I'm not a doctor but…
Cycling injury, recovery and health issues.
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Yep... finally spelling it out. Hep C has been plaguing me for over 20 years. Have been treated in 1995 (Interferon), 1998 (Interferon & Ribavrin). Unsuccessful both times.
Unlike many, the virus has really knocked me about. It has not been a matter of do I or don't I feel sick on any given day, but more about the scale of dreadful from 1-10.
So currently on treatment with the latest therapy available in OZ (Peg Interferon, Ribavirin, Boceprivir). Got my week 4 blood results and the virus is now undetectable. Only a small percentage of patients achieve this at this early stage and it is a strong indication that I will be cured at the end of treatment. 48 weeks is the expected duration but the clinic informed me today that my response may mean the treatment time will be reduced to 28 weeks.
Neutrophils and platelets are really low so riding is not on at the moment... but I plan on being back
Thanks guys. So I think I will keep this going for the duration of treatment as it may be helpful for other victims of the virus.
At the moment, I am a little fatigued and weak, but not too bad. I am surprised that the side effects have been mostly tolerable. Not so in 1995 and '98 when it was absolute horror show. Injections 3 times per week which resulted in alternating clod shivers and hot sweats and complete fatigue. Now with the new fortified Interferon and only once a week injections, it is a breeze.
Having said that, today was day one of drug number three, Boceprivir. Will see how I am after a few more days.
One issue I have which is a bit of a pain is a very dry rash on my face and scalp. Seems to be getting worse but once again, no big deal.
Is that the first sign of turning into a zombie? Oh no!! I did the quiz and it said I wouldn't survive a zombie apocalypse!!
gotta keep your sense of humour...albeit a bad sense of humour!!
Hope the treatment keeps going down the right path and you remain relatively side effect free. I got an idea...you keep improving and I won't make any more jokes
Fingers crossed. The science behind medicine has made amazing progress in the last few years in particular, hopefully the current treatment keeps things going in the right direction.
When man invented the bicycle he reached the peak of his attainments- Elizabeth West.
Well the addition of Boceprivir did not start off great. The following day was quite challenging and reminded me of the horrors of 1998. But today, the nastiness has subsided and I am back to coping with the treatment reasonably well. Guess it was just a speed bump caused by a shock to the system due to the introduction of the Boceprivir.
Unfortunately that's what happens when you get on the immuno drugs. Keep it up!
The only question I have is, how's your liver? All's "well" if you can stay off cirrhosis and associated issues.
Bianchi, Ridley, Montague, GT, Garmin and All things Apple
So the reason I started this thread was to raise some awareness around the issue. For some reason, there is a stigma attached to having the virus... who knows why ? It is an illness, not a choice. Anyhow, I have had a couple of PMs related to the thread and some questions which I have elected to address openly for the benefit of all who may be interested.
Hi Paul, I wish you all the best with your journey through treatment of Hep c. I have contacted you to ask some questions that I hope you don't mind answering. My husband was diagnosed around 2004 and has since been in denial. Fortunately he has no decline in health or symptoms of disease at this stage. He does not drink alcohol since then but was a heavy drinker before 2004. He hasn't had any of the treatment because of the horrible stories of side effects etc you have written about. I will follow your story closely.
Have you been able to work during treatment? Some people mange to work without any problem, while for others it is not an option. I worked the previous times I treated but it was extremely challenging. On this occasion I am not working and I think it would be difficult to manage.
How long do you think you will be off your bike? If treatment goes the full 48 weeks I will be off the bike for a bit over a year. My blood cell count has dropped as a response to the drugs and I have very little energy. Due to my stellar response to treatment (UND virus (AT) 4 weeks), there is some talk around reducing my treatment to 36 weeks. In that case, I will be back cycling sooner.
Do you know how long from contracting the disease you started to get sick? It is around 20 years that I have been unwell. I have an idea that I may have been infected a few months prior to the initial symptoms.
We think maybe he got it when he was 15 he is now 47.. So over thirty years and still feeling good. 30 years is a very long time to have Hep C. Much of the research I have done would suggest that cirrhosis would be evident by now. To what degree is the question. Many people have Hep C and don't experience symptoms. Not me. I got sick and the only difference each day was how bad I feel on a scale of 1-10.
Would you start treatment if you weren't feeling symptoms of the disease?? I would get down to the Hep C clinic for an initial examination. At some stage, the doctor will perform a fibroscan which measures liver stiffness from which a score is calculated. The score is a measure of the state of the liver.
