Aa
Anybody have any positive experience with tx?
Newbie here. I am starting Peg-Intron/Ribavirin tonight and dread it like you can't believe. I am Geno 1, stage 3 and "trending rapidly to chirrosis" as the doc put it. My hubby is blind, I am the one working and taking care of everything so the thought of being down for the count just terrifies me. All the posts regarding treatment seem so negative... has there been anybody who has been able to maintain a pretty physically demanding job and active lifestyle? The doc said hydration would keep the side effects to a minimum and that I should get used to it after a couple of injections. I don't have the luxury of waiting on a new treatment to be approved since I already have a pretty burnt out liver and all the nasty symptoms that go with it. I don't have very much faith that the treatments will rid me of this since I am a geno 1 with a viral load of nearly 17 million but what do you do? I am trying to get a better attitude but for now I am just ticked off at life. I know there is always someone worse off than me so I shouldn't whine or complain but man, I am so tired of dealing with all this already and I have only been in the diagnosis, tests, doc visits circus for a couple of months now. I have the utmost respect for you guys that have hung in there so well despite all the **** that is laid on you. If anybody has any soothing "it won't be that bad" kind of advice, I could sure use some. Then again I guess I might as well know what I am in for. Thanks, and enjoyed reading the posts.
Hey Missy, the TX can be tough, I had to discontinue at 10 wks, but I'm geno type 1 had a VL of over 12 million, and as of two weeks ago it was below 1000 (they don't tell me the real number ) , but they continue,, my worst sx was roids untill last week,, I got slammed with a weeping rash all over my body, ears nose mouth, everywhere. but they are continuing my interferon and rib therapies. I am hopefull, because what other choice do we have? I have a brother who started his treatment the same week as I did, he's doing fantastic, he credits it to his attitude and exercise. He took a long term disability from work, exercises everyday, sleeps in gets lots of water, is doing super,, there is hope, take some relaxing time for yourself , god bless. dobbie
Hi Missy, I'm Missy.
I'm about to wrap up my second round of treatment on April 21. I have gone 72 weeks this tim. I did 48 weeks previously and relapsed. Treatment for me is tolerable and I do pretty o.k. so I guess that's a little good news, eh?
Missy
I'm about to wrap up my second round of treatment on April 21. I have gone 72 weeks this tim. I did 48 weeks previously and relapsed. Treatment for me is tolerable and I do pretty o.k. so I guess that's a little good news, eh?
Missy
Positive experiences with Tx? Other than "it's working!", I can't really think of any. Of course, that should be enough! My experience is, that while it's no picnic, it's not as bad as I had anticipated. Way less bad, in fact. There are indeed people that have no sides. The one I feared the most probably, is brain fog. I'm in school part time, and will be taking everything at the Master's level starting in the fall, didn't happen to me, at least not yet (I'm 6 weeks in). I get paid to think these days, so that could have been a bad thing on that note, too. I had waited a couple years, hoping for new treatments, too. I ended up on a straight Peg/Riba arm of a clinical trial. So much for new drugs. I think my decision to treat now may have come at the right time, because my last VL before treatment was pretty well over 2 mil. after hanging around 500 or 600 thousand for years. It was 97,000 at 4 weeks, so looks like it's working, and that's enough to keep me going! My best advice to give, and one I received from a friend who cleared many years ago, is make sure you get enough rest. I mean prioritize it. My priorities are work, school, and getting enough sleep. The kid can eat microwave dinners and sandwiches. The hydration thing is big, too. Lots of H 2O! I put lemon or lime in it to make it taste better. You're in the right place, people here have many and varied experiences and will support you throughout this process! Best to you and keep us posted.
If we told you you were going to glide right through this and it would be great, we wouldn't be doing you much good. We've all seen too many people who weren't told enough about what to expect and then when side effects happened, it hit them just that much harder because they weren't mentally prepared for it and were blindsided. I don't want to see that happen to you.
Treatment WILL impact you. How much remains to be seen. Almost everyone has some level of fatigue that they need to deal with, which means keeping your energy for the most important things and resting up as much as you can around those things. It would be better preparation for you if you expect that you will be doing only what's most important over this next year and everything else is gravy. Don't stop doing things because you MIGHT have side effects. Just be prepared to drop them if you have to. Have a backup plan and be prepared to use it if you need to.
Your husband is blind but I'm sure he's not helpless. I would suggest that you talk together about how to adjust things over the next year so that you can both roll together with what might come your way. It will be better if he adjusts his expectations for you while you're on treatment instead of expecting that everything will remain the same as before.
I worked fulltime while on treatment and aside from appointments, only missed 2-1/2 days of work. My work is mentally demanding and I think that helped keep my mind from getting too foggy. Having said that, I had various backup plans ready if I wasn't able to work, a few times thought I might have to use them and just grateful it never came to that. It also helps to occupy yourself with what you can to keep your mind off treatment as you will have to focus on yourself and your treatment enough as it is. I took evening courses most of the time I was on treatment. If there was a social activity that I wanted to participate in, I planned plenty of rest around it. And there were also plenty of times when I just had to say no and that was okay.
This forum is a great support. Nobody quite understands what it's like to go through treament like those who are doing it or have done it. There are many people here who will have ideas for how to deal with whatever side effects you may encounter and will encourage you through your rough patches. You will definitely not be alone.
Hope that helps. Good luck to you.
