So that's the first week of treatment over. One week done, fortyseven to go. I'm still in the lead in phase, so just on interferon and ribavirin so far.
Side effects so far:
- generally itchy and sensitive skin, tickly face, (mild);
- rash on my hands and swollen knuckles, (mild);
- low mood and confidence, (mild to moderate on some days);
- feeling feverish and sweating more than usual, especially at night and in the gym, (again mild);
- tiredness, especially on working days when I'm out and about. By early afternoon I'm ready to go home, but have managed to fulfil my hours this mini-week, just two days nine to five., (mild so far);
- all my usual aches and pains are a bit worse, e.g. my aches in my hip and feet (poor old lady), (mild);
- difficulty concentrating! e.g. on Thursday I dated a contract 2011. Oops., (mild to moderate);
- busy brain and difficulty sleeping, (mild);
- constantly wanting to eat (I think that's the anti-depressants rather than the Hep C medication).
So, not too bad really.
The adult theatre group with the Old Vic was too much for me, sadly, and I've pulled out of the performance which is on the 28th of March. I can't imagine going on stage at the moment. I'd be frightened, and it wouldn't be fun, so I don't see the point in putting the extra pressure on myself and risk letting the group down. I am really sad to have given it up though. It was so much fun, we laugh a lot, and I will miss all my buddies in the group. Still, I am thankful that I feel as well as I do.
Aveeno handcream is excellent. It's a medicated handcream, designed for eczema etc. It relieves the itching on my hands as soon as I put it on.
Going to the gym this morning has made me feel miles better. I was able to do almost as much as usual, say 80% effort. My mood is hugely improved. The more I did the better I felt.
Now time for a snooze...!
Friday, 8 March 2013
Sunday, 3 March 2013
9. 3 March 2013 - Day 3, Feeling good
I slept straight through last night with no problems, so I'll keep taking the second dose of ribavirin in the late afternoon rather than the evening.
Yesterday I managed to do all the usual cleaning, if a bit more slowly than usual.
I had a warm bath, rather than my usual lobster boiler, and was good and moisturised afterwards as promised.
I don't even feel like I need any paracetamol this morning.
Off to meet my brother for a day in town!
Yesterday I managed to do all the usual cleaning, if a bit more slowly than usual.
I had a warm bath, rather than my usual lobster boiler, and was good and moisturised afterwards as promised.
I don't even feel like I need any paracetamol this morning.
Off to meet my brother for a day in town!
Saturday, 2 March 2013
8. 2 March 2013 - Fine so far
I am really pleased with how well I've felt since I took the first doses. I know it's very early yet.
The injection pen for the interferon is great! It didn't hurt at all.
I have been a bit achey. All the usual aches and pains - in my hip, in my feet - are amplified. I took a couple of ibuprofen last night as it was stopping me getting to sleep, but it's not a problem.
I woke in the night twice, and couldn't get back to sleep for a couple of hours the second time. My relaxation CDs didn't send me off as they usually do. My brain was too busy and I was hot. However, thinking about my perfect bathroom layout seemed to do the job, so I'm not that tired today as I could sleep in, it being a Saturday.
I think I will try and take the ribavirin earlier, about 4pm rather than with dinner at 7pm, as I've heard that can help with sleeping through.
Saturday mornings are Tai Chi. I went this morning as usual, and enjoyed it just as usual.
I've got enough energy to do the cleaning, sadly.
The injection pen for the interferon is great! It didn't hurt at all.
I have been a bit achey. All the usual aches and pains - in my hip, in my feet - are amplified. I took a couple of ibuprofen last night as it was stopping me getting to sleep, but it's not a problem.
I woke in the night twice, and couldn't get back to sleep for a couple of hours the second time. My relaxation CDs didn't send me off as they usually do. My brain was too busy and I was hot. However, thinking about my perfect bathroom layout seemed to do the job, so I'm not that tired today as I could sleep in, it being a Saturday.
I think I will try and take the ribavirin earlier, about 4pm rather than with dinner at 7pm, as I've heard that can help with sleeping through.
Saturday mornings are Tai Chi. I went this morning as usual, and enjoyed it just as usual.
I've got enough energy to do the cleaning, sadly.
Friday, 1 March 2013
7. 1 March 2013 - First day of treatment
Today has been a bit of a non-event, after the long build up. It's 6pm and I'm yet to take any medicine.
My appointment with the nurse was at 10.30, but I didn't see him until 11.45, and didn't get out of the appointment until 12.30.
The nurse was very helpful, knowledgeable and professional, but seemed down-beat. Generally I got the impression that all is not well at the hospital, and staff are demotivated, that maybe the leadership isn't very good.
