The second interferon injection knocked me back a bit, more than the first one.
I did the injection on Friday evening, the same as the week before. Saturday morning I went back to bed until lunchtime. I was just leaden with tiredness. Then in the afternoon we had a walk round the block for a bit of fresh air and stopped for coffee with and a chat A. By evening I was feeling a bit better.
The cleaning hasn't been done yet though.
My wisdom teeth are bothering me. They are quite sharp, and are rubbing the inside of my mouth, making an ulcer. They hadn't bothered me until I started the treatment. I wonder whether they are connected?
I've started taking the full 20mg dose of Citalopram, and have got a doctor's appointment next Friday to discuss them. I'm wondering whether a different variety might not make me want to eat so much.
We went swimming this morning, eventually. The AA had to come out restart the car - I'd left the interior light on all week and the battery was flat. That was another reason we didn't go to Tai Chi on Saturday morning. At the time it really upset me, especially because I couldn't lock the boot as the lock is electronic and I was worried that someone would steal the car. Then I realised they couldn't steal it as the battery was flat! I am blaming the brain fog for my leaving the light on. I think I turned it on just as I got out of the car, thinking I was turning it off.
We were only in the pool for 25 mins before it closed for lunch, but still better than nothing. Can rest this afternoon now.
The nurse emailed through my starting blood test results. The virus load test results aren't ready, but all the rest were fine. Even my ALT level was within the normal range, if right at the top limit.
Hope all's well with you.
Showing posts with label non-responder. Show all posts
Showing posts with label non-responder. Show all posts
Sunday, 10 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!
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?)
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