19. 27 April 2013 - 8 weeks done

Yesterday was the end of week 8 of my Hep C treatment regime.

I'm feeling ok still, kind of ok, the kind of ok where you have a doctor's appointment in the morning to discuss increasing your anti-depressant dose. My head feels bleary, as my eyes are. I can't hold thoughts in the right place, they just slide off centre and fall out into the recesses of my brain before I can work with them. It's frustrating. I feel useless and like I'm always saying the wrong thing. That's pretty much the worst of it though.

I need to sleep a lot; about 10-11 hours a night to feel refreshed. Nightmares have become a regularity. One in which rats sneaked up and bit my face whenever I drifted off to sleep was a low point. I'm hoping that increasing the anti-depressant dose will at least mean that I have happier weird dreams.

I know I'd feel much better if I was sleeping more deeply, but haven't found a solution. I am sleeping, just not well.  The hospital have suggested zopiclone, but I've had it before and it made me feel worse than I feel now. Valerian helps, but I'm nervous about taking it. I looked it up on drugs.com and couldn't find an interaction with Boceprevir, Ribavirin or Interferon, so started taking it. Then I discussed it with the nurse at the hospital who pointed out that because Valerian isn't a registered medicine it won't show on the interaction databases, and the advice is not to take supplements on treatment. I'm compromising by having Valerian tea rather than the pills - as no one seems to have anything bad to say about herbal tea, only "supplements", perhaps because the active ingredients are less concentrated, or perhaps just because nobody has thought about it.

Yesterday at the gym, my 2k rowing time was about 10 mins 15 seconds - that's not far off where I was when I started, and much better than a couple of weeks ago. I had energy. I had bounce. I had joie de vivre. In my daydream interpretation of my side-effects, this is because the day before was the day when the virus died, and now my body doesn't have to deal with fighting it any more, just with the medicine.

My end of week 8 Viral Loads will support or disprove that theory. They aren't used for determining whether to continue treatment, but the FDA approved package insert shows that in the initial clinical trials, 88% of those with undetectable virus levels at week 8 went on to clear the virus, verses 43% of those where the virus was detectable at week 8. I will get my week 8 results in two to three weeks time - eek!

Other stuff which is a bit rubbish - I spend most nights in the spare bed, not snuggled up with my love. I sleep so lightly and am tossing and turning and coughing etc, that I wake him up, then he wakes me up. We both sleep better in separate beds at the moment.

I'm still severely neutropenic, and the clinic head is still putting off giving me G-CSF to stimulate my bone marrow to produce more white blood cells. Current plan, I have more blood tests on Wednesday, and if there hasn't been an improvement then I get Lenograstim.

I've also managed to persuade the nurse to give me a vitamin D test. In the end I emailed him the papers I'd found suggesting that it's important for successful treatment that your vitamin D, B and A levels are all good. Here are the studies I found:

• http://hepatitiscnewdrugs.blogspot.ca/2013/02/vitamins-magic-bullet-against-hepatitis.html
• http://www.hepctrust.org.uk/News_Resources/news/2013/April/Lo+levels+of+vit+A+and+D+associated+with+hcv+and+non+response+to+treatment
• http://www.hepctrust.org.uk/News_Resources/news/2012/January/Can+adding+vitamin+D+improve+response+to+HCV+antiviral+therapy#.UR4i5kZoNNY.blogger

Can't say I'm all that impressed with the clinic. They seem pretty average.

Tips:
- don't eat acid food (e.g. oranges, tinned peached) with your Boceprevir, take them with milk.
- exercise as much as you can;
- Aveeno bath/shower oil.

My blood test results so far

Thanks for listening. x

18. 12 April 2013 - Week 4 Viral loads and end of week 6

My week 6 blood test results from Tuesday were a little bit better than my week 4 results. They showed that I'm still neutropenic, but less so, and the clinic head has decided that for the moment we'll keep going as we are.

At week 4 my neutrophil count had dropped to 0.41, and the nurse had reduced the Interferon dose from 180mg to 135 mg. At week 6 it had increased to 0.51.

