Post Treatment Health Issues
It is with caution that I am writing this, and it is because I never want to alarm people who are considering treatment, in treatment, or those who have recently completed treatment.
As many of you will be aware, the older treatment was grueling in it’s side effects and for many it included long-term health issues after treatment.
As I have shared before, I treated for 48 weeks with interferon and ribavirin. I developed something called neuropathy during treatment and I still have it years later. I am cured of hepatitis c and I am able to manage the neuropathy with drug therapy, but I am not alone in having issues related to treatment. I also had high A1C levels for two years after completing therapy, which indicated I was pre-diabetic. The A1C tests since have returned to normal range after I made changes in my diet and level of activity.
There are a number of health problems that the old therapy caused. Some people have thyroid issues, mental health, neurological, autoimmune disorders and a number of conditions that are mostly because of their interferon therapy, as research and anecdotal stories have suggested. Interferon is something our body produces on it’s own. The use of interferon in treating hepatitis c, as it is used in other diseases, is meant to boost our immune response.
As I have seen, and heard, a significant number of people do experience long-term health problems they connect with their interferon therapy.
Fortunately it looks like this therapy is a thing of the past, at least that is the hope.
Treating physicians have traditionally been reluctant to deal with these post-treatment health concerns and usually we are left to our primary physician’s care to manage them. They typically know little about the damage interferon can cause. What are we left with? Treating symptoms and management of chronic conditions seems like the only options available. This is the case with my own health post-treatment, years after completing therapy. In my own investigations it appears that ribavirin is looked at in combination with interferon and other HCV therapy only, as far as any research I am aware of. There is a long list of side effects for both of these drugs and ribavirin is still in use today in combination with Direct Acting Antivirals.
With new treatments that do not include interferon, and in many cases don’t include ribavirin, we have new concerns and questions. Are the side effects so easy as to not merit concern? Whenever someone asks me about side effects with new therapies I respond with what I hear from people who are treating or have treated with these drugs. At one extreme people say they have not felt better in a long time-in therapy. At the other end of the spectrum people say they feel awful, but most are in the middle with few side-effects and generally not nearly as severe as we saw with the older therapy.
This would lead some of us to think that any long-term issues may be greatly diminished with new therapies. It is early days, and I do not want to cause alarm or needless worry for anyone.
Anecdotally, I can tell you that we are hearing from some people who have treated with new drugs that are now cured, and some of them have ongoing complaints they did not have prior to their treatment. Their concerns are not always related to their liver health, but in some case are undoubtedly linked. There is no real-world data to support much more than saying that there are going to be some issues for some people that may be related to their treatment with new highly curative treatments for HCV.
I think we need more time and more research, and it is my hope that this will shed light on why, which speaks to how we may be able to test in advance so that personalized treatment can be delivered in the future.
In the meantime I recommend that people report any ongoing concerns both during and after you treat, no matter what therapy you receive.
A cure has always been and remains the prize, and we should not diminish the importance of this as being an important goal, but I always encourage people to inform themselves before embarking on treatment. Ask questions, do research, talk to others within the peer community as well as your healthcare provider. I know some of you will do this, and for others you will not, and this is your decision, but being informed gives you power, and this is after all, all about you.