Aa
Guiding myself
I haven't posted since Oct. 11 when I asked for advice about quitting incevik a few days early. I did end up quitting 5days early. I personally, just couldn't handle it. I have posted a few times about issues with my doctor who was really not very supportive through this entire process (and sometimes clueless). Right now, I'm worried about my viral load:
At 4 weeks my HCV RNA IU/ml was <43 and my HCV RNA ,QN, PCR was <1.63 log IU/ML. My doctor told me at the time I was UND and called an early responder. At 12 weeks, it was the same exact number. He told me at the time, those numbers basically mean I'm undetectable. Today I read a post where someone said they were 43 and still not undectable and now I'm really worried if he knows what he is talking about. Any advice? Cyndi
At 4 weeks my HCV RNA IU/ml was <43 and my HCV RNA ,QN, PCR was <1.63 log IU/ML. My doctor told me at the time I was UND and called an early responder. At 12 weeks, it was the same exact number. He told me at the time, those numbers basically mean I'm undetectable. Today I read a post where someone said they were 43 and still not undectable and now I'm really worried if he knows what he is talking about. Any advice? Cyndi
There is useful information here no doubt about it. At times I have found the tone of some rather dictatorial. That is why some including myself get scared by statements from users, not physicians, with declarations regarding another user's treatment course.
"I do think some people who post, present like they are as knowledgable as physicians."
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The flip side is also true; there are many physicians who present that they are knowledgable, but they are not.
When I first arrived on this forum, I knew next to nothing about hepatitis c, the progression of disease, and treatment. Armed with what I learned here, seeking the knowledge and following the example of people who did their own research, I learned enough to have intelligent conversations about options and share thoughts with my husband's hepatitis treatment doctor.
Now, when I tried to have similar discussions with my husband's PCP and my husband's liver TP hepatologists, some of them actually were less informed than I as to why my husband's treatment protocol was such a divergence from the norm. The same was the case with ER doctors, hospitalists, and many other medical professionals we encountered over the years. Even when other viral treatment doctors, also MDs, sat in for the head viral hep doc, I often had to explain the nuances of my husband's treatment and condition, and I found many of them were not familiar with up-to-date information and off-label approaches to hcv.
I believe many folks here have been through multiple rounds of treatment and taken that extra step to research and educate themselves well, and in some cases, perhaps are even better informed than the general populace of medical providers who are not required to pursue continuing education. Certainly nothing here should be used in lieu of medical advice, but certainly people should be encouraged to read about other approaches than just those recommended by their own particular doctor, and perhaps as a result help them initiate the discussion of other, possibly better options.
---------------
The flip side is also true; there are many physicians who present that they are knowledgable, but they are not.
When I first arrived on this forum, I knew next to nothing about hepatitis c, the progression of disease, and treatment. Armed with what I learned here, seeking the knowledge and following the example of people who did their own research, I learned enough to have intelligent conversations about options and share thoughts with my husband's hepatitis treatment doctor.
Now, when I tried to have similar discussions with my husband's PCP and my husband's liver TP hepatologists, some of them actually were less informed than I as to why my husband's treatment protocol was such a divergence from the norm. The same was the case with ER doctors, hospitalists, and many other medical professionals we encountered over the years. Even when other viral treatment doctors, also MDs, sat in for the head viral hep doc, I often had to explain the nuances of my husband's treatment and condition, and I found many of them were not familiar with up-to-date information and off-label approaches to hcv.
I believe many folks here have been through multiple rounds of treatment and taken that extra step to research and educate themselves well, and in some cases, perhaps are even better informed than the general populace of medical providers who are not required to pursue continuing education. Certainly nothing here should be used in lieu of medical advice, but certainly people should be encouraged to read about other approaches than just those recommended by their own particular doctor, and perhaps as a result help them initiate the discussion of other, possibly better options.
Best of luck to you, lets hope youe eRVR trumps all, I think theres a good chance it will..... You have to work so in your case your options are few.
Stay well,
cando
Stay well,
cando
I do blame him. Unfortunately he is now deceased, so in trying to make sense of his records there have been more questions raised than answered. And I couldn't agree anymore with you on basing your tx on what somebody else did or didn't do. I am certainly not endorsing anything for anybody's tx.
