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Post treatment syndrom???
Hello everybody,
I'm a new person here, so hello everybody.
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 so far, my final test will take place next week.
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 form sleep. In olden days I used to be a morning person, full of energy, sleeping no more than 7-7.5h. 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, no mater what, and don't want to heal.
I jog 3 times a week, I walk to work, I eat healthily, plenty of veggies, no refined food, no processed food, alcohol moderately on the weekends...I can't see what else I could do to recover. I'm going to talk to my healthcare professional this week, but I fear there is little she can do to help.
If it carries like this, the life is simply not worth living. It's just to hard. I'm 37, I should be moving mountains, juggling lots of task, living the life.
How did you recover? Will it ever get better??? Its already 7 months.
Thanks in advance for reading my rant.
I'm a new person here, so hello everybody.
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 so far, my final test will take place next week.
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 form sleep. In olden days I used to be a morning person, full of energy, sleeping no more than 7-7.5h. 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, no mater what, and don't want to heal.
I jog 3 times a week, I walk to work, I eat healthily, plenty of veggies, no refined food, no processed food, alcohol moderately on the weekends...I can't see what else I could do to recover. I'm going to talk to my healthcare professional this week, but I fear there is little she can do to help.
If it carries like this, the life is simply not worth living. It's just to hard. I'm 37, I should be moving mountains, juggling lots of task, living the life.
How did you recover? Will it ever get better??? Its already 7 months.
Thanks in advance for reading my rant.
Best Answer
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.
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.
Hi Volga
I'm so sorry that you are feeling so bad but believe me, you don't want the virus back. Dying of liver disease is just about the worst way to go
It's frustrating to hear that your doctor was so ignorant and unsympathetic. I hear this All the time (including my own doc)
But we are the guinea pigs in this experiment and I am afraid that there doesn't seem to be much of an effort in the medical comity or Big Pharm to study long term results.
I think that if someone ran the numbers and issues from this forum alone, they would see that post treatment issues are rampant - especially with the 2 nasties that you were on. I predict that they will stop using both of those meds soon and treat with Harvoni or similar drugs with not much latent lousy effects
I am just 8 weeks post treatment with Harvoi and Riba and the Riba made me feel exactly as you described. The good news, it does get better!
Is there any way you can take a sabbatical for 3 months or so and work on building your strength and vitality?
It's hard to "pretend" that you are not sick and it's frustrating to not be able to be the energetic person you were before treatment
Hang in there and welcome to the forum!
I'm so sorry that you are feeling so bad but believe me, you don't want the virus back. Dying of liver disease is just about the worst way to go
It's frustrating to hear that your doctor was so ignorant and unsympathetic. I hear this All the time (including my own doc)
But we are the guinea pigs in this experiment and I am afraid that there doesn't seem to be much of an effort in the medical comity or Big Pharm to study long term results.
I think that if someone ran the numbers and issues from this forum alone, they would see that post treatment issues are rampant - especially with the 2 nasties that you were on. I predict that they will stop using both of those meds soon and treat with Harvoni or similar drugs with not much latent lousy effects
I am just 8 weeks post treatment with Harvoi and Riba and the Riba made me feel exactly as you described. The good news, it does get better!
Is there any way you can take a sabbatical for 3 months or so and work on building your strength and vitality?
It's hard to "pretend" that you are not sick and it's frustrating to not be able to be the energetic person you were before treatment
Hang in there and welcome to the forum!
Ive just discovered that there is a entire forum for this issue, sorry to spam here! I will move there:
http://www.medhelp.org/forums/Hepatitis-C-Post-Treatment-Issues/show/1670
Thanks again
http://www.medhelp.org/forums/Hepatitis-C-Post-Treatment-Issues/show/1670
Thanks again
Hi,
Im sorry it took so long for me to get back. Thank you for answering my question and for your advice.
I had my final appointment recently (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. 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.
I will do this.
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, and even this doesn't give me rest.
Anyway, thanks for your support, I will share my experience with the antidepressant, if it works for me, perhaps it will help others too.
I wish I didn't start the treatment though, I felt normal before it and was never warned I could face long term post treatment side effects, which are almost life changing, in the bad way.
Im sorry it took so long for me to get back. Thank you for answering my question and for your advice.
I had my final appointment recently (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. 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.
I will do this.
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, and even this doesn't give me rest.
Anyway, thanks for your support, I will share my experience with the antidepressant, if it works for me, perhaps it will help others too.
I wish I didn't start the treatment though, I felt normal before it and was never warned I could face long term post treatment side effects, which are almost life changing, in the bad way.
PS: Also ask your doctor to run a test for Vitamin D level. Most people have low Vit. D levels. A low Vit D level can cause a lot of symptoms. People with low Vit D levels are more susceptible to many chronic diseases.
A person is not considered to have a low Vit. D unless the level is below 30. However, that is way too low of a level for anyone.
My Rheumatologist wanted mine in the 40s, but many specialists prefer the 50s.
