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Post Treatment Health
Hi Folks,
I'm doing a lot of obsessive Medhelp reading, and I'm not seeing much posted on people feeling better after the treatment. I'm starting to freak myself out a bit because I really am hoping for relief once I'm done with treatment.
I'm doing 48 weeks of INF/Rib + procrit. I have 8 more weeks to go.
Any positive experiences of people feeling better after treatment? I realize that some people suffer from Post Interferon Syndrome. But is that rare or common?
By the way, the rash has spread to my face, especially my eyelids. It's kind of a drag.
I'm doing a lot of obsessive Medhelp reading, and I'm not seeing much posted on people feeling better after the treatment. I'm starting to freak myself out a bit because I really am hoping for relief once I'm done with treatment.
I'm doing 48 weeks of INF/Rib + procrit. I have 8 more weeks to go.
Any positive experiences of people feeling better after treatment? I realize that some people suffer from Post Interferon Syndrome. But is that rare or common?
By the way, the rash has spread to my face, especially my eyelids. It's kind of a drag.
Yes there are those whose lingering side effects become a thing of the past. I for one am doing better and better. I treated 48 weeks with interferon and ribavirin, was a Gt3a.
It has taken 7 months to get here and at times I thought I had ruined my life, and would never heal. A lot of times I would allow others pain and suffering to become mine, that was a mistake.
Treatment was rough, but the pay off far out weights what my future was before treatment.
Good luck and best wishs
Tim
It has taken 7 months to get here and at times I thought I had ruined my life, and would never heal. A lot of times I would allow others pain and suffering to become mine, that was a mistake.
Treatment was rough, but the pay off far out weights what my future was before treatment.
Good luck and best wishs
Tim
"Yeah in many ways this also seems like some sort of spiritual journey"
____________________________________
I will second that. It's a life changer in many ways. Post on the social side like Dee suggested. Stay connected to the forum and you will find you are far from alone in the way you feel. You can do this... your almost there.
: )
____________________________________
I will second that. It's a life changer in many ways. Post on the social side like Dee suggested. Stay connected to the forum and you will find you are far from alone in the way you feel. You can do this... your almost there.
: )
I will check out the hep social. Haven't ventured there much.
Thank you all for your answers. So much.
Yeah in many ways this also seems like some sort of spiritual journey. Going to the ends of what I think I can handle, and then it gets even harder than that. Feeling so bad I have no desire to talk to anyway or get support through this. Then realizing I can't do this without support...
Finding that I have strength I didn't know I had. Watching how my mind works and thinks and processes (except for when my mind it busy attacking itself..), how I can handle different physical discomforts and pain. It really is quite a journey. Got 8 weeks left, 7 injections left. I'm on the home stretch. The end is now in sight. Yesterday I was so down I thought, I'll just quit the treatment, and then if I don't reach SVR then I'll do the new treatment later.. but really, I just want to get it over with. I made it this far, I can finish.
So nice that so many of you are here "paying it forward".
And isn't it wonderful that people will not have to do INT/ribavirin now. Soon no one will need to suffer this again. How some of you have done multiple treatments, I dont know how you did it.
I had a friend die a few years back, he did maybe 3 treatment rounds. For years he was so ill, in and out of the hospital, and on a liver transplant list but the new liver never came. I think his son was about 13.
Anyway. thanks everyone for taking the time to respond. I wish you all well.
Thank you all for your answers. So much.
Yeah in many ways this also seems like some sort of spiritual journey. Going to the ends of what I think I can handle, and then it gets even harder than that. Feeling so bad I have no desire to talk to anyway or get support through this. Then realizing I can't do this without support...
Finding that I have strength I didn't know I had. Watching how my mind works and thinks and processes (except for when my mind it busy attacking itself..), how I can handle different physical discomforts and pain. It really is quite a journey. Got 8 weeks left, 7 injections left. I'm on the home stretch. The end is now in sight. Yesterday I was so down I thought, I'll just quit the treatment, and then if I don't reach SVR then I'll do the new treatment later.. but really, I just want to get it over with. I made it this far, I can finish.
So nice that so many of you are here "paying it forward".
And isn't it wonderful that people will not have to do INT/ribavirin now. Soon no one will need to suffer this again. How some of you have done multiple treatments, I dont know how you did it.
I had a friend die a few years back, he did maybe 3 treatment rounds. For years he was so ill, in and out of the hospital, and on a liver transplant list but the new liver never came. I think his son was about 13.
Anyway. thanks everyone for taking the time to respond. I wish you all well.
Hello, you got some great answers above.
Everyone is an individual with differing responses to tx as well as after.
I think it depends on the tx, genotype, how long you had it, how damaged your liver is.
