Aa
Dr said no need to get PCR after 12 weeks
i have just finished my 10 weeks. i dont know my genotype. Never got biopsy. I have asked doc to get PCR after 12 weeks and he said it is not necessary to check after 12 weeks. im on standard interferon theropy. i m much worried about doc decision. i also complaint him about my rapid heart beat on next day of shot (100 / minute), night sweets but he did'nt take notice. i asked him to check thyroid function but he said there is no need yet. im realy anxious about doc decision and my rapid heart beat. some time it seems my heart will burst out of my chest.
mr. liver said it best....it's like going back in time ten years...we haven't seen that level of ineptness here in a long time.
Yes, I did compare the US to them....but then I've spent time up at the VA hospital watching them ignor and deny treatments....even claiming no responsibility for the gun injections, or the gulf war syndrome or agent orange victims for years.
Is all of the US that bad, no, but certain groups have their proverbial heads in the sand everywhere on earth.
I'm not aiming anything JUST at the arab nations, there are abuses all over, but certainly parts of africa and the muslim nations rate at the top. Saying that is just truth telling not aimed at anything more.
I'm reminded of one young man who PM'd me telling me how many thousands he had to present up front just to be seen in his country.
Then there was another young man, about to be married, who could not even with his families help seem to pool enough together for his treatment, and so he was determined to just serve his family, and die when his time came.
I cannot share whose these people were without violating their right to privacy, but I assume you I have PM with many arab/muslim victims of both this disease and their current health care systems. Not one of them would not gladly trade places with us in the US to get the care they need, but alas that too is bared to all but the extremely wealthy.
I've also talked to immigrants who cannot recieve any health care in their host countries,
the state of health care world wide is a long way from perfection and in many places deplorable. Saying that, about ones own country doesn't make anyone a bigot or an alarmist, it all depends on where you've been, and what you've seen and heard.
Personally, I think more positive change can come from educating folks on what should be taking place, and if as citizens they collectively get angry, maybe they will elict change within their government.
As long as people just "take it" all the mistreatment and such, and as long as they don't become politically active, not much will change.
the sureest proof of that is what happened to AIDS in this country. Political activism changes this from the sourge that everyone dies in 2-3 years from, to the most heavily researched, most newly developed drugs of any disease in history.
Now we have drugs extending life 2--30 years for HIV/AIDS and research that is spilling over from those discoveries into new treatments for HCV and cancers as well.
However it took concerted effort at a grass roots level to force an attitude change of the medical communities and the governments.
What I'm suggesting is the same leap in awareness needs to take place in many lands.
Here we spend one in every 8 dollars on health care....should we NOT be concerned when people are in places where one in 200 is a stretch....where no insurance is even available, or where one must arrive with 6 months salary in hand just for an initial consultation?
cowriter, You aren't required to share my views here, but neither would I suggest you try to squelch what might turn out to be very necessary and overdue discussions.
I take exception to anyone being jerked around by medicine, here and elsewhere.
mb
Yes, I did compare the US to them....but then I've spent time up at the VA hospital watching them ignor and deny treatments....even claiming no responsibility for the gun injections, or the gulf war syndrome or agent orange victims for years.
Is all of the US that bad, no, but certain groups have their proverbial heads in the sand everywhere on earth.
I'm not aiming anything JUST at the arab nations, there are abuses all over, but certainly parts of africa and the muslim nations rate at the top. Saying that is just truth telling not aimed at anything more.
I'm reminded of one young man who PM'd me telling me how many thousands he had to present up front just to be seen in his country.
Then there was another young man, about to be married, who could not even with his families help seem to pool enough together for his treatment, and so he was determined to just serve his family, and die when his time came.
I cannot share whose these people were without violating their right to privacy, but I assume you I have PM with many arab/muslim victims of both this disease and their current health care systems. Not one of them would not gladly trade places with us in the US to get the care they need, but alas that too is bared to all but the extremely wealthy.
I've also talked to immigrants who cannot recieve any health care in their host countries,
the state of health care world wide is a long way from perfection and in many places deplorable. Saying that, about ones own country doesn't make anyone a bigot or an alarmist, it all depends on where you've been, and what you've seen and heard.
Personally, I think more positive change can come from educating folks on what should be taking place, and if as citizens they collectively get angry, maybe they will elict change within their government.
