Aa
Concern for my son
Hi all,
I have posted recently about my sons Hep c tx .
He started treatment 5 weeks ago and just seems to be getting worse all the time. The hep c nurse is on leave but even so he is not due to see her till april 3rd. He has had three blood tests the last one showing a problem due to a chest infection ? Probs with white cells etc. They repeated the blood test and put him on antibiotics.
I am really concerned as he seems so ill with the side effects , He hardly gets up and when he does he is drained by the slightest exertion. He seems very low in mood but is already on anti depressants at almost the highest dose.
When I ask him whats wrong he says everything but does not seem to be able to describe it any more than that . He says he is having panic attacks , muscle pains and keeps crying. I am at my wits end as to what to do .
Ca the side effects be causing all this ? If so I dont think he will be able to do this for 48 weeks . He has been told he has a high viral load type one .
He has changed from subutex to methadone a couple of weeks ago because he thought it would make it easier also takes cocodamol and my clonazepam . I have to limit him to two clonazepam a day although he would like to take more. I think he is trying to medicate it all away.
I am really worried that there is a problem more serious and that this is not just side effects . We have been told that if there is a problem to go to AandE (emergency room) but That seems a bit drastic , in my experience you can sit there for hours and then see some first year trainee dr who hasnt got a clue.
I am also feeling exremely stressed because I fear there is something really wrong . Has anyone else had side effects this bad ?
I know he is not mentally strong , he will take any pills that are around and was a very heavy drug user .
I have posted recently about my sons Hep c tx .
He started treatment 5 weeks ago and just seems to be getting worse all the time. The hep c nurse is on leave but even so he is not due to see her till april 3rd. He has had three blood tests the last one showing a problem due to a chest infection ? Probs with white cells etc. They repeated the blood test and put him on antibiotics.
I am really concerned as he seems so ill with the side effects , He hardly gets up and when he does he is drained by the slightest exertion. He seems very low in mood but is already on anti depressants at almost the highest dose.
When I ask him whats wrong he says everything but does not seem to be able to describe it any more than that . He says he is having panic attacks , muscle pains and keeps crying. I am at my wits end as to what to do .
Ca the side effects be causing all this ? If so I dont think he will be able to do this for 48 weeks . He has been told he has a high viral load type one .
He has changed from subutex to methadone a couple of weeks ago because he thought it would make it easier also takes cocodamol and my clonazepam . I have to limit him to two clonazepam a day although he would like to take more. I think he is trying to medicate it all away.
I am really worried that there is a problem more serious and that this is not just side effects . We have been told that if there is a problem to go to AandE (emergency room) but That seems a bit drastic , in my experience you can sit there for hours and then see some first year trainee dr who hasnt got a clue.
I am also feeling exremely stressed because I fear there is something really wrong . Has anyone else had side effects this bad ?
I know he is not mentally strong , he will take any pills that are around and was a very heavy drug user .
bignuggets - please feel free to post a new question if you would like.
looks like the original post is over 2 years old. are you contemplating treatment?
blessings
eric
looks like the original post is over 2 years old. are you contemplating treatment?
blessings
eric
Im sorry to hear your son is in so much distress right now. you said:
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He started treatment 5 weeks ago and just seems to be getting worse all the time. The hep c nurse is on leave but even so he is not due to see her till april 3rd.
I dont understand why so long between appointments. did he have a 4 weel vl test/ he needs to go back for an 8 week vl and 12 week vl test. he should also be seen at least once a month and more often if he is having so many problems. also he needs weekly blood work done to watch hgb and wb cell counts. also to look for other infections.
also sounds like if he didnt have you to take care of him he would not be able to adhere to the dosing regimen. Stick with him and just bring him small meals, water And call the doc and find out what is going on with his treatment plan! Best wishes!
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He started treatment 5 weeks ago and just seems to be getting worse all the time. The hep c nurse is on leave but even so he is not due to see her till april 3rd.
I dont understand why so long between appointments. did he have a 4 weel vl test/ he needs to go back for an 8 week vl and 12 week vl test. he should also be seen at least once a month and more often if he is having so many problems. also he needs weekly blood work done to watch hgb and wb cell counts. also to look for other infections.
also sounds like if he didnt have you to take care of him he would not be able to adhere to the dosing regimen. Stick with him and just bring him small meals, water And call the doc and find out what is going on with his treatment plan! Best wishes!
Fay..