On the post tx you will see people looking for help for problems they are having 6 months and more after tx.
The people who are not having problems are probably not posting on MH any more or they may be on the Social side or current events.
Here is the social side in case you have not seen it.
http://www.medhelp.org/forums/Hepatitis-Social/show/76
I had to treat twice before getting to UND, SVR and am now considered cured for over 2 years.
I am happy that I have gotten to a place where I feel better.
I come here because there were so many people who helped me get through the diagnosis, tx and beyond. I try to help people as I was helped. Kind of a paying it forward It takes time after you have finished tx to begin to recover. I was advised by my doctor that it could take up to 6 months for the Riba to leave my system.
So, I tried to think that after those 6 months I would being the recovery.
I noticed a huge improvement after finishing tx, who wouldn't feel better? :)
Try to drink a lot of water.
If you go to the Hepatitis C forum you can get lots of help for any sx you might be having
You are on the home stretch now, Congratulations! I found that I was stronger than I ever knew I could be. Like Philipp said, this too shall pass, take it one day at a time and one day this will be a distant memory. One thing I have is hope. I have also learned so much from my experience.
Good luck :)
Dee
Everyone is an individual with differing responses to tx as well as after.
I think it depends on the tx, genotype, how long you had it, how damaged your liver is.
On the post tx you will see people looking for help for problems they are having 6 months and more after tx.
The people who are not having problems are probably not posting on MH any more or they may be on the Social side or current events.
Here is the social side in case you have not seen it.
http://www.medhelp.org/forums/Hepatitis-Social/show/76
I had to treat twice before getting to UND, SVR and am now considered cured for over 2 years.
I am happy that I have gotten to a place where I feel better.
I come here because there were so many people who helped me get through the diagnosis, tx and beyond. I try to help people as I was helped. Kind of a paying it forward It takes time after you have finished tx to begin to recover. I was advised by my doctor that it could take up to 6 months for the Riba to leave my system.
So, I tried to think that after those 6 months I would being the recovery.
I noticed a huge improvement after finishing tx, who wouldn't feel better? :)
Try to drink a lot of water.
If you go to the Hepatitis C forum you can get lots of help for any sx you might be having
You are on the home stretch now, Congratulations! I found that I was stronger than I ever knew I could be. Like Philipp said, this too shall pass, take it one day at a time and one day this will be a distant memory. One thing I have is hope. I have also learned so much from my experience.
Good luck :)
Dee
i would say, don't worry too much. it likely all passes after treatment.
i did peg INF/riba once in 2005 and just recently INF triple w/ telaprevir.
i had tough rides by pretty much any standard. both therapies where aborted due to side-effects becoming critical, esp hb levels.
but i also had tons of other stuff, like nausea, vomiting, headaches, fever, constant disgusting taste in the mouth, pains, even haemorrhoids,
recently, my treatment was aborted because i had so many transfusions that it was getting to a critical threshold (very high iron levels and antibodies).
couple of months later and a bit of a defiant attitude and i feel like superman. it's quite nice coming out of that drag, having survived and feeling life's energy coming back.
in my opinion, the most important is not to accept offers of pity from people because that way you reward feeling lousy and bitching about it.
i'm saying that because at the time it can feel like permanent damage but if you take it as training or something like that, you will not only get better automatically afterwards but also remember it as an interesting and rewarding experience. i learned so much from those times; i don't want to miss them now.
i should expect that very soon you'll hardly remember the hardship or only like a distant dream. good luck!
i did peg INF/riba once in 2005 and just recently INF triple w/ telaprevir.
i had tough rides by pretty much any standard. both therapies where aborted due to side-effects becoming critical, esp hb levels.
but i also had tons of other stuff, like nausea, vomiting, headaches, fever, constant disgusting taste in the mouth, pains, even haemorrhoids,
recently, my treatment was aborted because i had so many transfusions that it was getting to a critical threshold (very high iron levels and antibodies).
couple of months later and a bit of a defiant attitude and i feel like superman. it's quite nice coming out of that drag, having survived and feeling life's energy coming back.
in my opinion, the most important is not to accept offers of pity from people because that way you reward feeling lousy and bitching about it.
i'm saying that because at the time it can feel like permanent damage but if you take it as training or something like that, you will not only get better automatically afterwards but also remember it as an interesting and rewarding experience. i learned so much from those times; i don't want to miss them now.
i should expect that very soon you'll hardly remember the hardship or only like a distant dream. good luck!
