Aa
Yet another post treatmnet sorry-story
Hello everybody,
I'm a new person here, so 'hello'.
I would like to share my story, and my anger too.
I completed my treatment in December 2014, which makes it 7 months ago now. The treatment was interferon and ribavarin, 10 months (I couldn't make full 48 weeks). The results are good - 6 month test - no virus detected.
But I don't recover very well. I'm constantly very tired, I sleep 10h or more (!!!) and still fell tired and demotivated, nothing feels appealing or attractive, except from sleep. Brain fog, mild headaches. I keep forgetting names, words, I leave half finished sentences. My life has been ruined by the treatment.
I have a professional job and career, but with this outcome I may not be able to carry on with the life I used to have. I would gladly take the virus and get my old self back. :-( No to mention my skin got sensitive, I got spots which now leave scars, and don't want to heal.
In olden days I used to be a morning person, full of energy, sleeping no more than 7-7.5h, I loved my job.
To make sure I give myself the best chance to recover, I jog 3 times a week (6,5 km yesterday), I walk to work to get even more exercise, I eat healthily, plenty of veggies, no refined food, no processed food, alcohol moderately on the weekends...I also take supplements (vitamins and minerals). I can't see what else I could do to recover...
If it carries like this, the life is simply not worth living. It's just too hard. I'm 37, I should be moving mountains, juggling lots of task, living the life.
I had my final appointment with my health care professional, (no sign of virus, so that's good), and I explained to my consultant how I felt. She dismissed a possibility of any post treatment issues, syndromes or hungover. She said, she had been working in this field for tens of years and she had never seen anything like this. She insisted that I probably suffer from mild depression, not related to the treatment. She has been always very good to me and very supportive throughout the treatment, I can't fault her. But this just doesn't add up. She also run some tests - my thyroid is fine, by blood sugar is fine, other things too.
I also decided to talk to my occupational nurse, and she on the other hand straight away said: you had post viral fatigue! Its normal, and lasts min 6 months. She advised to visit my GP and get mild antidepressant to help through this.
What really angers me is that there is obviously something like post treatment fatigue, or hungover or syndrom- many of you are describing it,yet there is no mention of this when you read medical reports or you talk to the doctors who prepare you for the treatment. As fa massive denial/hiding the truth! But it has a huge impact! If the treatment makes me unfit, for months or even years, for the profession I used to do, its something seriously wrong with it! And yet, none mentioned it in any official literature! If I was warned I wouldn't have started this blood thing.
My main issue is work - I'm not performing as well as I should and I have big projects to run. So I need to get better:-/ My life runs around getting 10h of sleep, which gives little rest anyway.
How did you recover? Will it ever get better??? When? It's been already 7 months.
I'm a new person here, so 'hello'.
I would like to share my story, and my anger too.
I completed my treatment in December 2014, which makes it 7 months ago now. The treatment was interferon and ribavarin, 10 months (I couldn't make full 48 weeks). The results are good - 6 month test - no virus detected.
But I don't recover very well. I'm constantly very tired, I sleep 10h or more (!!!) and still fell tired and demotivated, nothing feels appealing or attractive, except from sleep. Brain fog, mild headaches. I keep forgetting names, words, I leave half finished sentences. My life has been ruined by the treatment.
I have a professional job and career, but with this outcome I may not be able to carry on with the life I used to have. I would gladly take the virus and get my old self back. :-( No to mention my skin got sensitive, I got spots which now leave scars, and don't want to heal.
In olden days I used to be a morning person, full of energy, sleeping no more than 7-7.5h, I loved my job.
To make sure I give myself the best chance to recover, I jog 3 times a week (6,5 km yesterday), I walk to work to get even more exercise, I eat healthily, plenty of veggies, no refined food, no processed food, alcohol moderately on the weekends...I also take supplements (vitamins and minerals). I can't see what else I could do to recover...