Really, I would not be wasting any time. Get in as soon as possible. There are new easier treatments in the pipeline for Australia that are shorter duration and easier(already in use in the USA). But in my case, the gastroenterologist insisted I start treatment immediately in order to prevent further damage. If treatment works this time, it may be that I caught the disease just before it had progressed to something much more nasty. It can be a fine line. If I am cured I expect to have virtually full liver function and a good outlook moving forward.
Good on you. As far as the stigma goes, there are some great web resources that explain why people are so afraid of things they don't understand, like Hep C. Part of breaking the stigma is for people like yourself to speak up.
http://www.hepatitiscentral.com/mt/arch ... he_he.html
Thanks for sharing your story and I hope your treatment goes well. It certainly sounds promising.
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The stigma with HepC was similar to that on AIDS of years ago, an infection that had no direct diagnostic test and was incurable that congregated amongst the IV drug users and sexually promiscuous. Things have changed but sections of the public are slow to understand the facts. A perpetual battle.
Bianchi, Ridley, Montague, GT, Garmin and All things Apple
I've never really known what Hep C was - I don't think I've ever known anyone with it.
I did google some information about it and now understand the definition a lot better of what it is.
I'm not sure if I would've stigmatised someone with Hep C before, but knowing a little bit more about it now, I cretainly wouldn't in the future.
Blood tests for end of week 10. Hb stable - 142. Platelets continue to drop - 91. Neutrophils - .5. WCC - 1.7. RCC - 4.74.
ALT 34 & AST 38 still dropping and have been normal since first tx results at week 4.
The fact that my ALT & AST normalised so early and actually continue to trend down gives me great encouragement. Last treatment (1998) they normalised at the start and shot back up a week later.
Also my neutrophils continue to nosedive. Very happy to see that and surprised the nurse didn't start talking dose reduction. She did say she would mention it to the gastro but my next appointment is not for another 3 weeks and by then I will be at end of week 13.
I had a discussion regarding Hb given that it is not dropping. My nurse is of the opinion that my very high level of aerobic fitness has had an influence on that. I agree. Every other indication, particularly the RVR at the lead in would indicate that tx is working.
Feeling slightly crap but happy with the numbers. 11 weeks down 37 to go... What a mountain to climb.
Blood test today. As I expected, the numbers are heading south. 27 weeks completed and 21 weeks to go. Absolutely smashed. No strength or energy at all. From cycling 300kms per week to walking 500 metres a few times a day just to keep some mobilty. Legs have gone from tree trunks to twigs. With a fair time still to cover I expect further deterioration. To be honest... I can't see myself making a full comeback.
However... the medical staff who are dealing with my case are very confident, based on my blood results, that I will achieve a long term cure. The most recent PCR test for the virus (week 24) came back negative, which means I have been Hep C free fro the duration of treatment to date. A very positive sign.
So the readings from my blood tests today which are of most interest are as follows:
This is a sudden and dramatic drop relative to the gradual change I have experienced thus far. My nurse said today that it is time to dose reduce on account of the results. I just laughed and said that it is not going to happen. Anyway, she booked me in for more blood work in 2 weeks time as opposed to my normal month. She commented that the lab would probably contact the gastro direct regarding the low numbers. So it will be the start of week 30 when I do the blood, and since the clinic will be away that week, it will be week 31 by the time anyone contacts me should the results cause concern. They may insist I adopt response guided therapy (RGT)... but that is something I would be likely to resist. Having said that though, if I continue to fade at the current rate I may not have an option.
PS. Well that didn't take long. Just got a text from the clinic.Supposed to reduce Int to 110 and 2 bd of Rib. Don't know what 2bd signifies actually. Anyway, I am just going to ignore it at this stage.
My sister in law who is a medical professional commented that my low WCC and Platelets are a major concern. And that I could easily pick up an infection which could rapidly result in a potentially dangerous (fatal) outcome. Gonna take my chances and hang out for a few more weeks. Don't want to reduce the drugs. My research suggests that this could negatively impact my long term result. Other research however suggests that a temporary reduction has no impact on results.
Ironically though. My nurse tells me that at this point, due to my strong response (I am in the top percentile), that it is likely I am already cured. Go figure eh
Nice bit of news, I think but you do need to be extremely careful of picking something up. (stating the bloody obvious, I know)
I don't suffer fools easily and so long as you have done your best,you should have no regrets.
Good luck Paul
I work with clients that have hep c and see their daily battles. I'm a drug and alcohol counsellor.
Keep yourself healthy mate, stay strong. Pulling for you mate.
Do you have a counsellor also to work on the mental stuff?
Last edited by Dave-in-LK on Fri Dec 19, 2014 11:15 pm, edited 1 time in total.
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