all SVR with extended tx. So their rate was 100% clearance.
That means think carefully, this has already cost you in terms of time and health and money. If you treated even one, or pssibly 2 months now, you would give yourself a lot more of a chance to stay clear than if you end now. So one or two months now could save you another round of treatment later, and another 6 or 8 months. What will that cost and what toll would it take? And will they even allow that where you are?
So I guess what I'm saying is, if there were a way you could manage to hang in there for longer now, it might be worth it's weight in gold. And remember, the duration of treatment is to give the drugs time to kill or mutate all the virus whereever it is hiding. The virus in the blood is most vunerable, but virus in the tissues can linger much longer, and survive much longer before the drugs finally get to them. Many times shorter treatments have been tried. At one time, they even tried "pulsing" the drugs, meaning once the person went UND they would cut the doses way back, and only increase them when the VL began to reemerge. The result was NO ONE succeeded in SVR. The truth is with the current SOC the way the virus is done in is to hit the thing long and hard, with no let up. That's the nub of it.
Considering then that for every month of extra tx the rates of SVR went up several percentage points, usually double digits per month, I would have to say if I were in your boat I would try my hardest to stick with tx a little longer.
Maybe I'm the only one in here really qualified to say this since I'm in the same basic boat, only worse. I do not know if I went UND at 13 wks or at 25. Because there was a 3 month gap my doctor has agreed to extend my tx beyond 72 wks. (we don't know yet if the insurance will agree.
My last PCR was only 50,000 so I may have been under by 13 or 14, but I'll never know.
What he suggested is we "split the difference". We will assume I went under half way between the 12 and the 26 week PCRS...and so rather than treat 72 I will try to make it to 85 to be on the safe side.
Try to understand why the thinking on type genotype 3 is to only treat for 6 months: it is because it is a weaker form of the virus and usually folks go UND fairly rapidly. However, there are always exceptions to that, and this may be what accounts for the 20% that don't clear. If they went UND later, they need to treat longer, That is what several new studies have shown is important independant of what Genotype a person may be. The new studies show time treated after going UND is a high determinent of outcome.
I can send you an example of this if you so desire.
Whatever you decide, you have our support, and our prayers that your doctor will help you.
mb
Today you and feeling energetic, but you have had some really hard times with the tx.
The trouble is, there no correlary between how good or bad you feel on tx and whether you SVR. Some people have it very easy, and clear easily, tohers do not. Some people have a hard time, but clear at the same or higher rates. I think this is because they perhaps had a higher concentration of drugs for their weight. There have been studies showing the more absoption the better the clearance, but the down side is too much of either drug can do harm to liver and kidneys.
this has to be your decision, between you and God. The thing that would weigh heavily on me would be not having any PCR ubtil month 4. This means you may have had an early clearance (especially with a low VL and yet you don't know.
On the other hand, your body may have had trouble clearing the virus and you may have not gone under until week 12, or even week 15. In which case the extra weeks (possibly only 8 actually UND) would not give you the best chances.
there is already discussion amongst doctors as to whether 24 weeks is really adequate for type 3's anyway, given that cure rates are much higher at 36 weeks we expect this protocol to change in the not too distant future unless the newer drugs coming make it a moot argument.
Let me point out that in a recent study of 366 type 1b patients that the late and super late responders all SVR'd at astounding rates when they treated further out after going UND. In that study even the Super late responders (once given 3% chance of SVR only) all SVR with extended tx. So their rate was 100% clearance.
That means think carefully, this has already cost you in terms of time and health and money. If you treated even one, or pssibly 2 months now, you would give yourself a lot more of a chance to stay clear than if you end now. So one or two months now could save you another round of treatment later, and another 6 or 8 months. What will that cost and what toll would it take? And will they even allow that where you are?
So I guess what I'm saying is, if there were a way you could manage to hang in there for longer now, it might be worth it's weight in gold. And remember, the duration of treatment is to give the drugs time to kill or mutate all the virus whereever it is hiding. The virus in the blood is most vunerable, but virus in the tissues can linger much longer, and survive much longer before the drugs finally get to them. Many times shorter treatments have been tried. At one time, they even tried "pulsing" the drugs, meaning once the person went UND they would cut the doses way back, and only increase them when the VL began to reemerge. The result was NO ONE succeeded in SVR. The truth is with the current SOC the way the virus is done in is to hit the thing long and hard, with no let up. That's the nub of it.
