I was very moved by Topper Headon's very public account of his treatment. Please take a look:
http://www.youtube.com/watch?v=U2FPH3A11eQ
Sunday 12 July 2009
Saturday 11 July 2009
How treatment was for me
There is no other way than to tell it how it is - treatment sucks. But and this is a big but - it's worth a try. Here is my account of how treatment was for me......
Just after New Year 2009 I started treatment lasting 16 weeks during which I took two ribavirin tablets daily and an injection of interferon once a week. Citalopram antidepressant (20mg) had been prescribed prior to treatment to help me cope. The Edinburgh Royal Infirmary had just reduced treatment time from 24 weeks to 16 after successful trials in Dundee showed sustained viral responses. Luck I guess – not that luck has anything to do with the nightmare I was in but fortunate all the same.
I’m not going to bore you with a blow by blow account so here is a summary of how it went.
The first subcutaneous injection into my tummy didn’t hurt at all and the tablets appeared to have no adverse effects the first week but this was a false sense of security as in the second week I felt literally hammered with fatigue and flu-like symptoms. I also found it hard to concentrate on anyone or anything even forgetting whether I’d taken my morning and evening tablets or not. So bought one of those pill trays that clearly shows if the tablet has been taken. Only week 2 and a wreck already!
I must have been scratching my neck and shoulders in my sleep as I woke up each morning with cuts from my nails which were promptly cut and filed very short – pity, loved my long nails. Early viral response in week 4 which means no detectable virus in blood- it’s working its working!
Getting up in the morning was extremely difficult, could lie for hours – time meant nothing. I rotated the injection sites – right hand side of tummy right thigh, left hand side of tummy left thigh and so on,. The sites stayed very red and itchy. As time went on the injections began to hurt. I don’t know why I had difficulty taking the caps off the needles but managed to snap a syringe in week 6.
I started putting off my morning pill as I had a window of clarity and wakefulness after I got up which sunk away again after the tablet and had to crawl back to bed. The Citalopram antidepressants exacerbated the fatigue, I reckon, so I was sleeping my way through treatment- fantastic wild dreams!
A big factor was that I couldn’t eat. I had no appetite, no taste, felt nauseous – weight down to 50 kilos –normally 58 kilos. I felt ancient, and couldn’t get up the stairs to my fourth floor flat without rests!Memory was hopeless (I can write this as I kept a diary). I had no interest in books, television, other people – sank into my own twilight world.
I managed to tell myself I wasn’t going mad, just suffering from a drug induced state, so by week 9 I made a huge effort and started functioning for short periods of time through out the day. I knew my limitations and met friends or shopped which helped my state of mind and cheered me up a bit. I was told I was looking well so couldn’t be so bad, I supposed.
Skin remained very itchy and hair started falling out – the car seats were covered in blonde hairs! As I have very thick hair it wasn’t noticeable but upsetting all the same, especially as I gathered handfuls of it out of the shower plug.
My head sometimes felt it was going to burst and so so dizzy. Anxious feelings and depression came and went with irrational thinking – definitely not a good time to make decisions.Drank liters of orange juice, and fruit was all that I could swallow.
In week 15 my neutrophil counts plummeted which meant my immune system was weak so had to miss out an interferon injection and administer 2 injections of Filgraston over 2 weeks to boost the white blood cells. Thank God this happened at the end as this can make treatment not so successful when the body doesn’t cope anymore.
Week 16 – treatment completed. Off the drugs and immediately started to feel better. Appetite gradually came back and itching stopped. Feeling of lowness still lingered, but much perkier and stronger every day.
My attitude is – I’m cured. Won’t know for sure until November 2009 and some side effects are still lingering such as thinner hair and low weight. I still feel bit low (no more antidepressants for me) but I have been assured that in time I’ll get back to normal – whatever that is!
Just after New Year 2009 I started treatment lasting 16 weeks during which I took two ribavirin tablets daily and an injection of interferon once a week. Citalopram antidepressant (20mg) had been prescribed prior to treatment to help me cope. The Edinburgh Royal Infirmary had just reduced treatment time from 24 weeks to 16 after successful trials in Dundee showed sustained viral responses. Luck I guess – not that luck has anything to do with the nightmare I was in but fortunate all the same.
I’m not going to bore you with a blow by blow account so here is a summary of how it went.
The first subcutaneous injection into my tummy didn’t hurt at all and the tablets appeared to have no adverse effects the first week but this was a false sense of security as in the second week I felt literally hammered with fatigue and flu-like symptoms. I also found it hard to concentrate on anyone or anything even forgetting whether I’d taken my morning and evening tablets or not. So bought one of those pill trays that clearly shows if the tablet has been taken. Only week 2 and a wreck already!
I must have been scratching my neck and shoulders in my sleep as I woke up each morning with cuts from my nails which were promptly cut and filed very short – pity, loved my long nails. Early viral response in week 4 which means no detectable virus in blood- it’s working its working!
Getting up in the morning was extremely difficult, could lie for hours – time meant nothing. I rotated the injection sites – right hand side of tummy right thigh, left hand side of tummy left thigh and so on,. The sites stayed very red and itchy. As time went on the injections began to hurt. I don’t know why I had difficulty taking the caps off the needles but managed to snap a syringe in week 6.
I started putting off my morning pill as I had a window of clarity and wakefulness after I got up which sunk away again after the tablet and had to crawl back to bed. The Citalopram antidepressants exacerbated the fatigue, I reckon, so I was sleeping my way through treatment- fantastic wild dreams!
A big factor was that I couldn’t eat. I had no appetite, no taste, felt nauseous – weight down to 50 kilos –normally 58 kilos. I felt ancient, and couldn’t get up the stairs to my fourth floor flat without rests!Memory was hopeless (I can write this as I kept a diary). I had no interest in books, television, other people – sank into my own twilight world.
I managed to tell myself I wasn’t going mad, just suffering from a drug induced state, so by week 9 I made a huge effort and started functioning for short periods of time through out the day. I knew my limitations and met friends or shopped which helped my state of mind and cheered me up a bit. I was told I was looking well so couldn’t be so bad, I supposed.
Skin remained very itchy and hair started falling out – the car seats were covered in blonde hairs! As I have very thick hair it wasn’t noticeable but upsetting all the same, especially as I gathered handfuls of it out of the shower plug.
My head sometimes felt it was going to burst and so so dizzy. Anxious feelings and depression came and went with irrational thinking – definitely not a good time to make decisions.Drank liters of orange juice, and fruit was all that I could swallow.
In week 15 my neutrophil counts plummeted which meant my immune system was weak so had to miss out an interferon injection and administer 2 injections of Filgraston over 2 weeks to boost the white blood cells. Thank God this happened at the end as this can make treatment not so successful when the body doesn’t cope anymore.
Week 16 – treatment completed. Off the drugs and immediately started to feel better. Appetite gradually came back and itching stopped. Feeling of lowness still lingered, but much perkier and stronger every day.
My attitude is – I’m cured. Won’t know for sure until November 2009 and some side effects are still lingering such as thinner hair and low weight. I still feel bit low (no more antidepressants for me) but I have been assured that in time I’ll get back to normal – whatever that is!
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