I seriously cannot imagine another 24-48 weeks like this. I really feel like a prisoner to this and it's just my 2nd week. I get winded walking around very quickly and it's keeping me on the couch and in bed all day. I feel useless. What have you all done to get by?
I hate that you are feeling poorly. I can totally relate. I wonder the same thing...how I. The world can I keep this up? The days are not too bad, but the nighttime feeding is the worst. I just dread it with a passion. I start planning my 10pm feeding the day before so I don't have to agonize over it too much. The one thing that keeps me relatively sane is checking in to this forum. I read stories of hope, of SVR, and stories of triumph by people whose stories make mi e look like a walk in the park. Everything seems to wax and wane with side effects, etc. same thing with my mood. Venting here will help keep ou on the course.
Hang in there.
I understand how tough this is. But as Susan said, you won't necessarily feel this way throughout your entire treatment. You're going to hate me for saying this, but if there's any way you can exercise for just 20 minutes a day, you will feel better, I promise! I've had to practically force my husband to move his body some days, but he ALWAYS feels better after. Nothing strenous, maybe just a gentle walk. Getting your blood moving seems to help immensely.
You'll find great support here. You can do this, so many others have before you, just don't be afraid to ask for help when you need it - from your doctor, friends and family, and this forum. Best - Stormy
I am in week 23 (starting week 24 today with 24th inj.). I felt pretty wiped out on Incivek. I think not expecting too much in terms of energy is a good start. Some days you will have more energy and other days you may have none. I don't plan many things and don't do much either. I do try to do at least one constructive thing a day. I really got tired on Incivek and winded also. It is better now off Incivek but I won't be running any marathons any time soon.
One thing, keep a good check on your blood count. Your Hemoglobin can drop fast and it will make you feel really tired and weak if it is low. Mine never dropped below 11 but I still had a fast heart rate and felt pretty exhausted. I had my blood counts drawn every week but some do every 2 weeks. You might want to call the doc and get one soon.
As far as feeling like a prisoner, well, I have to say, I call this my lost year. I think if you try to do your best and don't have too high of expectations in terms of what you will get done, you will manage. I think a person just has to accept the fact that the drugs can make one feel pretty crappy and if one wants to get rid of the virus, a few months of feeling crappy may be what it takes. I let just about everything go (house cleaning, etc.) and do what I can. I don't plan much so I am not disappointed when I feel to crappy to do anything. I do plan a few things for my best days (for me that is Sunday and I have season tickets to the symphony and season tickets to a chamber music series on Sundays). I don't try to do anything in the eve as I am way too tired, even now, plus, frankly, the every 8 hour fat ingestion and med taking takes all of my time and energy. It does get better once you are off the Incivek. I noticed the difference almost immediately.
I think just try to get through it. Try not to think of how you don't know how you will make it another few months. Thinking months of feeling crappy is very depressing and discouraging. Take it day by day and, believe it or not, it goes fast. And, you will, feel better off the Incivek.
Incidentaly, Interferon can cause depression so if you think you are getting depressed be sure to talk with your doc and see a psychiatrist. You may need antidepressants during treatment. Many of us are on them and they do help a lot.
Keep your eye on the prize, geting rid of the virus. That is the goal and you can make it there. Best of luck.
Hang in there. Somedays I feel like a prisoner in my on body. I try to stay in the day. If you think of weeks and months to come that's when you want to give up. Set very small goals for each day. I was walking in the begining but now I can not make it down the drive way. Hbg 8.3 I am now on week 18.
keep up on that blood work!! if your tanking there are things that can be done to help...when you first tank its awful..i didn't even know what anemia was when i first started tanking...my hgb dropped from 15 to 8 in a couple weeks...once i got through the incivek the really low hgb was easier to tolerate...3 months post i'm still low at 12 but feeling pretty good...i was doing 2 cbcs a week for a while to keep track of things.. exercise didn't work for me..i was too out of it..my gf took my pulse a lot and it went way up trying to get that blood around...can you post new cbc #?....good luck...hang in there....billy
seriously cannot imagine another 24-48 weeks like this. I really feel like a prisoner to this and it's just my 2nd week
HCV can be a real tough fight for some . The meds are very powerful and thankfully so, given what we are asking them to do.
