Aa
The Long-Term Side Effects after Tx Thread, for all
I wanted to post a thread that could serve as a main point of communication for all of us who have treated and suffered serious, life altering side effects AFTER finishing therapy. Hopefully questions, issues, personal experiences, and the feedback each of us has received from doctors can all be a part of this thread. There seem to be two or three new separate threads each week relating to this subject, and I am not sure anyone gets the benefit of the postings on all of the related threads. Maybe we can each use THIS thread to deal with this subject, and then all the inputs might be accessible to everyone interested, all on one single thread. It also would be a good way to get a better idea of the numbers of us affected by this problem. And specifically this thread pertains only to side effects experienced AFTER completing tx, that were NOT apparent before doing the therapy.
Feel free to comment, ask questions, or state your own personal experience with this issue. And lurkers out there, who have not joined in the forum conversations, please do feel free to jump right in. It would be very helpful for all of the affected group to be able to compare notes, and connect with people who have a similar challenge.
Feel free to comment, ask questions, or state your own personal experience with this issue. And lurkers out there, who have not joined in the forum conversations, please do feel free to jump right in. It would be very helpful for all of the affected group to be able to compare notes, and connect with people who have a similar challenge.
".. as they refine the DAAs for HCV the target will be more specific and the side effects will be reduced."
That's an interesting assumption.
http://www.msnbc.msn.com/id/40536739/ns/health-cancer/
That's an interesting assumption.
http://www.msnbc.msn.com/id/40536739/ns/health-cancer/
We lament the extremes people go to when complaining about the perceived results of interferon and their lack of rationality that threatens valid information from being taken seriously. To me, the other extreme that is lamentable is to not talk about it at all as if that's some kind of virtue that demonstrates the degree to which one appreciates the gift of SVR. There always seem to be some who resort to that extreme in these discussions. If you have ever asked or drawn upon the experiences of others, whether in clinical studies or anecdotal evidence from a group of persons, to help you make your own decision on when, or if, to do treatment or continue treatment, or to manage your health post treatment, you are biting the hand that feeds you to take such a position.
Despite the fact that our health conditions are so individual that it's difficult to determine causal effects, it's clear that when you compile enough data from enough patients and treating physicians, they are able to sift through the variables and come up with conclusions that have resulted in formal updates to information on drugs that are already on the market. We can thank reports from patients and treating doctors for new information that comes to light about approved drugs on the market that helps us and our doctors make good decisions for us as individuals. What is good for one is not good for another and this is all based on what we know about our own individual health situation and what we know of the drugs we are taking. We now talk about insulin resistance for example as something to consider when embarking upon treatment. The more we know, the more effectively we can strategize towards achieving that successful outcome we all want for ourselves and for others.
Hopefully people keep talking about the effects of these or ANY drugs they are taking. Hopefully they report them to their physicians. Hopefully those physicians who see a trend amongst their patients report them to the drug-regulating bodies who can then see that the public is properly informed.
While it's true that we know enough about interferon to know that post treatment leftovers can be like a box of chocolates, and while it's true that many of us would choose to go forward even knowing what the risks are, it's still of extreme benefit to KNOW what those risks are WHEN possible and to manage treatment accordingly. Much of the monitoring over the course of treatment that occurs is because of what is known about the potential side effects of these drugs and some damage can be minimized or avoided because that monitoring takes place and issues can be more quickly responded to and addressed as a result. That occurs when information is shared.
There does not seem to be an effort to collectively gather data on the long-term side effects of interferon. I would see that as a useful exercise that has nothing to do with valuing my SVR. I would see that as contributing to the knowledge available to people to take into consideration when they and their doctors are trying to make good decisions for themselves based on what is known and in combination with their existing health issues.
It's an odd situation to me that we're quick to offer information on all we know while someone is considering treatment, while someone is going through treatment, whether clinical or anecdotal and yet when someone is finished treatment, we stop the dialogue as if that's somehow denigrating your SVR to talk about that.
I frankly found it more tolerable to know that a number of others experienced depression post-treatment as I did. I was grateful for their courage in speaking up. I felt less alone and I felt that "this too shall pass" and I hung in there and weathered it and it did indeed pass. I was then able to turn around and offer support to others who didn't think they should be experiencing this post-treatment. I'm also grateful for the folks who have shared that they also have joint pain post treatment where before there was none. It didn't or doesn't make me value my SVR any less. It actually helps me tolerate my joint pain more as I hobble down the stairs, being fully aware of what the alternative would be and I accept this as part of the price to pay for my SVR and all that means. So, in turn, when someone asks "has anyone experienced this?" - I like to give back to help others manage the challenges that come with treatment the way I've been helped.
I lament the extremes on both sides of this - to blame everything but the kitchen sink on interferon or to consider it a virtue to put up and shut up - and think both do a disservice to being able to have the knowledge to manage the whole journey of treatment including post with these drugs until something better comes along.