Considering then that for every month of extra tx the rates of SVR went up several percentage points, usually double digits per month, I would have to say if I were in your boat I would try my hardest to stick with tx a little longer.
Maybe I'm the only one in here really qualified to say this since I'm in the same basic boat, only worse. I do not know if I went UND at 13 wks or at 25. Because there was a 3 month gap my doctor has agreed to extend my tx beyond 72 wks. (we don't know yet if the insurance will agree.
My last PCR was only 50,000 so I may have been under by 13 or 14, but I'll never know.
What he suggested is we "split the difference". We will assume I went under half way between the 12 and the 26 week PCRS...and so rather than treat 72 I will try to make it to 85 to be on the safe side.
Try to understand why the thinking on type genotype 3 is to only treat for 6 months: it is because it is a weaker form of the virus and usually folks go UND fairly rapidly. However, there are always exceptions to that, and this may be what accounts for the 20% that don't clear. If they went UND later, they need to treat longer, That is what several new studies have shown is important independant of what Genotype a person may be. The new studies show time treated after going UND is a high determinent of outcome.
I can send you an example of this if you so desire.
Whatever you decide, you have our support, and our prayers that your doctor will help you.
mb
so whats your decision would be if were on mine circumstances....
live with 24 week tx and try to check the luck
or
Extend tx and if extend then how much i.e., extension of 4 or 8 or 12 weeks ???
live with 24 week tx and try to check the luck
or
Extend tx and if extend then how much i.e., extension of 4 or 8 or 12 weeks ???
it's not that you can't type the virus, according to a well known researcher who contributes in here if there is ANY RNA detectable which a VL that high would have tons of, then the only reason not to test is lack of machines, leck of knowledge or sheer laziness. Unless you had a VL of 2 or 3 virons only, there would be plenty to get a genotype from. My doctor also confirmed this.
What happens I'm sure in some more backwards areas, as you have both admitted this is what is happening where you are I hope this is OK to say...but what happens is they assume everyone who hasn't been out of the country has the same genotype.
If the test are expensive, and people can't afford them, or the medical system can't, and if they are going to treat you for 24 week EITHER way, meaning whether you are type 3 or 4...then I think they just assume you are that and skip the test.
It really is totally unfair to the patients however because in every country there are always a few, be it 10 or 15 percent, or higher in countries where travel between them is freer, like between the US and Europe for instance, but there is always a percentage that will have a different genotype. All it would take in some instances is for you to have contact with any clinic where foreigners are also treated and you may have been inadvertantly exposed.
Don't think it is just where you are though. When I first took my son in for testing, they found antibody but no RNA. My doc said...well why don't we just treat him for 6 months, that should be enough, his VL is so load that will probably do it...we don't really need the genotype. This is a well known specialist here in the US !!!
I said no way, not until we know for a fact that he has the virus, which, I learned in this forum from HR that if there is ANY VL then there ARE tests that will genotype it...if you cannot find genotype you may not have the virus. I also said no way until we know genotype because without that, how do we know he's not 1a, most common here, in which case 6 months may not be enough.
It turns out that when an accurate test was done, >1 virion accurate, that no virus could be detected. And that time no antibody could be found either.
Which can only mean that their was a dirty machine or slide contaminatiion, blood from one slide transferring to another.
the tests are only as good as the machines and the people maintaining them are. If a machine is less than accurate, or someone is not following procedures meticulously then reading can be off be substantial amounts. Obviously if someone with 17 million virons had their slide bump yours your reading would be thrown way off.
Unfortunately most of the machine in use in this country are still not 100% accurate, and the older machines that could only read >50 or >25 are actually 50 times less accurate than a machine that can detect >1-2 virons.