As long as people just "take it" all the mistreatment and such, and as long as they don't become politically active, not much will change.
the sureest proof of that is what happened to AIDS in this country. Political activism changes this from the sourge that everyone dies in 2-3 years from, to the most heavily researched, most newly developed drugs of any disease in history.
Now we have drugs extending life 2--30 years for HIV/AIDS and research that is spilling over from those discoveries into new treatments for HCV and cancers as well.
However it took concerted effort at a grass roots level to force an attitude change of the medical communities and the governments.
What I'm suggesting is the same leap in awareness needs to take place in many lands.
Here we spend one in every 8 dollars on health care....should we NOT be concerned when people are in places where one in 200 is a stretch....where no insurance is even available, or where one must arrive with 6 months salary in hand just for an initial consultation?
cowriter, You aren't required to share my views here, but neither would I suggest you try to squelch what might turn out to be very necessary and overdue discussions.
I take exception to anyone being jerked around by medicine, here and elsewhere.
mb
Well ji dude!! this will be a first then, me knowing something you didn't, but it's true none the less.
It came up in my class prior to tx. Our clinic here in portland offers a class to newly diagnosed. The issue of reactions was being discussed, and the issue of Pegasus medium also in some rare instances being a cause of symptoms.
Since some allergic symptoms can very closely resemble those of reactions to the Interferon itself, such as fever and diahrrea, it's important not to rule the possibility out.
the medium consists of some plasticine type product that most but not all people will process and remove without reacting to...but if you one of the unlucky ones, then the medium can be causing you as much or more grief than the drug itself.
I know of no definitive way to rule this out entirely save switching to a non-time release product with no medium long enough to ee if symptoms subside, which would take at least a couple of weeks since it is time released and designed to stay in the system for some time..
It came up in my class prior to tx. Our clinic here in portland offers a class to newly diagnosed. The issue of reactions was being discussed, and the issue of Pegasus medium also in some rare instances being a cause of symptoms.
Since some allergic symptoms can very closely resemble those of reactions to the Interferon itself, such as fever and diahrrea, it's important not to rule the possibility out.
the medium consists of some plasticine type product that most but not all people will process and remove without reacting to...but if you one of the unlucky ones, then the medium can be causing you as much or more grief than the drug itself.
I know of no definitive way to rule this out entirely save switching to a non-time release product with no medium long enough to ee if symptoms subside, which would take at least a couple of weeks since it is time released and designed to stay in the system for some time..
Once you start treatment, the genotype won't show up.
Co
-------------------------------------------------------------------------------
Genotype is available pre and post treatment so this comes as a bit of a surprise that you can't grab genotype during treatment from RNA. Got any references regarding this statement?
Trish
Co
-------------------------------------------------------------------------------
Genotype is available pre and post treatment so this comes as a bit of a surprise that you can't grab genotype during treatment from RNA. Got any references regarding this statement?
Trish
Meki: I've always been interested in where it might have come from --- and where the blood products came from... Yanno?
------------------------------------------------------
Maybe Pakistani Monkey sex???
------------------------------------------------------
Maybe Pakistani Monkey sex???
by jmjm530
Pakistan genotype Stats
http://cat.inist.fr/?aModele=afficheN&cpsidt=2049661
87% geno 3's, 9% geno 1's,
2% geno 2's, 2% geno 5,
"
So jm - does this mean the probability that the HCV genotype 3a is originated in the Middle East?
Or that is where the prevalence of it is?
I find Geographical Genotyping interesting -- and wonder why there is a mutation...
I've often wondered if the diet/race/genetics of races played a big difference in the way the Virus replicated - or mutated.
And if the "quote" easier clearance of some genotypes --- if that mutation could be understood - then they might be able to mutate the TX --- or the actual virus to change into the "easier" to clear genotype.
OK - just my brain on overdrive.. Told ya -- I have months like that.... LOL!
Besides --- for me where I live --- and where I've been in the time frame that I obtained HCV --- GENOTYPE 3a --- and the rarity of that genotype in the state of Alaska --- I've always been interested in where it might have come from --- and where the blood products came from... Yanno?
(this is based on the premise that I believe I obtained HCV through a shot or multiple shots of gamma globulin "rhogam" )
Meki
Pakistan genotype Stats
http://cat.inist.fr/?aModele=afficheN&cpsidt=2049661
87% geno 3's, 9% geno 1's,
2% geno 2's, 2% geno 5,
"
So jm - does this mean the probability that the HCV genotype 3a is originated in the Middle East?