Mine was 28 when tested and i was already on over 3,000 units of Vit D a day. I now take 7,000 units of Vit D a day just to maintain a Vit D level of 50.
A person is not considered to have a low Vit. D unless the level is below 30. However, that is way too low of a level for anyone.
My Rheumatologist wanted mine in the 40s, but many specialists prefer the 50s.
Mine was 28 when tested and i was already on over 3,000 units of Vit D a day. I now take 7,000 units of Vit D a day just to maintain a Vit D level of 50.
Welcome to the forum. I am sorry you are having these issues.
I did 12 weeks of Incivek along with 48 weeks of Interferon and Ribavirin, so I can empathize. I finished treatment in late Aug. 2012.
With Interferon and Ribavirin, it takes at least 6 months before the medications are completely out of your system. So recovery can be slow. Then it usually takes a few more weeks or even months before a person gets back to feeling more normal.
I had skin issues during treatment and for about 2 years year after finishing treatment and still have a few skin problems on and off, although the current skin issues may be due to another problem.
Hopefully, your fatigue will gradually lessen over time. And your cognitive issues will hopefully improve over time. My fatigue did improve over time and my cognitive problems improved dramatically.
Still, it is possible that you have something else going on in addition to recovering from the treatment. Both Hepatitis C and Interferon can cause thyroid problems and they can both cause Autoimmune Disorders.
My suggestion would be to ask your doctor to run a thyroid panel to be sure that your thyroid is functioning properly. Thyroid problems can make you extremely fatigued, can affect your cognitive function, and can affect your skin.
If the thyroid panel is normal, you could ask your doctor for a referral to a Rheumatologist to examine you and assess you for Autoimmune Disorders. I would want to see a Rheumatologist for the assessment. PCPs do not know enough about Autoimmune Disorders to be able to do a thorough history, exam, and work-up. You really need a Rheumatologist to test you for everything. Autoimmune Disoreders cause severe fatigue, cognitive problems, and skin issues and can cause a host of other problems too.
To answer your questions at the end of your post, you will most likely improve. It takes time. For me, it took time, at least a year.
In addition, I was diagnosed with an Autoimmune Disorder a year after I finished treatment. My Autoimmune Disorder was triggered by Hepatitis C, and I had the Autoimmune Disorder for decades, long before I ever treated with Interferon. I just was never diagnosed until I went to a Rheumatologist a year after finishing treatment. Now i am on treatment for the Autoimmune Disorder and feel much better.
It is important that you get tested for thyroid problems and for Autoimmune Disorders because they can be treated and, if you have thyroid problems or an Autoimmune Disorder, you will feel better with treatment.
Best of luck.
I did 12 weeks of Incivek along with 48 weeks of Interferon and Ribavirin, so I can empathize. I finished treatment in late Aug. 2012.
With Interferon and Ribavirin, it takes at least 6 months before the medications are completely out of your system. So recovery can be slow. Then it usually takes a few more weeks or even months before a person gets back to feeling more normal.
I had skin issues during treatment and for about 2 years year after finishing treatment and still have a few skin problems on and off, although the current skin issues may be due to another problem.
Hopefully, your fatigue will gradually lessen over time. And your cognitive issues will hopefully improve over time. My fatigue did improve over time and my cognitive problems improved dramatically.
Still, it is possible that you have something else going on in addition to recovering from the treatment. Both Hepatitis C and Interferon can cause thyroid problems and they can both cause Autoimmune Disorders.
My suggestion would be to ask your doctor to run a thyroid panel to be sure that your thyroid is functioning properly. Thyroid problems can make you extremely fatigued, can affect your cognitive function, and can affect your skin.
If the thyroid panel is normal, you could ask your doctor for a referral to a Rheumatologist to examine you and assess you for Autoimmune Disorders. I would want to see a Rheumatologist for the assessment. PCPs do not know enough about Autoimmune Disorders to be able to do a thorough history, exam, and work-up. You really need a Rheumatologist to test you for everything. Autoimmune Disoreders cause severe fatigue, cognitive problems, and skin issues and can cause a host of other problems too.
To answer your questions at the end of your post, you will most likely improve. It takes time. For me, it took time, at least a year.
In addition, I was diagnosed with an Autoimmune Disorder a year after I finished treatment. My Autoimmune Disorder was triggered by Hepatitis C, and I had the Autoimmune Disorder for decades, long before I ever treated with Interferon. I just was never diagnosed until I went to a Rheumatologist a year after finishing treatment. Now i am on treatment for the Autoimmune Disorder and feel much better.
It is important that you get tested for thyroid problems and for Autoimmune Disorders because they can be treated and, if you have thyroid problems or an Autoimmune Disorder, you will feel better with treatment.
Best of luck.
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I agree with pooh though, ..."if you do not feel better by December (which would be a year after finishing treatment), I would still suggest seeing a Rheumatologist. "
hang in there man.
dm