Maybe I'm lucky. I did treatment twice. The second time (successful) with pre-dosing riba, higher riba during treatment and double Peg shots for several weeks in the early weeks. Also procrit-like stuff and neupogen along the way. I'd have to say that I feel about the same after the treatments than I did before treatments. I had early cirrhosis and really didn't feel any HCV effects before and none after. When I started was in late 50's so I was starting to feel a little creaky but never ascribed that to HCV. I feel normal, I guess, for being in early 60's now.
Hi Everyone,
Thanks everyone for the comments. It's why I like Medhelp and not the other forums. You give thoughtful, informed responses, and are much more than a "support group".
I know I will feel a little bit better after treatment, because every morning that I forget to take ribavirin first thing in the morning, I'm like, Hey, I don't feel so bad this morning. And then I remember, Oh, that's because I haven't taken any ribavirin yet.
Frank I have to agree with you on the "staying positive" and making plans for the day. It's so easy to fall into a routine of not doing much, but something starts to happen to my mental state when I do nothing at all (and it's not a good thing). I find if I force myself to do something useful I feel so much better. The aches and pains and all the other stuff don't take so much of a "front seat".
And I plan on keeping the same motivation after treatment, whether I feel 100% better or not. I've had this virus since 1986. I'm 48. And I want to have a life virus free.
I know there has got to be damage happening to my body with this treatment. Who knows if it's permanent but it's like an assault on every possible level. But I wasn't feeling that great before treatment, and so there really is only one way to try to move ahead, and that's to get rid of this virus.
Sorry for those of you who have PIS. You are in my thoughts and prayers.
Thanks everyone for the comments. It's why I like Medhelp and not the other forums. You give thoughtful, informed responses, and are much more than a "support group".
I know I will feel a little bit better after treatment, because every morning that I forget to take ribavirin first thing in the morning, I'm like, Hey, I don't feel so bad this morning. And then I remember, Oh, that's because I haven't taken any ribavirin yet.
Frank I have to agree with you on the "staying positive" and making plans for the day. It's so easy to fall into a routine of not doing much, but something starts to happen to my mental state when I do nothing at all (and it's not a good thing). I find if I force myself to do something useful I feel so much better. The aches and pains and all the other stuff don't take so much of a "front seat".
And I plan on keeping the same motivation after treatment, whether I feel 100% better or not. I've had this virus since 1986. I'm 48. And I want to have a life virus free.
I know there has got to be damage happening to my body with this treatment. Who knows if it's permanent but it's like an assault on every possible level. But I wasn't feeling that great before treatment, and so there really is only one way to try to move ahead, and that's to get rid of this virus.
Sorry for those of you who have PIS. You are in my thoughts and prayers.
Why freak out over the post of people who have ended treatment and then gone thru a year or more to clear the meds only to have PIS or something??? when I am sure you would not match hardly any medical history of even one let alone a chemical match of one case!
You made a choice to treat and are nearing the end! You must think positive ALWAYS! I have been living in utter hell - all thru 72 weeks of treatment and now thru nearly 6+ (really lost count) of PIS but I wake up and try to be very positive about my day and how I am going to do sooooo many things today (I usually only end up doing a few things but I try)... It is the only way to get thru ones life. Wake up with a smile on your face and keep it on making others wonder what secret you know!!!
If I was able to turn back time I would certainly do things differently. I do believe things happen for a reason so I was meant to treat when I did... and PIS is what it is.
One can say that pooh is correct but some of what is said can also be of the opposite. I live in a very small town and on my very small street there are two of us with PIS. My neighbor and I have been suffering for years and she doesn't know much about using a computer - so how many out there have PIS go on unheard?
best of luck to one and all,
f
You made a choice to treat and are nearing the end! You must think positive ALWAYS! I have been living in utter hell - all thru 72 weeks of treatment and now thru nearly 6+ (really lost count) of PIS but I wake up and try to be very positive about my day and how I am going to do sooooo many things today (I usually only end up doing a few things but I try)... It is the only way to get thru ones life. Wake up with a smile on your face and keep it on making others wonder what secret you know!!!
If I was able to turn back time I would certainly do things differently. I do believe things happen for a reason so I was meant to treat when I did... and PIS is what it is.
One can say that pooh is correct but some of what is said can also be of the opposite. I live in a very small town and on my very small street there are two of us with PIS. My neighbor and I have been suffering for years and she doesn't know much about using a computer - so how many out there have PIS go on unheard?
best of luck to one and all,
f
"Any positive experiences of people feeling better after treatment?"
Yes, I feel considerably better since I did treatment. I did triple med treatment with 12 weeks of Incivek and 48 weeks of Interferon and Ribavirin. I felt like crap on treatment and had a ton of side effects. I finished treatment in August 2012 and feel very good now. It took a few months for the side effects to gradually disappear, but I feel very good now.