Alas its not a perfect world. The good news is you are probably the genotype common to pakistan, and the chances are good that 24 weeks will do the trick...at least for 80% of the people in Pakistan it will. Perhaps that's what doctors there are banking on with limited funds ad resources to perform all these tests.
mb
What happens I'm sure in some more backwards areas, as you have both admitted this is what is happening where you are I hope this is OK to say...but what happens is they assume everyone who hasn't been out of the country has the same genotype.
If the test are expensive, and people can't afford them, or the medical system can't, and if they are going to treat you for 24 week EITHER way, meaning whether you are type 3 or 4...then I think they just assume you are that and skip the test.
It really is totally unfair to the patients however because in every country there are always a few, be it 10 or 15 percent, or higher in countries where travel between them is freer, like between the US and Europe for instance, but there is always a percentage that will have a different genotype. All it would take in some instances is for you to have contact with any clinic where foreigners are also treated and you may have been inadvertantly exposed.
Don't think it is just where you are though. When I first took my son in for testing, they found antibody but no RNA. My doc said...well why don't we just treat him for 6 months, that should be enough, his VL is so load that will probably do it...we don't really need the genotype. This is a well known specialist here in the US !!!
I said no way, not until we know for a fact that he has the virus, which, I learned in this forum from HR that if there is ANY VL then there ARE tests that will genotype it...if you cannot find genotype you may not have the virus. I also said no way until we know genotype because without that, how do we know he's not 1a, most common here, in which case 6 months may not be enough.
It turns out that when an accurate test was done, >1 virion accurate, that no virus could be detected. And that time no antibody could be found either.
Which can only mean that their was a dirty machine or slide contaminatiion, blood from one slide transferring to another.
the tests are only as good as the machines and the people maintaining them are. If a machine is less than accurate, or someone is not following procedures meticulously then reading can be off be substantial amounts. Obviously if someone with 17 million virons had their slide bump yours your reading would be thrown way off.
Unfortunately most of the machine in use in this country are still not 100% accurate, and the older machines that could only read >50 or >25 are actually 50 times less accurate than a machine that can detect >1-2 virons.
Alas its not a perfect world. The good news is you are probably the genotype common to pakistan, and the chances are good that 24 weeks will do the trick...at least for 80% of the people in Pakistan it will. Perhaps that's what doctors there are banking on with limited funds ad resources to perform all these tests.
mb
whats the reason of UNTYPEABLE , is it due to cross reaction of diff genos or failue of test to determine or any new type ???
i m much worried to hear about the length of tx. i dont know my genotype but i have checked 12 week pcr. what should i do???????. Here in pakistan doc are totaly unknow about modern research and theories. They are treating us in old way.
sorry to bother you again and again but thats the problem of my friend also..... His Serotyping test in Pakistan was UNTYPEABLE and he is also getting the same tx , i had forced him to get PCR after 12 weeks ( as week 4 was not tested in his case too) and his week 12 PCR shows UND , he is also worried about his tx as he was UNTYPEABLE and doc is still confused about the duration of his tx
Can anybody suggest something for him, moreover whats the reason of UNTYPEABLE , is it due to cross reaction of diff genos or failue of test to determine or any new type ???
His pretx VL was 345,000 iu/ml
Can anybody suggest something for him, moreover whats the reason of UNTYPEABLE , is it due to cross reaction of diff genos or failue of test to determine or any new type ???
His pretx VL was 345,000 iu/ml
I'm in a similar boat, no PCR for 3 months...so now I must treat out to 80 weeks to be sure....
I think one thing we forget or aren't told is the treatment itself can cause pain around the liver and spleen, and some jaundice.
I was very nervous a couple of times that I was relasping....but my PCR came back fine, it was just my body reacting to the tx. drugs. They do make your body fight really hard against the virus, and sometimes this can aggravate the organs, but thanks be to God they usually recover. Most of my discomfort was first day of shot, and last day of the week. So when the INF was strongest and weakest. So no rhyme or reason there.
You aren't on peg anyway. It could be you are just starting to wear down from the tx.
Many people seem to have the most trouble and want to quit tx in the second half of the year. That said, I agree with the others, treating out to 36 would give you a better chance at SVR, and at least you wouldn't be wondering forever after "did I quit just a little too soon." No one want to repeat this whole tx process, so a little longer now may spare you from having to start all over at some point.