I'd emailed the nurse, hoping that they would give me G-CSF and put me back onto 180mg of interferon. I was concerned that as I hadn't been responsive to interferon the first time I did treatment, that reducing the dose would impact on my chances of the holy grail of treatment, Sustained Virological Response, or, SVR. I've been feeling a bit more poorly as well, with a runny nose and a sore throat and blocked sinuses. I hoped that with Neupogen I might feel better.

After talking to the clinic head yesterday, the nurse told me this morning that there would be no change to my medicine at the moment.  The clinic head had seen some research (I should have asked for a reference but didn't think) to show that the dosing of interferon was much less important with triple therapy than the old standard of care treatment, and so that reducing my interferon dose to 135mg would have little impact on my changes of cure.

Their "threshold" level for when to act on a low neutrophil count is 0.5, so this week I just came above the threshold. If my neutrophils drop below 0.5 then they will give me G-CSF rather than reduce my interferon dose any more. If it goes above 0.6 then I'll be put back on 180mg.

I wonder whether the timing of the test has any impact. Apparently neutrophils only live 3 days. I have my injections on Friday, so would probably be producing fewest neutrophils on Saturday, Sunday and Monday, and so have fewest on Tuesday. If I was tested on a Friday or Saturday morning, maybe I'd get a different result?

I asked the pharmacist if there was anything I could do about the discomfort in my sinuses, and she suggested steam inhalation with Olbas Oil, and that has helped. I don't feel the pressure behind my eye and it unblocked my ear.

Good news with my week 4 virus load tests. 4,785. That sounds pretty good! Unfortunately, I don't know how much of a drop that is, as the hospital lost my baseline tests. Generally my background viral loads have been around 120,000 - 150,000, although they did fall as low 13,000 when I got swine flu. Still, my week 12 viral load was 3,567 the first time I did the treatment, and I'm nearly there already. I think it's the Vitamin D3 which is making the difference.

The side effects from Boceprevir are still very mild. I felt really nauseous one evening, and took an anti-mimetic and was ok. I get a slight taste in my mouth, but it doesn't interfere with my pleasure in eating at all. I wake up wet with sweat nearly every morning, the flu like symptoms are a little worse, the aches and pains and shakiness.

This week depression has showed it's ugly mug for the first time so far. Just that back ground feeling of unease, of not being good enough, of people being not pleased with me. It's complicated by being, quite simply, more stupid than usual; and so being less sensitive to other people's feelings, less effective at work etc.

A new side effect - my eyes are so dry that they cloud over quite often. I will look into eyedrops, no pun intended.

I still feel pretty much ok though. The next milestone is my week 8 blood test. Then I'll find out how effecting adding Victrelis to the mix has been...

17. 30 March 2013 - Very mild side effects

The side effects from the Victrellis so far are very mild:
- some mild nausea that passes quickly, a bit of indigestion-like discomfort;
- a slight taste in my mouth;
- slightly increased side effects from the interferon - tiredness and fever.

I would say that I feel a bit better in some ways; less agitated, warmer - that my circulation has improved.

I have taken every dose so far with a glass of milk and one of the breakfast biscuits.

I feel very lucky and relieved to be getting away with it so lightly so far.

Off to the shop now to buy ingredients for making more biscuits...

16. 29 March 2013 - First Victrellis pills tonight...

I'll let you know how it went tomorrow.

15. 27 March 2013 - mixed and missing blood test results

Yesterday was my second appointment with the Hep C clinic nurse, my first after starting treatment.

We started off the appointment going through the side effects. He prescribed hydrocortisone cream for my knee rash, which is already helping. He was also happy to give me some anti-memitics, in case the Boceprevir makes me sick.

After going through the side effects we had a look at my blood test results from the day before, and two weeks before. My neutrophil count fell through the floor in the last test, down to 0.41; severe neutropenia. We were both shocked. Last time I did the treatment my neutrophils stayed at around 1.3, which whilst low is fairly safe. Anything under 0.5 makes you very prone to bacterial infection. The nurse thought it might well be an anomaly in the test, but of course we don't know that, so have to assume it's accurate until the next set of blood tests are in.

