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Post 24 weeks Treatment
Hello Everyone,
Forgive me if I ramble. Please bear with me. I took my last peg-intron shot (24/24) 1 week ago and this 24 weeks has been devasting. I have been bedridden the whole time and can't walk 20 feet without becoming breathless. Background: I am 51 years old, have had HepC since before there was a HepC. I was diagnosed with HepB when I was 18. Last year I the ER had to stop and start my heart due to SupraVentricularTachardia. The doctor thinks the 200 mg of Metoprolol I take to slow down my heart - combined with the Ribavarin, peg-intron, 200 mgs of Ultram, the 30 mgs sleeping pill Temazepam, and the 60 mgs of Cymbalta for 7 months - is what has dropped my blood pressure during treatment to 40/60. 2 months ago I also developed neuropathy in my hands and my right hand is useless while my left hand still has a couple of fingers that work. The doctor said hopefully feeling will come back soon. (This whole ribavarin interferon treatment is still uncharted waters for the medical community. The neurologist finally admitted to me that they really have no textbook to follow and don't have any concrete answers as to how treatment effects people.) Anyway....I asked the doctor if I have to wean off anything and he said no. Just stop everything. I have been off drugs (except for the heartrate Metoprolol) since yesterday----------AND I FEEL WORSE THAN EVER!!!!!!!Horrible nightmares for the few hours I was able to sleep last night, intestinal problems, headache, depression worse than I have ever felt before, sudden anger, confusion, instantaneous mood swings, and severe suicidal thoughts!!!! Does this get better? How long does it take? I am leery of discouraging anyone from getting treatment. As several doctors have pointed out to me - this whole treatment process truly is different for everyone. Has anyone else experienced any of this? Is there hope? Thank you everyone for being involved on this forum. You all are truly a stupendous bunch.
Forgive me if I ramble. Please bear with me. I took my last peg-intron shot (24/24) 1 week ago and this 24 weeks has been devasting. I have been bedridden the whole time and can't walk 20 feet without becoming breathless. Background: I am 51 years old, have had HepC since before there was a HepC. I was diagnosed with HepB when I was 18. Last year I the ER had to stop and start my heart due to SupraVentricularTachardia. The doctor thinks the 200 mg of Metoprolol I take to slow down my heart - combined with the Ribavarin, peg-intron, 200 mgs of Ultram, the 30 mgs sleeping pill Temazepam, and the 60 mgs of Cymbalta for 7 months - is what has dropped my blood pressure during treatment to 40/60. 2 months ago I also developed neuropathy in my hands and my right hand is useless while my left hand still has a couple of fingers that work. The doctor said hopefully feeling will come back soon. (This whole ribavarin interferon treatment is still uncharted waters for the medical community. The neurologist finally admitted to me that they really have no textbook to follow and don't have any concrete answers as to how treatment effects people.) Anyway....I asked the doctor if I have to wean off anything and he said no. Just stop everything. I have been off drugs (except for the heartrate Metoprolol) since yesterday----------AND I FEEL WORSE THAN EVER!!!!!!!Horrible nightmares for the few hours I was able to sleep last night, intestinal problems, headache, depression worse than I have ever felt before, sudden anger, confusion, instantaneous mood swings, and severe suicidal thoughts!!!! Does this get better? How long does it take? I am leery of discouraging anyone from getting treatment. As several doctors have pointed out to me - this whole treatment process truly is different for everyone. Has anyone else experienced any of this? Is there hope? Thank you everyone for being involved on this forum. You all are truly a stupendous bunch.
I know exactly how you feel! The first week off Tx was the worst I ever felt. I was so wound up that the Xanax I'm on didn't even work. I am 3 weeks off everything and still feel very strange, but overall, better, actually a lot better. I'm eating, cooking and cleaning the house again, and doing light exercise. Definitely agree with the others, don't quit the AD. I'm working my way off the Xanax and will probably ask for Ambien at my 4 week if I'm still having sleep issues. It gets a tiny bit better every day, so hang in there!
headache, depression worse than I have ever felt before, sudden anger, confusion, instantaneous mood swings, and severe suicidal thoughts!!"