Hope you do SVR...and try not to worry over every symptom that crops up....I've had about 3-4 dozen weird things happen to my body....from weird sores under my eyelids to serious infections....all in a days work so to speak....side effects are to be expected.
mb
I think one thing we forget or aren't told is the treatment itself can cause pain around the liver and spleen, and some jaundice.
I was very nervous a couple of times that I was relasping....but my PCR came back fine, it was just my body reacting to the tx. drugs. They do make your body fight really hard against the virus, and sometimes this can aggravate the organs, but thanks be to God they usually recover. Most of my discomfort was first day of shot, and last day of the week. So when the INF was strongest and weakest. So no rhyme or reason there.
You aren't on peg anyway. It could be you are just starting to wear down from the tx.
Many people seem to have the most trouble and want to quit tx in the second half of the year. That said, I agree with the others, treating out to 36 would give you a better chance at SVR, and at least you wouldn't be wondering forever after "did I quit just a little too soon." No one want to repeat this whole tx process, so a little longer now may spare you from having to start all over at some point.
Hope you do SVR...and try not to worry over every symptom that crops up....I've had about 3-4 dozen weird things happen to my body....from weird sores under my eyelids to serious infections....all in a days work so to speak....side effects are to be expected.
mb
hi Marcia,,,, you said you are going for 32 weeks....... thats great , i have heard that there are two options only 36 or 48.... thats great .....
epiphiny
thanks for giving your opinion , can you pls mention something more about the said San Fransisco Conference so that i can google it to show it to my doc.
Ali
Thanks yar .... i really need prays from all of you
epiphiny
thanks for giving your opinion , can you pls mention something more about the said San Fransisco Conference so that i can google it to show it to my doc.
Ali
Thanks yar .... i really need prays from all of you
Without a doubt I would extend to 36, or even 48 if you can.
I am also G3a and I am treating for 48. The doc and sponsor company agreed to this length of treatment for me after the San Fransisco Conference.
Let's say you decide to do 36, that is only 12 more weeks, that is not long for an increased chance at SVR for life.
All the best, keep us posted please.
Epi :))
I am also G3a and I am treating for 48. The doc and sponsor company agreed to this length of treatment for me after the San Fransisco Conference.
Let's say you decide to do 36, that is only 12 more weeks, that is not long for an increased chance at SVR for life.
All the best, keep us posted please.
Epi :))
Well, I say it would be safer, since you do not know if you made UND at 4 weeks. I am 3a and got my UND sometime between week 4 and 8 (it was recorded UND at 8 weeks and my tx was extended to 32 weeks). One of the new formula's for geno 3 seems to be EVR + 24 weeks. Since your UND was only documented at 12 weeks, it would make sense to extend to 36 weeks.
Marcia
Marcia
Last evening i had a discussion with the medical personnel from the medicine company of which meds ( Interferone) i am using, according to them , in Pakistan they are facing some relapse cases of Geno 3a and relapse %age of other Geno 3 & 2 are very rare. I have got tested (Serotyping) and my result only showed type 3 and i dont know whether i am Geno 3a or 3b etc etc ??? he said for Geno 3a they are going to propose for 36 months tx....
wellllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllll........... lots and lots of confusion
Can you people give your opinion, pls step into my shoes and decide what will be your decision in this situation... i.e.,
1- Stop tx on 24th week
or
2- Extend tx and Continue till 36 week
pls do reply
wellllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllll........... lots and lots of confusion
Can you people give your opinion, pls step into my shoes and decide what will be your decision in this situation... i.e.,
1- Stop tx on 24th week
or
2- Extend tx and Continue till 36 week
pls do reply
Marcia2202
jmjm530
Jacob43
desrt
Copyman
Jd
NYgirl
Thanks to you all. All of you are really supportive....
,
jmjm530
Jacob43
desrt
Copyman
Jd
NYgirl
Thanks to you all. All of you are really supportive....
,
I'm so happy for you that you are almost done. I still remember when you joined the forum and had the big green apple as your profile picture.