If it carries like this, the life is simply not worth living. It's just too hard. I'm 37, I should be moving mountains, juggling lots of task, living the life.
I had my final appointment with my health care professional, (no sign of virus, so that's good), and I explained to my consultant how I felt. She dismissed a possibility of any post treatment issues, syndromes or hungover. She said, she had been working in this field for tens of years and she had never seen anything like this. She insisted that I probably suffer from mild depression, not related to the treatment. She has been always very good to me and very supportive throughout the treatment, I can't fault her. But this just doesn't add up. She also run some tests - my thyroid is fine, by blood sugar is fine, other things too.
I also decided to talk to my occupational nurse, and she on the other hand straight away said: you had post viral fatigue! Its normal, and lasts min 6 months. She advised to visit my GP and get mild antidepressant to help through this.
What really angers me is that there is obviously something like post treatment fatigue, or hungover or syndrom- many of you are describing it,yet there is no mention of this when you read medical reports or you talk to the doctors who prepare you for the treatment. As fa massive denial/hiding the truth! But it has a huge impact! If the treatment makes me unfit, for months or even years, for the profession I used to do, its something seriously wrong with it! And yet, none mentioned it in any official literature! If I was warned I wouldn't have started this blood thing.
My main issue is work - I'm not performing as well as I should and I have big projects to run. So I need to get better:-/ My life runs around getting 10h of sleep, which gives little rest anyway.
How did you recover? Will it ever get better??? When? It's been already 7 months.
Hi, just wanted to share a little about post viral syndrome. First, I have several friends who suffered this after interferon combo therapy. Two had strokes and recovery was long and traumatic. I was taken off of Ribavirin/interferon due to extremely low platelets and now count my blessings.
However, I came in contact with a small child last summer who had Hep B and it wiped me out for months and months. I spent my life savings paying my bills during this long protracted illness. My family doctor told me that post viral syndrome (which can lead to chronic fatigue syndrome) is common after any really bad virus infection. If I hadn't had the resources to just sleep and rest I believe that I would have progressed to chronic FS. I rested and slept every chance I got. Lots of naps, lots of fruits and veggies, and stayed in bed after every wipe out exertion. Obviously not everyone can afford to just rest this much but I suggest you give yourself every possible opportunity to get good sleep and rest. I also had restless sleep and did occasionally take small amounts of Melatonin and drink chamomile tea at night until I got back to my normal sleep pattern. So resist lots of coffee or tea, herbal vitamins with gurana, etc. I think you are probably past the worse part as mine lasted 6 months before I started to rev my engine a little. It became very depressing as you know.....especially when you are a high energy person with a clogged gas line. So listen to your body and also have your Vitamin D and B12 checked. Small dose (50 mg) B complex helped me as did the mega doses of Vitamin D (Ergocalciferol) I was prescribed after finding my D was extremely low post viral (B).
On a bright note for me who was pushing the limit on my Hep c, I was infected in 1963 after a blood transfusion and even living a really healthy active life have f4 and serious portal hypertension with platelets at 29.
I was finally approved for Harvoni and its no comparison to even the short time I was on your TX type. So hang in there and I hope I gave you some new avenues to pursue in your post tx or vx recovery.
However, I came in contact with a small child last summer who had Hep B and it wiped me out for months and months. I spent my life savings paying my bills during this long protracted illness. My family doctor told me that post viral syndrome (which can lead to chronic fatigue syndrome) is common after any really bad virus infection. If I hadn't had the resources to just sleep and rest I believe that I would have progressed to chronic FS. I rested and slept every chance I got. Lots of naps, lots of fruits and veggies, and stayed in bed after every wipe out exertion. Obviously not everyone can afford to just rest this much but I suggest you give yourself every possible opportunity to get good sleep and rest. I also had restless sleep and did occasionally take small amounts of Melatonin and drink chamomile tea at night until I got back to my normal sleep pattern. So resist lots of coffee or tea, herbal vitamins with gurana, etc. I think you are probably past the worse part as mine lasted 6 months before I started to rev my engine a little. It became very depressing as you know.....especially when you are a high energy person with a clogged gas line. So listen to your body and also have your Vitamin D and B12 checked. Small dose (50 mg) B complex helped me as did the mega doses of Vitamin D (Ergocalciferol) I was prescribed after finding my D was extremely low post viral (B).