I agree with the other guys and am sorry I did not respond sooner but I"ve been under the weather and not really online.
I agree completely - right now is not the time to stop the ADs...that can be physically and mentally discomforting just in itself you don't need any more things right now you've had a bad enough time as it is. you can always wait a bit until your physical is built up and you are feeling better, there really is no rush. I waited a few months and went off mine then voila figured out heck I probably should have been on this stuff all of my life! and went back on again.
it takes a while for your body to get well you know. It seems like magic we should just get better but it's not the way it works. Those meds thankfully in order to work have gotten all the way down into your cells and killed all that damnable virus.......so now it's going to take a while for it to get back out. But that's sort of a good thing in itselfl because if any of them are lurking about this is the time when the meds can get them before it's too late.
it's totally NOT the time for you to go off the ADs and I'm sure your doctor will agree with that 100%. You don't have to be an MD to understand what interferon can do to our emotions. It doesn't make you weak or anything to need them for a while longer you know remember the meds are STILL INSIDE you so obviously so are the symptoms too!
Hang in there and just give it some time. Time truly does heal when it comes to this stuff.
Good luck.
I agree with the other guys and am sorry I did not respond sooner but I"ve been under the weather and not really online.
I agree completely - right now is not the time to stop the ADs...that can be physically and mentally discomforting just in itself you don't need any more things right now you've had a bad enough time as it is. you can always wait a bit until your physical is built up and you are feeling better, there really is no rush. I waited a few months and went off mine then voila figured out heck I probably should have been on this stuff all of my life! and went back on again.
it takes a while for your body to get well you know. It seems like magic we should just get better but it's not the way it works. Those meds thankfully in order to work have gotten all the way down into your cells and killed all that damnable virus.......so now it's going to take a while for it to get back out. But that's sort of a good thing in itselfl because if any of them are lurking about this is the time when the meds can get them before it's too late.
it's totally NOT the time for you to go off the ADs and I'm sure your doctor will agree with that 100%. You don't have to be an MD to understand what interferon can do to our emotions. It doesn't make you weak or anything to need them for a while longer you know remember the meds are STILL INSIDE you so obviously so are the symptoms too!
Hang in there and just give it some time. Time truly does heal when it comes to this stuff.
Good luck.
I had no problems dropping the HCV meds, but on the advice of others on the forum, I weaned off of the anti-depressant slowly, over about 3 wks. You may also be having problems from stopping the sleeping medication abruptly. I understand that the concerns for your health caused the doctors to insist that you drop everything immediately, but I think your misery was caused by following that order. I wish all doctors could always see the big picture. Sorry you felt so bad.
It took me about 10 weeks to get over the chemo. I was careful to alternate sleep meds started during the riba insomnia right after EOT but am still having hot flashes from recently stopping them. I'm back on old faithful benedryl for sleep until that part straightens out. It does not cause dependency and may help. I found the 12 weeks after EOT to be nearly as challenging as TX. I had energy after 3-4 weeks but weird stuff just popped up and then popped away again. It just takes time for everything to straighten back out and your body to pick normal function back up after clearing the meds.
This thread is a few weeks old, so I'm hoping some things have straightened out by now and you are feeling much better.
It took me about 10 weeks to get over the chemo. I was careful to alternate sleep meds started during the riba insomnia right after EOT but am still having hot flashes from recently stopping them. I'm back on old faithful benedryl for sleep until that part straightens out. It does not cause dependency and may help. I found the 12 weeks after EOT to be nearly as challenging as TX. I had energy after 3-4 weeks but weird stuff just popped up and then popped away again. It just takes time for everything to straighten back out and your body to pick normal function back up after clearing the meds.
This thread is a few weeks old, so I'm hoping some things have straightened out by now and you are feeling much better.
I took my last shot on Aug 22 and my last pills on Aug 29. So far I have not experienced any additional side affects (maybe my wife says different) except the inability to sleep accompanied with nightmares. My treatment has been very mild compared to most. The only real side affect I had was/is stamina issues. Can't walk up a flight of stairs without almost passing out. I am a hard-charger most of the time and this year of treatment has been a challenge for me to let others "help". I can't wait to get my strength back. So, I have six more months to wait for my next round of blood work - and then, I shall be deemed medically free from Hep C, even though, I know I am already! Thanks for letting me share my story.