I also believe that you have a major chance of making it. If I remember correctly, at a certain time you mentioned that the doctor said that they do have quite a high success rate in Pakistan. Being Asian, you have another factor going for you. I would also suggest a PCR at 4 weeks post, if you can afford it. It will give you a very good indication and it will ease your mind, instead of having to wait longer.
I wish you all the best and pray for your SVR.
I also believe that you have a major chance of making it. If I remember correctly, at a certain time you mentioned that the doctor said that they do have quite a high success rate in Pakistan. Being Asian, you have another factor going for you. I would also suggest a PCR at 4 weeks post, if you can afford it. It will give you a very good indication and it will ease your mind, instead of having to wait longer.
I wish you all the best and pray for your SVR.
This study suggests in overall SVR of 65% with standard interferon injected three times per week plus ribavirin . I believe I've seen as high as 80%. Given your low pretreatment viral load, I'd say 80% is a reasonable figure. Many here, would love to have odds like that. I see absolutely no reason to treat any longer than 24 weeks, regardless of the fact that you had no four or 12 week test. Try to remain positive, you have every reason to be.
http://www.natap.org/2001/sum01/pegInterferon.html
http://www.natap.org/2001/sum01/pegInterferon.html
Please try to put your mind at ease. You cannot change the fact that your dr did not test you early. More than likely you cleared. Ask for a post 4 wk pcr. What I've been reading, the virus shows up pretty rapidly after tx.
Now concerning your jaundice... my wife and I are expecting our first child (we've recently learned she's pregnant), and we have been reading everything about children/babies/birth etc. I came across something regarding why babies are sometimes born jaundice and have to be placed under lamps for short periods)... it has to do with red blood cells. Blood flow through the liver - and the liver breaks down old inefficient (AND DEAD RED BLOOD CELLS)... This tx causes a huge reduction of red blood cells - thus the anemia and sometimes the necessity of procrit etc. A condition such as tx leads to a very rapid destruction of red blood cells, creating too much bilirubin for even a healthy liver to handle thus your jaundice in nails, skin. My wife's a nurse and she mentioned to me that even removing colored fingernail polish ... can cause yellowing of nails. One reason she keeps her nails natural with just a clear coating I don't know if you use dark colored polished. That's something else to consider. More than likely it is from the destruction of red blood cells from tx. I imagine some members treating may chime in and say, yeah, there is a yellow cast to my palms or soles of feet or even the whites of eyes.
So...that said, I don't think jaundice would necessarily point to relapse. I imagine you will be on here in a few weeks with good news.
Jacob
Now concerning your jaundice... my wife and I are expecting our first child (we've recently learned she's pregnant), and we have been reading everything about children/babies/birth etc. I came across something regarding why babies are sometimes born jaundice and have to be placed under lamps for short periods)... it has to do with red blood cells. Blood flow through the liver - and the liver breaks down old inefficient (AND DEAD RED BLOOD CELLS)... This tx causes a huge reduction of red blood cells - thus the anemia and sometimes the necessity of procrit etc. A condition such as tx leads to a very rapid destruction of red blood cells, creating too much bilirubin for even a healthy liver to handle thus your jaundice in nails, skin. My wife's a nurse and she mentioned to me that even removing colored fingernail polish ... can cause yellowing of nails. One reason she keeps her nails natural with just a clear coating I don't know if you use dark colored polished. That's something else to consider. More than likely it is from the destruction of red blood cells from tx. I imagine some members treating may chime in and say, yeah, there is a yellow cast to my palms or soles of feet or even the whites of eyes.
So...that said, I don't think jaundice would necessarily point to relapse. I imagine you will be on here in a few weeks with good news.
Jacob
I seem to remember a figure of aprox. 25-30% SVR for the brief time that non-PEG + riba was SOC - but I think that was for all genotypes. Without a 4 week or 12 PCR, it's all guesswork, but I'd bet you have the same chance for SVR as a geno 1 on PEG - i.e. about 50-50.
Were you the one who was comparing the price of PEG IFN to non-PEG in your countrry? If so, I'm interested in ho many times more expensive the pegylated is.
Were you the one who was comparing the price of PEG IFN to non-PEG in your countrry? If so, I'm interested in ho many times more expensive the pegylated is.
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