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After Hep C Treatment

Posted by bobuloops @bobuloops, Dec 11, 2014

post harvoni treatment how did you feel before and how do you feel now

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friendz4 | @friendz4 | Feb 7, 2019
In reply to @simple27 "Hi there! I googled what you said and it looks like TAG and GHJP were able..." + (show)
Profile picture for simple27 @simple27

Hi there! I googled what you said and it looks like TAG and GHJP were able to obtain some important documents including clinical study reports and detailed summaries of study results, as well as study protocols, case report forms on adverse events, and selected correspondence between Gilead and the FDA. But I can't find where these documents were published? Do you happen to know where I could find them? I'd LOVE to read them!

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Gilead would not release the trial information how can I send you the page I have,did you go on the FIOA site to search side effects posted after we all took the so called cure, also what was your viral load at the time of treatment ?

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sueleerock | @sueleerock | Feb 7, 2019
In reply to @simple27 "Hi there! I googled what you said and it looks like TAG and GHJP were able..." + (show)
Profile picture for simple27 @simple27

Hi there! I googled what you said and it looks like TAG and GHJP were able to obtain some important documents including clinical study reports and detailed summaries of study results, as well as study protocols, case report forms on adverse events, and selected correspondence between Gilead and the FDA. But I can't find where these documents were published? Do you happen to know where I could find them? I'd LOVE to read them!

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No, sorry I don't. I came across a document intended for doctors at the va treating patients with interferon, that is how I discovered that they did not follow any of the protocols set.up to protect the patient.

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sueleerock | @sueleerock | Feb 7, 2019
In reply to @simple27 "Hi there! I googled what you said and it looks like TAG and GHJP were able..." + (show)
Profile picture for simple27 @simple27

Hi there! I googled what you said and it looks like TAG and GHJP were able to obtain some important documents including clinical study reports and detailed summaries of study results, as well as study protocols, case report forms on adverse events, and selected correspondence between Gilead and the FDA. But I can't find where these documents were published? Do you happen to know where I could find them? I'd LOVE to read them!

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Try the words Gilead, FDA, harvoni.

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sueleerock | @sueleerock | Feb 7, 2019
In reply to @simple27 "@sueleerock @friendz4 I would love to see what you both have! When I got sick and..." + (show)
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@sueleerock @friendz4 I would love to see what you both have! When I got sick and my PCP originally thought I had leukemia based on my blood labs, I spent so much time researching blood diseases and blood cancers. I have a wealth of information on those subjects, but I never even considered that this all could be from the Harvoni treatment until recently so I haven't done much research on it yet. I would really appreciate any documents either of you have saved and wouldn't mind sharing. Sue, I realize I will have to wait for yours, but don't forget about me when you get your computer. : )

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I won't forget you. But.... This one finger thing has got to go!

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simple27 | @simple27 | Feb 7, 2019
In reply to @friendz4 "Yes it’s nice to interact with others that are in the same situation my hematologist believes..." + (show)
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Yes it’s nice to interact with others that are in the same situation my hematologist believes the Harvoni messed with my own immune system he wants to try plasmapherisis I am not sure I want to do it as there are risks if you don’t mind me asking what was your viral load before treatment

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I agree, and you are the very first person that I have encountered who is going through an almost identical situation as I am. I honestly don't remember what my viral load was before treatment. I might be able to find it among the records I saved today. I know that it wasn't extremely high because I remember my doctor telling me that he had seen far higher. I had the disease for approximately 10 years prior to treatment. When I go through the records I was able to obtain online today I will check and if I find the answer I will absolutely share it.

🙂

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simple27 | @simple27 | Feb 7, 2019
In reply to @sueleerock "I was about ready to die, get liver transplant or so they told me." + (show)
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I was about ready to die, get liver transplant or so they told me.

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How long did you have to do the Interferon treatment? I have heard and read such horrific testimonies from folks who took that treatment. My doctor told me stories of his past patients (without breaking any privacy laws) who were treated with Interferon and ended up in the Intensive Care Unit and others who passed away. 🙁

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simple27 | @simple27 | Feb 7, 2019
In reply to @sueleerock "Thank you, you are very kind. Remember that the Sunshine Act did not happen until 2014...." + (show)
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Thank you, you are very kind. Remember that the Sunshine Act did not happen until 2014. I don't have access to a computer right now to answer anyone's questions re use of the platform.

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@sueleerock No worries, I understand. Thank you for replying. 🙂

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simple27 | @simple27 | Feb 7, 2019
In reply to @friendz4 "Gilead would not release the trial information how can I send you the page I have,did..." + (show)
Profile picture for friendz4 @friendz4

Gilead would not release the trial information how can I send you the page I have,did you go on the FIOA site to search side effects posted after we all took the so called cure, also what was your viral load at the time of treatment ?

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I can't recall my viral load prior to treatment and I just did a quick glimpse at some of the records I saved today but none had anything about any viral loads that I've yet to find. I want to say it was low million, but I don't trust my own memory and want to find the exact answer to your question. I will do some digging through my online records. I bet I could call my doctor's office tomorrow and ask them. Save me some leg work lol.

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simple27 | @simple27 | Feb 7, 2019
In reply to @sueleerock "Try the words Gilead, FDA, harvoni." + (show)
Profile picture for sueleerock @sueleerock

Try the words Gilead, FDA, harvoni.

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Put this into your web browser (without the space after the https)... https ://www.gilead.com/-/media/files/pdfs/medicines/liver-disease/harvoni/harvoni_pi_old.pdf?la=en

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simple27 | @simple27 | Feb 7, 2019
In reply to @friendz4 "Yes it’s nice to interact with others that are in the same situation my hematologist believes..." + (show)
Profile picture for friendz4 @friendz4

Yes it’s nice to interact with others that are in the same situation my hematologist believes the Harvoni messed with my own immune system he wants to try plasmapherisis I am not sure I want to do it as there are risks if you don’t mind me asking what was your viral load before treatment

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@friendz4 Oddly enough, I have seen 3 different hematologists since 2015. One of which was at a Boston hospital. Not one of them ever even mentioned the possibility that Harvoni could be to blame for any of my symptoms or test results.

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