On a bright note for me who was pushing the limit on my Hep c, I was infected in 1963 after a blood transfusion and even living a really healthy active life have f4 and serious portal hypertension with platelets at 29.
I was finally approved for Harvoni and its no comparison to even the short time I was on your TX type. So hang in there and I hope I gave you some new avenues to pursue in your post tx or vx recovery.
Wise words and I find pacing so hard to do...The burning sensation in the muscles are very real. I have to say that I feel a little desperate about it but have to keep on keeping on ! Am very thankful for everyone who posts on here....May all of us get better soon..
Exactly. They call it the 75% rule (pacing oneself so there is little crash and burn.) For me I do the 50% rule. The post treatment fatigue, aches, pains and burning sensations in the muscles are very real. For me my nervous system was all out of whack. 5 months now into the manual therapy (no exercise) and I am doing better in increments. (baby steps). I tried the power walking on my own and it landed me in the hospital. That was too much too soon. If I do heavy grunt things I have to put a time limit on it let's say an hour or so, and I must be feeling up to it. I do not force myself. Non invasive Chiropractic (not forcing anything on the body) has helped me with the nervous system working better. It can't be explained in a forum. Individual research is needed and as with all things concerning this disease and the damage left behind, it's case by case. We all figure out what works for us. (Example)- some swear coffee is good but coffee will put me in bed for a couple days sick as a dog. Check and see how the spine and nervous system sends signals to the body and organs. See a chart online. With me, the signals were haywire from the treatment and illness. I'm doing better albeit it takes patience and continued appointments to build momentum. I've had Manual Lymphedema Drainage too, so body work helps me greatly. I just lay there. No exertion needed.
The problem with being too active when having Post Viral Fatigue Syndrome/Post Interferon Syndrome is the post exertional malaise that can put sufferers to bed for weeks.I was very active prior to and for the first two thirds of treatment,post treatment I started to feel better and tried to get back into my exercise regime but 3 months into recovery discovered that my morning walk would lay me up for days afterwards-then I developed fibromyalgia and the fatigue got worse and worse.9 years on and I've learnt to pace myself very carefully to avoid te crash and burn cycle I was trapped in by trying to push myself back to health.
I don't have a URL for you to go to but I'm sure you can find it under "benefits of manual body work." I only go by what my physical therapists tell me.
I responded to your questions in the other thread but I will link back to them for reference and also post my last response in that thread:
http://www.medhelp.org/posts/Hepatitis-C/Post-treatment-syndrom/show/2681636#post_12982828
http://www.medhelp.org/posts/Hepatitis-C/Post-treatment-syndrom/show/2681636#post_12985751
And my last post in that thread (not sure if you saw it or not):
If you do not feel better by December (which would be a year after finishing treatment), I would still suggest seeing a Rheumatologist.
As I said before, both Hepatitis C and Interferon (independent of each other) can trigger Autoimmune Disorders. If your symptoms do not improve a lot, then it would be prudent to see a good Rheumatologist who can run a bunch of tests to see if you have an Autoimmune Disorder.
It is very unfortunate that your doctor was so dismissive about your symptoms. Even my Rhematologist told me that she has been seeing a lot of people who have Hepatitis C and have Autoimmune Disorders and also people who treated with Interferon who have Autoimmune Disorders. She said that one of her Hep C positive patients who took Interferon came in to see her and was diagnosed with 4 Autoimmune Disorders.