The nurse threw me completely at the end of the appointment by - after we'd gone through all the medication, using the injection pen, managing side effects, the lot - bringing up the prospect of not doing the triple therapy and going on a clinical trial starting in May instead. The consultant had written a note on my file saying that I'd probably qualify and the new drug might give me a better chance of clearing the virus. The nurse also thought the trial might be a shorter treatment. So he called the clinical research team and they weren't about, and then the clinic head, and she wasn't available, so I left the appointment not knowing whether I was going to do the treatment or not. He said to carry on as if I was, and he'd call me in the afternoon with more information on the trial.
So it was off to the pharmacy to collect my prescription of four weeks Ribavirin and Interferon; and then for blood tests.
The blood tests were much quicker than usual. Sometimes my blood is reluctant to go into the vials, but I'd been to the gym in the morning, and took water with me and kept hydrated, and the blood tests were no trouble at all. I didn't feel dizzy or faint afterwards either, so I'll try that again. I did go for coffee and cake after the appointment anyway though, as I had promised myself, and it's important to keep promises (any excuse for cake).
The nurse called whilst I was eating said cake, and told me the clinical trial would start in August, not May, and I might not get on it, and it might be 48 weeks treatment length anyway, so I've decided to go ahead with the current triple therapy. I've decided to assume it's going to work, with the vitamin D3 supplements as well. I'll take my first 2 Ribavirin with dinner and have my first injection this evening. I'll let you know how it goes tomorrow.
I've bought coloured stickers, to stick in my diary to keep track of every drugs dose I take. The pharmacy won't give out the weekday drug trays for Hep C treatment. Apparently the level of cognitive impairment isn't severe enough.
I've been feeling a bit feverish the past few days, like I felt when I first got Hep C. I've been wondering whether it's because of the vitamin D3, that my immune system has kicked up a gear already in fighting the virus.
Promises I have made to myself, to stick to throughout the treatment:
- I will always moisturise my skin after every bath and shower;
- I will drink at least 2.2 litres of water every day;
- I'm going to try and feel as well as I can. I'll take paracetamol, and any other palliative medicines to manage the side effects and make it as easy as possible. (Last time I was guilty of not tackling the side-effects as I felt that feeling worse meant that the treatment was working better.)
- I will body brush once a week (may help remove toxins?)
My appointment with the nurse was at 10.30, but I didn't see him until 11.45, and didn't get out of the appointment until 12.30.
The nurse was very helpful, knowledgeable and professional, but seemed down-beat. Generally I got the impression that all is not well at the hospital, and staff are demotivated, that maybe the leadership isn't very good.
Information the nurse confirmed:
- I'll be doing 48 weeks treatment, as a prior non-responder.
- My chances of clearing the virus are about 30%.
- If the interferon freezes in the fridge I need to get it replaced (our fridge is temperamental).
- I'll be going back for more blood tests in two weeks, then for blood tests and the next clinic in three-and-a-half weeks.
- I can take up to 2000mg of paracetamol a day safely.
- They have access to a psychiatric team, if I get really depressed.
- I am likely to get brain fog, cognitive impairment, because of the interferon, which he thinks will probably effect my work.
- They don't give epoetin/procrit for managing anaemia, except as a short term rescue to allow continuation of the treatment. Generally they reduce ribavirin as a first step, because the epoetin is expensive.
- I have to be very assertive about checking that any other medicine prescribed to me whilst I'm on the treatment is not contraindicated. E.g. some antibiotics could cause serious problems when combined with Boceprevir, and not all GPs are familiar with the new drugs.
The nurse referred me to www.drugs.com to check any interactions. I checked the contraceptive I take for endometritis, and it is contraindicated, as it might be reduced in concentration and effectiveness and might not be a reliable contraceptive. I don't think that will be an issue for the endometritis though? I'll ask my GP. I know to use two other methods of contraception to prevent pregnancy on the treatment.
The nurse threw me completely at the end of the appointment by - after we'd gone through all the medication, using the injection pen, managing side effects, the lot - bringing up the prospect of not doing the triple therapy and going on a clinical trial starting in May instead. The consultant had written a note on my file saying that I'd probably qualify and the new drug might give me a better chance of clearing the virus. The nurse also thought the trial might be a shorter treatment. So he called the clinical research team and they weren't about, and then the clinic head, and she wasn't available, so I left the appointment not knowing whether I was going to do the treatment or not. He said to carry on as if I was, and he'd call me in the afternoon with more information on the trial.
So it was off to the pharmacy to collect my prescription of four weeks Ribavirin and Interferon; and then for blood tests.
The blood tests were much quicker than usual. Sometimes my blood is reluctant to go into the vials, but I'd been to the gym in the morning, and took water with me and kept hydrated, and the blood tests were no trouble at all. I didn't feel dizzy or faint afterwards either, so I'll try that again. I did go for coffee and cake after the appointment anyway though, as I had promised myself, and it's important to keep promises (any excuse for cake).