I also greatly appreciate the information I have received on this forum. It has been very beneficial to me and has helped me as I continue along the treatment course. I understand this disease, its progression, its stages, and its treatment, as well as the interpretation of the lab tests much better thanks to knowledgeable people on this forum.
I do think some people on this forum do, in fact, know more than some of the doctors. Of course, the hepatology experts and some GI's are very knowlegeable, but some doctors clearly seem not to know what they are doing when treating Hep C and dealing with these meds. The information on this forum and links to other data give us the ability to be our own advocates when necessary. I think it also helps us to understand the importance and benefits of hanging in there.
The only problem I have noticed with a few posts is that a (very) few people are offering advice that is simply not proven and against the known data and protocols. The advice those few are offering is their own opinions based on no concrete data. I have no problem with opinions, but I think the problem lies in the fact that sometimes these opinions are offered as definite data when, in fact, they are just opinions on how things could be, might be, could turn out, etc. Opinions are opinionms and should be stated as such.
When offering information, data, advice, etc., I agree with Willbb: "this is always why it is imperative to copy the studies and articles by those that really are knowledgeable."
If one quotes the studies/data and provides a link to the data then people can see for themselves what the data shows.
I also agree that protocols and treatments will change in the furure but "until there is that new set of data and possibly new protocols put in place by the drug companies or the physcicians that are treating this first group, it would seem the ones now in place are the safest bet to follow."
I do think some people on this forum do, in fact, know more than some of the doctors. Of course, the hepatology experts and some GI's are very knowlegeable, but some doctors clearly seem not to know what they are doing when treating Hep C and dealing with these meds. The information on this forum and links to other data give us the ability to be our own advocates when necessary. I think it also helps us to understand the importance and benefits of hanging in there.
The only problem I have noticed with a few posts is that a (very) few people are offering advice that is simply not proven and against the known data and protocols. The advice those few are offering is their own opinions based on no concrete data. I have no problem with opinions, but I think the problem lies in the fact that sometimes these opinions are offered as definite data when, in fact, they are just opinions on how things could be, might be, could turn out, etc. Opinions are opinionms and should be stated as such.
When offering information, data, advice, etc., I agree with Willbb: "this is always why it is imperative to copy the studies and articles by those that really are knowledgeable."
If one quotes the studies/data and provides a link to the data then people can see for themselves what the data shows.
I also agree that protocols and treatments will change in the furure but "until there is that new set of data and possibly new protocols put in place by the drug companies or the physcicians that are treating this first group, it would seem the ones now in place are the safest bet to follow."
Cyndi:
After all this time, I still can't understand how to read viral loads. My nurse says I'm UND, so I believe this is true. I hope you are too!
People stop early for various reasons, usually side effect related.
It isn't our place to judge what another person does,we aren't in their shoes.
Ideally we offer advice when asked and answer questions.
Even my heptalogist admits, we are individuals and don't always respond like the graphs!
I'm not recommending it but I do recall during my first tx, two genotype 2s who stopped early, one at 7 weeks, due to severe problems, another at 16 because she hated the side effects, and both were SVR. And we all know many people slugged through long treatments and failed.
When I asked my nurse to lower my neupogen dosage, she blurted out
" I've never heard of anyone taking less than 300mg."
My doctor had no problem with reducing it to 150.
Dosage is tricky and guidelines are just that.
After all this time, I still can't understand how to read viral loads. My nurse says I'm UND, so I believe this is true. I hope you are too!
People stop early for various reasons, usually side effect related.
It isn't our place to judge what another person does,we aren't in their shoes.
Ideally we offer advice when asked and answer questions.
Even my heptalogist admits, we are individuals and don't always respond like the graphs!
I'm not recommending it but I do recall during my first tx, two genotype 2s who stopped early, one at 7 weeks, due to severe problems, another at 16 because she hated the side effects, and both were SVR. And we all know many people slugged through long treatments and failed.
When I asked my nurse to lower my neupogen dosage, she blurted out
" I've never heard of anyone taking less than 300mg."
My doctor had no problem with reducing it to 150.
Dosage is tricky and guidelines are just that.
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