Or that is where the prevalence of it is?
I find Geographical Genotyping interesting -- and wonder why there is a mutation...
I've often wondered if the diet/race/genetics of races played a big difference in the way the Virus replicated - or mutated.
And if the "quote" easier clearance of some genotypes --- if that mutation could be understood - then they might be able to mutate the TX --- or the actual virus to change into the "easier" to clear genotype.
OK - just my brain on overdrive.. Told ya -- I have months like that.... LOL!
Besides --- for me where I live --- and where I've been in the time frame that I obtained HCV --- GENOTYPE 3a --- and the rarity of that genotype in the state of Alaska --- I've always been interested in where it might have come from --- and where the blood products came from... Yanno?
(this is based on the premise that I believe I obtained HCV through a shot or multiple shots of gamma globulin "rhogam" )
Meki
Hi Meki,
I believe CoWriter’s premise is that if a patient is *undetectable* for virus due to treatment, then the genotyping is unavailable; it requires active RNA for the genotype to be tested.
I hope that’s what she was referring to :o).
Bill
Meki, the previous was addressed to "MerryBe", not you. Apparently, I have my "M's" mixed up today :)
I would still like to see documentation of a treatment strategy that states changing from a peg to a non-peg is advisable because of speculation that side effects are caused because people "may be reacting to the medium the interferon is placed in" as you stated.
Pakistan genotype Stats
http://cat.inist.fr/?aModele=afficheN&cpsidt=2049661
87% geno 3's, 9% geno 1's,
2% geno 2's, 2% geno 5,
http://cat.inist.fr/?aModele=afficheN&cpsidt=2049661
87% geno 3's, 9% geno 1's,
2% geno 2's, 2% geno 5,
"Once you start treatment, the genotype won't show up. "
Interesting Co --- I didn't know this.
Interesting Co --- I didn't know this.
"Interesting, so then alijee needs to go 48 weeks since he does not know his genotype."
-----------
Of course, genotype testing would have been ideal and still could be done if Ali is still detectible. That said, given the geographic odds that Ali is a non-geno 1, I would say that in general (given the absence of a genotype test) the risks of over-treating (48 weeks) outweigh the rewards and therefore 24 weeks could still be considered prudent.
"Interesting, so then alijee needs to go 48 weeks since he does not know his genotype."
________________
That's right.
Co
"You may be reacting to the medium the interferon is placed in. If you were getting an allergic reaction to the medium, it would explain your symptoms.
You could ask to be put in regular daily interferon shots for a couple of weeks and see if the symptoms subside.
the daily shots can feel stronger, but they contain no time release suspention agent. You would then be able to rule in or out if you are allergic to the medium and stay on the daily shots if so. There are quite a few patients who do react and cannot tolerate the pegasus formulea.
-----------------------------------
Changing products in the middle of treatment is a big no-no, especially when you don't even know whether he's already cleared with what's he's taking. And if you had checked some of his previous posts you could have seen that he's not on Pegasys so his shot does not contain any "time release suspention agent".
"In fact, I learned that Pakistan has the highest rate of HCV worldwide chiefly due to the reuse of syringes by the so called "health providers". So medicine has spread this more than people have.
The same thing happens in this county."
--------------------------------
Tell me it isn't so. You didn't just compare the US to Pakistan.
"The US military continued to use air gun injections for years after they knew the risks also. It does seem that it takes a long time for certain groups to come out of their ignorance and face reality. "
--------------------------------
It was thanks to a wonderful man named Harry Hooks and the people from one small forum that they were able to win by one vote and get the FDA to recall jetguns in 1998.
If you want change you make it happen.
"It seems that instead of treating patients as babies, or as people who caused this disease or brought it on themselves, and therefore deserve to suffer, as some medical providers do do.... the attitude should be one of repentance for a plauge which was caused and spread chiefly by those same professionals now treating people."
-------------------------------
Thirty years ago, we didn't know to wear gloves every time we started an IV. The same way you didn't know to donate your own blood a few weeks before surgery or to
sign a form that says that you refuse blood products.
Hepatitis C calls for unity, not division, compassion, not blame, understanding, not condemnation.
So if you can sing....then sing a song of hope. Otherwise, it sounds like you're screeching.
