Hi @H020 ,
I understand your frustration. I started treatment (TAF-Vemlidy) back in 2017 and I had horrible side-effects that were debilitating. The hepatologist told me that there are little to no side-effects with this drug. Yet, I had at least 10 different side-effects and the only change at that time was going on TAF. Since then, I have noticed that other people have had some similar issues; although some to a lesser degree or only a couple of side-effects. It is such a small percentage though, that I don’t think the manufacturer put much credence towards it.
When we have side-effects, we complain to the doctor but that’s where it ends. How many of us are out there that have suffered tremendously and nothing is done about it? The manufacturer doesn’t get any feedback from all the patients that are suffering after the drug has been released. I know nothing official was ever done about what I went through. So how many of us are out there that nothing is being reported about and in fact, there is a larger percentage of people with side-effects that are just living and suffering through it.
Finally, I was able to switch hepatologists, but this was a few years too late and the ‘side-effects’ had already committed its payload to my body. I have gotten some better over the years, but there are plenty of side-effects that still exist or exist at a lesser degree. The new hepatologist had me try both ETV and TDF over a period of about a year and there were no changes and she ended up putting me back on TAF. Again, this was a few years after I started TAF.
Again, I understand where you are coming from and your frustration; especially if your doctors aren’t listening to you and just placating you or framing things as a ‘YOU’ problem and not the meds. However, the blame definitely does not reside here with the scientists that dedicate their lives to finding a cure and the experts that give us so much time and effort. Maybe it’s easier to vent on this platform because no one will listen to you in the ‘real world’. I would focus your efforts on finding a good doctor that will truly listen to you and believe in you and care about your total health and when you find them, hold on to them for dear life. I do agree with you that some blame goes to the manufacturer, especially here in the U.S., money and greed rules here and there’s not much we can do about it. However, there needs to be more education for doctors on the meds they prescribe. Almost every doctor that prescribes every medication will say, there’s little to no side-effects. It has happened to me on just about every medication I take (and I take a lot) and every doctor I see. Then, when I start getting side-effects and look up the drug online, lo and behold, there are the side-effects listed right there!
Regardless of all that I have gone through, this treatment was necessary and I would most likely be dead by now if I hadn’t started the treatment. So doctors have to weigh what must take precedence and saving my life was probably more important than dealing with side-effects. Perhaps, if I had started treatment much earlier, I would not have gone through so much. So I have to take part of the blame as I just didn’t understand the impact not doing treatment before a diagnosis of cirrhosis, portal hypertension, esophageal varices, ascites, etc. was going to have on my future.
There are many of us that may feel your angst and have had to deal with tough situations but please be kind to our experts and professionals in this community. They have no part in any nefarious agenda or any financial gain. In fact, they volunteer their personal time to give us information and even grant peace to many who just get diagnosed and believe their life is going to end, when in reality, most will live a pretty normal life with the aid of a pill a day.
Try to be at peace and be encouraged that you are now part of a community that suffers with you and hopes for a cure along side you and is appreciative for the experts that care for us all.