This was a bit of a blow to be honest. It means that I'm going to be on a lower dose of interferon (to 135, from 180), which slightly reduces my chance of successful treatment. It's also a worry generally. Now every sniffle and graze is going to be a threat. I'd just waxed my legs that morning, which is sure way of getting spots - so now I smell of TCP. I even gargled with TCP that evening - disgusting: like washing your mouth out with soap.

On the up side, I don't have anaemia; my red blood cells have increased since I started treatment. Also, although I do need to be reasonably careful to avoid infection, from what I've found on the internet, interferon induced neutropenia doesn't seem to necessarily cause serious infections and problems: e.g. http://www.hcvadvocate.org/hepatitis/hepC/Neutropenia.html. Another plus, I told the nurse that I feel that getting my blood tests regularly will motivate me, as I see them as little milestones, and he took it on I think, so hopefully he will respond in future when I ask for my results.

The next blood tests are in two weeks, and then I need to call for the results the following day. If my neutrophils have returned to a safe level the nurse will increase my interferon again.

I've bought some 1000mg vitamin C with zinc pills, and will have one every day until the tests. I'm craving fruit, and hope that I crave fruit because my body needs the vitamin C, and that taking extra will support my white blood cell count. Fishwife logic, but there isn't really a downside.

Annoyingly, the hospital lost my starting viral load tests. Nothing can be done, apparently. The sample isn't recorded as having been received by the lab, so it's not just late, it's lost. I'll have to use my viral load from the prior year as my baseline count, which was about 146,000.

I came home with a huge box of medicine, bigger than a shoe box, with the Victrelis in. I start taking it on Friday...

14. 24 March 2013 - Tough week, followed by holidays!

Last week was the toughest yet, but bearable; mainly because now I'm on holiday until after Easter! It was a hard week because I had to get all the papers ready to send out for the Assets and Finance Committee and I wasn't sleeping properly.

The ribavirin is making me agitated, which is stopping me from sleeping, even though I've been exhausted. Being both agitated and exhausted is pretty uncomfortable. Through the working day I've been confused and forgetful. I've been making little notes of what I'm doing, setting up a breadcrumb trail to keep me going the right way. Cups of tea have gone cold un-drunk, I've been dropping things, banged my head, and generally been stupid and clumsy.

Every time my boss has asked me how I'm doing I've said "I'm tired but ok". He's going to get fed up of hearing that a long time before I stop saying it.

I emailed my Hep C nurse in the week to ask for my starting viral loads and the results of last week's blood test. I also asked if it would be ok to do my week 4 viral load tests next Friday, (which is 4 weeks exactly after I started treatment), rather than tomorrow, Monday, so that it's an accurate indicator of my reaction to the interferon. He hasn't come back to me. I'm really disappointed, but not surprised. I'm seeing him on Tuesday, and I think he's got too much to do to give me that level of support. I can't be too cross;  I'm so grateful to get this medical treatment free on the NHS. They have to do a lot with the resources available. But, motivation is going to be one of the big issues on this treatment I think, and it would be motivating for me to be able to keep up to date with my test results, to monitor my progress and see how I'm doing.

By the end of last week I felt pretty low and that 48 weeks was impossibly long. Since then, being on holiday, I've been able to sleep whenever I've felt like it, and am now cheerful. I'm still going to the gym on Fridays, swimming on Sundays and yoga-ing on Mondays, which is keeping my energy levels up. My heart was doing a weird tremulous thing after swimming last Sunday though, so I did ten fewer lengths today. I've stopped drinking tea or coffee after 11.00am, which has helped a bit with in reducing the agitation.

Other side effects so far, my gums are sore, though I'm cleaning them diligently and flossing and using mouthwash. The rash on my hands has gone, the Aveeno has taken care of that, but the rash on my knees is getting worse.