In addition, I had several extrahepatic symptoms prior to treatment (gradually increasing blood sugar, severe fatigue, Systemic Vasculitis, sudden onset allergies and asthma, unexplained weight gain, and others). Since ending treatment, the severe fatigue is completely gone. I have tons of energy and motivation and pep. My blood glucose is now very normal. I am losing weight. My allergies and asthma are not a problem since treatment. I feel really good, better than I have felt in many years.
"I realize that some people suffer from Post Interferon Syndrome. But is that rare or common?"
------------------------------------------
Some people do have residual problems from treatment, but it is not overly common.
Hepatitis C can cause a multitude of problems. Many people think that after treatment all of those problems will disappear. However, that is not always true. Some of the problems that Hepatitis C has triggered or caused, such as Autoimmune problems or Type II Diabetes or Thyroid problems, etc., can linger even after treatment is finished. These problems were not caused by treatment, but rather were caused by the Hepatitis C itself. So, while many problems will resolve after treatment, some problems will linger even after one is cured of Hep C.
However, as I mentioned, some people do have lingering effects of Hepatitis C treatment. Interferon is a very strong drug and can cause lingering issues in some people, often Autoimmune related. Again, this is not the norm. Most people do feel better after treatment.
Often, on a forum, one sees a lot of posts about the problems people are having after treatment. That is because the people having problems are posting. Most people who are doing great and feeling great are no longer on the forum posting that they feel great.
Give yourself some time to recover after treatment. Most likely you will feel much better than before you treated.
Best of luck.
Yes, I feel considerably better since I did treatment. I did triple med treatment with 12 weeks of Incivek and 48 weeks of Interferon and Ribavirin. I felt like crap on treatment and had a ton of side effects. I finished treatment in August 2012 and feel very good now. It took a few months for the side effects to gradually disappear, but I feel very good now.
In addition, I had several extrahepatic symptoms prior to treatment (gradually increasing blood sugar, severe fatigue, Systemic Vasculitis, sudden onset allergies and asthma, unexplained weight gain, and others). Since ending treatment, the severe fatigue is completely gone. I have tons of energy and motivation and pep. My blood glucose is now very normal. I am losing weight. My allergies and asthma are not a problem since treatment. I feel really good, better than I have felt in many years.
"I realize that some people suffer from Post Interferon Syndrome. But is that rare or common?"
------------------------------------------
Some people do have residual problems from treatment, but it is not overly common.
Hepatitis C can cause a multitude of problems. Many people think that after treatment all of those problems will disappear. However, that is not always true. Some of the problems that Hepatitis C has triggered or caused, such as Autoimmune problems or Type II Diabetes or Thyroid problems, etc., can linger even after treatment is finished. These problems were not caused by treatment, but rather were caused by the Hepatitis C itself. So, while many problems will resolve after treatment, some problems will linger even after one is cured of Hep C.
However, as I mentioned, some people do have lingering effects of Hepatitis C treatment. Interferon is a very strong drug and can cause lingering issues in some people, often Autoimmune related. Again, this is not the norm. Most people do feel better after treatment.
Often, on a forum, one sees a lot of posts about the problems people are having after treatment. That is because the people having problems are posting. Most people who are doing great and feeling great are no longer on the forum posting that they feel great.
Give yourself some time to recover after treatment. Most likely you will feel much better than before you treated.
Best of luck.
Kf210
I have done the same thing. It is hard to find feel better after clearing comments and information. That being said I can tell you I have read many accounts of people living more happy ,healthier, energized lives after clearing.
The main thing here is to reduce the chances of needing a liver transplant ,living with the effects of a damaged liver, getting liver cancer or dying.
That's enough to want to clear the virus. Feeling better after clearing is a bonus.
Sorry about the rashes. I have found Gold bond medicated lotion in the green bottle to be the best lotion to treat the rash.
Most people do not have bad post treatment effects. Some have mild effects and some not at all.
You have a tough treatment ahead.These are strong meds no doubt.
Try reading through the regular hep c forum here for more help on getting through treatment.
Good luck and hang in there.
I have done the same thing. It is hard to find feel better after clearing comments and information. That being said I can tell you I have read many accounts of people living more happy ,healthier, energized lives after clearing.
The main thing here is to reduce the chances of needing a liver transplant ,living with the effects of a damaged liver, getting liver cancer or dying.
That's enough to want to clear the virus. Feeling better after clearing is a bonus.
Sorry about the rashes. I have found Gold bond medicated lotion in the green bottle to be the best lotion to treat the rash.
Most people do not have bad post treatment effects. Some have mild effects and some not at all.
You have a tough treatment ahead.These are strong meds no doubt.
Try reading through the regular hep c forum here for more help on getting through treatment.
Good luck and hang in there.
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