I'm sorry that you have had such a tough ride.
It is quite normal to feel worse right after stopping treatment. Don't stop the AD's now!
Your body has to get used to not getting a fresh supply of the peg. It kind of goes into a cold turkey mode, but the drugs are still in your body creating havoc. Don't be surprised if the next few days will get worse.
Hang in there and take a step at a time. Stay on the forum, so you have people to talk to who understand, have gone through it or have one of their loved ones go through it.
There definitely is a light at the end of the tunnel, and the tunnel is most likely not as long as it looks right now. In a few days you should start feeling a better, it comes little by little, but I assure you that you will appreciate every little positive progress. I almost started crying, when food started to taste good. It was amazing. There are all these small things to look forward to.
You'll be fine, it is just the last spurt of the marathon!
It is quite normal to feel worse right after stopping treatment. Don't stop the AD's now!
Your body has to get used to not getting a fresh supply of the peg. It kind of goes into a cold turkey mode, but the drugs are still in your body creating havoc. Don't be surprised if the next few days will get worse.
Hang in there and take a step at a time. Stay on the forum, so you have people to talk to who understand, have gone through it or have one of their loved ones go through it.
There definitely is a light at the end of the tunnel, and the tunnel is most likely not as long as it looks right now. In a few days you should start feeling a better, it comes little by little, but I assure you that you will appreciate every little positive progress. I almost started crying, when food started to taste good. It was amazing. There are all these small things to look forward to.
You'll be fine, it is just the last spurt of the marathon!
Hello Alagirl and thanks for your response. I am taking it day by day & sometimes hour by hour. I didn't realize the riba stays in the body so long after stopping.
Hello,
Thank you for your posting. My apology for not writing sooner. I saw your post right away. But with my hands not working I put off typing as long as I can. Your comment about "a beautiful day" is encouraging. I have given up on ever feeling that way again! Right now I am just hoping there will be hope someday.
Thank you for your posting. My apology for not writing sooner. I saw your post right away. But with my hands not working I put off typing as long as I can. Your comment about "a beautiful day" is encouraging. I have given up on ever feeling that way again! Right now I am just hoping there will be hope someday.
Wow Orkney, I feel for you. I can't comment on the other drugs you're taking, but I can comment on the riba, which is still building up post tx and is very slow to leave your system. A friend of mine who was anemic during tx, and had neuropathy on one foot, also had a lot of trouble over the first month post tx. She was absolutely bed-ridden.
TX does certainly turn us upside down. It is a very slow haul back to normal so remember you are still an out-'patient' and be kind to yourself - at least as much as you were over the 24 weeks. I gave myself 5 weeks to go back to work and it was way too early. The three-month mark is a good benchmark for improvements.
Google neuropathy and B-complex - it may help. In the meantime, I would contact your Dr; a number of people have had to go on anti-depressants post tx. It's no light matter finishing the meds doesn't mean we've finished the long haul back to recovery. Good luck with it. I'm 8 months post now and many mornings I wake up feelling like it's going to be a beautiful day. Take it slow.....
TX does certainly turn us upside down. It is a very slow haul back to normal so remember you are still an out-'patient' and be kind to yourself - at least as much as you were over the 24 weeks. I gave myself 5 weeks to go back to work and it was way too early. The three-month mark is a good benchmark for improvements.
Google neuropathy and B-complex - it may help. In the meantime, I would contact your Dr; a number of people have had to go on anti-depressants post tx. It's no light matter finishing the meds doesn't mean we've finished the long haul back to recovery. Good luck with it. I'm 8 months post now and many mornings I wake up feelling like it's going to be a beautiful day. Take it slow.....
I would talk to the doctor about staying with the cymbalta until you have your reserves back up and are no longer feeling depressed. It takes a while for some of the other side effects to resolve also for some people. I would ask if you can still take ultram or meds for sleeping for now if you need them. If you are having problems and your tx doctor will no longer prescribe what you need for your aftercare for you, go to a regular gp or internal medicine doc and just let them know what problems you're having and maybe they can help.
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