I am a 61 year old women and was diagnosed with Hep C geno 4. I have had it foer 32 yrs. I started getting symptoms in 2006 mild bbut they were there by ernd of 2007 I was really sick blood pressure over 200 flu-like symptoms fever chills fatigue..I was diagnosed end of 2008 end stage cirrhisis of the liver and he gave 1 1/2 yrs to live with a 1in5 chance of survival with the treatment and would probable do 72 weeks. I choose not to do the therepy because of quaility of life. I did find out by going into their systom that I was mis-diagnosed and had Fibrosis not Cirrhosis, that was 3 yrs ago. I have severe Fatigue and that is what I feel like and I'm not on the treatment. All of fmy systems when they first appear are extreme, Anxiety, Panic attacks, Brain Fog, Heartburn that felt like a hear-tattack. The Fatigue is the worst it causes you to loose your ambition, ambition to do anything..and you loose your personality, hope and depression sets in all of these symptoms have become manageable but at first you don't know what;s happening and this cause anxiety and panic attacks and depression. So, even though I'm not on the treatment I'm ahving those symptoms and it is so hard to explain and you have no real desire to try all you want to do is lay in bed. I cried over nothing and have never been a crier, your brain and emotions are effected by the disease and now I suppose by the meds your son is taking. I hope that his treatment is a success and try not to worry. I hope this letter has helped you understand a little better God Bless Darcie
I am a 61 year old women and was diagnosed with Hep C geno 4. I have had it foer 32 yrs. I started getting symptoms in 2006 mild bbut they were there by ernd of 2007 I was really sick blood pressure over 200 flu-like symptoms fever chills fatigue..I was diagnosed end of 2008 end stage cirrhisis of the liver and he gave 1 1/2 yrs to live with a 1in5 chance of survival with the treatment and would probable do 72 weeks. I choose not to do the therepy because of quaility of life. I did find out by going into their systom that I was mis-diagnosed and had Fibrosis not Cirrhosis, that was 3 yrs ago. I have severe Fatigue and that is what I feel like and I'm not on the treatment. All of fmy systems when they first appear are extreme, Anxiety, Panic attacks, Brain Fog, Heartburn that felt like a hear-tattack. The Fatigue is the worst it causes you to loose your ambition, ambition to do anything..and you loose your personality, hope and depression sets in all of these symptoms have become manageable but at first you don't know what;s happening and this cause anxiety and panic attacks and depression. So, even though I'm not on the treatment I'm ahving those symptoms and it is so hard to explain and you have no real desire to try all you want to do is lay in bed. I cried over nothing and have never been a crier, your brain and emotions are effected by the disease and now I suppose by the meds your son is taking. I hope that his treatment is a success and try not to worry. I hope this letter has helped you understand a little better God Bless Darcie
I just would like to add a few more things.
Maybe the AD's he is taking are not doing there job. Sometimes one has to try a few different ones, before one finds something that works.
Also, I have been in bed for most of my treatment. Extremely weak and hardly able to go out for most of the time. And it is difficult to describe what hurts or how one feels, as it is an all over feeling in the whole body and practically in every cell of the body. It's not bad pain, but it aches every where and there is a certain tremor in the whole body, like low electricity. It is very uncomfortable verging on pain. So that it is why it is probably difficult for your son to explain. I had about two months where I was feeling a bit better, but been bedridden most of the duration of treatment. One does get used to it, one just has to be able to accept that one's life might be put on hold. The way to do it is to keep the eye on the prize. I have been telling myself that there is no way of stopping treatment. Either tx or dying from a horrible disease in a horrible way.
Maybe the AD's he is taking are not doing there job. Sometimes one has to try a few different ones, before one finds something that works.
Also, I have been in bed for most of my treatment. Extremely weak and hardly able to go out for most of the time. And it is difficult to describe what hurts or how one feels, as it is an all over feeling in the whole body and practically in every cell of the body. It's not bad pain, but it aches every where and there is a certain tremor in the whole body, like low electricity. It is very uncomfortable verging on pain. So that it is why it is probably difficult for your son to explain. I had about two months where I was feeling a bit better, but been bedridden most of the duration of treatment. One does get used to it, one just has to be able to accept that one's life might be put on hold. The way to do it is to keep the eye on the prize. I have been telling myself that there is no way of stopping treatment. Either tx or dying from a horrible disease in a horrible way.
Thankyou all so much, I feel I can cope a little better after reading all the replies. How on earth does everyone cope who is on treatment , you are all so brave.
Thanks for all the advice and support xx
Thanks for all the advice and support xx
And...... my first 8 weeks were the worst, I celebrated when I got to 12, and my body was getting used to the meds by week 16. If he notes on a calendar each day, what's happening, he'll start seeing cycles in the weeks and be a little more prepared.
The 12 weeks is the worst; I believe everyone agrees on that. The psychiatrist I saw about anti-depressants (I ended up not taking them) said to me that around week 7-ish and week 18-ish seemed to be the worst with patients he had spoken to. Week 5 was when I started to crumble with the side effects, but by week 7-8 there was a little light coming through. Good luck to you both.