I have decided on my Boceprevir routine. I'll be taking my pills at 9.30 pm; 5.30am and 1.30 pm. I've been experimenting making healthy biscuits to have with milk with my evening and night time doses. These apple and cinnamon breakfast biscuits are pretty good, especially with extra cinnamon and seeds.

This week coming up I've got the blood tests on Monday, so the results are back for my appointment at the hospital on Tuesday afternoon. On Wednesday I'm going to see a friend for lunch. Thursday, I might get my hair cut, and if the blood test clinic is shut on Friday (because of the easter bank holiday) I need to get my viral load test on Thursday too. Then on Friday I've got a personal training session at 10.

I start taking Boceprevir on Friday, which I'm very excited by. Well, it's the big thing in my life at the moment. I'm worried that it's going to make me sick though, as in vomit-y sick, especially as it will be a bank holiday weekend, so I'm not going to be able to get any help until Tuesday most likely. One of the women on the forum said she wasn't abel to keep any food down for 10 days after she started. Gurgh!
I am going to try and persuade the nurse to give me a prescription for Zofran, so I'm prepared. Are they allowed to issue pre-emptive prescriptions? I'll find out.

Other things I'd like to do this week: - plan my future over the next few years. I'm worried about having enough money to have a baby, and feel like I've been avoiding the problem as being 'too hard'. Cos it is!

Take care, have a good week.

13. 15 March 2013 - 2 weeks done & telling the team

One advantage of being a bit older doing the treatment this time is that it is flying by, along with the rest of time. A bit soon to be saying that kind of thing. But later this evening I will inject the interferon for the third time.

It's been a good week. I'd say that although I am more tired that the week before, apart from that I feel better this week: less feverish, less blue, I can concentrate better and the rash on my hands is improving.

On Monday I told the team at work about the treatment. I asked the boss to get the team together, as I want them to understand what I'm doing, especially for the days when I don't feel so hot. I told them that I was doing treatment for Hep C, a bit about the drugs, the side effects and what it entails. The Care Manager, who used to be a nurse, had some questions, which I felt was useful by immediately turning it into something that could be discussed. She asked whether it might cover my having another virus. I wonder whether she asked that because her husband is recovering from surgery, and she's concerned about catching a virus from me and taking infecting him? I told her I'd fight off any other viruses better that usual, as that's my understanding.

I thought it was best just to be straightforward about having Hep C. If I act unembarrassed about having it, I think that reduces stigma, whereas if I act ashamed, other people who know less about it than me and who have probably never thought about it before will pick up on my signals and think that the appropriate way to view Hep C is as something to be ashamed of. So, i've also been straightforward in telling the drama group the reason I've stopped going.

Last time I did the treatment I was less open. Some people found out I was doing a medical treatment, but not what for, and they were very worried about me: I assume they thought I had cancer of some kind - I wanted to avoid worrying people unnecessarily too.

Fridays are non-working days in my part-time week, and it's at the end of my treatment week too with the least effects of interferon, so I try to work out quite hard.  I did my whole usual work out, cardio and weights. I'm thinking of using my 2 kilometer rowing time as benchmark for how much energy I've got. Today it took me 10 minutes dead, which is about 10 seconds faster than last week and 20 seconds slower than my pre-treatment time. This week the whole work out felt harder though. By doing the same, I'm working harder.

I saw my GP this morning. It was a bit of a non-event as most of the side effects that I've been getting from the citalopram and the treatment have lessened. Still, it was good to check in and let her know what's going on. And they have said they want to monitor my mental state, so I am co-operating.

Then, in the afternoon, it was my second round of blood tests. Again, absolutely no drama, and no wait to go in either. I kept with the newly started tradition of coffee and cake afterwards. Then yoga nidra, put the shopping away, and it's time to make dinner already.

I'm going to try having an isotonic sports drink with my injection this evening, as it's recommended by some people on the forum. It can't hurt.

Thanks for taking the time to read this. Hope all is well with you.