Aa
feel terrible after treatment
Can Not sleep. Go to bed exhausted and I cant turn my brain off! Toss and turn worry, worry. Is this coming back? Am I going to have to treat again? OMG, cant stand myself! Then when I do get to sleep I cant get up! Anyone else having these issues after finishing treatment? Go for labs tomorrow and going to ask dr. feel like I am constantly hung over :( no motivation...................... Depressed? I dont know.
Thinking about your post tx state of mind made me remember a visit with my hepatologist.
I had 6 weeks of tx left. He wanted to put me on ADs, saying they'd take a couple of weeks to kick in.
I said, " but I only have 6 weeks left." He replied that the symptoms don't just disappear that quickly.
So don't beat up on yourself if you aren't feeling as elated as you thought. You will feel better, and so will I :)
I had 6 weeks of tx left. He wanted to put me on ADs, saying they'd take a couple of weeks to kick in.
I said, " but I only have 6 weeks left." He replied that the symptoms don't just disappear that quickly.
So don't beat up on yourself if you aren't feeling as elated as you thought. You will feel better, and so will I :)
Forgot to mention, try melatonin for the sleep, it's a natural supplement. I have been taking it ow and then when I can't sleep. Have not needed to get a prescription. It does not work for everyone but may be worth a try. Sleep is important.
The doc may be able to help but it does take time to feel better post tx. The exhaustion, fog, anxiety, rage, and depression do not just stop. Each week will get noticeably better though. I could not work a full week by week 3, glad you can work pt, that may help you get back into the swing of things. I am 8 weeks post now, my energy is pretty high now, fog mostly gone, still some tension but almost normal. Each week is better than the last.
Yes, maybe getting back to work will give you something to focus on, rather than spend your time worrying. I've been very fortunate that I've been able to work through tx, some days not firing on all cylinders, but it gave me purpose and focus throughout tx. Working 1/2 days might be a good transition, but time will tell. Hope it works out ok for you. Maybe see you at the ticket counter at the airport soon. lol. Good luck.
@ fly have altready gotten eot labs. UND and have been since week 4. Should be happy as a clam but worry, worry, worry. Its my nature. But never had a serious health issue before in my life. This is all new to me. Being sick, being weak, stinks........I am very independent and used to being a get up and go girl even after working all day at at very physical job. I work customer service for an airline. Took a couple weeks off after treatment finished to get my strength back and maybe get some color in my cheeks... Going back to work next week and think it will be for the best even if I have to work half days,
I am 3 weeks ahead of you and still very labile and hard to concentrate at work. I knew how to deal with depression during treatment but now I am having a very hard time. I did a year of the peg and ribo in 2002 but was a relapser. Just finished 12 weeks of ribo,peg,and incivek plus 12 more weeks of just ribo and peg. Don't remember being so depressed for this long afterwards last time.
another thing that really can help sleep is write down everything you want to do the next day before you try to go to sleep...at least you won't be thinking of things you have to remember to do!
Since we stopped at the same time, and are both geno 2, I thought I'd share my experience. Like you, I felt so good and excited right after stopping. It was such a relief.
Now, I'm dealing mostly with headaches that come and go. My energy is better but I'm still tired.
I had a massage scheduled for today, but she postponed my appointment until next week. I know, the massage will relieve a lot of the physical tension, left over from tx. I'm going to ask her to focus on my head and neck.
Daily, I get out and walk for a couple of hours.
When I was und @ week 4, my heptalogist said now there was 90% chance I'd cure.
My NP said it takes a month post EOT for blood levels to rise.
We've been poisoning ourselves for 24 weeks. It takes time to flush these toxins out of our system. There has to be a reason they say not to get pregnant for 6 months after stopping tx.
Unlike you, I'm not worried about 'it' coming back. Although I'd be in a lot worse shape if it did, being post tp, I'm just convinced it's gone.
Okay,about your anxiety~ what's the worst case scenario? You relapse.
If I recall you were not cirrhotic. During tx, your liver has been healing.
So, let's assume you relapse and your liver has improved.
What do you do? You take care of your liver, and in a few years do the interferon free orals.
Try some yoga, deep breathing exercises.
And I think can-do's idea is good. Get a pcr and set your mind at ease.
Good luck~
OH
Now, I'm dealing mostly with headaches that come and go. My energy is better but I'm still tired.
I had a massage scheduled for today, but she postponed my appointment until next week. I know, the massage will relieve a lot of the physical tension, left over from tx. I'm going to ask her to focus on my head and neck.
Daily, I get out and walk for a couple of hours.
When I was und @ week 4, my heptalogist said now there was 90% chance I'd cure.
My NP said it takes a month post EOT for blood levels to rise.
We've been poisoning ourselves for 24 weeks. It takes time to flush these toxins out of our system. There has to be a reason they say not to get pregnant for 6 months after stopping tx.
Unlike you, I'm not worried about 'it' coming back. Although I'd be in a lot worse shape if it did, being post tp, I'm just convinced it's gone.
Okay,about your anxiety~ what's the worst case scenario? You relapse.
If I recall you were not cirrhotic. During tx, your liver has been healing.
So, let's assume you relapse and your liver has improved.
What do you do? You take care of your liver, and in a few years do the interferon free orals.
Try some yoga, deep breathing exercises.
And I think can-do's idea is good. Get a pcr and set your mind at ease.