It is possible that you are depressed, but one thing I have learned is that, if a doctor does not know what is wrong with you, he/she will frequently write it off as depression (instead of doing the exam and work up needed to find out what is really wrong with a person). Depression is the garbage bin for anything that a doctor cannot figure out or does not want to figure out.
Best of luck.
http://www.medhelp.org/posts/Hepatitis-C/Post-treatment-syndrom/show/2681636#post_12982828
http://www.medhelp.org/posts/Hepatitis-C/Post-treatment-syndrom/show/2681636#post_12985751
And my last post in that thread (not sure if you saw it or not):
If you do not feel better by December (which would be a year after finishing treatment), I would still suggest seeing a Rheumatologist.
As I said before, both Hepatitis C and Interferon (independent of each other) can trigger Autoimmune Disorders. If your symptoms do not improve a lot, then it would be prudent to see a good Rheumatologist who can run a bunch of tests to see if you have an Autoimmune Disorder.
It is very unfortunate that your doctor was so dismissive about your symptoms. Even my Rhematologist told me that she has been seeing a lot of people who have Hepatitis C and have Autoimmune Disorders and also people who treated with Interferon who have Autoimmune Disorders. She said that one of her Hep C positive patients who took Interferon came in to see her and was diagnosed with 4 Autoimmune Disorders.
It is possible that you are depressed, but one thing I have learned is that, if a doctor does not know what is wrong with you, he/she will frequently write it off as depression (instead of doing the exam and work up needed to find out what is really wrong with a person). Depression is the garbage bin for anything that a doctor cannot figure out or does not want to figure out.
Best of luck.
Can you please post a link to the references for your following statement.
"physical therapy to jump start the nervous system and straighten the DNA that got messed up through all of this."
I never heard that physical therapy can "jump start the nervous system and straighten the DNA that got messed up through all of this." However, if it can do that then I would sure like to read about it and find out exactly how it works.
Thanks.
"physical therapy to jump start the nervous system and straighten the DNA that got messed up through all of this."
I never heard that physical therapy can "jump start the nervous system and straighten the DNA that got messed up through all of this." However, if it can do that then I would sure like to read about it and find out exactly how it works.
Thanks.
Go easy on yourself. Being hard on ourselves doesn't help. I'd check with a nutrition nurse to see if you are deficient in your vitamins or protein intake.
I'm a firm advocate of physical therapy to jump start the nervous system and straighten the DNA that got messed up through all of this. Manual body work helps send signals to the body system to work correctly but it has to be ongoing to build momentum and not just a sometime thing. No exertion is needed.
I'm a firm advocate of physical therapy to jump start the nervous system and straighten the DNA that got messed up through all of this. Manual body work helps send signals to the body system to work correctly but it has to be ongoing to build momentum and not just a sometime thing. No exertion is needed.
I think most of us have experienced interferon and ribavirin treatments, many of us more than one. Those two drugs are just wicked and I would say listen to your occupational nurse, and maybe consider a short term mild antidepressant, and just follow dosing instructions to the tee.
https://en.wikipedia.org/wiki/Cerefolin
https://en.wikipedia.org/wiki/Coenzyme_Q10
Agree with dontworry' -- sleep is good.
https://en.wikipedia.org/wiki/Coenzyme_Q10
Agree with dontworry' -- sleep is good.
I think, hope, that it is a year from end of treatment for most Sx to go away. I would say mentally and emotionally I am 80-90% recovered. I might say that what may be different now may be as a result of the experience of Tx, that I think I have a different perspective on my life now, and that I may be more selective about how and who I spend time and energy on. Artistically I am recovered as an artist, I am creative again. I kind of had to work on kick starting that too, taking time to go to galleries, "art days." But I am doing creative things agaIn.
I am still dealing with some physical Sx that have surfaced since EOT, tinnitus, osteoporosis, gum disease, but nothing that can't be improved. Skin and hair have finally recovered. Sleep hasn't been an issue for me, though I did take benadryl the whole time while on Tx to sleep. I excercise moderately 3-4 times a week, and work full time, as I did during Tx.
