OK, so I lied. In my last post I said that I would be posting regular updates on my hep c treatment blog but things haven’t really worked out that way. I’ve been super busy at work and don’t seem to have had a great deal of spare time. Anyway, here I am. And this post will hopefully bring my story bang up to date.
Last post (week 1) I mentioned that the Telepravir was causing some pretty serious issues with my my backside. STOP reading now if you don’t want to now to what extent, and start reading again where it says ‘start’ in capitals below. I have found 3 main problems over the 12 weeks of Incivek Telepravir:
1. An itchy ass (sorry to be blunt). Yup, just a plain old itchy backside, right on the inside of my whatsit. I never imagined I would become so intimate with this part of my anatomy. Solution: a good old scratch (preferrably in private!) and application of the only cream I have found to calm things down a bit – EUTHRAX. This problem was most prominent in the first 4 weeks and has since occurred only every few days but is embarrasingly uncomfortable.
2. A flaming/throbbing ring. On occassion the area just outisde has literally flamed and throbbed. It has just been burning! This has been painful at times. Solution: Ice, or trying to go to sleep and hoping that I wake up in a better state (generally I do). This occurred regularly for the first 4-5 weeks and then became more sporadic after that. A bath also helped, but only really to mask the throbbing.
3. Blood and pain on bowel movements (Anal fissures?). Yes, quite literally. The first 4 weeks were really problematic in this regard. With all the added food intake and meds something had to give and it seemed for me it was the thin layer of skin in that sensitive region. This created raw areas which were extremely painful during number 2′s. I’m talking excruciating pain here, I had to bite down on a towel and try and get it over with asap, but even then the after shock of the pain left in a state of shock at times. Solution: well, I used vaseline to try and smoothen things out but nothing really worked. This pain eased considerably after about 6 weeks when I think the skin seemed to start repairing itself, but prior to that it was as one forum poster described: “like passing shards of glass”, I’d have to agree.
The leaflet that comes with the incivek does basically describe the exact symptoms above (but few get them – less than 30%), so I wasn’t overly concerned to have them. Whilst they were certainly unpleasant, they were not all of the time and have eased, especially after the 6 week point. The best way I found of dealing with this issue was to simply, think to myself ‘yeah this is a pain up the butt now (pun intended) but I just know I’ll look back and laugh at all this in a few short weeks time’…. and here I am doing just that!
I found loads of useful forum threads about these issues, for example here and here which were comforting in showing me that I was not alone and include some great tips for coping. I do think at first though I didn’t help myself very much by eating foods that I am not used to, to get the fat intake. this upset my stomach and aggravtaed everything. Once I reverted to foods I am more used to things settled down and started to get better. I simply ate more of what I was used to rather than eating foods that were new to me but higher in fat content.
START reading again here. Aside from the Telepravir butt issues I have been mercifully free of any major side effects! I have worked full-time, long hours and coped fine. The injections are really easy to do yourself with the cool little pen device you get and the weeks have really flown by. I think keeping busy has really helped. It would be so easy to start feeling sorry for yourself and just laze around the house all day (I know some people do get so sick they can’t move) but that would have made the time drag and made me feel miserable. I have noticed these last two weeks that the day after my injection (Saturday) I am quite sleepy, so maybe that is the meds catching up with me. However, relaxing around the house snoozing on and off is no real hardship and if sufficiently motivated I can do all the usual stuff.
As regards exercise (I’m a bit of a sportsman), I made it my goal to use this period of having to eat 20g of fat 3 times a day into a mission in putting on more muscle bulk. So, I have been hitting the gym hard and lifting heavy weights. This is part of the reason my weight has increased significantly (about 6kg in 3 months). I am a lot stronger and can lift a lot more and look more muscley, although my waist line has also suffered somewhat. I have been getting my fat from dairy products high in protein i.e. cheese, whole milk and eggs. Nightly omelette, scrambled eggs etc… have made this possible.
Aerobic exercise has been a little more tricky, whilst all my bloodwork has remained pretty good my haemoglobin took a hit and is down to 12.5 (but even that is pretty good I think). This has made it much harder to run on the treadmill. Normally I can run at 15km/hour on a 5% incline for 2 mins straight (as part of an interval training workout), however at the moment I can only really manage 13km/hour on a 1% incline. Better than nothing but a big drop in fitness levels nevertheless, it feels like the same effect as walking at high altitudes in thin air. I’m sure I’ll get back to where I was fitness-wise pretty soon after finishing treatment. Out of all of this there is one really cool positive I have noticed about this treatment, and that is that it is all only temporary. As soon as I/you stop the meds (or not too long after) things will start getting better.
Oh shoot! Nearly forgot the most important part of all of this! After 4 weeks the doc phoned and told me I had had a rapid virological response and was undetectable at week 4! Awesome news, which really spurred me on. Tomorrow however I am going for the next viral load check and if this one comes back as being undetectable too that gives me a really good chance of getting ‘cured’ (SVR – a sustained virological response) in the future. In fact, from the research I did it gives me a 92% or greater chance of attaining SVR (I’ll post the link when I find it again -probs medscape.com somewhere). It’s great that there are so many studies available for the public to be able to view and use to inform there future hep c treatment on.
Some of the practicalities of this hepatitis C treatment have been a little wearing though. Taking afternoons off work, driving an hour to the hospital, waiting for an hour to see a nurse who can’t really do anything other than take your blood and ask if you are ok – gets old pretty quick. I have also had a number of dental appointments and procedures carried out which also tightened my schedule up somewhat too, when I least needed it.
I must mention that at one point I did have great difficulty sleeping. For three nights in a row I didn’t sleep at all!!! It was ridiculous – like I had drank a pot of coffee before bed. I suspect the Ribavirin but the doc thought it was the Telepravir, either way I got some sleeping pills (Zopiclone) out of it and used them to get back into the routine of sleep and came off them after a few days. That was around week 6 and things have been fine since.
Anyway, I am having my viral load test tomorrow (Tuesday) and taking my last Telepravir pills on Wednesday. From there on I hope I get my ass back soon and I will be happy that I don’t have to eat so much and so often (although I have splurged on Snickers bars and cakes to get by at times so it is not all bad). One of the worst things is that I can’t just lay around in bed at the weekends, I have to get up and eat food take my pills at 8am and therefore cannot enjoy my lovely long weekend lay-ins so I’m really looking forward to getting them back. Also it seems that the Ribavirin doesn’t have to be taken at strict time intervals so it should be easier to just take them with morning and evening meals, so no more strict regieme to adhere too.
Alright, I think that’s me up to date on my hepatitis C treatment blog, I’m sorry it probably reads as though it is all a little mixed up, it’s basically just the way it came out of my brain. So, my conclusion so far, to anyone waiting for treatment or considering it is that it may all sound a little scary but in my experience it really hasn’t been so bad at all! My life has stayed pretty much the same and I’ve been able to plod on. Hopefully to eRVR (An extended rapid virological response) and hopefully a Hepatitis C free future!
Take care guys!
I’ll post the PCR result when I get it do a follow up on life after Telepravir soon. Any thought or comments would be greatly appreciated