The 12 weeks is the worst; I believe everyone agrees on that. The psychiatrist I saw about anti-depressants (I ended up not taking them) said to me that around week 7-ish and week 18-ish seemed to be the worst with patients he had spoken to. Week 5 was when I started to crumble with the side effects, but by week 7-8 there was a little light coming through. Good luck to you both.
Sorry to hear of the difficulty your son is going thru, but I think he did a smart thing by getting on methadone. I mean it's never a good thing to have to be on methadone and it only helps with the diaahrea, but if he's had drug problems in the past then it's best to be on something right now. I suggest you read the inserts that he gets with his injections and ribavirin so you can understand totally that this treatment is gonna be difficult for some and really difficult for others. If he feels that badly it may do him some good to get on line and talk to some ppl here, like you're doing. good luck
It sounds a bit like my tx symptoms; he has my sincere sympathies. Paracetamol really helped with aches and pains. Sleeping pills helped me sleep. Going for walks made me feel a little bettter (although I took my partner with me because I felt so fragile).
I would have tears 2-3 days after the shot when the meds peaked; I felt like there was a 'bubble' around my head and had real trouble concentrating on what anyone was saying to me. i.e. that feeling you have just before you're going to vomit, except that you know you're not going to vomit, you're just so absorbed in trying to cope with what your body is feeling.
I couldn't go into the kitchen when anyone else was there because I'd get muddled up if I had to concentrate on more than one thing at a time. If too many people made demands on me or asked me questions, I would have to retire to the bedroom. At one stage I lit a candle and just tried to concentrate on love; who I loved and who loved me. I said lots of prayers.
I couldn't watch TV or concentrate on a movie; it all seemed very trivial. I WAS able to surf this site and got a lot of relief from reading about others and their symptoms and how they managed them. I'm so very grateful to my partner and son for 'coping' by letting me hybernate.
My partner said to ask him for anything I needed, and I finally got used to asking.
I found I needed to eat lots of small meals (I hated eating but food made me feel a bit better). I guess, liken it to the worst 'flu'.
And, more than one of us has ended up at A. & E. It's not trivial to go there; quite the reverse. I went once when I thought I had a chest infection (ribaviron can cause a cough), and once when the antidepressant I tried has a negative affect. Both times, the doctors were wonderful and very empathetic; my bloods and blood pressure were checked and I was put at ease.
The worst of it was that I had to take the medication that was making me so ill, so it was long depressing marathon that required fortitude, strength and patience; both from myself and those around me.
I do feel very much for what he's going through, and hope you can remain to be available for him in the manner he needs. It's harder as a parent because we're geared to make our children feel better. I do wish you both the very best at this trying time; please let him know he's not alone, keep us updated, and never hesitate to check with your A. & E. department who will be more educated about interferon and its effects that the average local doctor is.
This tx is likened to chemotherapy, and those on this site who have experienced both say that this is worse in many ways. It is the strongest of treatments and can be a devastating experience, so treat the symptoms in whatever way you can, get as much assistance as you can, and let him know it's not him - it's the marathon from h*ll but can be worth it if you can both sustain. Prayers with you.
I would have tears 2-3 days after the shot when the meds peaked; I felt like there was a 'bubble' around my head and had real trouble concentrating on what anyone was saying to me. i.e. that feeling you have just before you're going to vomit, except that you know you're not going to vomit, you're just so absorbed in trying to cope with what your body is feeling.
I couldn't go into the kitchen when anyone else was there because I'd get muddled up if I had to concentrate on more than one thing at a time. If too many people made demands on me or asked me questions, I would have to retire to the bedroom. At one stage I lit a candle and just tried to concentrate on love; who I loved and who loved me. I said lots of prayers.
I couldn't watch TV or concentrate on a movie; it all seemed very trivial. I WAS able to surf this site and got a lot of relief from reading about others and their symptoms and how they managed them. I'm so very grateful to my partner and son for 'coping' by letting me hybernate.
My partner said to ask him for anything I needed, and I finally got used to asking.
I found I needed to eat lots of small meals (I hated eating but food made me feel a bit better). I guess, liken it to the worst 'flu'.
And, more than one of us has ended up at A. & E. It's not trivial to go there; quite the reverse. I went once when I thought I had a chest infection (ribaviron can cause a cough), and once when the antidepressant I tried has a negative affect. Both times, the doctors were wonderful and very empathetic; my bloods and blood pressure were checked and I was put at ease.
The worst of it was that I had to take the medication that was making me so ill, so it was long depressing marathon that required fortitude, strength and patience; both from myself and those around me.
I do feel very much for what he's going through, and hope you can remain to be available for him in the manner he needs. It's harder as a parent because we're geared to make our children feel better. I do wish you both the very best at this trying time; please let him know he's not alone, keep us updated, and never hesitate to check with your A. & E. department who will be more educated about interferon and its effects that the average local doctor is.