Hang in there, truly, give yourself time. Do what you can to enrich your life, and to feed your soul. I had to re-engage myself into parts of life I had withdrawn from last year. I started reading again, something I found I didn't really have the concentration for while on Tx. I joned thelocal art museum so I could go any time to sit and ponder other times and people, how they dealt with life.
It id also ok to feel crummy and complain here, we have been there and done that.
I am still dealing with some physical Sx that have surfaced since EOT, tinnitus, osteoporosis, gum disease, but nothing that can't be improved. Skin and hair have finally recovered. Sleep hasn't been an issue for me, though I did take benadryl the whole time while on Tx to sleep. I excercise moderately 3-4 times a week, and work full time, as I did during Tx.
Hang in there, truly, give yourself time. Do what you can to enrich your life, and to feed your soul. I had to re-engage myself into parts of life I had withdrawn from last year. I started reading again, something I found I didn't really have the concentration for while on Tx. I joned thelocal art museum so I could go any time to sit and ponder other times and people, how they dealt with life.
It id also ok to feel crummy and complain here, we have been there and done that.
Welcome to the forum. Let us know how this turns out. I will look for the links and post them.
Thank you Kim. I too hope it will pass, Im giving it a year. What after a year? I don't know.
For me, personally, having the life quality I have now is not worth living, so I'd rather have a good life (I used to have), but shorter, than long one but with this fatigue thing I currently suffer from, that in reality takes away all the joy.
But hey, the damage is done.
Thank you for your support:-)
For me, personally, having the life quality I have now is not worth living, so I'd rather have a good life (I used to have), but shorter, than long one but with this fatigue thing I currently suffer from, that in reality takes away all the joy.
But hey, the damage is done.
Thank you for your support:-)
Thank you so much for your comment! So there is a hope!
I'm quite petrified reading that some people here suffer 2-3 years, even longer.
Maybe its 1 year per 3 months of treatment...? This would mean 4 years for me, I hope not :-(
Knowing that you got better is quite a relief. Would you say you are fully back to normal now?
I'm quite petrified reading that some people here suffer 2-3 years, even longer.
Maybe its 1 year per 3 months of treatment...? This would mean 4 years for me, I hope not :-(
Knowing that you got better is quite a relief. Would you say you are fully back to normal now?
Hiya, thanks for your support, it does feel like some chemical imbalance was caused. I do hope the body will heal itself eventually. Eating healthily and exercising are important, mainly because if you go to doctor this is what they will tell you to do first. So I want to have it bagged, so they don't try to 'heal' me with lettuce and a walk (cheap and easy way to fob a patient off).
And I do feel that when I do my jog I feel a bit better.
The other thing I read is that gluten free diet helped some people with post viral fatigue syndrome. I thinking of trying it - is not going to hurt. I will share if there was any difference.
I will read about dopamine based drugs, thanks.
And I do feel that when I do my jog I feel a bit better.
The other thing I read is that gluten free diet helped some people with post viral fatigue syndrome. I thinking of trying it - is not going to hurt. I will share if there was any difference.
I will read about dopamine based drugs, thanks.
dontworry_behappy1, Thank you all for your support, it means a lot to me.
@dontworry_behappy1 - this sounds like me - long sleep that doesn't give sufficient rest. I was thinking along those lines, but the only things I found were sleep apnea or snoring as potential reasons. None of the is applicable to me. Your theory of muscle are not relaxing properly sounds plausible. Thank you very much, I will discuss it with my GP.
I'm sure there must something on long term side effects, just when I was reading about the treatment, I read the ones about side effects during the treatment, and didn't come across any long terms ones. Probably because I didn't look for them, and I wasn't told there could be any. If you could share some links, that would be great, thanks!