Despite the fact that our health conditions are so individual that it's difficult to determine causal effects, it's clear that when you compile enough data from enough patients and treating physicians, they are able to sift through the variables and come up with conclusions that have resulted in formal updates to information on drugs that are already on the market. We can thank reports from patients and treating doctors for new information that comes to light about approved drugs on the market that helps us and our doctors make good decisions for us as individuals. What is good for one is not good for another and this is all based on what we know about our own individual health situation and what we know of the drugs we are taking. We now talk about insulin resistance for example as something to consider when embarking upon treatment. The more we know, the more effectively we can strategize towards achieving that successful outcome we all want for ourselves and for others.
Hopefully people keep talking about the effects of these or ANY drugs they are taking. Hopefully they report them to their physicians. Hopefully those physicians who see a trend amongst their patients report them to the drug-regulating bodies who can then see that the public is properly informed.
While it's true that we know enough about interferon to know that post treatment leftovers can be like a box of chocolates, and while it's true that many of us would choose to go forward even knowing what the risks are, it's still of extreme benefit to KNOW what those risks are WHEN possible and to manage treatment accordingly. Much of the monitoring over the course of treatment that occurs is because of what is known about the potential side effects of these drugs and some damage can be minimized or avoided because that monitoring takes place and issues can be more quickly responded to and addressed as a result. That occurs when information is shared.
There does not seem to be an effort to collectively gather data on the long-term side effects of interferon. I would see that as a useful exercise that has nothing to do with valuing my SVR. I would see that as contributing to the knowledge available to people to take into consideration when they and their doctors are trying to make good decisions for themselves based on what is known and in combination with their existing health issues.
It's an odd situation to me that we're quick to offer information on all we know while someone is considering treatment, while someone is going through treatment, whether clinical or anecdotal and yet when someone is finished treatment, we stop the dialogue as if that's somehow denigrating your SVR to talk about that.
I frankly found it more tolerable to know that a number of others experienced depression post-treatment as I did. I was grateful for their courage in speaking up. I felt less alone and I felt that "this too shall pass" and I hung in there and weathered it and it did indeed pass. I was then able to turn around and offer support to others who didn't think they should be experiencing this post-treatment. I'm also grateful for the folks who have shared that they also have joint pain post treatment where before there was none. It didn't or doesn't make me value my SVR any less. It actually helps me tolerate my joint pain more as I hobble down the stairs, being fully aware of what the alternative would be and I accept this as part of the price to pay for my SVR and all that means. So, in turn, when someone asks "has anyone experienced this?" - I like to give back to help others manage the challenges that come with treatment the way I've been helped.
I lament the extremes on both sides of this - to blame everything but the kitchen sink on interferon or to consider it a virtue to put up and shut up - and think both do a disservice to being able to have the knowledge to manage the whole journey of treatment including post with these drugs until something better comes along.
"It will be interesting to see what people are saying about the new drugs fifteen years from now. It may come to pass that Interferon was only collateral in the damage factor and long term side effects.
This type of conversation will always exist with any long term drug therapy."
To some extent I believe this is true. On the other hand as they refine the DAAs for HCV the target will be more specific and the side effects will be reduced. I believe this is the case with long term use of the HIV drugs, although I am not sure.
As Willing put so well in his earlier post:
"You start with an endogenous protein evolutionarily tuned to provoke a massive anti-viral defensive response in the host, at significant cost to the host organism. You purify it, splice an add-on to make sure it evades natural degradation and stays in circulation longer. You then inject massive dosage of the stuff, at a system-wide level as opposed to the local level typical of its endogenous use. You keep doing this for insanely long periods of time - years in some cases."
Messing with the balance of our highly developed and complicated immune system is a bit different then specifically targeting a molecule like HCV
-Dave
This type of conversation will always exist with any long term drug therapy."
To some extent I believe this is true. On the other hand as they refine the DAAs for HCV the target will be more specific and the side effects will be reduced. I believe this is the case with long term use of the HIV drugs, although I am not sure.
As Willing put so well in his earlier post:
"You start with an endogenous protein evolutionarily tuned to provoke a massive anti-viral defensive response in the host, at significant cost to the host organism. You purify it, splice an add-on to make sure it evades natural degradation and stays in circulation longer. You then inject massive dosage of the stuff, at a system-wide level as opposed to the local level typical of its endogenous use. You keep doing this for insanely long periods of time - years in some cases."
Messing with the balance of our highly developed and complicated immune system is a bit different then specifically targeting a molecule like HCV
-Dave
It will be interesting to see what people are saying about the new drugs fifteen years from now. It may come to pass that Interferon was only collateral in the damage factor and long term side effects.
This type of conversation will always exist with any long term drug therapy.
This type of conversation will always exist with any long term drug therapy.
"The only answer I have found for myself is to research all this collective information as best I can, make a decision, and take responsibility for my decision. Sometimes the choice amounts to which of the evils is less harmful. "
As usual...well said Dave...and I know when you come out of this with the desired result ,you will be one to realize the price paid(hopfully minimal.... will have been well worth it)
Best....Will
As usual...well said Dave...and I know when you come out of this with the desired result ,you will be one to realize the price paid(hopfully minimal.... will have been well worth it)
Best....Will
Have an Answer?
You are reading content posted in the Hepatitis C: Post Treatment Issues Community
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