As well as some of the good ideas above,try to keep in mind that not all days or weeks will be the same . Some days you may feel fine and others the drugs will kick you around pretty good.
Also try to remember the goal of therapy is to rid yourself once and for all of a virus that if left to survive may damage your liver extensively and could lead to many serious problems down the road.
How crappy you are feeling today will be worth it when you are virus free and can live the rest of your life with a healthy liver.
Good luck and there are many folks here currently feeling the same and will be helpful to you with remedies as problems arise..
The best thing for me was being a part of this community.I got a lot of support and help with the side effects.I ended my tx with Incecek 3 weeks ago and recovering quickly.The sides can be rough but we are here to help.My worst sides were anal,dry mouth,anemia and rash.These sides can be treated so you can get through them.Some times I have to force myself to get things done.Try not to allow the meds to control you too much.Monitor your blood pressure and stay healthy.Have a blood test done soon.So hang in there.We are cheering for you.
Thanks so much everyone, really. I am late on my first bloodwork by a few days due to transportation. I found a ride there this afternoon and will post my labs asap. I feel a little better this morning...I'm wondering if since I did my shot Friday evening it hits me on Sundays the hardest? I know AD's are recommended I just really didn't want to add more pills to the mix. I tried a lot of AD's when I was younger and had to stop because the side effects weren't worth it. So now that I am having every side effect in the world from my incivek/riba/peg it seems scary to find an AD. Maybe I will try to make it to the end of Incivek, and start one. 10 more weeks of it (Incivek) As much as I want to hate this little (big) purple pill I know it is a miracle for so many people. It's jyst so hard to appreciate it sometimes when my sides kick in. I constantly remind myself it is here to save me (hopefully) from liver distruction and death.
My rash is now completely controlled..anal stuff has not been to rough because I have been eating the right things (somehow) and keeping up on the creams 2x daily. Some days my body just itches all over with no rash. Which is annoying but I can deal with it. I take benedryl to help me sleep and feel less itchy. I'm sleeping okay for being lethargic all day. YES today I promise to get uo and walk around some! Going to the labs will help with that. I know I will feel better with some movement....I guess I have to work harder on that one.
I am so happy to have found and joined this forum. You have all been so helpful and welcoming. :)
When I get my bloodwork back I will post it all..I still don't know much about low or bad levels on tx but I'm sure you will all help with that when I post. Wish me luck for a low VL or early tesponse! I'm 11 days in so it's possible.
Thanks again & well wishes,
I tried icing myself down before bed to help with the itch or walk outside till my body cooled off.I even kept clothes in my fridge to put on before bed to cool the itch.Ice packs work well to.Hope your doing better.Wishing you well and I'm cheering for you.
Good to hear the rash and other sides aren't becoming the major issue and very smart to get them under control quickly. The beginning is truely the hardest part as you try to adjust to these new meds. It can be overwhelming on some days thinking there's no way you can sustain this for the amount of time necessary. Its best to think of it as a day to day challenge, each day you make it through, one less day to the end of the week. Then suddenly that week is over and onto the next.
Getting up and moving around, whatever you can do is so much better than sitting on the couch all day long. If I feel exhausted on a given day and decide to do nothing, by the end of the day I often feel worse. If you can muster up a little energy to do something, you will be surprised at the resulting benefits. Just do what you can and realize some days will be much better than others.
Many have noticed that after the Friday evening Inf shot they feel some delay since it is time released, then have a rough Sunday/Monday following. Then each day gets a little better until the next shot and repeat all over. At least this has been my experience. Hang in there and try to do this a day at a time. We can do this. Best to you.
So sorry to hear this. I hope that having all of these kind and caring people standing with you helps.
I am only being screened for tx right now, not looking forward to it although so hoping to have a chance at a cure. It's a rather double edged sword.
My thoughts, which I no doubt may lose sight of in the midst of sheer misery during tx, are that the x number of months of misery may be adverting a possible x number of years of misery, or may extend my time and joy on this earth with friends, family, children, and grandchildren.
I can see myself (down the road) telling someone with these same words/sentiments to me, to go take a hike. Timing is everything and my words are not meant to be simplistic, but rather thinking ahead and trying to take the walk you are walking.