Co
You could ask to be put in regular daily interferon shots for a couple of weeks and see if the symptoms subside.
the daily shots can feel stronger, but they contain no time release suspention agent. You would then be able to rule in or out if you are allergic to the medium and stay on the daily shots if so. There are quite a few patients who do react and cannot tolerate the pegasus formulea.
-----------------------------------
Changing products in the middle of treatment is a big no-no, especially when you don't even know whether he's already cleared with what's he's taking. And if you had checked some of his previous posts you could have seen that he's not on Pegasys so his shot does not contain any "time release suspention agent".
"In fact, I learned that Pakistan has the highest rate of HCV worldwide chiefly due to the reuse of syringes by the so called "health providers". So medicine has spread this more than people have.
The same thing happens in this county."
--------------------------------
Tell me it isn't so. You didn't just compare the US to Pakistan.
"The US military continued to use air gun injections for years after they knew the risks also. It does seem that it takes a long time for certain groups to come out of their ignorance and face reality. "
--------------------------------
It was thanks to a wonderful man named Harry Hooks and the people from one small forum that they were able to win by one vote and get the FDA to recall jetguns in 1998.
If you want change you make it happen.
"It seems that instead of treating patients as babies, or as people who caused this disease or brought it on themselves, and therefore deserve to suffer, as some medical providers do do.... the attitude should be one of repentance for a plauge which was caused and spread chiefly by those same professionals now treating people."
-------------------------------
Thirty years ago, we didn't know to wear gloves every time we started an IV. The same way you didn't know to donate your own blood a few weeks before surgery or to
sign a form that says that you refuse blood products.
Hepatitis C calls for unity, not division, compassion, not blame, understanding, not condemnation.
So if you can sing....then sing a song of hope. Otherwise, it sounds like you're screeching.
Co
Please can you refrain from making comments about 'arab nations' in general as I find this offensive.
jankar
jankar
Yes Za, it's geno 3. Unfortunate they are subjected to such inferior level of care. Makes think twice about complaining.
"If you are able to get another doctor, please go see a different one and get your genotype and your 12 week PCR."
--------------------------
Once you start treatment, the genotype won't show up.
Co
--------------------------
Once you start treatment, the genotype won't show up.
Co
Reading your posts is like stepping back in medical time about 10 years. Back then the most commonly used tx algorithm called for the first vl test after commencing tx to be at 24 weeks for G1 & G4, and 12 weeks for G2 & G3. If clear (<650 copies ml) you proceeded on.
Alot has been learned about early viral kinetics since then. There is a universally recognized value in tailoring tx through the judicious use of lab tests, one being regular vl monitoring and of course, genotyping through PCR.
It would be highly unethical if your doc is intending to treat you for 48 weeks w/out knowing your genotype. Exposing a patient (read:human) to unnecessary drugs with poor safety profiles longer than needed is a dangerous medical position to take, for all involved.
If it were me I'd probably print off Roche's tx algorithm for Pegasys or SP's for Pegintron-A and ask him if he wouldn't mind following it for my safety.Good luck.
ML
Alot has been learned about early viral kinetics since then. There is a universally recognized value in tailoring tx through the judicious use of lab tests, one being regular vl monitoring and of course, genotyping through PCR.
It would be highly unethical if your doc is intending to treat you for 48 weeks w/out knowing your genotype. Exposing a patient (read:human) to unnecessary drugs with poor safety profiles longer than needed is a dangerous medical position to take, for all involved.
If it were me I'd probably print off Roche's tx algorithm for Pegasys or SP's for Pegintron-A and ask him if he wouldn't mind following it for my safety.Good luck.
ML
"Not even sure Ali is on a Peg, but even so, do you have a source for switching to "daily" injections of a non-peg if one is getting side effects from the Peg? Never heard that anywhere and sounds unecessary and potentially dangerous"
Scary maybe?
Scary maybe?
Try and get a twelve week test with perhaps another doctor. Otherwise you won't know if treatment is working.
MB,
Not even sure Ali is on a Peg, but even so, do you have a source for switching to "daily" injections of a non-peg if one is getting side effects from the Peg? Never heard that anywhere and sounds unecessary and potentially dangerous.
MB,
Not even sure Ali is on a Peg, but even so, do you have a source for switching to "daily" injections of a non-peg if one is getting side effects from the Peg? Never heard that anywhere and sounds unecessary and potentially dangerous.
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