Good luck~
OH
It sounds like you have way too much on your mind as you try to settle down to sleep, but once asleep you are ok. If you can find a way to calm the mind prior to bedtime it might help. If you need to, talk to the doc about an rx to assist you. As mentioned, maybe once you get your labs back and hear a UND at eot you relax a bit. Try to focus on positive thoughts and don't watch the news. lol. If you can get some fresh air and feel up to some exercise that might help, too.
sorry i forgot something......i took advil pm liquid gels post tx ...if you want to sleep take one of those
I call it the post treatment blues, now that your off you have lost your crutch. While we all love being off treatment it does come with some depression, all the what ifs begin, i had the same issues with sleeping as you and also the what ifs... The best medicine is that first und post pcr. Hang in there your going to be fine...
I am going for cbc and cmp every two weeks until June when I go for VL, just a worrier and always have been. Seems like I felt better a week after finishing than I do now. Blood levels from 2 weeks ago were going up hmg was up to 10.5 from 9 something.......so on the up swing just want to turn my head off at bed time and SLEEP :) Think I am going to try benedryl tonight didnt like melatonin gave me funky dreams. Just what I need. LOL! Still a little weak walking especially stairs.
maybe get your alts done every month...if they stay normal its a good indicator of how your doing.... its easy and cheep
Give it time, not what you want to hear I know. It takes 6 months for all the Riba to get out of your body, be cause thats how long it takes for you blood cells to all be repalced with ones that are not saturated with riba.
It gets better I swear.
It gets better I swear.
So sorry to hear this, but glad you will see the doc tomorrow and find out what's going on. It seems to me there would naturally be some kind of kickback when you stop taking such powerful drugs; I hope that's it.
I think you are going to be okay, they seem so positive about type 2 and the outcome with SOC; more than they are letting us know. I was told there are more options (likely w/o interferon or even riba) and we will get this little demon!
Keep us posted.
I think you are going to be okay, they seem so positive about type 2 and the outcome with SOC; more than they are letting us know. I was told there are more options (likely w/o interferon or even riba) and we will get this little demon!
Keep us posted.
@James, finished two weeks ago three weeks friday will be my third friday peg free. Just feel very anxious. Did not take a/d with treatment actually the worry is more now that I have finished. Guess because during treatment I had VL done EVERY month, and now I have to wait for three months and then another three. YIKES!
How long have you been off treatment? I had some of those issues but things get better with time.
i try to tell people not to get too anxious post tx....it took 6 weeks for me to get rid of headaches...and other stuff...and then every week i felt better...by the end of three months post i was really pretty good...now 4 months post tx still trying to get my hgb normal but i feel great other wise..i think i'll feel as good as i did 20 years ago soon...i can feel my muscles getting stronger..that hasn't happened for many years.....stopped my ad at i think 2 months and that made me feel even better....it takes time...most likely you'll feel better soon...give it time and good luck...billy
Sorry, it sent before I finished that post. I wanted to add that you should be aware that this small dose of melatonin is fast-working (about 15 min), and has unpleasant effects on dreams for some people - nightmares are a possibility. I just had more intense dreams at first but not bad ones. Be sure to ask your doctor before trying it though, and as always, if there is a way to resolve the underlying anxiety that would certainly be preferable to using something for sleep. Good luck!
I'm so sorry to hear what a hard time you are having. When did you finish tx? It does sound like a lot of the problem is anxiety. I have that same kind of difficulty sleeping, on and off. Doctors tend to disapprove of taking Rx sleeping meds much, and while a big bedtime dose of Benadry can help for a few nights, one's body acclimates to it fairly quickly. I've had good results from very tiny amounts of melatonin - I buy the smallest dose I can find, which is 500mcg pills from Trader Joe's,. And I cut them into quarters
Back in 2003 I had 24 weeks of Rebetron, and was a partial responder. At 16 weeks I stopped the ribivirin for a couple of weeks and this probably was the reason I did not achieve SVR. I was UND at 12 weeks, positive at 18 weeks, UND after 24 weeks and relapsed four weeks later.
After treatment I gained a lot of weight, my clothes did not fit and had to buy new ones. I was actually more depressed after treatment than during treatment, and even seriously contemplated suicide. I lost my desire to engage in many of the activities I'd previously liked. The rash I first experienced during treatment came back off and on.
That was the fall of 2003, but after about 10 months I was definitely feeling better. By that time, the only after effect was the added weight, about 20-25 pounds which I couldn't seem to get rid of.
After treatment I gained a lot of weight, my clothes did not fit and had to buy new ones. I was actually more depressed after treatment than during treatment, and even seriously contemplated suicide. I lost my desire to engage in many of the activities I'd previously liked. The rash I first experienced during treatment came back off and on.
That was the fall of 2003, but after about 10 months I was definitely feeling better. By that time, the only after effect was the added weight, about 20-25 pounds which I couldn't seem to get rid of.
I can't recall specifically, but I think you were Gentotype 2, treated with SOC, and just recently finished, right? Are you taking any other medications that may cause insomnia or anxiety? Or did you stop taking any anti-anxiety or antidepressant medication recently?
I think some of these feelings of being anxious about Hep C coming back are probably normal, but the extreme that you're describing of sleeplessness, anxiety, and lack of motivation sound like it could be a cycle of anxiety that could lead to depression. I'm not a doctor, but I do think it is a good idea to talk to your doctor about all of these feelings.
In the meantime, keep drinking water, go for a walk, and try to put your mind on something else (something positive)....I know, easier said than done....Hang in there, and keep us posted.
Advocate1955
I think some of these feelings of being anxious about Hep C coming back are probably normal, but the extreme that you're describing of sleeplessness, anxiety, and lack of motivation sound like it could be a cycle of anxiety that could lead to depression. I'm not a doctor, but I do think it is a good idea to talk to your doctor about all of these feelings.
In the meantime, keep drinking water, go for a walk, and try to put your mind on something else (something positive)....I know, easier said than done....Hang in there, and keep us posted.
Advocate1955
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