This tx is likened to chemotherapy, and those on this site who have experienced both say that this is worse in many ways. It is the strongest of treatments and can be a devastating experience, so treat the symptoms in whatever way you can, get as much assistance as you can, and let him know it's not him - it's the marathon from h*ll but can be worth it if you can both sustain. Prayers with you.
Im sorry he is having such a horrible time. I hope things level out to some degree for him and he feels better. Make sure he drinks ALOT of fluids daily. As far as the low energy issue that is VERY normal during tx due to low HGB. My moods werent good at all on tx either. SOunds like he does need some conseling as Trinity said. This is NOT an easy tx to get thru..you musttake one day at a time..sometimes one hour at a time.
My first 4 months were horrible too.
I wish you both well.
Prayers
Charm
My first 4 months were horrible too.
I wish you both well.
Prayers
Charm
"chest infection ? Probs with white cells etc. They repeated the blood test and put him on antibiotics."
What are his white cell counts? ANC, neutrophils, WBC, etc? Any type of infection can be serious while treating and antibiotics may not work if they have nothing to work with.
The emergency room may be something to consider, regardless of what you may feel the quality of care is.
Again, what are his WBCs?
What are his white cell counts? ANC, neutrophils, WBC, etc? Any type of infection can be serious while treating and antibiotics may not work if they have nothing to work with.
The emergency room may be something to consider, regardless of what you may feel the quality of care is.
Again, what are his WBCs?
Hi Fay:
I'm sorry your son is feeling so lousy. It certainly doesn't help that he got a chest infection and is on antibiotics but that does happen sometimes while on TX. I had to take antibiotics once so far while on TX and the side effects from the antibiotics, along with the TX side effects, made that the worst 10 days of my TX. But...antibiotics are necessary when there is an infection.
I'm sure the extra meds he's on because of his drug issue aren't helping the situation either but...again, they are probably necessary.
I never know how to tell my husband what feels bad when I'm feel lousy either. It's an overall feeling of crappiness and is not localized to any one thing...so, he's simply at a loss as to how to describe it -- very common.
My first 8 weeks were the worst and I had heart palps everytime I got up and moved around but I had to work so that forced me to keep going. I suspect this will get better for him as time goes.
I'm sorry I don't have a magic answer for you but, the best I can do, is to tell you to rely on your "MOM INSTINCTS" until his doc or NP can be contacted.
I wish you both the best!!
I'm sorry your son is feeling so lousy. It certainly doesn't help that he got a chest infection and is on antibiotics but that does happen sometimes while on TX. I had to take antibiotics once so far while on TX and the side effects from the antibiotics, along with the TX side effects, made that the worst 10 days of my TX. But...antibiotics are necessary when there is an infection.
I'm sure the extra meds he's on because of his drug issue aren't helping the situation either but...again, they are probably necessary.
I never know how to tell my husband what feels bad when I'm feel lousy either. It's an overall feeling of crappiness and is not localized to any one thing...so, he's simply at a loss as to how to describe it -- very common.
My first 8 weeks were the worst and I had heart palps everytime I got up and moved around but I had to work so that forced me to keep going. I suspect this will get better for him as time goes.
I'm sorry I don't have a magic answer for you but, the best I can do, is to tell you to rely on your "MOM INSTINCTS" until his doc or NP can be contacted.
I wish you both the best!!
Yes, the side effects can be that bad. He's taking a lot more meds that I don't understand and I don't know if they would be making it worse or better.
I was very sick for most of the first ten weeks. Now I'm not so sick, but I still feel crummy most of the time (at least I can eat now).
Is he drinking enough water? Can you get him up and out on a walk?
I was very sick for most of the first ten weeks. Now I'm not so sick, but I still feel crummy most of the time (at least I can eat now).
Is he drinking enough water? Can you get him up and out on a walk?
Sounds like he needs some counseling. Psychologist or Psychiatrist but counseling for sure. He's also very heavily medicated and that will skew his thinking. Don't understand why he taking Co-codamol which is a narcotic and methadone too? What's the point?
You add a couple of doses of clonazepam to the mix and wham o, life becomes altered. We all wish we could sleep or medicate our way through tx but we can't. Have to face it head on. It's hard on all of us and and he has to be mentally strong. He may not be ready for tx yet. If it were my son, I'd get some help.
Good Luck
Trinity
You add a couple of doses of clonazepam to the mix and wham o, life becomes altered. We all wish we could sleep or medicate our way through tx but we can't. Have to face it head on. It's hard on all of us and and he has to be mentally strong. He may not be ready for tx yet. If it were my son, I'd get some help.
Good Luck
Trinity
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