The nurse called whilst I was eating said cake, and told me the clinical trial would start in August, not May, and I might not get on it, and it might be 48 weeks treatment length anyway, so I've decided to go ahead with the current triple therapy. I've decided to assume it's going to work, with the vitamin D3 supplements as well. I'll take my first 2 Ribavirin with dinner and have my first injection this evening. I'll let you know how it goes tomorrow.
I've bought coloured stickers, to stick in my diary to keep track of every drugs dose I take. The pharmacy won't give out the weekday drug trays for Hep C treatment. Apparently the level of cognitive impairment isn't severe enough.
I've been feeling a bit feverish the past few days, like I felt when I first got Hep C. I've been wondering whether it's because of the vitamin D3, that my immune system has kicked up a gear already in fighting the virus.
Promises I have made to myself, to stick to throughout the treatment:
- I will always moisturise my skin after every bath and shower;
- I will drink at least 2.2 litres of water every day;
- I'm going to try and feel as well as I can. I'll take paracetamol, and any other palliative medicines to manage the side effects and make it as easy as possible. (Last time I was guilty of not tackling the side-effects as I felt that feeling worse meant that the treatment was working better.)
- I will body brush once a week (may help remove toxins?)
Saturday, 16 February 2013
6. 16 Feb 2013 - SSRI's sleepless night
First night's sleep lost to the treatment. Taking that SSRI yesterday has got my brain overstimulated, I've been awake since three. Was too hot, and my brain feels buzzy. I'm sure I will get used to them soon.
The view on the Hep C forum is that taking vitamin D3 supplements is not contraindicated with Boceprevir, so I'll start on them as soon as they arrive.
The view on the Hep C forum is that taking vitamin D3 supplements is not contraindicated with Boceprevir, so I'll start on them as soon as they arrive.
Friday, 15 February 2013
5. 15 February 2013 - Vitamin D better than Boceprevir? and, feeling calmer.
I started taking anti-depressants today, to fortify my brain chemicals to face the onslaught of interferon. The Hep C consultant told me to ask for the weakest strength, 10mg, but when I was in the appointment with the doctor I forgot, so I’ve got the 20mg and am taking half. Last time I took these they made me fat and killed my sex drive, I hope that won’t happen if I can manage on 10mg.
There’s an article on the Hep C Trust website which shows adding Vitamin D supplements to the standard therapy (of peg. interferon and ribavirin) as increasing SVR levels from 42% to 86%. Hepatitis C Trust | January | Can adding vitamin D improve response to HCV antiviral therapy?
That’s better than Boceprevir (although it was a smallish trial). (Wikipedia says Boceprevir has SVR rates of 75% - 66% for the fixed term therapy.) The subjects took 2000 IU/d / 50μg vitamin D3 per day, as well as the standard therapy. That seems to be twice the strength of the max strength tablets, or 10 times the recommended daily amount.
I’m going to get some strong vitamin D supplements, and start taking them straight away. I can ask the nurse about them at the appointment in a couple of weeks.
Last week I was feeling really panicky and frightened, but this week I’m much calmer. Being worried and frightened was part of the preparation I think, something I just had to go through. I’m better prepared at work now, I'm a bit ahead, so can move my focus onto myself without guilt.
My brother sent me a lovely supportive email (eventually). Given that he took 10 days to get back to me, I am not sure he’s not one to call on in an emergency but it makes so much difference knowing he's there. A. is being supportive, listening and asking questions, which is also a big comfort, knowing he’s on board.
I am going to see my parents this weekend. I wonder whether it will be the last time this year, if I can't face the drive (they are 2 and half hours away) once I’m on the medication.
The pace is picking up now. 2 weeks to the start line.
Friday, 1 February 2013
4. 1 February 2013 - A month to go until I start the treatment
I have too much time to think about starting, and it is building my fear of the treatment. It's kind of like hanging about at the top of a cliff looking down, but not launching your glider. Vertigo.
I am worried that I don't have enough support.
It was Grandma's birthday last weekend, and mine last week, and we met for our annual joint birthday get together. I was awake at 3 in the morning, unable to sleep, and distressed, scared. I realised it was because I had been looking forward to seeing my brothers, Aunt and Uncle, Mum and Dad, to recharge my courage from their support; but when it came to it I didn't mention starting the treatment. I looked around the dinner table, at everyone talking superficial pleasantnesses and thought, this is what this weekend is for, not for getting attention and support for me.
I get cross when I'm with the aunts and uncles, that we aren't closer, that our relationship isn't realer. They do know I have Hep C, and they are aware I did the treatment before. Mum doesn't want me to talk about it though. I think because it takes her back to the time when I got it, all that unpleasant craziness. And my main loyalty is for Mum, so if she doesn't want it mentioned, I let it go. I don't know if it's the right thing to do though.