I will keep everyone's suggestions in mind, well actually I am writing them down, for when I have to walk in your shoes.
Take care and know you are in the thoughts and prayers of many.
Often, I force myself outside to walk while my body is saying, 'no take a nap'.
Once I get moving, I feel better. There have been days I don't take my walk, usually a day or two after my shot, but my walks have helped me immensely.
The other thing is to take your mind off how you feel.
Watch old comedies, listen to music you love.
Avoid the news, and keep it light.
If this helps any, let me tell you, I lost my first liver to hep C. You are doing this to save your liver and not to go through the experience of a transplant.
Keep the goal in mind.
Be sure to tell your doctor about all your side effects. Often they can help but they have to know.
you are right, the day after the shot is the worst. It takes about 4 days for me to start feeling halfway normal again. I'm 19 weeks into my second treatment, it has gotten easier the farther in I get, I used to just sit in the chair and moan and groan for 3 days, now it's not as bad.
You just have to take it one day at a time, when it's finally over it'll just seem like a bad dream.
For what it's worth, my doctor has indicated that the symptons generally become a little less the farther into treatment you get. That is not true, in my experience for anemia which progressed to the point of requiring intervention with Procrit. However, you need to look at this as a choice:
1. Suffer treatment now, which by the way they don't think can repeated because of mutations triggered by either Vic or Inciv.
2. Possibly die young from liver failure or liver cancer down the road.
Hang in there, this is as much a mental battle as physical.
Good comments. If love n support help, you're in good shape. I agree w/ moving around. Incivik period was a killer and then it's just a matter of the mental battle.
Many many on this site encouraged me to go just one more day, shot, set of meds, glob of fat. You can soooo do this.
Week 35 w/ 13 to go!!! UND all the way. Karen :)
You all were right..I forced myself up and out today. waking up with all your support helped me take a little more time. I did my hair and makeup for tge first time since starting tx and got out and got my labs done. I came home and cleaned my house from top to bottom (slowly) and even though I got winded at times, there were also times where I felt normal.
Thank you for the help..I was also a really great mommy today too:) I bet my 4 yr old would thank the support as well...
For anyone scared to start tx...do it now. I may feel down and out most of the time but I would never trade this for 30 or more years off my life!
I've been there and totally get it. I spent a great deal of time in the bathroom and on my couch. But I went to work every day coming home to walk up three flights of steps. Work has been my therapy. It let me focus on something other than myself. I have completed 8 months of treatment and there are bad times, really bad times and good times. Just keep your eye on the prize.
Good for you! I like your last post. Getting up and putting on make up can help a lot. I do my shot on Thursday eve and it hits me Saturday afternoon! That has become movie time. It wears off by Monday and I can get exercise in mon thur Friday even if it's just walking the dogs for a while. Anything helps. Hang in there, it gets better! Mo
There truly is so much wisdom on this forum....it truly awes me at times. That is wonderful that you had such a good and productive day and felt better. I too was feeling just like you and read a post one day from can-do- man expressing how exercise will give you more energy and follows his advice and it really does work, doesn't it? Today is one of those days for me and I am going to push myself to get out too. I am so glad I read your post today...needed some inspiration and you gave me that. As well as all the wonderful people here sharing their wisdoms and strengths. Be strong...and you will see how quickly each week does pass. Looking forward to hearing the results of your blood work!
"As far as feeling like a prisoner, well, I have to say, I call this my lost year. I think if you try to do your best and don't have too high of expectations in terms of what you will get done, you will manage."
Thank you so much for that wonderful advice you shared...reminds me that I have to be gentle on myself....thank you for that!
Yes so much wonderful advice. I'm so glad that many more ppl are able to take something from this thread and have it improve their lives. I will be pushing myself today too, so you're not alone!
I can't wait to share the bloodwork too!
Stay strong Starshine...and gentle to yourself:)
Hello, I am so sorry you are so miserable, I recently finished triple tx with Incivek and I did whatever I had to do to get through it. You may want to call the doctor to get blood work which could show the your anemic.
It is a very tough tx, I just kept telling myself that the worse I felt the more I was killing the virus. This forum and my husband is what got me through this. There were days I did not think I could go on. I wish you the very best, and pray you only have to do 24 weeks
Best wishes Dee
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