@dontworry_behappy1 - this sounds like me - long sleep that doesn't give sufficient rest. I was thinking along those lines, but the only things I found were sleep apnea or snoring as potential reasons. None of the is applicable to me. Your theory of muscle are not relaxing properly sounds plausible. Thank you very much, I will discuss it with my GP.
I'm sure there must something on long term side effects, just when I was reading about the treatment, I read the ones about side effects during the treatment, and didn't come across any long terms ones. Probably because I didn't look for them, and I wasn't told there could be any. If you could share some links, that would be great, thanks!
FYI: I only took these med before I went to bed at night. Never during the day. I wasn't at all tired or sleepy during the day. I felt rested.
There is research and documentation on this subject. I will look up and provide the reference about post treatment effects.
What I have found is I wasn't getting restful sleep. My doctor who treated me for hepatitis C explained this to me. I was really against taking anything to help me sleep. Because I was sleeping 10 hours a day. It's as if Hepatitis C treatment is a "trigger" that sets off an abnormal set of events in your mind.
A trigger that makes your body not relax when you sleep. What is interesting is taking a Valium or Xanax seemed to give relief from the abnormal after effects. The interesting thing is you didn't take much or for very long to turn off the trigger. It's was if you muscles just needed a way to relax and get back to resting. regardless, it has worked and I felt a whole lot better.
What I have found is I wasn't getting restful sleep. My doctor who treated me for hepatitis C explained this to me. I was really against taking anything to help me sleep. Because I was sleeping 10 hours a day. It's as if Hepatitis C treatment is a "trigger" that sets off an abnormal set of events in your mind.
A trigger that makes your body not relax when you sleep. What is interesting is taking a Valium or Xanax seemed to give relief from the abnormal after effects. The interesting thing is you didn't take much or for very long to turn off the trigger. It's was if you muscles just needed a way to relax and get back to resting. regardless, it has worked and I felt a whole lot better.
I did 3 months Interferon/Ribavirin/Sovaldi finishing May 1st, so am over a year eot now, and I must say it took the whole year to recover. You did a harder Tx than I did, but I have had post treatment Sx. What I am trying to say is, give yourslf some more time. Some mental and emotional issues I had have only recently lessened. So please give yourself time. I had a great nurse during and after Tx, and she said the Sx last at least a year. Hang in there. Maybe some short term antidepressents would help.
I somewhat believe the Ribaviren and/or Interferon are the culprits. Many of our Drs are well aware of the problem associated with these drugs and still dole them out like candy.
I'm sorry that we were not informed and used as science experiments to some degree. For me being cured is better then dying of liver disease, but seems like an uneven trade-off to say the least. No one will ever willingly tell you that for some of us unfortunately this is the reality. Let's just hope that with time it may lesson and fade.
.....Kim
I'm sorry that we were not informed and used as science experiments to some degree. For me being cured is better then dying of liver disease, but seems like an uneven trade-off to say the least. No one will ever willingly tell you that for some of us unfortunately this is the reality. Let's just hope that with time it may lesson and fade.
.....Kim
Hi. I feel for you...and am in the same boat. I am post tx 2.5 yrs cured. i haven't been on this site since I got cured cept for the last week. I was looking to see if there were others with post tx long term side effects...and there seem to be plenty. My zest, memory, vision and libido suffered greatly after my last tx which cured me. I spent 4 yrs and 4 seperate attempts to cure with the last one working. First 3 included interferon and ribivarin. last one was the gilead combo with ribivarin. I am constantly trying to better myseld...eat clean and workout 5-6 days a week. To look at me i am in the best shape of my life and 50 yoa. I still have the mental side effects though as everyone else (with problems post tx) on this site is complaining about. I haven't found the answer yet. I'm wondering id adding a dopamine drug like Levodopa/Carbidopa might help. i have never had a problem with depression and don't really think I depressed now. i just have something going on upstairs like a chemical imbalance or something. Hang in there:)
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