Anyway. At 3 in the morning, I was really upset, crying on the bathroom floor with my need to be able to be myself, and be accepted by my family. I realised it was unrealistic, and that they were there to have a nice time, not to look after me. But I decided that I was going to look after me, and came back home to A. That was not a 'done thing to do', but I did it, I left early. I wonder if there will be any fallout.
My Aunt texted to say she wants to come and visit. I don't want to tell her about the treatment now, because it will only make her doubly determined to visit, to look after me. But she's a stressful visitor, nothing is right for her, and things have to be her way. (Mum says I'm just like her, only when she's cross with me.) So I've not responded to my Aunt's text, and that's not polite, but I just don't know what to say.
I've emailed both my brothers this week telling them I'm starting the treatment, and heard nothing back from either of them. I asked G to be back up support, just in case, as he's physically closest. Email silence. I'm feeling sorry for myself now writing this!
My dear friend J has sworn she's there for me any time, but that's just silly. She lives on the other side of the country, has two children under 3 and a teenager to take care of, and a stroppy husband.
A will be looking after me. So long as he doesn't start drinking again. A is addicted to alcohol. He's been sober for nearly a year now. When he drinks he makes Mr Hyde look reasonable and caring. But at he moment he's dear Dr Jekyll, and wants to stay that way.
Last Friday I spent all morning reading the posts on the Boceprevir thread, in the HCV support forum http://hcvsupport.org/forum/index.php?topic=2472.0. That was what got me really scared. Tales of cracked tongues from all mucous membranes turning sahara like, anaemia, depression, exhaustion. I don't want to do it!
And the new treatments look so good. 80% cure rates for null responders, not the 40% achieved by Boceprevir. And no interferon. I am going to put myself through this, 48 weeks of feeling ill, all for a dream to be able to start a family, which is a long way off being a plan. A is not in a position to promise anything. Still, if I don't try, it definitely won't happen, and I do dearly want a family.
Thanks for listening to my rantings, cyberverse. See you again soon.
I am worried that I don't have enough support.
It was Grandma's birthday last weekend, and mine last week, and we met for our annual joint birthday get together. I was awake at 3 in the morning, unable to sleep, and distressed, scared. I realised it was because I had been looking forward to seeing my brothers, Aunt and Uncle, Mum and Dad, to recharge my courage from their support; but when it came to it I didn't mention starting the treatment. I looked around the dinner table, at everyone talking superficial pleasantnesses and thought, this is what this weekend is for, not for getting attention and support for me.
I get cross when I'm with the aunts and uncles, that we aren't closer, that our relationship isn't realer. They do know I have Hep C, and they are aware I did the treatment before. Mum doesn't want me to talk about it though. I think because it takes her back to the time when I got it, all that unpleasant craziness. And my main loyalty is for Mum, so if she doesn't want it mentioned, I let it go. I don't know if it's the right thing to do though.
Anyway. At 3 in the morning, I was really upset, crying on the bathroom floor with my need to be able to be myself, and be accepted by my family. I realised it was unrealistic, and that they were there to have a nice time, not to look after me. But I decided that I was going to look after me, and came back home to A. That was not a 'done thing to do', but I did it, I left early. I wonder if there will be any fallout.
My Aunt texted to say she wants to come and visit. I don't want to tell her about the treatment now, because it will only make her doubly determined to visit, to look after me. But she's a stressful visitor, nothing is right for her, and things have to be her way. (Mum says I'm just like her, only when she's cross with me.) So I've not responded to my Aunt's text, and that's not polite, but I just don't know what to say.
I've emailed both my brothers this week telling them I'm starting the treatment, and heard nothing back from either of them. I asked G to be back up support, just in case, as he's physically closest. Email silence. I'm feeling sorry for myself now writing this!
My dear friend J has sworn she's there for me any time, but that's just silly. She lives on the other side of the country, has two children under 3 and a teenager to take care of, and a stroppy husband.
A will be looking after me. So long as he doesn't start drinking again. A is addicted to alcohol. He's been sober for nearly a year now. When he drinks he makes Mr Hyde look reasonable and caring. But at he moment he's dear Dr Jekyll, and wants to stay that way.
Last Friday I spent all morning reading the posts on the Boceprevir thread, in the HCV support forum http://hcvsupport.org/forum/index.php?topic=2472.0. That was what got me really scared. Tales of cracked tongues from all mucous membranes turning sahara like, anaemia, depression, exhaustion. I don't want to do it!
And the new treatments look so good. 80% cure rates for null responders, not the 40% achieved by Boceprevir. And no interferon. I am going to put myself through this, 48 weeks of feeling ill, all for a dream to be able to start a family, which is a long way off being a plan. A is not in a position to promise anything. Still, if I don't try, it definitely won't happen, and I do dearly want a family.
Thanks for listening to my rantings, cyberverse. See you again soon.
Subscribe to:
Posts (Atom)