Trish
Treatment WILL impact you. How much remains to be seen. Almost everyone has some level of fatigue that they need to deal with, which means keeping your energy for the most important things and resting up as much as you can around those things. It would be better preparation for you if you expect that you will be doing only what's most important over this next year and everything else is gravy. Don't stop doing things because you MIGHT have side effects. Just be prepared to drop them if you have to. Have a backup plan and be prepared to use it if you need to.
Your husband is blind but I'm sure he's not helpless. I would suggest that you talk together about how to adjust things over the next year so that you can both roll together with what might come your way. It will be better if he adjusts his expectations for you while you're on treatment instead of expecting that everything will remain the same as before.
I worked fulltime while on treatment and aside from appointments, only missed 2-1/2 days of work. My work is mentally demanding and I think that helped keep my mind from getting too foggy. Having said that, I had various backup plans ready if I wasn't able to work, a few times thought I might have to use them and just grateful it never came to that. It also helps to occupy yourself with what you can to keep your mind off treatment as you will have to focus on yourself and your treatment enough as it is. I took evening courses most of the time I was on treatment. If there was a social activity that I wanted to participate in, I planned plenty of rest around it. And there were also plenty of times when I just had to say no and that was okay.
This forum is a great support. Nobody quite understands what it's like to go through treament like those who are doing it or have done it. There are many people here who will have ideas for how to deal with whatever side effects you may encounter and will encourage you through your rough patches. You will definitely not be alone.
Hope that helps. Good luck to you.
Trish
I think it's much better to know what can be expected. It helps you cope.
My first shot I only had a very bad headache for a couple days. I think drinking all the water helped with that as it soon passed.
I was pretty bad the first 9 weeks and missed a couple days of work almost weekly. But started feeling better after that and by week 12 seem to have leveled out and I'm so happy about that. One thing that most of these folks will tell you is to learn to pace yourself. That was difficult for me and all of a sudden I was feeling bad and thought I was going to drop. You really have to pace yourself and like lalapple stated in her post plan for events. I actually planned the entire treatment as far as family events, holidays, business travel, etc.
My first shot I only had a very bad headache for a couple days. I think drinking all the water helped with that as it soon passed.
I was pretty bad the first 9 weeks and missed a couple days of work almost weekly. But started feeling better after that and by week 12 seem to have leveled out and I'm so happy about that. One thing that most of these folks will tell you is to learn to pace yourself. That was difficult for me and all of a sudden I was feeling bad and thought I was going to drop. You really have to pace yourself and like lalapple stated in her post plan for events. I actually planned the entire treatment as far as family events, holidays, business travel, etc.
I hope that your first shot was kind and you are off and running towards SVR.
Everyone has a different experience. For me it hasn't been that bad. I am in week 32 (or 31--I forget) of 48. And other than fatigue, my sx have all been light.
I work part time and go to school part time. I have been known to take a cat nap at work, tho and sleep for an hour or 2 after school.
For me-the key to the sx is to treat them immediately...don't mess around at all because they can get out of hand. If you have a rash, mouth sores or anything that makes you uncomfortable, let the doc know so you can get some relief quickly.
I also find that drinking water is very important. These drugs dry you out pretty good. I can tell if I haven't had enough water because I will get a headache and feel krappy. The good thing is that it all goes away soon after drinking.
Listen to your body. You will soon learn how to pace yourself. Sometimes you can push thru the fatigue.....sometimes you just need to rest. You will quickly re-prioritize (sp?) things....get the important things done and leave the vaccuming for later, lol!
The hair loss-for me-has been more of a general thinning. No one but me and my hairdresser would even know. I have continued to color my hair, but I did cut it into a blunt cut to make it look fuller. It isn't constant either. I lost some in the teens...and weeks 20-22 seemed like the worst. I don't "do" it so much like I used to...just trying to be kind to it right now.
Ya, I agree with meakea....it's pretty much business as usual, only in the back of my mind I am always thinking I'm tired.
Attitude is huge. SVR is worth it.
Please let us know how your first shot went. I wish ya the best =)
Everyone has a different experience. For me it hasn't been that bad. I am in week 32 (or 31--I forget) of 48. And other than fatigue, my sx have all been light.
I work part time and go to school part time. I have been known to take a cat nap at work, tho and sleep for an hour or 2 after school.
For me-the key to the sx is to treat them immediately...don't mess around at all because they can get out of hand. If you have a rash, mouth sores or anything that makes you uncomfortable, let the doc know so you can get some relief quickly.
I also find that drinking water is very important. These drugs dry you out pretty good. I can tell if I haven't had enough water because I will get a headache and feel krappy. The good thing is that it all goes away soon after drinking.
Listen to your body. You will soon learn how to pace yourself. Sometimes you can push thru the fatigue.....sometimes you just need to rest. You will quickly re-prioritize (sp?) things....get the important things done and leave the vaccuming for later, lol!
The hair loss-for me-has been more of a general thinning. No one but me and my hairdresser would even know. I have continued to color my hair, but I did cut it into a blunt cut to make it look fuller. It isn't constant either. I lost some in the teens...and weeks 20-22 seemed like the worst. I don't "do" it so much like I used to...just trying to be kind to it right now.
Ya, I agree with meakea....it's pretty much business as usual, only in the back of my mind I am always thinking I'm tired.
Attitude is huge. SVR is worth it.
Please let us know how your first shot went. I wish ya the best =)
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